What is NCS? A Beginner’s Guide

May 13, 2011 at 1:26 am (Uncategorized)

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.

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112 Comments

  1. J said,

    As someone who has a good friend with NCS, all of this info is of great help. Over the now almost 10 yrs I have known my friend it is only after she has had an “episode” from NCS, that can fully see what her situation is like. I hear about it, and know of it, but seeing it now and then, is different.

    I would have to agree that riding the Carousel of Progress in Disney World is fun now and then. But only if your hanging with friends and not with other counselors/campers to have to worry about.

    -Peaches :)

    • livingwithncs said,

      I’m glad you found it helpful, Peaches :-P
      Haha, see? There’s my point! I can’t go on the Carousel of Progress bc it is a revolving attraction and makes me incredibly dizzy. People usually go on it to relax their sore legs and cool off in the air conditioning- but for me, it’s just plain stressful and makes me feel even worse than I already do. Any ride with “carousel” in the name is probably something I should avoid lol.

  2. J said,

    You do know who this is right?

    • livingwithncs said,

      I think the Peaches gave you away… just a bit :-)
      Have you read the newest post? I think you’ll find it interesting… especially towards the middle.

      • J said,

        yes.. I read it. Although if I recall you didn’t do much work in the first group since she typically made me get lunch, pool, changing, etc. LOL.

  3. livingwithncs said,

    It was in reference to the year after that :P
    The year I worked with you was pre-NCS

  4. Divafoster said,

    I have been dealing with this for almost 12 years. My grandmother (R.I.P.) had it also. I’m having mega issues right now with my boss because she doesn’t understand that it’s not my fitness level! My heart is extremely good and my cholesterol is 167. But she insists the reason I have my heart disorder is from my weight! How can you explain my disorder to someone who is ignorant? That Lone is stressful!

    • livingwithncs said,

      First of all, it’s highly inappropriate for your employer to comment on your weight, whether you’re a size 0 or a size 50. When I first got NCS I was thin, exercising all the time, and in the best shape of my life. Heck, I met someone the other day with a skinny 4 year old boy who was just diagnosed with NCS. It’s nothing more than an asinine statement from someone who doesn’t know any better and should have never made the comment to begin with. However, if the NCS is causing problems at your work, then I suggest going to your doctor and having him/her write a note explaining the condition and your limitations. Whether your boss believes you or not, at that point she would have been informed by a professional and will have to just deal with it or you can take legal action (and nobody wants the headache to deal with that). You can also print her out a copy of the Americans with Disabilities Act that specifies the illegality of discrimination due to a disability, and hand it in to her along with the letter from your doctor. That should shut your boss up real good. If the NCS isn’t causing your work to falter, then I would either have a discussion with your boss and mention that you found the comment inappropriate and inaccurate, and if she wishes, you can direct her to the medical literature that is freely available on the internet, within medical journals, and the number to your cardiologist, so that she may be better informed of the condition and that hopefully this misunderstanding will not arise again. In my experience, I unfortunately just don’t think it’s possible to explain any of it to someone who is unwilling to listen. The best way is to shove so much research in the person’s face that there’s nothing to do but to hold his/her tongue. I’m sorry you’re going through this. It’s extremely hurtful and frustrating and I really hope you are able to get through to her.

      • Suzanne Hemond said,

        I’d take all of the above a step further and look into FMLA to protect your job. My boss is freaking awesome and she’s actually the one who told me I should use FMLA. It’s been a godsend for me because even though I’ve used up all my paid time off for the year, I can still take FMLA for a day or for part of the day if I need to leave.

      • livingwithncs said,

        That’s actually really great to know, and I’m sure it can help many people with NCS!

        Just to clarify on Suzanne’s comment, FMLA is the Family and Medical Leave Act. You can find out more information on their website, specifically under the ‘Serious Health Condition’ section: http://www.dol.gov/whd/fmla/fmla-faqs.htm

  5. Shae said,

    Well done!

    • livingwithncs said,

      Thank you :-)

      • Shae said,

        Welcome:) This is one of the best summaries I’ve read…covers all the important aspects in a way that I think non-NCSers will understand. NCS/NMH was my first Dysautonomia diagnosis…then POTS was added shortly after. I definitely appreciate your work :)

      • Pamela said,

        Are you still commenting on this? I have some questions and was wondering if you would be able to help me?

      • livingwithncs said,

        Yes, I am! I may be slow sometimes (the curse of having no time for anything once a kid pops into your life), but I would never willingly abandon my blog. They’d have to force me out lol.
        What are you questions? I will do my absolute best to answer them to the utmost of my ability :-)

  6. