The Throat Punch
It has been an excessively long time since my last post. Between a growing kid and sick parents, time flies quicker than you’d expect. I was doing better, better than I had been in a long time. I was able to do mild exercise on a recumbent bike. I was able to go places… movies, restaurants, my kid’s school plays, theme parks with a wheelchair. I even began to do some very light cooking for the first time in my life without fainting. I wasn’t feeling “good” by any means, because you never truly feel “good” with NCS, but I was managing. I was semi-functional.
Five weeks ago I woke up in hell. I was in a really deep sleep, and there was a loud noise in my house, and I startled awake. The room spun in circles, and within seconds I had fainted. Even when I eventually regained consciousness, the room was still spinning, I was still in a syncopal episode like I was mid-faint and my body couldn’t decide if it wanted to go through with it or not. The nausea was worse than all of the morning sickness while I was pregnant combined. I couldn’t move. I couldn’t lie down. Couldn’t sit up. Certainly couldn’t stand. All I could do was pray for it to stop. In the 16 years I had POTS/NCS, I had never experienced anything like this before, and it wouldn’t go away. I managed to faint and twirl my way to three doctors over a two week period, and call the doctor I see at the Mayo Clinic. ALL of them assumed it was a particularly bad NCS/POTS episode. One finally told me he didn’t know what to do with me and sent me to the ER. Before the ER, for two and a half weeks, I was non-functional all day, crying out of fear and frustration into my pillow every night. When was it going to end? When was it going to stop? I couldn’t take it. Constant fainting, spinning, nausea. Going to sleep was even worse than being awake. That’s when the spinning kicked up another few notches. My poor husband had no idea what to do with me or how to help. It was like all of my meds came to a decision to stop working simultaneously, and then my body said, “Hey! I want in on this! Let’s make her feel like she’s on a severely rocking boat too!” So while my head spins in circles, I feel like I’m bouncing up and down on gigantic waves while also rocking back and forth. Every time the boat goes up, I get lightheaded, then it comes down, and I feel pressure. Up and down, up and down, side to side, spin, lurch! Twenty four hours a day, seven days a week, non stop, constant. Hell. Plain and simple.
The ER doctor had no idea what to do with me either. I got IV fluids that did absolutely nothing to ease my hell. I got admitted that night. Saw half a dozen doctors who screwed up my meds, told me it was in my head, decided it was caused by anxiety, and completely dismissed me. Then, finally, a cardiac arrhythmia specialist walks in. He takes one look at me and says, “Didn’t anyone tell you that you have Vertigo?” …. Um, NO! Not one of those doctors thought that MAYBE… MAAAAYBE something else was going on besides my POTS/NCS. That MAYBE all these symptoms I very clearly told them I’ve never had before could possibly be caused by a secondary issue. That MAYBE it wasn’t psychogenic.
That’s the crux with an invisible illness, isn’t it? You can say exactly what you’re feeling, but if it’s not visible, if it’s not something that can be seen with eyeballs, if tests doctors were expecting to be positive come out negative… you’re dismissed. You’re crazy. You’re stressed. Well, HELL YES I’M STRESSED! I’m stressed because something is very wrong with me and not one doctor could explain why. I’m stressed because I spent two and a half weeks feeling like I’m dying and the best they can do is another neurologist telling me it’s in my head. IT’S NOT IN MY FUCKING HEAD. How many times have people with POTS, people with NCS, people with VVS, people with Dysautonomia, people with invisible illness… How many times have we all been told it’s in our heads? How many doctors have misdiagnosed us because their education is lacking? Because they’ve never heard of our conditions before, and instead of admitting they don’t know what they’re doing, their egos come to the conclusion that it’s the patient’s fault? How many doctors think we just need to loose a little weight? How many doctors look at a woman with these conditions and still think it’s the Stone Ages and that women are hysterical and high strung? How many times am I going to sit there and look a doctor in the face and allow him to cause me to doubt myself? I’m not. No more. I knew something was wrong, and it took 8 doctors till I finally found the one with a brain who was able to diagnose it.
I was put on meclizine for the vertigo. It’s been a couple weeks, and I’m still in hell, but it’s a milder version of hell. The hell you go to for lying and cheating instead of the hell for murdering. I’m not having the nausea anymore, which is a tremendous burden off me since I can actually eat something now. The spinning + rocky boat sensations are still going strong, but it does lessen at times. I’m still feeling fainty, but again, it’s not as constant as it was. No test in the hospital was able to identify the cause of the vertigo, but it could be anything from an amusement park ride I went on three months ago, to genetics. Apparently my father had vertigo for a year when he was my age, and my aunt has it on and off as well. Sometimes it goes away, sometimes it comes back, sometimes it goes and comes in waves. I honestly never thought I would find myself wishing I was back to where I was; that all I had to worry about was a severe case of NCS and POTS. The vertigo is an enigma. I don’t know how it’s going to effect my life now that it’s part of it. I don’t know if it will ever go away completely, if it will lessen, worsen, or go and come back. I don’t know how long it’s going to last. So far it’s been 5 hellish weeks. But now, at least there is a sliver of hope. I’ve made an appointment with that doctor who diagnosed it, whom I can’t stop blessing every time I think of him. The appointment isn’t for another week and a half, and I can honestly say that I’ve never been more excited to go to a doctor in my life. He said that there are new treatments and medications for POTS/NCS that he’d like to try with me. I haven’t heard the term “new” for treatment possibilities in a long, long time.
So yes, I had a punch to the throat. I thought that was the end, that my functional life was officially over. Now? Now I feel like sharing that punch to the throat with the lovely doctor from the hospital who told me it was in my head. I feel like I can breathe again.
So the next time you lose hope, the next time a family member, a friend, or a doctor, refuses to see your invisible illness… You take your pills, you take your salt tablets, you drink your Gatorade, and you stand your ground.
*Found this little inspiring beauty of a meme on FB, and I believe it will resonate with you as much as it did for me.
The (Not So) Progression of Science
Women are known for “faking it.” What do women fake, you ask? The opinion for most men would be that women fake orgasms, followed by headaches so that women don’t need to bother faking orgasms. The opinion most widely held for women would be that women fake their feelings, particularly concerning friendship. They pretend to like someone, when in fact, they don’t. For most doctors, their answer would be the symptoms associated with Neurocardiogenic Syncope, POTS, and other disorders under the mothership of Dysautonomia.
In the past, doctors decreed women often (about 25% of the female population) suffered from bouts of “Hysteria”. Women would show up with symptoms, mainly consisting of fainting, nervousness, irritability, insomnia, shortness of breath, and my favorite, “a tendency to cause trouble for others.” In reality, it was simply a name to be given to a multitude of complaints that physicians at the time didn’t understand and refused to admit they didn’t understand it. ‘What?! You’re a woman who is stressed AND overworked?? Unheard of! It must be Hysteria! Nurse! Procure my vibrator, stat!’
How many women were misdiagnosed or believed to be faking symptoms, with the result of a doctor’s inappropriate manipulation and then sent on their way? Today is hardly any different. We believe that we are living in a new class of civility from previous centuries because of scientific evolution and progression of knowledge and technology. The truth is that we still know very little, and the truth is also that most doctors still refuse to admit to this. Instead of calling what they don’t understand “Hysteria”, they are now calling it anxiety or mental illness.
People with symptoms associated with Dysautonomia have all been told at least once by a medical professional that it is all in their heads, that they are suffering from anxiety or depression that is causing them to believe what they are experiencing is real when it is not, or that for one reason or another, they are faking it.
Okay. Fine. Let’s look further into the MD’s train of thought. Why would someone fake symptoms?
– A cry for attention.
– Wanting to get out of a commitment.
– Having issues with school, work, or friendships.
– Emotional or mental instability.
I have been living with NCS / POTS for over a decade now, and I have been accused of all of the above. Time passes, but some things always stay the same. Before I was diagnosed, I had a doctor ask me, “Do you like school? Do you have friends?” I was told it’s all in my head. That was 11 years ago. Medicine has evolved since then, and the world is a more civil place to live, right? And yet within the last couple years, I became exceptionally symptomatic again due to failing medications, went to a cardiac surgeon who was supposed to be a genius and know everything there is to know, and he decided to diagnose me with agoraphobia (fear of leaving the house (even though I love leaving the house)), and wrote in my medical records that he thinks I need to see a psychiatrist. As it turned out, he felt this way because the tests he performed all came out negative (which is nothing new for people with NCS. Tests generally come out negative, except the Table-Tilt Test, which is the sole method of diagnosis, and even then, if someone is having a good day, the results can come out skewed. Additionally, I mentioned one time to him that I never know when I’m going to get a syncope episode so I need to take precaution when I go out. Apparently this means that I’m faking my symptoms and that I’m agoraphobic. The moron with the PhD did not tell me any of this. He never spoke to me about this or attempted a discussion about it, which would have led to me immediately clarifying my statements. He never gave me the chance. At least the first doctor 11 years ago told me to my face he thought I was crazy or lying, because who has symptoms like fainting and constant dizziness when all tests come out negative? Instead, this new doctor decided to put me on Paxil, an anti-anxiety / anti-depressant SSRI drug, and told me it was to help with blood pressure, and was one of those medications that has been known to do more than what it was actually intended to do. I believed him, because what reason would a doctor have to lie?
I found out what the doctor had done and what his real thoughts were only after I procured my medical records to send to the Mayo Clinic for my then-upcoming visit. I would have never known the truth otherwise. He didn’t even want to give me my records at first (he literally laughed at me when I told him I was going to the Mayo Clinic, and said there was nothing they could do for me if he couldn’t do anything for me), and now I knew the reason why.
I told my (so far) amazing doctor from the Mayo Clinic what this other doctor did. After his initial shock, he said I should absolutely get off the Paxil, since I shouldn’t have been on it to begin with, and was only on it under false pretenses. It *does* help with anxiety and depression, but the minimal amount of anxiety and depression I do suffer from is perfectly normal and reasonable for someone who has Dysautonomia. Who wouldn’t be nervous every now and then if they’re known to faint without warning or reason? Who wouldn’t be a little depressed at having a chronic condition that only seems to be getting worse? But I’m living with it, and I do my best to remain positive. So, with Mayo Clinic doctor’s blessing, I finally began weaning off the drug this past week.
At first I thought I was going to die. I hadn’t felt so awful ever. Not even before I was diagnosed. SSRI drugs are no joke, let me tell you. They are neurological, which means that everything controlled by your brain is effected. Can you guess what your brain controls? That’s right. Everything. If I thought I experienced dizziness before, I was sadly mistaken. I was seeing everything in triple and blurry. My eyes kept jerking, as if they couldn’t fill in what I was seeing quickly enough. Imagine watching a film that is supposed to be smooth, but instead each piece of film jerks into place. The world was spinning, twirling, flipping and swooping all at the same time. The floor was moving, my bed was moving, I was moving. My husband kept insisting that everything was stationary. So much that he knows! It was made all the worse by the constant sweating, palpitations, hot flashes, pressure in my head and ears, which instead of a ringing sound, took on the sound you hear when you get static on a television. My muscles were weak and spasming, and the nausea overwhelming, worse than my worst morning sickness when I was pregnant.
I wasn’t exaggerating when I said that I felt like I was going to die.
This lasted two days. Then I had a few hours reprieve after taking the medication again. I was supposed to reduce it gradually: two weeks taking half the dose, then taking it two days on and one day off, then every other day, then taking it once every few days, and then not at all. This is what happened during the every other day stage. Suffice it to say, I reverted back to the two days on and one day off, which is awful since it means I’m going to have to endure this agony even longer than I expected.There are moments I just want to break down into tears. I have never felt this badly. Ever. And it angers me to no end that it’s all because I was put on a medication I didn’t need. I did see that doctor once more after I went to the Mayo Clinic so that I could tell him off real good, which I did do. I don’t think he’d ever been openly admonished by anyone in his entire life, because I left him speechless. When he finally found his words it was to compliment me for standing up for myself and speaking my mind. He then promptly left the room, and that was the last time I ever saw him. I didn’t yell at him. I didn’t curse at him. Instead, I told him that it was wrong to put something so permanent in my chart like that without even discussing it with me or talking to me about it. I calmly explained to him what the reality of my condition is and how he was absolutely mistaken in his diagnosis, and that if he would have just spoken to me and been honest, he would have realized he was wrong. I told him the nature of the disability, which as his patient, I should not have had to do. This doctor needed to be educated. Desperately. And I was proud of myself for my eloquence and my calm while speaking to the man who not too long ago would have labeled me having Hysteria, simply because he does not understand or due to lack of awareness. Because obviously if he doesn’t know about it, it doesn’t exist, right?
If I saw him right in this moment, as I lay here, twitching, barely able to see (I apologize for any grammar / spelling errors throughout this post, I’m literally typing half-blind), having hot flashes, palpitations, feeling faint, and experiencing dizziness and nausea like I’ve never known before, I honestly don’t know if I could remain calm and eloquent in his presence. However, I would do my absolute best to be the bigger person in this and not lash out, because venting at him would solve nothing. That’s what I have this site for. I hope that my experiences can help even one other person not go through what happened to me. I implore everyone who reads this to be aware that doctors do not always know everything, and that you should always question, always believe in yourself and what you are feeling and experiencing no matter who tells you that you’re faking it or that it’s all in your head. Don’t be afraid to find a new doctor, particularly one that specializes in Dysautonomia. I have easily gone through a dozen doctors or more to find the one I did and am happy with at the Mayo Clinic, who understands, who is actually knowledgeable about the topic and the research / studies that have been done. No one should make you feel like you have to question yourself, and if you come across someone who tries, then they shouldn’t be in your life. Women may fake things for one reason or another, just as men do. Gender plays no role here. No one, man or woman, could or would ever fake these symptoms and disorders. People with POTS, NCS, VVS, and other autonomic dysfunctions under the umbrella of Dysautonomia, appear perfectly normal and do not look chronically ill, but are suffering one of the most difficult, life-altering disorders on the planet. It’s what we call an invisible disease. Others may not be able to see it, but it sure as hell is there and wreaking havoc on the people who are unfortunate enough to have it. We are NOT crazy. It is NOT all in our heads. We are NOT faking it for attention or any other reason that you can come up with. Disbelief is what put me in the sorry state I’m in right now, and I am not depressed about it. I am angry. Dysautonomia is invisible, but it is real. And excuse my language, but if anyone thinks or says otherwise, they can go fuck themselves.
The one you sold to fool the world
You lost your self-esteem along the way
And you should know that the lies won’t hide your flaws
No sense in hiding all of yours
You gave up on your dreams along the way
I can fake with the best of anyone
I can fake with the best of em all
I can fake with the best of anyone
I can fake it all
Good god you’re coming up with reasons
Good god you’re dragging it out
Good god it’s the changing of the seasons
I feel so raped
So follow me down
And just fake it if you’re out of direction
Fake it if you don’t belong here
Fake it if you feel like affection
Woah you’re such a fucking hypocrite.
A New Hope
Once again, it’s been too long since my last bout of activity on here. I’ve been slowly getting my life in order after going to the Mayo Clinic branch in Jacksonville and having to deal with moving. Since I haven’t addressed my Mayo Clinic visit I’ll do that now.
The Mayo Clinic (MC) is a very large and very pretty institute. My mom went with me (mainly to be a chauffeur for the extremely long drive). We stayed at the Hampton Inn nearby the MC, and they offered free shuttle to and from the MC. It really is a fantastic service, since the MC is huge and easy to get lost within their campus. The shuttle takes you to the exact building you need to go to and then picks you up from wherever you are (you call when you’re ready). The hotel even packed us a doggy bag to take with us since I had to go there fasting. I don’t usually do PR, but if anyone goes to the MC in Jacksonville, I highly recommend you stay at the Hampton. Plus, it’s like half the price than staying on-campus.
Anyhoo, I walked in to the building full of nerves, and walked out of it quite happily about 2 hours later with renewed hope. First you sign in on the bottom floor and deal with the finances and insurance information or they won’t let you upstairs. From there, you go up a Willy Wonka-esq elevator that speeds you to the proper level while your stomach flies into your throat and your ears pop. What a ride! It was a good thing I was already in my handy dandy wheelchair at that point or I’d have fallen on the floor (which my mom almost did). I couldn’t help but love the exhilaration of it though, and it certainly kicked my blood pressure up a notch. Once we stumbled out, we were ushered into yet another line to check in for Cardiology. They took information all over again, and then sat us down in a particular section until we were called in by a male nurse.
WHAT A DIFFERENCE! The nurse took all my medical information and for the first time ever I wasn’t asked how to spell my condition. I didn’t have to explain what it was. I didn’t have to tell him to put me in a close room because he already knew I’d have difficulty walking the weaving labyrinth of hallways. I can’t begin to describe how refreshing it was that he KNEW. The doctor I saw, a physio-cardiologist, also knew. He was more knowledgeable about NCS than any other doctor I had been to in the 11 years I’ve had it. He’d seen so many others with my condition that he didn’t bat an eyelash. He spoke of varying studies that were done for people with NCS, what drugs were tested, what the results were, what recommendations were borne of it, etc. He spoke for at least 20 minutes about every “beautiful study” he was aware of, and what treatments would probably work best for me. Surprisingly, the majority of studies he listed off determined the exact opposite of what past doctors had all told me to do. I’ve been treated incorrectly for so long, it was no wonder the NCS was getting worse!
Examples:
Old doctors: Walk!
New doctor: “Of course you can’t walk! How does anyone expect you to walk when it’s going to make you faint? You need to exercise on a bicycle while lying flat on your back.”
Old doctors: Take beta blockers!
New doctor: “Beautiful study showed beta blockers don’t necessarily help. We’re going to wean you off them.”
Old doctors: Paxil! Antidepressants! Antianxiety! You’re agoraphobic!
New doctor: “Anxious? Of course you’re anxious if you faint without warning! Agoraphobic? Hahaha! When you get home find a new doctor!”
Old doctors: Compression stockings!
New doctor: “No! Blood pools first in your abdomen area! Put compression there instead!”
Old doctors: Miscommunication between brain and heart! Go to a neurologist!
New doctor: “Your legs don’t work like a normal person since the blood pools. I’m going to teach you leg training so after a year or so of forcing your body to do what it should have been doing naturally all along you will have a long term solution.”
– Leg training includes:
Sleeping at an angle. This means I need to put the entire bed frame on a 6″ tilt beginning at the head, so that while I sleep my legs are forced to circulate blood.
Exercises for leg strengthening: leg exercises in pool, like holding onto the wall and kicking up and down; bicycle while lying on your back; leg lifts with weights while lying on your back, etc. Lying on back is important so if dizziness and fainting occurs you’re already in position. Also, legs should be the only thing exercised during leg training. The rest of your body should be at rest.
Stand for 30 minutes twice a day. This should be worked up to. Will take about 4-6 months.
Etc.
So in the end I worried for nothing. I didn’t need any big tests. I didn’t need to stay there for a week. I was in and out in a couple hours, and because I live so far away the doctor said we can do phone calls to keep in touch.
Since that day I have been listening to everything he said. I got rid of that asshole doctor who told me I’m agoraphobic and may need to see a psychiatrist (I told him off about this as well. I confronted him that he should have spoken to me about it before writing it in my record when it very obviously isn’t one of my problems. I love going out of the house!). He was so shocked someone talked back to him that after complimenting me for speaking up about how I feel, he abruptly left the room without saying goodbye. Then I abruptly left his practice.
I’ve actually been feeling better in the last couple months than I’ve felt in years. I’m more active, I’m able to walk more, and most importantly, I feel good. I still have bad days. Bad weeks, even. But the MC doctor did say that it would be on and off for over a year until I begin to see real and lasting change. I’ll never be able to have a normal life, but at least I’ve been given some positivity in that it’s possible to live a happier, less miserable one. I moved to a new community where my family and I are happy. The people are wonderful and welcoming even though I’m the only one semi-wheelchair bound. Also, I am interning again! I’ve finally found my calling, and it’s definitely not working with kids like during my last internship. I have one more internship to go and then I can graduate with my Master’s degree, and with any luck, start my career.
I’ve gotten me a new hope, and I am more than ready to begin this next adventure in my life as a mother, a home owner, and a career woman. I’m no longer a scared and hopeless 15 year old girl. I’m a scared but hopeful 28 year old. See? Progress!
Oh, Nepotism! Why Do You Mock Me?
In my first ever substantial post on this blog, What is NCS? A Beginner’s Guide, the first thing I did was write a small excerpt provided by the Mayo clinic, then continued to insult them, after which I used a completely different group of doctors to give what I felt was the best summary of NCS. Now, in this first post of the new year, I am biting my tongue. Within the next few months I will be going to pay a visit to the electro-physiologists located in the very same Mayo clinic that I was so quick to criticize. Yes, you’ve read this correctly: I am a sellout. Well, sort of. A family acquaintance is marrying a cardiologist located at the Mayo clinic in Jacksonville. Without informing me, everyone involved decided that I must use this as an opportunity to get checked out by the oh-so-fantastic doctors there that specialize in NCS, because the ‘Mayo’ name somehow means that they can magically help me.
After being accosted with this, and then taking some time to settle down, I realized, hey, who knows? I’ll take any help where I can get it. Maybe they do know some new medication that could be the one that finally works. It’s worth taking a chance, is it not?
I received a call from the Mayo clinic two days ago from a secretary who I’m pretty sure moonlights as a detective or journalist, because I don’t think there’s anything she doesn’t know about me now. Then I got transferred to another secretary, who took what little private information I had left and then proceeded to inform me that any office visit or test at the Mayo clinic is 15% higher in cost than what is typically acceptable, and that if I so much as enter the city which the Mayo clinic resides in I’ll be charged an arm and a leg just for being in its presence. Then I was given a to-do list that Cinderella’s wicked step mother would be proud of, and told that after all of this, the first available appointment isn’t till June, and that I should count my lucky stars because the only reason I got one so quickly was because of my cardiologist acquaintance demanded I be seen. They also have no idea how long I’m going to be there, and they won’t know until I’m already there and seen by a doctor. Who needs travel plans? Hotels? A babysitter? It’s certainly not their problem. I should just be happy they’re willing to see me at all.
Nope. This place isn’t full of itself in the least.
So now I wait. And start counting pennies.
In the end, it’s all about who you know. Whether you want to know them or not.
Oh, Homer, I feel your pain!
2013 In Review
So far I’ve had over 13,000 hits and reached 75 different countries. NCS and Dysautonomia effects so many more people than I could have ever imagined. While it’s been slow lately due to familial obligations and situations, even reaching one person makes it all worth it. I want to give a big thank you to all who visited my blog and to those who continue to do so. Spreading awareness is my #1 priority, and you can expect more to come in 2014. Happy New Year! May good health and happiness find us all!
The WordPress.com stats helper monkeys prepared a 2013 annual report for this blog.
Here’s an excerpt:
The concert hall at the Sydney Opera House holds 2,700 people. This blog was viewed about 9,300 times in 2013. If it were a concert at Sydney Opera House, it would take about 3 sold-out performances for that many people to see it.
Beautiful Strangers
I have had an awful day. I mean, really, truly awful. It hasn’t been this bad in a long time. I woke up fasting this morning because my two new doctors ordered an array of blood tests for me to take. I tried to get it done yesterday but my cardiologist’s office had no air conditioning and I couldn’t wait for them to first turn it on and cool down the office. Why on earth a doctor’s office in this kind of summer heat wouldn’t have put the air conditioning on of their own accord is beyond me. Anyway, I ended up having to make a last minute appointment for today with a blood lab that’s located in some medical building. As I walked into the building, I immediately realized that there was no air conditioning in the hallways. The elevator happened to already be on the ground floor, so I spent minimal time standing and waiting for it. However, once it arrived on the second floor and the doors opened, I was greeted with even more heat. The hallway was narrow and not well lit. The doors had no numbers on them, and by the time I figured out which direction I had to go in I was already close to faint. The floor and walls started spinning and I felt myself get clammy and lightheaded. I finally found the lab, which was absolutely packed. There happened to be a single vacant chair which I ran over to. I couldn’t even make it to the sign-in sheet. In fact, I was just happy that I was able to make it the five feet to the chair without collapsing on the floor and embarrassing myself.
After a few minutes of trying to gather my wits about me, I finally made it to the counter. I signed in as quickly as I could because I could feel another wave of fainting coming over me. I hurried back to my seat and grabbed my cell phone to call my mom. She had been parking the car (there were no close spaces to the front door at the time of arrival so she dropped me off) and hadn’t come in with me. She ended up walking in just as I was dialing. She took one look at me and knew I was in bad shape. She went right over to the window and told the lady that her daughter has a heart condition and that it’s too hot in the waiting room and I’m going to faint. She asked to let me in as soon as possible, even though it would be cutting the line. It was extremely humiliating and I felt really bad for everyone else who had been sitting and waiting for much longer than me. There must have been at least 50 people in the room made for no more than 20. Did they think that my mom and I were making it up so we wouldn’t have to waste our time there? Did they think that I felt I deserved special treatment because I have some random condition, when possibly they had things wrong with them that were even worse? The woman told my mom that she would do what she could, and she did move me up the list.
When they called a young boy first, he must have been around 13 years old, his mother got up with him, came over to me and rubbed my back and wished me well and that she hopes I get better. She said she’d pray for me. She seemed genuine and sincere in her good wishes, and it helped me to feel a little more okay about the situation. I looked around the room and realized that some of the other people were nodding their agreement and that no one was upset with me. I thanked her with what little energy I had and went back to trying not to faint. The room wouldn’t stop spinning, and I kept moving in and out of consciousness, but only for a second or two at a time. When they called me a few short minutes later it felt like I’d been there an eternity. I made it to the room without falling on my ass, and the room was blessedly cold. The nurse who would be taking my blood had already prepared a “special needle” for me, she said. I assumed that she heard I was already fainting before I even began getting my blood taken, so they were trying to accommodate the situation and make it as easy for me as possible. Unfortunately, the term “special needle” only made me more nervous. “What kind of special needle? Is it a big one? This is going to hurt, isn’t it?” I asked, beginning to freak out. You’d think I’d be used to getting blood taken by now. Doctors have been vampires to me since I was 15 years old with a then-undiagnosed condition, and it only escalated when I got pregnant, needing to get blood taken every few weeks. Her “special needle” turned out to be a small butterfly needle so that I wouldn’t feel it- which I didn’t. The nurse was awesome and I barely even noticed when she stuck me. By the 10th vile, however, I began to black out again. She noticed my condition right away and told me not to think about fainting. Somehow I managed to hang on until she finished all 15 viles or so (I lost count), and she immediately had me lower my head and place it on my arm so that it would get more blood. Chugging a 32oz bottle of Gatorade helped as well, as did me taking the under-the-tongue pill the electro cardiologist had prescribed to me in case of emergencies. I was still clammy and shaky, so she graciously let me rest there for a few minutes even though there was a room full of people waiting anxiously to get their blood taken too.
I had to rest again in the waiting room for several minutes before I could work up the courage to attempt to get back downstairs and into the car. A man in the waiting room opened the door for us so that we could leave quickly, and someone else ran ahead to catch the elevator so I wouldn’t have to wait long. It felt odd being helped so sincerely by complete strangers. Everyone wished me well as I passed them, and I felt touched. Never before had I experienced such a large group of people all being so kind to someone with a condition that nobody knows about and usually thinks I’m making up.
I couldn’t make it to the car either, even though my mom had found a parking spot 15 feet from the front of the building. There was a bench outside with two older women who didn’t speak a single word of English sitting on it. When they saw me coming, I must have looked really bad because they jumped up to help me walk to the bench. Once I sat down, one of the women went with my mom to help her to the car with the baby and to get her settled while the other woman stayed with me and motioned for me to breathe deeply through my nose and out through my mouth. It didn’t help, but I listened to her and did what she told me because she was being so nice to a perfect stranger.
I fished in my bag for the small fan that I carry with me everywhere and turned it on while also grabbing my pills. I figured it wouldn’t kill me to take an extra salt pill or two and an extra dose midodrine. The woman grabbed my Gatorade and opened it for me, then helped to keep the fan blowing on me while I took my pills, and also put my pills back in my pocketbook and zipped everything up for me. Then she had me breathe again. The Gatorade, the salt pills, the under-the-tongue pill I had taken earlier, and the midodrine did nothing for me. The world started fading again, so I sunk as low on the bench as I could and elevated my feet in the air, pressing them together and lifting them up and down to try to get my blood moving. Then my mom pulled up, driving the car over the sidewalk so that I wouldn’t have to walk more than a couple feet. The woman who was waiting with me opened the door and wouldn’t let me walk on my own. She half-carried me into the car while the other woman helped deposit my bag by my feet. Who the heck were these people? My mom blew kisses at them, and I kept saying “gracias” to them, figuring they spoke Spanish, but my mom thinks it was Portuguese. Who knows.
In the end, I was saved by these two wonderful stranger-angels, was pleasantly surprised that humanity still exists in a random blood lab while the rest of the world is going crazy with hatred, and most importantly, I learned that when help is needed, it is provided (though its form can arrive in the most unexpected of ways). So how was my day? Awful. Yet shockingly beautiful thanks to 52 strangers with a heart.
“Just open your eyes and see that life is beautiful” SIXX:A.M.
ACTION ALERT!
Mrs. Potts
So this post took a while because I’ve been fairly lazy lately and I needed to conduct some research. I always hated homework.
The last month or two I’ve heard words flying around, some of which I’ve heard before, but none that I could define. They included: POTS (Postural Orthostatic Tachycardia Syndrome), Cerebral Hypoperfusion, Dysautonomia, ANSAR (Autonomic Nervous System Testing), and probably several others that I have forgotten. So what the heck are those things, and why were they suddenly being mentioned as possibilities after 11 years already passed?
As of the last few months I have been officially diagnosed with POTS in addition to my NCS/VVS/NMH* (or any other array of acronyms that all end with me getting dizzy and passing out). Apparently my doctor decided that nobody knew enough (including other doctors) about NCS, and some had never even heard of it, so to uncomplicate things he dubbeded me as a sufferer of POTS. Postural Orthostatic Tachycardia Syndrome, a long and complicated string of consonants and vowels which I have not as of yet been able to remember. If anyone asks me what POTS stands for, my immediate reaction is for my face to turn the telling fierce red of stupidity, shrug, and say “I haven’t got a clue”. When my doctor first mentioned the term “POTS”, he said, “Missus, you have POTS”, and I kid you not, I looked at him, all confused and a little insulted, and asked “I’m a teapot?” I admit, it was one of my less brilliant moments, and also demonstrates how deep the Disney culture runs through my veins. After several eye rollings, he explained to me that it is orthostatic intolerance. In other words, my body does not tolerate a switch in position, mostly the reclining-to-standing one, because I get all lightheaded, disoriented, and fainty if I sit or stand up too fast. However, symptoms can also occur when you’re immobile or close to it, like when lying down, sitting in chair, or lifting arms over your head. This made sense to me. I got this. Literally. While my doctor decided to tack on the POTS diagnosis to the list of complications I have to make things neat and tidy, as it turns out, he was right. My prognosis, according to Wikipedia, tells me: “Rarely, a teenager who develops POTS will gradually worsen over time and have lifelong symptoms.” Wonderful, isn’t it? I always knew I was a rare commodity, but this just goes to show what pleasantness I have to look forward to.
Along with POTS/NCS/VVS/NMH often comes Cerebral Hypoperfusion. Simply put, it’s when a person has a reduced amount of blood flowing to the brain (in my case it is due to the underlying POTS and NCS). I find it kind of flabbergasting how wrong I can be about things sometimes. I was certain that some quirks I experience throughout the day were due to the beta blocker I’m on. But as it turns out, this Cerebral Hypoperfusion could be the culprit. I seem to have a delay or a slowness in my reactions sometimes. For example, my mom will tell me something, I will acknowledge that she spoke and that words were coming out of her mouth, but a good 30 seconds to a minute will pass before I heard what she said and can respond to it. It drives her absolutely crazy and she yells at me for “not responding”, but I always told her that I can’t help it and that I don’t know why it happens. I also have cases where I am unable to concentrate, my brain feels fuzzy/foggy, my vision becomes impaired (blurry or dim like it’s about to black out), and I can’t always hear properly, as if the sounds are far away or warbled (which results in me annoying the crap out of the speaker when I repeatedly ask “What? WHAT?”). Very often, I also have episodes of severe sweating/clamminess, where I turn extremely pale and then my whole face flushes, which I until now attributed to the NCS. After completing my handy-dandy research, I now believe that these symptoms are possibly a result of Cerebral Hypoperfusion, which is a little scary since the condition can cause strokes and physical disability in patients with Cerebral Palsy in early childhood.
All of these conditions are under the umbrella of the larger term, Dysautonomia. Both NCS and POTS are autonomic dysfunctions. For instance, NCS/VVS/NMH are specifically linked to problems with the vagus nerve. In comparison, it’s like saying that someone with Aspergers is under the umbrella term of autism. So, to complete my list of disorders: I have Dysautonomia in the form of NCS/VVS/NMH and POTS, which often results in Cerebral Hypoperfusion. Congratulations to me. I almost feel like it’s my birthday.
With my condition worsening, my cardiologist sent me to the electro-cardiologist (which I spoke about in the last post), who recently sent me to a new endocrinologist. At first I was skeptical. He was sending me to rule out any possible endocrine factors that could be influencing or exacerbating the NCS, but I was personally convinced it was unnecessary and that my issues are not endocrine related. However, to make him happy, I made the appointment (which can sometimes take up to 3 or 4 months to get, but I lucked out by calling just after a cancellation). I am not exaggerating with the following statement: this doctor is a genius. In fact, he is such a genius, that he apparently doesn’t stick to his specialty in the endocrine field and feels the need to branch out into everything else in order to spread his expertise (and no, I’m not being sarcastic at all. Really. It’s true). In the end, I’m glad he is this way, because within the 20-or-so minutes it took me to divulge my entire history, he already had me completely figured out, had at least 8 different ideas none of my other doctors who specialize in my condition ever thought of (which we will start going over and implementing once my blood work comes back at my next appointment in mid-August because he’s completely booked until then, and for good reason apparently), and decided on the spot that I’m to take a test called the ANSAR.
ANSAR, which stands for Autonomic Nervous System And Respiration, takes about 15 minutes, is non-invasive, and tests the two branches of your nervous system, the parasympathetic and sympathetic nervous systems. The ANSAR test includes sitting down while performing two different breathing exercises, then standing up for 5 minutes, all while wearing an automatic blood pressure cuff (which takes your BP by automatically squishing your arm and cutting off your circulation so frequently that it becomes a huge source of frustration, ironically raising your BP), and you get attached to electrodes so a computer can monitor and record your heart rate (ECG- echo cardiogram). This machine/test is patented by MIT, and measures heart rate variability and blood pressure during various respiratory challenges and orthostatic/postural situations, and can tell the doctor whether or not there is an imbalance between the two nervous system branches. Why no one ever thought to make me take this test before is beyond me. It should have been done immediately following my table-tilt test 11 years ago. It could have something to do with the lack of knowledge doctors have about this test, and also the minimal availability. From what I’ve read, there are only around 500 machines in current use in the United States. For more information about this test, see their website at: http://www.ans-hrv.com , and I also found this PDF slideshow that had more information: http://www.donself.com/ansars.pdf
NCS, the beast to a person’s beauty.
(gif by disney-darling on Tumblr)
Just a little change
Small to say the least
Both a little scared
Neither one prepared
Beauty and the beast
Ever just the same
Ever a surprise
Ever as before
Ever just as sure
As the sun will rise
Tale as old as time
Song as old as rhyme
Bittersweet and strange
Finding you can change
Learning you were wrong
* I have never used or explained the term NMH (Neurally Mediated Hypotension) before this post. From what I understand, it is used synonymously with NCS and VVS. I found this PDF that explains it excellently: http://www.njcfsa.org/wp-content/uploads/2010/08/4-11-Patient-Unofrmationon-Neurally-Mediated-Hypotension-and-its-Treatment.pdf
My Own Prison
How often do people self reflect? Does someone make a conscious decision to take a step back and evaluate their life and their experiences and all the events both big and small that brought them to their present state? Or do people go through life on autopilot, maintaining only a semi-awareness of their actions and the reasons behind them? How does one ever figure out exactly what makes you you? How do you even know who you is? Life is fluid and ever changing, as are the people experiencing life.
I was once outgoing and confident, a social butterfly… Now? I look in the mirror and I don’t recognize myself anymore. If I’m not me, then who am I? And why am I clinging so stoically to a memory of what I used to be, and not coming to terms with who I am now? It makes me beg the question- has the NCS become such a large part of me that it has altered my very being? My personality? My thoughts and feelings towards life and the quality of life?
I realized that I’ve been feeling as if I’m settling for less, and since my condition has gotten worse, I’ve actually been okay with it. Then again, why should anyone settle for less? I thought I was okay with it, but I was deluding myself in order to make myself feel better. I’m not okay with it. I’m not okay with it at all. My quality of life has drastically decreased from what it once was. My social butterfly has now reverted into social awkwardness and resides in a safe cocoon where no one can find me. And it is definitely NOT okay.
– I’d like to take a moment and apologize in advance. It looks like this post is going to develop into a bit of a rant, because that’s the mood I’m in, but I’ll do my best to make it at least a semi-sensical rant instead of a nonsensical diatribe of inane jibber jabber. –
I decided it was necessary, bordering on essential, for me to take that scary step back and do some self-actualization. By so doing, I have come to the conclusion that it is a somewhat likely possibility that I have become a sad hermit who is afraid of making new friends and who neglects the old ones, leaving me cushy, cozy, and very much alone in the little bubble that is my life.
I have become so insecure about the utterly hopeless bout of NCS that I have been subjected to in the last year that I am afraid to leave the security of my metaphorical bubble and once again take charge of my life. It will never be the one I had, nor should it be as a new mother, but going to a movie sometime or out to dinner would be nice. So why don’t I? When a friend calls and says that they wish I could go out with them like I used to, why don’t I agree? Am I so afraid of fainting (which has become a likely scenario when I do anything at all these days) that it’s worth becoming some agoraphobic anti-social mess of a person?
A few weeks ago I finally got fed up with how my life has been. I’m losing touch with the people around me… Or maybe I’m not giving the people around me a chance to stay around me long enough to actually get to know me. I wonder sometimes if it’s because I’m worried people won’t accept me because I’m different, because I can’t do the same things they can and am limited in activities that they aren’t. But then how can I ever give my baby a proper childhood if I don’t interact socially with the parents of other kids his age?
That last thought is what did it. My child. How can I allow my child to suffer because I have a disability? It’s not his fault. He shouldn’t have to sacrifice or give up anything because of me. So I went. A friend had a baby, and I went to a celebration. I left the house, my safe cocoon, for a reason that didn’t involve a doctor’s visit. I got there. The first statement I hear is, “I’m surprised to see you out.” Out? Really? Is that how people see me these days? Like I’m some dog chained within its cage? I immediately went through those infamous ‘steps’ everyone talks about when grieving. At first I was angry at the person who said this to me, insulted and downright hurt. Then my anger turned to denial. I go out. Why would anybody think I don’t go out just because no one ever sees me going out and just because I’m home all the time and bedridden? Presumptuous much? The denial quickly became sadness as I gave in to the truth of the statement. I had jested about being a hermit before, but those words had sent me into a spiral of panic at the realization that just maybe it was an accurate assessment of my current behavior. I was stuck in bed while pregnant, which was medically necessary. I’m stuck in bed now because the NCS has become so unmanageable that I can barely function, but it’s no longer medically necessary. I have no real excuse. I’ve become pathetic. I invite friends (if I can even call them friends at this point… more like acquaintances who tried to become my friends but I wouldn’t allow it because I felt bad about myself. After all, who would want to be friends with me and be subjected to all my NCS craziness?) over to my house, but nobody ever invites us to their place. Why would they when I’m so insistent about not being capable of going out?
The very notion of me not being able to go out would have been laughable a few years ago. I had NCS then too, but my meds were still working properly and I was functioning alright. I was rarely caught at home. I went on dates, went out with friends to all sorts of places, had adventures, went to concerts and theme parks, went swimming, was an active member on my college campus… I even became an honorary member of a fraternity since so many of my male friends were involved and I practically lived there for a couple semesters. I was a completely different person when the NCS didn’t affect me as severely; before my body built up the resistance to my medications. But these days… the word “out” doesn’t exist in my vocabulary.
So why did it shock me so much that someone was surprised when they saw me not just somewhere, but anywhere? In the end, I became mad at myself that I allowed this to happen. I have become so removed from the world that now I’m afraid to live. In fact, I’m not sure I know how to live anymore. Maybe I’m just depressed that I will never be what I once was. It all came so easily to me before… I used to be everywhere, and with everyone, and now I can barely be with my own son because I’m afraid I’ll faint while holding him, or get too dizzy and fall with him in my arms. How do I go back to those same people I’ve rejected out of my own fear of rejection because of the NCS and apologize for behavior that I’m not even sure I can overcome? I finally see that there is a problem, and I have absolutely no idea how to fix it. How do I keep friends when I can’t really do anything with them? When I went to that celebration I ended up leaving within 7 minutes because there was no AC and I fainted. 7 minutes. 7 minutes of finally attempting to do something normal, to get out of my house that has become my very own prison, and I end up running home with my tail tucked between my legs. How do I beat this without people running away from me? I have friends that I’ve known forever who are afraid to be alone with me in case I faint on them. If my old friends are like that, how am I ever supposed to make new ones and keep them? I’m in a rut. I need to dig myself out. Can someone hand me a shovel?
In the wise words of Creed –
A court is in session, a verdict is in
No appeal on the docket today
Just my own sin
The walls are cold and pale
The cage made of steel
Screams fill the room
Alone I drop and kneel
Silence now the sound
My breath the only motion around
Demons cluttering around
My face showing no emotion
Shackled by my sentence
Expecting no return
Here there is no penance
My skin begins to burn
So I held my head up high
Hiding hate that burns inside
Which only fuels their selfish pride
We’re held captive
Out from the sun
A sun that shines on only some
We the meek are all in one
I hear a thunder in the distance
See a vision of a cross
I feel the pain that was given
On that sad day of loss
A lion roars in the darkness
Only he holds the key
A light to free me from my burden
And grant me life eternally
Should have been dead
On a Sunday morning
Banging my head
No time for mourning
Ain’t got no time
I cry out to God
Seeking only his decision
Gabriel stands and confirms
I’ve created my own prison
We’re Off To See The Wizard
Ehhhhhhhhhhhhhh.
That is what I have to say about my current class of living. After everything I have been through over the past 11 years, I am officially back to square numero uno.
It’s been about two years or so since my body began the gradual process of becoming progressively more resistant to the only blessed medication that my NCS found formidable enough to yield to. Within a week or two of having my baby the NCS decided to quit responding to the meds altogether, resulting in my now bedridden state. I have literally become a useless mound of flesh that (and yes, I am using the word ‘that’ and not the word ‘who’, because I barely feel like a person at the moment) can sometimes help fold laundry if it’s brought to my bedside. That’s pretty much all I’m good for these days, which is not very helpful, especially when I have a 3 month old baby who needs taking care of. My lovely, happy, colicky bundle of joy also requires constant walking and standing and shuffling and movement, none of which I can provide for him. How can an itty bitty baby with a whole lot of ouchie tummy ailments understand that his mommy can’t stand with him? Or sway with him? Or walk him around to help him feel better? Every time he’s in pain and I can do nothing but hold him while I’m sitting down, my heart breaks with his heart-wrenching waterworks.
So what is my brilliant solution? Live with my parents and have my old lady, stroke-victim, sleep-deprived mother carry him around for large portions of the day. She has enough problems of her own attempting to take care of a scatterbrained household, let alone tot around with her getting-heavier-every-day grandson attached to her arm. In all honesty, it’s actually really adorable. He lays there in her arms, all sprawled out like a content sloth with a little smirk on his face while she tells him lovingly how big of a misery he is for fussing up such a storm while she’s trying to get her chores done. And what do I do? I watch. I sigh. I try hard not to faint.
I’m not sure why, but I’ve been getting heat flashes with increasing frequency. Even when the baby isn’t being colicky and tolerates my seated position, I sometimes can’t hold him. They call babies ‘little bundles of joy’, but what they should really call them is ‘little bundles of heat’. It’s SO easy for me to get overheated while holding him for even a few short minutes. My wonderful sister-in-law sent me over a Boppy, which has been awesome for when I need to put him down and my mom isn’t available. That way he still stays close to me, I can play with him and converse with him, and I don’t get any of that bundle-heat. But still… the dizziness plagues me terribly now, more so than ever before. I still can’t manage to get to the bathroom on my own, I need help showering even while sitting in a shower chair, and trying to go out, anywhere at all, is basically impossible. It was my anniversary the other week and my parents were treating all of us to go out for dinner. Before the waiter could get our order I had an episode and we had to leave. I kept being told “try to stick it out, maybe you’ll feel better in a few minutes,” but with the world spinning around me, and everyone’s speech growing fainter to my ears by the minute… is that really something I was going to focus on? So, as usual, I ruined everybody’s rare outing.
We came to a household vote that I just can’t continue to live this way anymore. I’m a young 26 year old who can’t finish school since I’m not currently capable of completing the required internships, have a baby that needs mothering, and can’t spend the rest of my life in bed. So I was recommended to a new cardiologist who is apparently one of the best in the country, and is the head of one of the leading cardiac hospitals in existence. He was recommended to be Surgeon General a while back (and only didn’t become so due to personal matters), and was for many years the private doctor to George W. Bush. Surely a man of that caliber could fix me, right? I managed to snag a hugely sought-after appointment solely because the person who recommended him to me was my dad’s very influential and money-laden bosses, who called this doctor themselves to get me an appointment. Apparently the guy had saved one of their lives and they swear by him. I tried to explain that my condition is hopeless and that there’s nothing to be done about it that I haven’t already tried, and the response I received was “I’ll only believe it when the doctor says that is true!” So what was a girl to do? Refuse and get my dad fired, or go and see the miracle doctor?
Mom, baby and I went to his office, where we were greeted first by a nurse, which is typical for any doctor’s office. Usually, before the doctor comes in, you see the nurse or physician’s assistant, who goes over with you the reason behind your visit and your medical background/history. So after taking my vitals and information, she says “the doctor will be with you shortly.” Okay. Sounds reasonable. Sure enough, three minutes doesn’t fully pass before the doctor walks in. The only problem being that he isn’t the doctor I was meant to see. Mistake, right? NOPE. Apparently before I can see the Great and Powerful Doctor of Cardiology, I need to see a high-caliber cardiologist first and give him a more detailed version of my reason for visitation. NEVER in my eleven years of going to several of every type of doctor on the planet have I ever needed to see a doctor before a doctor. The only explanation my brain could give me was a reminder that while in the waiting room, other patients were calling this guy The Wizard, and I had overheard the nurses on the way in calling him names paralleled to the Master of Creation. So after the cardiologist leaves, to the same tune of “the doctor will be with you shortly,” I really hope that this is the *actual* doctor I’m going to see, and not another different doctor in the line of medical practitioners that has taken over my examining room.
Several minutes pass, and THE doctor finally comes in and introduces himself. We go over the same drill about my heart condition, only mid-way through the tirade that is my medical history I end up fainting on the guy. About 30 seconds before I went unconscious, while I was still blabbering away and completely unaware that I was about to be tornadoed to Oz, I saw The Wizard frown at me. I vaguely remember him asking me in his light Indian accent, “are you alright? You’re having an episode right now, aren’t you?” Then the world spun, I got extremely lightheaded, and everything began to fade. I had only blacked out for a second, and immediately following, he had me lay down on the table while he took my pulse. Once I was conscious enough to talk, he asked me “How often do you get episodes out of nowhere like that? Once a month?” I almost laughed. I probably would have if I wasn’t so darn dizzy. “Several times a day,” was my reply. He did a few more medical-y things like listen to my heart and continue with his hold on my wrist. I think that was more out of nervousness about me taking a flop off the table, though. Then he stared at me for a minute with his eyebrows doing that pointing-downwards-with-concern thing that eyebrows are sometimes known to do, and announced, “You have the worst case of Neurocardiogenic Syncope I have ever seen.” I was actually proud of myself. It must take quite a bit to impress a doctor that has a doctor see his patients before he does. And hey, if I’m going to have something bad, I might as well be the baddest there is. Title = owned.
So The Wizard can do something for me, right? The Emerald City that held my salvation was surely in my grasp. He’s one of the best there is, after all, which means there’s some magic pill or solution to make my dizzy go away. Got to be, right? Cuz if he can’t fix me, then who the hell can? I look up at the doctor expectantly, and in return I get a “I have no idea what to do with you.” FAIL. If I had any less strong of a will I would have facepalmed myself right there in front of him.
I spent the next week feeling depressed and sorry for myself. I just wanted to be left alone to wallow in my abundance of self-pity. My mother, on the other hand, had a very different opinion of what needed to happen. “We’re finding you someone else to go to! I don’t even care about you anymore, I can’t live like this!” How sweet. I get the worst news of my life, and she refuses to let me flounder in my hard earned misery. We decide to try out an electro-cardiologist that I went to about 6 years ago. He was the only one to try me on a variety of meds to see if anything worked better than the beta blocker, and we had come out with negative results. The reason I stopped going to him was because his bedside manner left something to be desired, and he wouldn’t lay off about the need to exercise and my weight, I felt insulted and decided to go elsewhere. Last week I sucked it up and went back to him. He changed a few things around, added some other things, and gave me a prescription for this Wonder Pill that I’m supposed to place under my tongue if I’m having an episode, and apparently it reverses the NCS attack. I’m not allowed to take it more than once a day, and he only allotted me 10 pills to try it out first, but it sounds both interesting and scary all at the same time. What the hell kind of super pill could pull me out of an episode? Freaky. In any case, I haven’t been able to test it out yet. Not because I haven’t had an episode since his office visit, but because my insurance decided not to cover the pills so his office and my insurance company are duking it out to decide if I actually need it or not. The doctor says that he’ll win, and I should be able to pick up the prescription by Friday. He also wants to see me in 2 weeks so we can figure out if the medication changes are working at all. He removed my nightly beta blocker so I’m now only taking my daytime one. He is also having me take 3 salt pills in the morning and none during the day, claiming that he doesn’t want me to have to “chase” my condition. He also increased my midodrine to a steady 3 times a day, and not the “as needed” that I had been doing until now. I am also commanded to wear the compression stockings I had been neglecting, and told to do at least minor walking, even if it’s just to my mailbox and back. I told him to try to walk to his mailbox when the ground beneath his feet feels like it’s moving and he has to grip the walls as it is just to get the 15 feet to his bathroom. He wasn’t having any excuses and told me to do it anyway, and that he’s never met someone with NCS that can’t walk to their mailbox. But then again, he also hasn’t met The Wizard’s “worst case ever.”
Something has got to give, and it ain’t gonna be the NCS.
We’re off to see the Wizard
The Wonderful Wizard of Oz
We hear he is a Whiz of a Wiz
If ever a Wiz there was
If ever, oh ever, a Wiz there was
The Wizard of Oz is one because
Because, because, because, because, because
Because of the wonderful things he does
We’re off to see the wizard
The Wonderful Wizard of Oz!
I Got You, Babe
They say that once you look upon your baby’s face for the first time all your pain and discomfort and misery over the 40 weeks it took you to reach that point fades away and you remember none of it. Well, either they lied or I’m just not one of them. I remember everything. The real question is: was it all worth it? The answer: Absolutely! Would I ever do it again? Probably not.
After the almost impossible feat of coordinating each of my doctors with one another and with the hospital, it was finally arranged that I was to be admitted early on the day of my C-section. The rule of thumb is that you cannot eat or drink anything at all for 8 hours before the surgery, and while my C-section wasn’t scheduled until noon-ish, they still insisted that I begin fasting at midnight. While I found that completely ludicrous and unnecessary, it unfortunately still had to be done or they would refuse to do the surgery. As such, I had to arrive at the hospital around 1am lest I become dehydrated, aggravate the NCS, and wind up unconscious on everyone.
It took several tries to find a delivery room that was cold enough to house me while I waited to be transferred into the operating room. They attached me to an IV with a “bolus”, which is basically when they flood your system with a ton of fluid to keep your pressure up. While it was scary not being able to drink my handy-dandy Gatorades that I refused to leave at home (I insisted a couple bottles be tucked into my pocketbook as my security blanket), I convinced the anesthesiologist to allow me ice chips. The ice chips were oddly reassuring, especially when it melted into water and I was able to drink sneakily. It wasn’t much, but the pre-op hours weren’t nearly as terrifying as I imagined they would be. The anesthesiologist turned out to be the head of the department for the hospital, since they wanted me in the best of hands. She decided that instead of the spinal, that they would instead give me the epidural. Her reasoning was that it would provide them with better control and that they could ease me into the drug instead of a single shot from the spinal that could have unexpected side effects when paired with the NCS. I agreed. It hurt. A lot.
When they wheeled me into the OR, the first thing they did was the epidural. A strong woman had to hold me while I hunched over (a position that wasn’t all that difficult since I am naturally hunchy) to make sure that I didn’t move because even the slightest movement could leave me paralyzed (yippee). Unfortunately, I am apparently not hunchy enough, because the epidural went in too far to the left and it took the anesthesiologist multiple attempts before she had it satisfactorily centered. The pain of repeated efforts wasn’t even the worst part. The worst part was the sound it made… Like a tin can or a stick running along jail bars like in those old cartoons.
Then it got real fun. The team entered. I thought I was transported into a horror flick. I can’t even begin to accurately describe how truly creepy it was to be in there, alone (they hadn’t yet let in the baby daddy), with a good 10+ people surrounding me, covered head to toe in what appeared to be hazmat suits straight out of a post-apocalyptic freakshow . Granted, I am aware they weren’t actually in hazmat suits, but I suppose that’s what happens when the drugs start kicking in.
I was beginning to get really nervous when I felt the show was going on the road and they still had yet to allow my plus-one into the OR. Fortunately I suppose someone must have remembered about him because one moment he wasn’t there and the next he was holding my hand. I was trying very hard to stay conscious. Good drugs good.
I remember forcing myself to stay awake because (a) I wanted to be alert for my baby’s arrival by doctor-stork, and (b) because I was afraid that if I fell asleep I’d never wake up. I also remember them pushing on my stomach, which I assumed was to determine the positioning of the baby so that they’d know where they would have to cut and yank. What I didn’t realize was that the sensation wasn’t them pushing, but that they had already made the incision and were busy pulling out the baby. Somebody had forgotten to inform me… Or perhaps it was a collective decision to allow me to remain uninformed. As it turns out, I was grateful for the lack of awareness. I probably would have had an anxiety attack if I had known… and if the drugs would have allowed. And here I thought they were simply taking an awfully long time to get started!
Unfortunately, the most potent memory of the ordeal was when I heard the doctor say, “Uh-oh!”. It has been prominent throughout history (or at least my own history), that the words “uh-oh” are never followed by anything good. Then I wondered ‘why isn’t he crying?’
As it turns out, the baby’s seemingly endless activity throughout my pregnancy resulted in him getting himself into trouble; or as the doctor later wrote in the report: “severely tangled”. The baby had managed to get the umbilical cord wrapped twice around his neck, twice around his torso, and twice around his arm. In addition, the cord was so thin, that even though he wasn’t considered premature, he came out weighing a mere 4lb’s 7oz.
Uh-oh indeed.
The doctor and C-section team worked really fast and managed to save him. The nurses initially told me that I would be able to have skin-to-skin contact with the baby right after they took him out (they place the baby on the mother’s chest for a few minutes since she is incapable of holding the baby in her arms due to the drugs). Instead, they cleaned and wrapped him (daddy was still able to cut the cord, though, so that was something), held him out to me for about 5 seconds so I could give him a kiss while pictures were taken, and then they whisked him off to the NICU (neonatal intensive care unit). I didn’t get to see him again for two days after that.
Typically, after the allotted time in recovery, the new mother gets wheeled to the newly renovated several-star hotel-esque accommodations the hospital offers, where you meet with your baby once again, and the little person gets to stay with you until your dismissal from the hospital. In my case, the anesthesiologist decided I needed to go to the cardiac telemetry ward to be monitored overnight. It was not fun. They had no idea what to do with a Cesarean patient, nor did they have any idea how to handle me, and things were a mess. I was ridiculously unhappy, and also ridiculously irrational because I was still refusing to sleep for fear that if I did I wouldn’t wake up. It takes some serious willpower to defeat the increasing pull of the heavy-duty drugs into dreamland, but I somehow managed to resist for quite a while. I think I finally relented and fell asleep in the AM hours.
Between the surgery and my eventual bedtime, I did have several visitors. They were surprised, as was I, of how little pain I was in. I kept refusing the morphine that was offered to me because I had bad experiences with painkillers and NCS a few years before when I had gotten my wisdom teeth pulled, was on vicodin for 2 days, and ended up going through severe withdrawal due to a low tolerance, most likely instigated by my NCS medications. When I woke up the morning after surgery however, the pain was definitely there since whatever they gave me in the OR had worn off. In fact, I never knew such unimaginable pain existed. At one point the nurses tried to move me an inch higher than I was since I had slipped down the bed, and it was so painful that I ended up screaming and crying in agony. People who know me are aware of my stoicism when it comes to pain, but this was just unbearable. I spent the entirety of the day in tears, freaked out a bunch of nursing students because I couldn’t prevent the waterworks even when asked simple questions, and was just utterly miserable. I think it was the combination of pain, crazy hormones, and the fact that I didn’t even remember what my baby looked like and was in no condition to go visit him. I also had received no calls from any of the NICU doctors or nurses telling me what was happening with him. Family did go spend time with him, but they didn’t return well-informed.
I was also miserable because I kept being told that if I didn’t get up and start walking around the pain wouldn’t lessen. I thought these people must be absolutely out of their minds if they think I’m capable of adjusting myself in the bed, let alone getting up and walking around. I managed to do it eventually, after several hours of bawling and insisting that I’m incapable of moving ever again. Of course they were right. By the evening I was moved onto the fancy floor where the mommies get to live for a few days, and by the following evening I was finally up to wheelchair-ing my way to visit my baby.
The moment I laid eyes on him I cried. He was so tiny, but so, so incredibly beautiful. The nurses wouldn’t let any of the visiting family (including the daddy) hold him until mommy got to, and honestly, I was terrified. He was just so small and fragile looking… I thought that one touch to his head might make it cave in, which made me cry even more. I went constantly for prenatal care and this was a huge oversight on their part. The NICU nurse had to put him in my arms for me, and as I looked down at him, I realized how truly thankful I was for having NCS. After all, it was only because of the NCS that I had the C-section, and it was also only because of the NCS that the Obstetrician agreed to deliver him 2.5weeks early. If I didn’t have NCS, I wouldn’t have had my baby. Plain and simple. He was too severely tangled to have had a safe vaginal delivery, and he was too small from the thin cord to have gotten enough nutrition and oxygen… likely he would not have even made it to full term.
Who would have thought that my being cursed with NCS saved my baby’s life? NCS, as it turns out, was a gigantic blessing. I even had a couple days in the hospital when I was so pumped up with oxygen, extra blood, and large volumes of fluid that my NCS went away. I had forgotten what it felt like to be normal for 10 years now… I’ve been dizzy for 10 years… and for a wonderful 36-or-so hours, I finally got to remember. I was so happy and relieved not to have the world spinning, and not to feel like the ground was moving beneath my feet, that I cried when the NCS settled in again. It’s back with a vengeance now, but crazily enough, when it comes down to it, I will be forever thankful that I have NCS. It is the sole reason that 7 weeks later, I have a healthy, thriving, incredibly beautiful baby boy.
Then put your little hand in mine
There ain’t no hill or mountain we can’t climb
Babe
I got you babe, I got you babe
I got you to hold my hand
I got you to understand
I got you to walk with me
I got you to talk with me
I got you to kiss goodnight
I got you to hold me tight
I got you, I won’t let go
I got you to love me so
I got you babe
Baby Baby, Can’t You Hear My Heartbeat?
25 weeks ago I rushed to the emergency room. I had started to bleed in no small amount and had just hit 12 weeks of pregnancy. While waiting to be seen, a young woman was wheeled through the waiting room to the parking lot, holding her newborn baby boy (that was what the balloon trailing her said, in any case). I remember feeling extremely overwhelmed. I felt so happy for her, and yet at the same time I was extremely sad. Was I going to lose, or had I already lost the baby I was holding within me? It hit me just how much I wanted him or her. I had my support system with me, all saying that it would be fine. That we’re just there to be certain things were still alright. It still took everything I had not to break down into tears. In the end, they were right. We got to see an actual human shape (and not something closely resembling a blip or peapod) happily bouncing around for the first time on the hospital’s ultrasound machine. Just over a month later, I found out I was having my own baby boy. Was it a sign, seeing the woman carrying her baby boy out of the hospital that night? A reassurance that everything was going to be okay with me as well? I’d like to think so. I really would.
Having NCS and having a baby has been and will continue to be quite the ordeal. I’ve been stuck in bed for 37 weeks now (contrary to what they tell you, pregnancy lasts 40 weeks, not the 9 months I’ve always heard about), and I’m going in to the hospital later tonight so they can take him out nearly 3 weeks early. If I didn’t have NCS I could wait like a normal person. Try to go for a natural delivery when the baby feels he’s ready to join the world. Unfortunately, all my doctors are scared that my heart will give out during labor, and so decided a non-emergency C-section would be the best alternative. While the surgery isn’t scheduled until 3pm tomorrow, I need to go in just after midnight tonight to get hooked up to an IV. Since I’m not allowed to eat or drink from the midnight before surgery, I need a strong saline drip to keep my body hydrated so I don’t faint on them for the 13 hours when I’m not even allowed a sip of water, let alone Gatorade. I’ve come to realize that I treat Gatorade as a safety crutch. I’m like a child with a comfort blanky. If I don’t have a Gatorade or bottle of water on me at all times, I start to hyperventilate for no reason at all. It’s kind of pathetic, really. Of all the things that can make me anxious and scared, going 13 hours without drinking is what terrifies me, more so than the surgery (and it is major surgery), more than the needles, more than the epidural (which is apparently extremely painful), and even the recovery. I think that says something about NCS, and not just that it has turned me into an irrational mess. The first thing you learn with this heart condition is that you must always stay hydrated. One of the causes of NCS, at least for me, is both poor circulation (hence the need for constant hydration- it increases blood flow), and that my body does not retain water. I drink, I pee, I drink, I pee. It’s a never ending cycle of fluids coming in and then exiting before being given the opportunity to provide any real sustenance. So yes, the IV will keep me hydrated, but mentally, and throat-parchingly, it will be insufficient.
While the drinking is not my only worry due to the NCS, it certainly, neurotically, is my main one. Another is obviously the surgery itself. Like any surgery, you bleed. Bleeding leads to a decrease in blood pressure, which would typically lead to me fainting fairly easily. I would really like to be conscious through the C-section, and I would really like it if my heart didn’t stop (something which happens too often when I faint), and then there’s the 2 hour recovery period where, once again, I won’t have my handy dandy Gatorade within my proximity, and I won’t even have the baby to distract me from it all since they use that time to put him through the medical ringer. Then they tell you that you need to walk shortly after the recovery. Me? Walk? I can barely make it from my room to my couch without fainting these days. How the heck am I supposed to “walk” immediately following major surgery, serious anesthesia, and an insane amount of bodily changes with the baby removal? If they think I’m not going to stand up and end up on the floor, they are in for a surprise.
Last, but certainly not least, is the baby himself. He’s coming out nearly 3 weeks earlier than he’s supposed to (although technically after 36 weeks babies are no longer considered premature, but there’s always risk for immature lung development). I’ve also been on all my medications for the entirety of my pregnancy, and while I did get the OK from the perinatal doctor to stay on them all, I can’t imagine it’s entirely healthy for the baby. The doctors have been telling me since the beginning that the baby is small and that I’m carrying small. In fact, I had one Obstetrician measure my stomach and say “where’s the rest of it?”, which was something I never thought I’d ever hear since I’m on the poofy side as far as body shapes go. I did voice my concern to the perinatal doc, and she reassured me that the baby is within the normal limits, and that while yes he is on the smaller side, the baby’s father and I should both look in the mirror, because he takes after us, and we’re both less than giant. But still… I can’t help but wonder if it was my fault… That because of the NCS and the meds that I prevented him from growing as he should, or at least as big as he should. According to all the ultrasounds he’s perfectly healthy and doing wonderfully, but I still feel concerned and a little guilty. I know it’s not really my fault, and that it couldn’t be helped, but it weighs on me. I suppose in the end there is nothing to be done, and hopefully my worry is for naught, and it’s just my natural reaction to being a mother (I have yet to stop worrying since the day I learned I had conceived, and I imagine it’s only going to get worse as time goes on). Once he’s out, and I am reassured everything is going to really, truly be okay, I think I will feel much better about everything. I’ve gone through absolute hell these last 9 months, and even as time passes I have already conveniently forgotten the worst of it. I must be crazier than I already think I am, because if all goes well, and I manage to live through this, I don’t think I’d object to doing it again someday.
Go figure.
To C, Or Not To C, That Is The Question!
Being pregnant and having NCS is a highly individualized experience. Some people feel either total or near-total relief from the NCS, while others feel worse than they ever had before. It is assumed that since pregnant women have twice the amount of blood in their bodies than the average person, it increases blood pressure, helps circulation, and reduces symptoms and episodes of the NCS. So why doesn’t this extra supply of blood work the same miracles for everyone? I haven’t a clue. All I know is that my blood pressure has never been better, nor have I ever been so dizzy and fainty. As usual, I fell into the crappy category.
I spent the first 4.5 months of the pregnancy kneeling before the bathroom’s porcelain throne. I couldn’t eat anything at all, lost nearly 30lb’s, fainted for the first time in 9 years, and have never felt so awful- not even when I was being diagnosed and wasn’t yet on my medications. “What did I get myself into?” , “I am never doing this again!”, “I can’t live like this!”, “This is all YOUR fault! YOU! With your male anatomy!” … the complaints that came out of me were frequent and slowly gaining in creativity. The mixture of excessive dizziness and feeling faint even within my bed, coupled with the constant upheaval and nausea my stomach gifted me with, I was absolutely miserable. Thankfully, by month 5, my stomach settled, I was gradually able to start eating again, and my crabbiness subsided. Unfortunately, as the baby grew bigger, my NCS was becoming more difficult to handle. I am about to begin month 8 of my pregnancy, and I have been on complete bed rest (except when going to doctors), I have to get my hair washed in the sink first so I can spend a minimal amount of time in the shower where the heat effects me more than ever, I can’t even get up to get myself a snack because the moment I stand the world spins, I’m being babysat 24/7 and must be escorted to the bathroom in case I faint again, and am pretty much being waited on hand and foot- which is the one thing I’m not complaining about 🙂 .
Throughout this whole ordeal, I have had 2 constant fears. The first is how exactly I am going to give birth. Which is safest for me? Caesarean or natural? The second is whichever method I end up with, am I going to survive it? Typically, people faint, their body resets itself, and they’re up and moving shortly after. While I am also usually like this, I have an unlucky side effect of my heart stopping as well. In fact, during my first table-tilt test, my heart stopped for about 15 seconds, causing an electro-cardiologist to demand that I get a pacemaker (which I never ended up going through with). The thought that while I go through labor my heart could just give out is not a reassuring sentiment. However, the thought of going through major surgery, being cut open, having extreme loss of blood, and a minimum of 6 weeks recovery is also unsettling, to say the least. So which option do I go with?
My obstetrician decided to send me to a perinatologist from the beginning of my pregnancy. He said that due to my extreme high-risk pregnancy that I needed to be closely monitored, especially because of his unfamiliarity with my medications and how they would affect the baby. Surprisingly, the perinatal doctor cleared all my medications for use during pregnancy except for my allergy pill, of all things. Whether or not I would be able to stay on my meds was a huge concern for me, so that worked out well. I can’t even begin to imagine how much worse off I would be right now without being able to take them. The perinatal also advised me to try for a natural birth. Her concern was that the loss of blood experienced from a C-section would lower my blood pressure and I would faint during the operation. However, being foreign to what NCS entails exactly except for what little research exists, she deferred me to my cardiologist. At the time, my cardiologist also told me to try for a natural birth. However, due to recent events concerning a newly acquired irregular heartbeat (which he says should go away once I’m back to only carrying myself), today, he decided that I would be better off with a planned Caesarean. When I first heard his recommendation, I was obviously a little thrown. All this time I kept hearing that I should attempt a natural birth, and then suddenly I’m going to be sliced open and go through major surgery. I decided I needed more information, so, of course, I made the monumentally stupid mistake of watching a video of a C-section. I admit, I had a bit of a meltdown. It took a good hour of both my husband consoling me and my mother trying to convince me it wasn’t so bad till I calmed down and once again began thinking rationally. I was reminded that while it was scary to watch, when it is actually happening to me, I won’t be seeing anything and I certainly (I hope!) won’t be feeling anything. It will be much quicker than a natural delivery, and the lack of straining will be easier on my body and my heart.
So yes, it makes sense to move forward with the C-section. That still doesn’t mean I’m any happier about it. I have this miracle of a life kicking at my bladder day and night, the pregnancy has been much better on my NCS than I thought possible given the circumstances, and yet it the hardest part will be getting him out and into the world. You are absolutely miserable and struggle and fight and persist against all odds for 40 weeks, and then first have to get your body torn open or go through extreme amounts of labor pain for up to two days? It just doesn’t seem fair… But then… Then you see this unbelievable little face that is somehow magically, mind-bogglingly residing in your stomach, mounted on a TV screen while a technician takes incredible 3D/4D imaging, and you realize… this is what it is all about. You decide then and there that everything you’ve gone through, are going through, and will go through is a billion times worth it. All the nausea, stress, bodily changes, pain, suffering, fear, all of it… Nothing has been more worth it.
Whatever is going to happen while on that operating table is going to happen. I have to reign in my fear, trust that the doctors are skilled and practiced and know what they’re doing. I need to have faith in them to oversee my safety, along with that of my child’s, and know that before long, my wounds will heal, I’ll eventually be back to my old self, and I’ll walk away with my own little bundle of love to care for. I never truly appreciated the lengths and suffering my own mother had to go through to have me… I don’t think anyone could ever truly understand until going through it for themselves. My birthday is coming up, and I’m starting a new tradition. I’m going to buy my mom a ‘thank you for birthing me’ present. She deserves it more than anyone else in the world, and I’m going to make sure she knows it.
Cuz It Feels So Empty Without Me
Miss me? I have too. It has been an eternity since my last post. I gave no update on my dizzy-state, my medication changes, or anything else for that matter.
So, to bring you up to date since my last post: my cardiologist gave me a secondary dose of the beta-blocker I’m currently taking, only instead of Extended Release, it is fast-acting. I take it in the evenings before I go to sleep and am ready to take my regular, ER dosage by the next morning. His reasoning was that if I have the medication in my system overnight, that I will wake up feeling better instead of ready to fall down on the floor. As it turns out, his assumptions were correct. I was able to function better than I had in months (especially given that I hadn’t been at all functional during that time), and was beginning to feel like a human being again. I attended my best friend’s wedding as her maid of honor and managed to walk down the aisle without fainting on it and making a fool of myself. I was able to dance with her for a few minutes. I was even able to stand while the photographer snapped pictures of us looking fabulous.
Unfortunately, about two months later I fainted for the first time in 9 years. And when I say ‘fainted’, I mean completely unconscious for a good while. I felt it coming on, knew the signals, knew that it was only a matter of time (and a short amount of time at that). I sat at the edge of my bed and called to my mom, who thankfully happened to be home. I told her I was going to faint, that I drank a ton of Gatorade, that I took extra blood pressure pills, that I tried laying down, but I could still feel it coming and that I really, really had to use the bathroom. Her response was that I could either faint on the bed and pee my pants or faint on the toilet and she’d be there to catch me. I decided I’d rather not have a huge mess to clean up and opted for option two.
I had forgotten how horrible fainting could feel… forgotten about that pull on your whole body that refuses to let you keep consciousness. Yes, I got hot yet cold and clammy and sweaty and in serious need of freezing shower, but oddly enough, I could deal with those things; those worries that always plagued me. It was the knowledge that no matter what you do, it just isn’t enough, and you’re body is going to do whatever it wants while you remain helpless and have zero control. That is the scariest part. And it doesn’t get any easier, regardless of time passing, and regardless of frequency, and in spite of all the preventative measures you take to convince yourself that you have some modicum of power over your own self. The truth is that if it’s going to happen, it’s going to happen, and there’s not a single thing you can do about it.
After we got me, shaky and pale, back into the safety of my bed, I began to wonder why. Why had this happened? Why had my medications not stopped the episode from occurring like they had for the last 9 years? I thought the medication change had helped. I was beginning to feel like my normal-dizzy-yet-non-fainty self again. So what was the problem?
Turns out, pregnancy and my specific case of NCS don’t like each other much.
In the words of Mr. Slim Shady…
“Guess whos back, back again
Shadys back, tell a friend
Guess who’s back, guess who’s back,
guess who’s back
Guess who’s back…
Now this looks like a job for me so everybody just follow me
cuz we need a little controversy,
cuz it feels so empty without me”
Just Like A Pill
Recently, I have been going through the unfortunate ordeal of my meds deciding not to work any longer. What scares me is that before I was put on this exact pill and dosage, a variety of doctors had tried pretty much every other medication under the sun, including experimental iffies the medical community continue to hem and haw about, and none of it worked.
What do I do when the one and only pill that ever prevented me from fainting quits the job?
I will admit, there was certainly quite a lot of panic on my end. I haven’t felt this awful since before I was diagnosed, and I never wanted to experience that ever again. I feel as if I’ve been transported back, to a time where I absolutely dreaded having to do even small things like walk 10 steps to the bathroom, or go the 15 feet to the fridge so I can get another Gatorade. I dreaded those things, because they involved leaving the bed and having to walk on an uneven ground that never ceased to move beneath my feet. Imagine going to a county fair, into a fun house, and there awaits that board you attempt to walk on, that moves and lurches and tilts, trying its best to get you to fall- that is what I feel when I walk on a perfectly flat, still surface.
After about two weeks of this, my mom finally forced me to go to my doctor yesterday. Amidst my protesting, she made the call, was told to come in right away, and was seen within the hour. When we arrived, however, a little old lady with a walker was barring the door, moving an inch a minute, and by the time I managed to get around her and bolt for the examining room, my palms were clammy, I was sweating from head to toe, and the world was starting to fade. I was just able to make it to the table, and the nurse put it flat so I could lie down. It was a miracle I didn’t faint, but I suppose if it’s going to happen, the best place to do it is in your cardiologist’s office.
He ran a load of tests, which I made slightly difficult for him since I just couldn’t walk around the office to the variety of rooms that held the equipment. So they brought the lab to me, and the nurse took blood in my examining room. Then they wheeled in the EKG machine, followed by the ultra sound machine to get a good look at my carotid artery. The only thing they couldn’t wheel in was my urine test, but they did have a nurse posted right outside the bathroom door in case I passed out.
While I wait for my test results, the doctor decided to try a new form of the same medication I’m already on. I was taking 120mg of Inderal on an extended release, so instead he put me on 40mg of Inderal 3 times a day- immediate acting. He thinks it might help if I get a higher dose more often. I took the first pill this morning, and I’m slightly nervous about it. How long will it last? Will its potency remain between pills? I guess I’ll find out. Either way, I cannot keep living the way I have been these last few weeks. I went from being semi-functional to completely non-functional. I really hope this is the solution, otherwise there are only two options I can come up with: Option one- Inderal just isn’t working for me anymore, in which case, I’m in big trouble since we couldn’t find a working alternative. Option two- I’m getting worse, which means even bigger trouble.
I’ve been exposed to doctor after doctor giving me the “There’s nothing more I can do” speech, but am I really so helpless that even my pills give up on me? Am I a lost cause?
In the all-too relatable words of Pink,
Run just as fast as I can
To the middle of nowhere
To the middle of my frustrated fears
And I swear you’re just like a pill
Instead of makin’ me better, you keep makin’ me
ill, You keep makin’ me ill
I haven’t moved from the spot where you left me
This must be a bad trip
All of the other pills, they were different
Maybe I should get some help
The Perils Of Shopping With Your Mother
Most women love shopping. Their male partners have a tendency to complain about spending excessive amounts of time roaming the sales-rack, or trying on thirty different blouses before finally deciding what you really wanted was a pair of pants. Women can spend all day in shopping malls and outlet stores, browsing to their hearts’ delight.
We dizzy-folk, however, absolutely detest shopping. Especially for those with NCS, it’s one of the worst activities possible. All the walking, standing, browsing, clutter, people bumping into you, at times not well air conditioned, trying things on, taking things off… It’s no wonder we just can’t do it. Instead of making a trip to the closest shopping mall, I like to type in the URL for my favorite deals websites. I am now so adept at this, in fact, that my friends and family are frequently begging me to do their online shopping for them, or to try and find the best deals or coupons for whatever item they are searching for. Ultimately, I end up spending much less money than I would have by physically venturing into a store, and I save myself a dizzy-filled afternoon. However, there are times when even I must admit the necessity of shopping at a physical structure that is not located on the internet.
Shoes, unfortunately, are one of the few things I just cannot buy online. Even though I live a mainly sedentary life, I still go out, and I still go to school and intern, and these activities require shoes. While there are plenty of websites that sell shoes, my feet are difficult to satisfy, and so I must actually try the shoes on before buying them. I have bought shoes online in the past, but between the returning and the keeping track of refunds, it is just too much of a hassle.
A few days ago, I went shoe shopping with my mother. Let me tell you a little something about my mother- she lives to shop. We are the exact opposite, in that sense. She could spend all day just browsing through clothes, knickknacks and whatever the Beyond is at Bed and Bath. So, before we departed, I told her explicitly that we are going in, finding the first shoe that fits me decently, and leaving. That’s it. No browsing. No meandering. Straight in, straight out. Her answering assurance of “sure, sure” didn’t inspire much confidence, but I went, because I had to.
Halfway through walking down the first aisle, I started feeling it. That tilty, unbalanced feeling you get when you know something’s not quite right and you need to immediately sit or lie down somewhere before you end up on the floor. I walked as briskly as I could towards a bench they had conveniently placed a few yards away. I sat down shakily, grabbed the Gatorade bottle I always keep in my bag, and chugged about half of it. My mom was browsing pleasantly two rows away, completely oblivious. I could even hear her humming. I decided rolling my eyes would be considered a childish thing to do, so I refrained… with difficulty. I grabbed my cellphone with clammy hands and managed to alert her to the situation. Even while on her way towards me, she was still browsing. It was extremely frustrating to watch her continue to shop as though nothing was wrong when she knew that I was in trouble. Just because I wasn’t unconscious on the floor yet did not mean it wasn’t going to happen. I was sweating from head to toe by the time she reached me, and the first thing out of her mouth wasn’t, “Are you alright, honey?” but “What about these? They’re pretty…” and picked up a pair of shoes I was sitting across from. It happened to work out, because I ended up taking those shoes home. They fit really well and were comfy on my feet (I put them on real fast to satisfy her so she’d go bring the car around. I was feeling so badly that I didn’t think I could make it to the parking lot).
I’m not sure when the blatant disregard for my physical well being began. It’s like one day the people around me woke up and decided that it wasn’t going to kill me, so they could go on with their lives. Who cares if she feels on the verge of faint? Is she unconscious? No? Let’s keep on doing what we’re doing then, and just leave her to it.
I know I’m sounding a bit bitter, but can I really be blamed? They can go on with their lives, and when they do, I feel abandoned. It’s not their fault that I have NCS, but it’s not my fault, either. A couple weeks ago I got really dizzy while clothes shopping with my mom (we happened to be in an area where a big sale was going on, and she just had to stop), and after we got back in the car, her response was “You ruined my day.” And honestly, that really hurt me. I ruined her day? What about my day? I’m the one having to go through this, and yet she is somehow the victim. I’m beginning to feel like I’m just this leech that sucks the happy out of the people around me. The ones that love me tolerate me with my NCS, and those that don’t run as far away as they possibly can. And I do pity the people who are stuck with me, or nice enough to allow me to stick with them- like my supervisor at my internship. Everybody always has to make special accommodations for me, or be excessively flexible and understanding. I realize it can get tiring for them after a while, but at least they don’t have to deal with it twenty four hours a day, seven days a week, relentlessly, without a break.
I suppose my question is- who is the real victim? Is it the people that actually have to live with NCS? Or those who don’t have NCS, yet still have to deal with it on a constant basis?
I suppose my answer is both. Neither asked for it, neither deserve it, and yet it is still there for both of them. Both groups are just trying to live their lives as best they can, with as much fulfillment and happiness as possible. And even though I’m suffering, I have to keep in mind that my mother suffers too. Shopping is how she attains her sense of happiness, and I cannot, and should not, begrudge her that. If it means I have to find a seat and feel awful for a few hours, then that’s what it means. She has always taken care of me, and unfortunately for her, she got more than she bargained for with a child that she still has to care for even as an adult. And really, she does need to push me to my physical limits. At first, I was extremely hurt, and thought her disregard of my blatantly obvious NCS episode was purely insensitivity on her part. But when I really stopped to consider it, I realized her actions were right, in a way. I didn’t faint then, and I did end up with a beautiful pair of shoes, and life does have to go on. The lesson she taught me is an important one. Instead of wallowing in self-pity, force yourself to fight through it. You will come out stronger on the other side.
I’m not much for girly pop songs, but in the words of Ms. Christina Aguilera:
‘Cause it makes me that much stronger
Makes me work a little bit harder
Makes me that much wiser
So thanks for making me a fighter
Made me learn a little bit faster
Made my skin a little bit thicker
It makes me that much smarter
So thanks for making me a fighter.
In The Summertime
Everyone has a favorite season. Some prefer the twitterpation and blossoming of spring, the colorful leaves of fall, or the snowy white of winter. Most, however, prefer summer. Summer brings about images of sunshine, palm trees and sandy-white beaches; beach balls, water parks, and, most importantly, in the words of my nephew- “no more pencils, no more books, no more teacher’s dirty looks”.
Along with the summer flare of bikinis and tanning lotion, comes the incessant rainy weather, heat and humidity, especially in the little corner of the world I call home.
While I can see the appeal of summertime, I would rather be shoveling snow and buying tire-chains than melting in the hot summer’s day, every day, for a minimum of 4 months. To further my argument: if you’re cold you can never put on too many layers of clothing, but when you’re hot there’s a limit to how much you can take off.
It wasn’t always this way for me, though. For a decent portion of my life, I too was captured by the lure of summer vacation. Now, however, I have NCS, which has the unfortunate effect of turning fun-in-the-sun into faint-in-the-sun.
It works like this: the increase in temperature results in the dilation of one’s blood vessels, which causes a reduction in blood pressure. Blood volume is also lessened due to the evaporation of water in the blood stream. Combined, it leaves even the healthiest of people with a lower blood pressure and those with NCS unconscious on the ground. People with NCS generally have low blood pressure and poor circulation to begin with. When additional factors are added to the already fragile state, the situation becomes even more unstable, and can consequentially lead to dizziness, lightheadedness, fatigue and fainting. In fact, the majority of my fainting episodes have been in hot environments, like the shower, or while outside during the summer months.
Useful tips: Try to stay in air conditioned areas. I carry a handheld electric fan everywhere I go. I keep a small one in my pocketbook and never leave home without it. I also recommend, as usual, extra salt pills to keep blood pressure up, and plenty of Gatorade. And when I say “plenty of Gatorade” I mean plenty of Gatorade. On especially hot days, if I know I will be out for a while, I keep at least 2 bottles on me at all times. Even if you don’t have NCS, it is always important to drink lots of water. For those of you who know someone with NCS- do them a favor and encourage indoor play during the summer. If you have to go outside, call ahead to the location and ensure there are plenty of places for the person with NCS to sit down and cool off. Little things like that can go a long way, and will be much appreciated, even if they are too embarrassed to say anything. We in the NCS club are fully aware that we are a pain in the ass to deal with, and because of that, we may not always speak up when we should. Just because we’re not being vocal about it does not mean that a problem doesn’t exist. Patience and understanding are absolutely fundamental to our wellbeing. If we all work together, there is no reason that a person with NCS cannot enjoy their summer just as much as the next person. After all, in the words of the great Alice Cooper, “school’s out for summer!”
Doubt: Proceed With Caution
Doubt is a very powerful feeling. It can be extremely hurtful, cause discord between friends and families, and result in the alienation of people that deserve much better- much more trust than they have been given. Since waking up that one morning with an unrelenting bout of NCS, I have had to face numerous individuals expressing their doubt, and there’s probably a lot more that I don’t know about. I try to understand their side of it all. That I look normal and sound normal and I have all my functioning limbs and parts. I stand and sit and walk just like everyone else, and they haven’t actually seen me faint on the ground at their feet. “If you look like a dog, smell like a dog and bark like a dog…” So what’s the problem?
Well, the problem is the vertigo, and the feeling of fainting I get on a regular basis. The only reason I do not actually black out completely and end up unconscious on the floor at their feet is that I have a kick-ass doctor that found me the right combination (or as close to right as is possible) of medications. So no, there is no physical sign on my forehead that says “Beware, This Person Has NCS, Proceed With Caution”, but to those people who are my friends, my family, even strangers who meet me for the first time- the fact that some of them experience that doubt and disbelief, that is just them placing a black mark on my character. So what do I do; how am I supposed to feel when it is my family, my friends, who believe I’m just spinning a complex web of lies? Personally, it’s almost flattering. I wouldn’t have thought myself to be that creative. I’d like to think that I’m a moral person; that I always tell the truth to the best of my ability. When people that I love and trust don’t believe me, or make less of it than it is, especially while I’m struggling through something I don’t truly understand, and am in need of their support more than ever? How do I deal with that without simply alienating myself from those around me; those that I would have trusted and believed and done everything in my power to help and be there for in a heartbeat?
“It’s all in her/your (<– insert pronoun here) head.” That 5 string of words are the most saddening and hurtful words that have ever been uttered in relation to me. It has unfortunately been repeated by several people, whether to my face or to others who have told me. And yes, there is a bright side, “at least you know who really loves you.” I know this will come out sounding wrong, but they were all supposed to have loved me. I need to be clear on something though- I’m only speaking of a select few from each category. My brothers tease me about “living” in my bed (as if I had another option and wouldn’t have preferred to be elsewhere), my best friend told everyone in sight I was making it up to get out of going to school, and a random Neurologist with an omniscience-complex I had went to for the first time also questioned if I was making it up- just because he had never heard of such a thing, which meant it couldn’t possibly exist. Mostly though, people either feel they have no reason not to believe me, and many have seen NCS in action if they spend enough time around me, while others just don’t care enough to even form the doubt. It is a whole other issue when they forget I am disabled (NCS IS legally disabling), and proceed to get annoyed when I tell them I’m unable to do something or go somewhere that they wanted to. That occurrence has cost me too many friendships.
I had a pair of friends that I knew would be great together. I did the only thing any decent friend would do and set them up- they immediately became boyfriend and girlfriend and stayed as such for years. In the interim, they became very busy with work and school and family, leaving very little time for all their groups of friends. They decided it would be best if everyone got together at once to hang out (“kill two birds with one stone”), but they would hold these gatherings at places I couldn’t attend- like roller-skating or ice-skating rinks, or in comedy clubs, nightclubs, or restaurants where the parking was located 20 minutes away from the establishment and I couldn’t make the walk. Sometimes it was in outdoor malls and they wanted to “walk around”, or places far enough away that I couldn’t drive to them. Each time, I explained why I couldn’t go, to many protests: “You don’t have to do any skating! Someone will always sit with you, don’t worry!” to which I’d reply “I don’t want to have to be babysat or watch everyone else have fun while you alternate being on duty.” It’s downright depressing, I wasn’t going to make anyone else suffer for me, and what did they want? For me to sit off to the side watching everyone else have fun? No. I tried giving suggestions of activities or places I could manage, but they refused for one reason or another. And so one day, they decided that I wasn’t putting any effort into our friendships and gave me the boot. How sweet and sensitive of them.
I’ve come to the realization that even when people completely believe that you have NCS, they usually don’t understand it, and it can cause more problems than if they didn’t believe you in the first place. For example, forgetting you can’t climb that flight of stairs, or not comprehending why you can’t walk around the mall, or why you can’t go dancing at their favorite nightclub on their birthday. The most recent occurrence involved a professor not understanding why I needed to leave an unairconditioned classroom. I later received an email with the statement, “It wasn’t all that comfortable, but the rest of us managed just fine.” As if I can be compared to the rest of them? I’m NOT normal! Heat is the worst environment for me. It was actually after that happened that I got frustrated enough to go searching for medical articles about NCS. What I came away with was the knowledge that there is a community of people having to deal with NCS just like me, with similar concerns, issues and experiences that I have had. I finally found people who understood what it was like to not only have to deal with NCS, but to have this ever-present doubt from the people in our lives. This was the confirmation that I so desperately sought and never realized I needed. It really wasn’t “all in my head”! I have had others with NCS describe to me how they had to quit their jobs, how terrifying it is to live with NCS, and how a lot of the people they seek support from return nothing but doubt or skepticism.
It is sad that people with NCS have to deal with other people’s doubt, especially when they are going through something so life changing and scary that they themselves do not fully understand. Doctors will tell you how it works and why, but only the individual can figure out what makes the symptoms better or worse, what environments to avoid or how long you can stand before the floor greets your face. We go through a constant trial-and-error for just about everything in our lives, never knowing what could be the next trigger.
So how do you communicate to others what is going on with us dizzy-folk? How do you provide the necessary information in the correct fashion to cease the doubt, the lack of proper comprehension and misunderstandings? Easy. You get one person to start a blog 🙂
Survival and Internships (+Update)
I begin my first internship tomorrow for graduate school. Typical, average worries for situations like this usually revolve around, “Will I do a good job?” “Are they going to like me?” “What if I suck?” , etc. I, however, do not have typical, average worries. My biggest concerns are: Am I going to faint while on the job and thoroughly freak out my supervisor, coworkers, and patients? What if I’m too dizzy to function?
The first sets of questions I asked my supervisor were things like, “Is the clinic air conditioned?” “Is there a lot of walking?” “Is there a lot of standing involved?” “What are the hours like? I may need to take breaks.”
The truth is, I just don’t know if I can do this, and if I can’t… what then? What do other people with NCS do? How do they make a living? I have zero issue with academics. Even if I can’t actually attend class from being too dizzy, I’m blessed with brains that enable me to show up solely for the exams and get straight A’s anyway without much studying. But with all my smarts, what good is it if I can’t actually do the work? If I show up for an interview at my internship and have to leave almost immediately because even with the air conditioning on it’s entirely too hot for me to stay there, how can I work at that same place daily?
I went for the interview last Thursday, and sat there with the room spinning, feeling as if the ground was moving beneath me, doing my absolute best to stay conscious while my supervisor talked at me. I am so sick of having to deal with this. There is no part of my life that has not been utterly affected by NCS. Out of everything though, the worst is the knowledge; knowledge that this isn’t getting better, that it’s never going away; that I’m stuck with this forever. And that knowledge is so, so scary. How am I supposed earn enough money to pay the bills when I can’t even get out of bed without feeling incredibly dizzy and faint?
The answer, at least in part, is this: I will get out of bed tomorrow, take my half a dozen pills, get a ride to the clinic I’m interning at (since it’s too far for me to be trusted behind the wheel), and just do it. If I’m dizzy, I’m dizzy. If I faint, I faint. If I have to go home early, then that’s what I have to do. But I need to try. I need to do the absolute best I can, because I don’t have any other options. No one is going to take care of me if I don’t take care of myself. There are precautions I will need to take- like taking extra pills with me, bringing a personal mini-fan in case it gets too hot, ensuring I have more than one bottle of Gatorade, etc. But I cannot hide in my bed and give up before I even make an attempt.
A little over a year ago I was told by a professor of mine, “Honestly, I just don’t think you can do it.” After that, I made a promise to myself- never again was someone going to tell me that I couldn’t do something. The obvious lack of faith from that professor has proved to be the best motivation I could have asked for. Now I want to succeed more than ever. But who knows? Perhaps she was right, and I won’t be able to survive the internship. Either way, at least I will walk away (or lay down) knowing that I tried. I am certainly going to do my best to not let the NCS get the best of me, and if it works out, it will be a lot of fun if I get to prove her wrong.
As Ms. Gloria Gaynor suggests: I will survive.
UPDATE: It seems I did in fact survive 🙂 , and my hours are increased for tomorrow. Hooray for not fainting!
The Table Tilt Test
I’d like to talk a bit about the all-powerful diagnostic capabilities of the table-tilt test. It is the one undeniable method of NCS confirmation. So: what is the table-tilt test, besides being a table that tilts? To start- it is a test performed (usually by cardiologists), to clinically simulate the everyday occurrence of what one experiences from lying down followed by immediately standing upright. This down/up experience, for those with NCS, causes a drop in blood pressure that often leads to lightheaded dizziness and the loss of consciousness when the brain feels it is not receiving enough blood flow (blood tends to pool in the legs upon standing, and those without fantastic circulation may find it difficult to send all the blood back upwards), and therefore commands the heart to beat faster even though there really is no need, oftentimes results in a fainting spell. When I was first described my condition by my cardiologist, I was told that I had a “miscommunication” between my brain and my heart. A table tilt test is positive when there is a significant drop in blood pressure between the lying down and upright positions, and/or when the patient collapses on them. The test usually takes about an hour and a half, starting from the time of preparation until the time you leave.
I was personally told not to eat anything from midnight the night before (in case I get nauseous and decide to get revenge on the doctors for putting me through this by throwing up all over them), arrive at the outpatient center of the local hospital nice and early, and come wearing loose, comfortable clothing and sneakers. The “preparation” steps include the placement of an automatic blood pressure cuff- which repeatedly takes your blood pressure throughout the entire test, being hooked up to an EKG machine (also runs continuously), and three different nurses trying to put in an IV before finally deciding, after the 6th attempt of busted veins, that it might be best to just stick it in your arm. It was extremely unpleasant and painful, did nothing to quell the anxiety, and surely only served to increase my already exorbitant amount of stress. Then, they strap you to a very uncomfortable table (and by strap- I mean literally strap, like in some Frankenstein horror film with a strap across your legs, waist and chest- arms included), start all the machines, and then let you lay there for a few minutes, lulling you into a false sense of “hey, this isn’t so bad”, before the dreaded doctor’s call of “it’s time!”, at which point the table whirs to life and suddenly you’re vertical. Then they very patiently wait and see how long it takes for you to faint. If, let’s say, half an hour goes by and you’re still very much conscious (but also feeling absolutely terrible, as if you’re about to faint but don’t actually black out just yet), then the doctors and nurses flash the all-knowing “we need to pee and eat, so let’s quicken this up” look to one another, they inject Isuprel into your handy-dandy IV that only took 7 painful attempts to get into a vein, and they wait again. Isuprel works to increase blood pressure and acts as a type of adrenaline. I lost consciousness before they had even finished injecting me with it, at which point they flipped the table backwards so that the blood rushed to my head, and attached the IV to a saline drip. I had found out later that they all freaked out a bit more than they usually would have since my heart had stopped for a couple seconds (which would later be the source of an electrocardiologist demanding me to have a pacemaker).
After I regained consciousness, got loaded with plenty of saline, and they were certain I wasn’t going to faint again, they removed all the wires and cuffs and electrodes and patches and that stupid IV from hell, and allowed me to be pushed in a wheelchair back to the car, which took me straight home and into my bed. The following day I met with the cardiologist, who put me on a high dose of a betablocker called Inderal, a pill to increase my blood pressure called Midodrine, a heavy supply of salt pills, and the usual Gatorade, since it has the highest salt content of all the sports drinks. A few months later I was told that I needed to repeat the table-tilt test, which I was so unhappy about it took everything I had not to burst into tears. It might not sound all that bad, but it was an absolutely awful experience that I hoped I would never have to repeat. However, the reasoning behind it was to see if the meds I was placed on were actually accomplishing their task- which they were. While I experienced all the symptoms of fainting (swirling dizziness + underwater sensation) during the next test, I never actually blacked out, and I’m pretty sure they were practicing IV placement since it only took three attempts (instead of the usual 7) to do it properly this second time around.
My Story: How I was Diagnosed with NCS
The first time I fainted was at the age of thirteen. I had been walking through a tented outdoor flea market with some family members and felt perfectly fine. After a while we became thirsty and ventured into an actual building with air conditioning to get a drink. We were waiting in line when it suddenly hit me- everything around me started swirling and I felt a pressure, as if I was listening and watching from under water while everyone else was above me. And then they were above me, staring down at me, trying to wake me up. It was disconcerting to wake up flat on my back on the brown tiles I had just been standing on. And by “just” I really mean about 30 minutes of my sister-in-law slapping me till I finally regained consciousness. I woke up to a very handsome gentleman pricking my finger to take my blood glucose levels, and another good looking ambulatory medic taking my blood pressure. If I hadn’t just fainted I probably would have been quite pleased about this. They told me everything checked out alright, but to drink a lot of water, have something with sugar to perk me up, and go home and lay down. By the next day I had returned to normal. My fainting spell was attributed to the hot summer’s day and my lack of fluids. I didn’t pass out again like that for a whole year.
The second time I had an episode I was now fourteen and drying myself off from a hot shower. I felt it this time- I had a three second warning, recognizing the symptoms, knowing I was about to faint. I called out to my mom to bring me a bottle of water- my instincts told me my body would like that. But it was received too late and I woke up on my bathroom floor with bruises from head to toe- a consequence of hitting the wall and sink on my way down. A few hours later I felt better. My family and I decided it was the result of taking a steaming hot shower for too long (I had a lot of hair to deal with) post-menstrual cycle, and shrugged it off.
And so, a year later at 15, my body decided that it enjoyed the last time I fainted after stepping out of the shower so much that it desired an encore performance, which was quite fantastic if I do say so myself. One second I realized my stupidity of neglecting to bring a towel into the bathroom with me, and the next I was wondering when exactly I had become horizontal. I was due to go to Disney World the next morning with my synagogue’s youth group, but it was decided that I should stay home. After all, another trip to Disney was already planned for two weeks later with my brother and his wife and kids.
So, of course, the two weeks pass and I find myself sitting on the carpet of an air conditioned waiting area for the Who Wants to be a Millionaire attraction at MGM studios. The line begins to move, and I stand up too quickly, knowing within half a second this was a mistake since the room began to sway and I felt that far-away underwater sensation. My poor niece had just opened a bottle of water and was about to drink when I snagged it from her and chugged the entire bottle within seconds. This prevented me from actually losing consciousness, but that dizzy, unbalanced feeling stuck with me. Unlike the previous fainting episodes, I did not recover. It caused our trip to be cut short, which to this day I still feel badly about. My parents were unreachable on their own vacation, so my brother and sister-in-law acted as my parents, and being fifteen years my elders, they were perfectly capable of doing so. I am eternally grateful for their haste in taking me to my doctor. It is a very scary thing to go through- the fainting in itself, and then the lingering feeling that something just isn’t right with you. The doctor couldn’t find anything wrong with me, said that it was probably from riding the Tower of Terror too much and walking around in the heat with the inevitable side effect of dehydration, but just in case, I should go to a cardiologist. He referred me to one, who I did not care for at all. My parents had returned the next day and made an emergency appointment. The doctor spent a total of three minutes with me, told me to drink propel or Gatorade more often so I don’t dehydrate and sent me on my way. We decided a second opinion was in order- since she couldn’t even give a diagnosis or take enough time to do thorough testing.
While maintaining a continual search for a decent doctor, the summer truly began and I was hired as a junior camp counselor. My (general practitioner) doctor said it would be fine as long as I don’t overexert myself and to drink lots of Gatorade and take salt pills regularly. I had not experienced another fainting episode, so why not make some extra money before school resumed? I was placed in a group that had the laziest senior counselor I’ve ever met. She expected all the lower-ranking counselors to do all the hard work while she sat back, relaxed, and enjoyed making small talk with the campers’ parents to ensure she got all the tips. As my doctor suggested, I refrained from overexertion- which pretty much meant that I didn’t use the staircase as a means for climbing three levels and instead opted for the elevator; when the campers went swimming, I decided it was probably best for me not to be in a deep pool and responsible for children in water in case I faint; I also took a two minute break every three hours or so to take a salt pill. I explained my condition and that these were necessary precautions for maintaining my health to the senior counselor upon our first meeting, but apparently she wasn’t the type to care, deciding instead that I was making up excuses so I didn’t have to do things I didn’t feel like. And what was I supposed to tell her to combat this viewpoint? That I have an unnamed condition that I can’t explain, but I instinctually know what will and will not make it worse? She’d laugh in my face! Eventually it became an issue of open dislike and labor abuse, as she made sure to send only me (there were 5 other counselors besides me, 4 of which were even lower in ranking than I was and this work should have been split between us all) running on every errand she could possibly think of, as if to teach me a lesson that yes, I can do these things, I just don’t want to. I ended up having to complain, feeling very, very sick and excessively dizzier than usual. The supervisor of our division placed me part time in a different group, and the senior counselor there was a friend of mine and commiserated with me. He didn’t like my original senior counselor either, which made me quite happy to hear I wasn’t the only one. However, this solution was short-lived as it required me to basically be a counselor for both groups at the same time. It resulted in twice the work, but I was able to turn down the first counselor and her errand-running, as I frequently expressed how busy I was with the other group (which was undeniably true. I happen to be a hard worker- I just have some limitations).
In this fashion, I completed the summer. I was able to spend time with my friends who were counselors in other groups as well, since we pooled all the campers together on field trips or for other venues of entertainment. There was one friend though who decided that my health issues were something to laugh at, however. Since I carried around a Gatorade bottle everywhere I went, he dubbed it my “Faint Juice”, which when said must immediately be followed by outbursts of hysterical laughter. He frequently removed it from my possession and ran around with it, trying to egg me on to chase him for it (which he was either too stupid or too ignorant to realize I couldn’t do). I don’t think he meant any real harm in it- maybe he even thought in some twisted way that I would find it amusing. But the truth is that I was so confused about what was going on with me that I saw this as nothing but insensitivity and hurtful teasing without provocation. I’d bump into him in the hallways and he’d laugh maniacally while saying, “Hey! Where’s your Faint Juice?” Eventually I just ignored it. There was nothing to be done, no protest strong enough to stop his unyielding persistence. Perhaps I was being overly sensitive, but given the circumstances, I think I was rightly justified in being annoyed. It was therefore with a great relief and happiness (who would have thought?) that I started my junior year of high school.
It happened about a month into the first trimester. I woke up one morning, got out of bed as usual, and was so unbearably dizzy that I fell to the floor. The room was swaying so badly, the ground beneath me lopsided, that mom needed to help me walk to the bathroom. I was obviously in no condition to go to school. Instead, she rushed me back to my general doctor, who immediately gave us the number for the best cardiologist he was aware of. This doctor was very young (my mom repeatedly asked him if he graduated nursery school yet), but he was also very thorough. He said he had a feeling about what was going on, but it was a hard test to go through (referring to the table tilt test), and therefore suggested that I see every other type doctor and take every test possible before he has to put me through the table tilt ordeal. I spent nearly a year visiting every doctor and taking every test imaginable. I went to several neurologists, endocrinologists, audiologists, ophthalmologists- you name it, I went to it. I took MRI’s, CAT scans, hearing and eye exams, balance tests, every blood test in existence, heart monitors, the list goes on. It was absolute hell. In fact, the first neurologist I went to resulted in my mom and I running out of there within 20 minutes with a four letter word I don’t care to repeat. His first line of questioning after I recounted my fainting spells and how constantly dizzy I currently felt was, “Do you like school? Do you have friends?” Because obviously, if Mr. Big Shot Neurologist, MD, couldn’t diagnose me, it must mean that it’s all in my head, right? I felt this was a low blow- especially since it made me question myself. After all, I had just turned 16 (I spent my 16th birthday wearing a heart monitor) and if a doctor tells you something, then you should listen, right? Luckily my mother snapped that nonsense out of me by providing a much-needed reminder that doctors are human, they don’t know everything, and that just because something hasn’t been designated with proper medical terminology it in no way means that it doesn’t exist.
In the meantime, while all this was going on, I was obviously unable to go to school. Unlike the assumptions of that awful doctor, I really did enjoy school. I had a few really great friends, I received top marks (in most of my subjects, anyway. I was never any good with languages other than English), and dull moments were exceptionally rare. I wanted to go back, but between the frequent doctor visits and my inability to walk the ten feet to the bathroom myself, how could I attend school? My mother discovered a program offered by our county for students who were unable to attend a regular school for whatever reason (broken legs, high-risk pregnancies, schizophrenia, etc). It offered all the same classes, textbooks and materials. With the sole difference being that it occurred over the phone. Just like being in a normal classroom, students would “call in” to class, the teacher would take attendance, and class would begin. The teacher would have us turn to pages in our textbooks, called our names when it was our time to read a section, answer a question or do a problem. They were even able to split us into pairs or groups, so that only the group members could hear each other, complete an assignment within a given amount of time, and then present it to the class as a whole. The only real change was that you couldn’t see anyone, and nobody wrote on a chalkboard.
When I wasn’t schooling over the phone, or in and out of medical facilities, I was bedridden. With nothing and no one to keep me company except my television set and the Harry Potter novels, depression started settling in. After a couple months of being absent from school I began to wonder why nobody had called or visited. I attended a small private school, and it was basic social decency for everyone to make an attempt to contact those that left for unhappy circumstances for any period of time, regardless if you were friend or enemy. We were expected to put those things aside if someone was in need of comfort or support. I finally got one of my friends to tell me why I was being so outcaste. It turned out that one of my “best” friends decided to tell the entire school that I was faking my illness so that I didn’t have to go to school, and also because I wanted the attention. AHA! That explained it. I suppose it was a good thing- I found out who my true friends were, one of whom found it amusing to answer people’s questions of “Where is she?” with “You didn’t hear? She’s dead.” People started calling after that.
It was nearly summertime again when I finally did the table tilt test. I fainted almost immediately- indicating an undeniable “positive” for what the cardiologist called Neurocardiogenic Syncope. He said I had the worst case of it he’d ever seen, and that it was saying a lot since his mentor is an electrocardiologist who specializes in my condition. I was referred to this mentor of his, who right away freaked out my mom and me by saying he’s scheduling me for surgery to implant a pacemaker into my heart within 48 hours. We ran out of that place too, with a popular Cee lo Green catchphrase. He said it would fix me and I needed it, but it was way too fast to make that kind of serious decision that would affect the rest of my life to such a great extent. That is a very permanent thing he wanted to do, and I didn’t want to feel pushed into it. Even now, still dizzy and often still bedridden, I don’t regret my decision to turn it down.
Once they finally figured out what was wrong with me, it was easy to throw some medications my way. They put me on a beta blocker called Inderal, in addition to the salt pills and Gatorade. After a month of being on it, they repeated the table tilt test (which really is awful- I nearly cried when I found out I’d have to repeat it) with my new medications, and while I got extremely dizzy, and got all the symptoms as if I was about to faint (clammy, pale, shaky, heart palpitations, pressurized underwater feel, visually out of focus, etc), I didn’t actually lose consciousness, nor have I since.
It has been 9 years since I was diagnosed, and to this day I am still experiencing episodes of near-fainting and constant dizziness. Suddenly waking up that day with NCS has turned my life upside down. Once I thought of becoming a doctor- but no more. Instead, I needed to find an occupation I could do while remaining relatively sedentary with the ability to make my own hours due to the persistent frequency of my “bad” days. I am no longer trusted behind the wheel of a car, since I could experience an episode at any time for no reason at all. I have to be sure there will be places to sit in air conditioning before I agree to go out anywhere with my friends. I can no longer stand in lines or walk around a shopping mall. I can’t go rollerblading or ice skating or dancing, or even exercise regularly like I used to (causing a magnificent weight gain, especially after the year of being stuck in bed with no method of losing the weight). I can’t go on my favorite rides at theme parks, I have to be embarrassingly pushed in a wheelchair if I do wish to go anywhere that would require a lot of walking. I could go on for days with all the things I can no longer do or have had to be adjusted. But when it comes down to it- I have to admit- at least I had 16 years of knowing what it felt like to have a body that actually obeys you, to not have to worry all the time about where I’m going to be or what might be the trigger for my next episode. People take their bodies for granted. They stand, they walk, they do whatever pleases them whenever they feel like, and they don’t take the time to appreciate that other people simply can’t. An average person bends down to pick up something that fell on the floor and no problem- if I do it, I need to sit down for 20 minutes till the room stops spinning. I unfortunately live in a bubble of fear for even the most mundane tasks that nobody else really even thinks about, like using the bathroom, showering, walking down the street, etc. So for my readers (if you’ve gotten this far into my excessively long post) who do not have NCS or an equivalent- the next time you’re waiting in a line, or standing with a friend and chatting- take a moment to appreciate it. And for those of you that do have NCS or another debilitating disability- learn to appreciate all the things you can do. You don’t need to live like everybody else to lead a full and happy life. Just learn to work with what you’ve got, make sure you build an excellent support system of friends and family, and try not to get too upset at them when they forget you’re disabled!
What is NCS? A Beginner’s Guide
In order to fully comprehend what NCS is, I think it’s important to have a basic definition, discuss what occurs on the physiological level to cause the problem, in addition to possible triggers and treatments.
According to the Mayo clinic, NCS occurs in roughly 3% of the population and may be defined as: “a brief loss of consciousness caused by a sudden drop in your heart rate and blood pressure, which reduces blood flow to your brain.”
This “loss of consciousness” is typically brought about by your body having an overreaction to stimuli (aka “triggers”). These stimuli can include anything from standing or sitting for too long, walking, standing up too fast, heat or other uncomfortable environments, stress, emotional upheaval, or simply by waking up in the morning and experiencing no adverse stimuli in particular to cause anything, and yet it happens anyway. For instance, I have either fainted or nearly fainted both during and shortly after taking hot showers, while walking through an unairconditioned tent, while waiting in a short line, after standing up too quickly in a perfectly air conditioned room, while eating peacefully at a quiet restaurant, while riding in a car, while watching a movie, while hanging out with friends, while using the bathroom, while brushing my teeth- the list continues.
The NWOCC (Northwest Ohio Cardiology Consultants) provide what I find to be a more accurate representation of the physiology behind NCS than those lovely doctors at the Mayo clinic. In fact, they do such an impeccable job, I’m going to let them explain it themselves. And what kind of student would I be to not cite them properly?
Northwest Ohio Cardiology Consultants. (2001). Neurocardiogenic syncope: patient information. Form 114.
“ Neurocardiogenic syncope is most commonly discovered in adolescents and in older adults. It is essentially a failure of the brain and the cardiovascular system (blood vessels) to adequately communicate and respond to each other. This is not a “heart problem” or “heart defect”. Because of the way people are made, it is “easiest” for blood to pool in the extremities. It requires “work” (messages sent by the brain, contraction of blood vessels pumping of the heart) to send blood to our heart and brain. There are a number of forces that work against blood returning to the central part of the body (vital organs and brain): gravity, amount of fluid in the vessels, dilation of the vessels, neurotransmitters (chemicals in the brain that allow nerves to communicate) available to convey messages from the brain and even barometric pressure. In addition, people who have this diurese urinate or lose body water more than they should. This leaves less fluid in the blood vessels.
For most people, this process of returning the blood to the central part of the body works efficiently and without our notice, just like breathing. When this process does not work well, symptoms can be experienced such as: dizziness, lightheadedness, fainting, headache, neck/back pain, visual disturbances, difficulty breathing, chest pain, heart racing, sweating, feeling too hot or too cold or rapid swings in body temperature, nausea, abdominal pain, GI problems, muscle aches or pains, fatigue, depression, inappropriate or exaggerated emotional responses, to name a few. Unfortunately, it is not obvious from looking at someone that they have this. Because there are so many factors that affect blood return to the central organs, an affected person may be fine one moment and have significant trouble the next. Also, if someone has had this condition for a long time, they may not know that what their body does is abnormal – sort of like not noticing when your eyesight slowly decreases.
Many people who have this have been told that they are “crazy” because a doctor cannot find anything physically wrong to explain a symptom that they are having (i.e. no infection to explain fatigue, or nothing wrong with their abdomen to explain severe pain). Many doctors do not know about this condition because it was not well understood until 1989, and at that time, only the most severe cases were identified – those people that passed out frequently. Now we know that you have this condition even if you do not pass out. Some people get Neurocardiogenic syncope abruptly in their teenage years and it leaves just as abruptly. Some people have this “forever” but the symptoms wax and wane, so that you are not always symptomatic and do not always require treatment.
For some, Neurocardiogenic syncope is hereditary and for others it is not. Do not be surprised if someone else in your family has some of the same symptoms you do. Not everyone has this to the same degree. It can range from very mild to completely incapacitating (bed ridden). There is nothing that anyone did to “cause” this and nothing that could have been done to prevent getting it. It just is.
There are objective ways to identify this condition besides symptoms: changes in blood pressure and/or pulse between sitting and standing (stress of gravity), and a tilt table test. The tilt table test provides prolonged gravitational stress to the cardiovascular system and eliminates some of the ways that the brain counteracts those stresses. The patient’s blood pressure and pulse, as well as other indicators and symptoms, are monitored during this test. Treatment consists of understanding the problem, salt, fluid, caffeine, and prescription medications. Knowing that you have this condition and what makes the symptoms better or worse is the most important step. Physical illness, psychological stress, allergies (histamine causes blood vessels to dilate), dehydration, and barometric pressure changes (including flying or high altitude), make symptoms worse. Position is important because of gravity. You will have fewer symptoms when sitting or laying down than when standing. If still symptomatic laying down, get your legs higher than your heart (prop them up on a pillow or the arm of the couch). Moving your muscles helps, too, because this squeezes the blood vessels and helps return the blood to the brain. (This is why many of us sway, wiggle, or squeeze our calves when standing). Good cardiovascular health is important, too; it will decrease symptoms. Regular aerobic exercise should be done for 40 minutes at least three times a week, when it can be done without creating symptoms. Take warm or cool showers/baths instead of hot. When you are hot, the blood vessels in your arms and legs dilate in order to cool you down. Dilated blood vessels keep more blood away from your central organs and make you more symptomatic. If you sleep without clothes on, you will have less trouble with temperature swings at night.
People with Neurocardiogenic syncope need much more fluid and salt every day than “normal” people (who need > 64 oz. per day). When feeling symptomatic, even more fluid and salt is needed. Fluids are important so that there is enough volume in the blood vessels to make it to the brain. It is like trying to fill a sink without having a stopper in the drain. It can be done, but it takes A LOT of fluid. Salt helps keep fluid in the blood vessels longer. Caffeine raises the blood pressure to help get the blood back to the brain. If you have a normal heart and kidneys, extra salt and caffeine cause NO problems, and, in fact, will HELP you A LOT. When you are symptomatic, sit down and drink a can of pop or gatorade and take some salt. In 15 minutes, although your symptoms will not be completely gone, you will feel much better. The sooner you treat your symptoms, the easier it is to make them go away. The longer you ignore them, the harder it is to get rid of them (it will take A LOT more salt, fluids and caffeine). The way you get the salt, fluids, and caffeine down is less important than that you do. You can drink Mountain Dew, eat potato chips, and M&Ms or you can drink water and eat salt out of your hand. Your choice, JUST DO IT!
Some tips from those with daily experience:
Of the sports drinks, Gatorade has the most salt.
A salt packet added to 20 oz. of Gatorade or pop does not change the taste.
Keep an “emergency kit” with you at all times (salt packets, chocolates).
Carry (and drink) fluids with you at all times.
Plan ahead: if you know something is going to happen that will give you more symptoms (storm, standing in line, allergies), salt and fluid load ahead of time and also during the stressor.
Do not overdo it; plan time to take care of yourself and get enough sleep.
When your allergies are acting up, take an antihistamine (even if it doesn’t help your nose), to block the histamine effect of the allergic response.
Ask someone else to give you feedback – it is usually obvious to others that we are symptomatic before we recognize it (we get cranky and pale).
Several medications can be prescribed and these will be tailored to your needs:
Florinef: This is an alpha-adrenergic receptor sensitisor, which means that it helps the blood vessels return the blood to the brain. It is taken twice a day and takes up to 2 – 3 weeks to see its full effect. People who do not have a good intake of potassium may require a supplement.
SSRI: This is a group of medications which help the Serotonin balance in the brain. Serotonin is a neurotransmitter in the brain – it controls: blood pressure, heart rate, body temperature, menstrual periods, etc. Many people with Neurocardiogenic syncope do not have adequate stores of Serotonin. These medications restore that balance. SSRI’s include: Serzone, Zoloft, Prozac, Paxil, and Effexor. You may have heard of these medications being used to treat depression. This is NOT why you would be receiving these medications. These medications are taken once or twice daily, and may take 4 – 6 weeks to see their full effect. They are started at low doses and increased as indicated.
Ritalin / Proamitine: Ritalin and Proamitine work by causing vasoconstriction (squeezing of the blood vessels). Proamitine does not have the stimulatory effect on the brain that Ritalin does. For those that have trouble with memory / concentration (also a symptom), the Ritalin can be very helpful. It is not given in as high doses as that used for people with Attention Deficit Disorder though. Ritalin and Proamitine have a quick onset of action and are short acting. This means that they start working within 30 minutes of the time that you take it and stop working in 4 hours. They are commonly prescribed to be taken when you get up and then every 4 hours for a maximum of 3 doses /day (Ritalin) or 4 doses/day (Proamitine). Ritalin is not taken after 4 p.m. because it may keep you awake at night. Proamitine is not taken after 8 p.m. An example of a dosing schedule would be 8 a.m., 12 noon, 4 p.m. (Ritalin) or 8 a.m., 12 noon, 4 p.m., 8 p.m. (Proamitine). The advantage of these medications is that you receive quick relief; and if you miss a dose, it does not have any consequence except that you may be symptomatic until you remember to take your pill. (If you miss a dose of Florinef or SSRI, it will decrease your blood level and it will take awhile to get back to the right blood level.) So you can sleep in on the weekend and just take your first pill when you get up. For those of you who have a hard time getting out of bed, taking your Ritalin or Proamitine 30 minutes before you want to get up will make the process easier.
Biofeedback is also a treatment option. You can train your blood vessels to constrict when you want them to and return the blood to your brain. Ibuprofen has some activity against Neurocardiogenic syncope. For this reason, if you can tolerate Ibuprofen, this is a better choice for aches and pains than Tylenol.
Motiviation is critical. When we HAVE to do something important, our adrenaline kicks in and helps control our symptoms. Once you are up, active, and out of the house, you are less symptomatic because of the adrenaline and your muscles are helping return blood to your brain. When we are very symptomatic, we do not feel well enough to motivate ourselves to get up/drink/salt/caffeine. It is easier to give in to feeling horrible, and lay on the couch, and feel like we cannot get up to drink, etc. It is important to plan reasons to leave the house everyday ahead of time; things you cannot “weasel” out of if you are feeling under the weather. Neurocardiogenic syncope can be controlled. The more quickly you learn to recognize your symptoms and treat them appropriately, the quicker you will feel better (it takes A LOT of salt and fluid). Medication will be added to control your symptoms, it does take time to see the effects of medication, so be patient. You have had this for awhile, and it cannot be controlled “overnight”. Even when you are under good control, you may have occasional “bad days” when you will need to use LOTS more salt/fluids/caffeine than usual. This happens to all of us. Take them in stride, it does not mean that you are having a relapse. Initially, your follow-up appointments will be scheduled as often as a medication adjustment can be made. The treatment goal is for you to be able to aerobically exercise for 40 minutes three times a week without symptoms (not just get off the couch without symptoms). At that point, your follow-up visits will be changed to every 6 months, and after one year we will try to take you off your medication. If you pass out, you may not drive a car until you have not passed out for 6 months (you may also need a repeat tilt table test) and your physician completes a form for the Bureau of Motor Vehicles.”
Conclusion:
So, basically, you faint.
I am personally on Inderal, a betablocker that is not mentioned in the article, in addition to Midodrine (which is another name/version of Proamitine), a ton of salt pills, an endless supply of Gatorade, and an acceptance of what I am and am not physically capable of doing. I know my limits; I make necessary adjustments in my daily life to better suit my NCS (like using a wheelchair if I’m going somewhere that I know will require a lot of walking, shed a tear while passing by my favorite roller coasters at theme parks, and using a shower chair so I don’t need to stand for 40 minutes and end up fainting every day), and I always look at my situation in the most positive way I am capable of doing: it could always be worse, and at least this way I get to skip the lines in Disney World and make very excellent use of my handicapped parking sticker.
A Word of Welcome
Hi all!
I’ve decided to start this blog for a few reasons, the first being the need I feel to vent about this awful condition I have found myself in, as many others have before me, and many more will unfortunately continue to follow. Second, it has become unbearably frustrating to attempt an explanation of exactly what Neurocardiogenic Syncope involves, why I cannot behave like a normal person, and that yes, I am in fact disabled even though I do not appear to be. The truth is that unless you have experienced the unpleasant mixture of unrelenting vertigo and fainting spells for yourself, you just can’t understand. It is downright scary. You have zero control over your body, though your brain is still perfectly intact. You tell yourself repeatedly ‘don’t faint, don’t faint, I can make it to a chair’ and invariably wake up on the ground with bumps, bruises and concussions of every sort from slamming into everything within a 4-foot radius on the way down. You wake up on the floor of the bathroom just after a shower you know you shouldn’t have been standing so long in, in the middle of a crowded mall with onlookers wondering what possessed you to lay down on the floor when there was a perfectly good bench 20 feet away, while in a baseball stadium that simply forgot to include elevators and instead favored winding ramps and escalators that don’t quite reach your nosebleed seats, in the driver’s seat of an automobile after thinking ‘why yes, I can make that two minute drive to the nearest grocery store’, and, of course, at the Walt Disney World resort while circulating the Carousel of Progress.
No matter how hard you try, how well you behave, or how many pills you take, one fact remains: you just don’t feel good. Even on a “good” day, there still remains that constant nagging, a tiny prickle of anxiety that questions exactly how safe you are crossing that busy street, or if you go in to work today what are the odds you’ll embarrass yourself by fainting halfway through the day in front of the entire office? Even at a job interview- how do you bring up that you’re disabled and may not be able to come in to work everyday depending on how you feel when you wake up? Or that they need to make special accommodations for you so you spend the minimal amount of time possible standing and walking? Why would you even get hired when someone normal, without any of the health problems that make you “special”, can accomplish the same work and have the added benefit of consistency?
These are just a few of the problems facing those with NCS.
My goal is that with time, a better understanding can be gleaned of those that are faced with living with NCS. I believe the only way to accomplish this is to garner awareness. As Yoda would say, awareness leads to understanding, understanding leads to acceptance, and acceptance leads to a higher quality of life.
After all, “there’s a great big beautiful tomorrow, shining at the end of every day. There’s a great big beautiful tomorrow, just a dream away.”
Living With Neurocardiogenic Syncope (Vasovagal Syncope) / POTS (Postural Orthostatic Tachycardia Syndrome) 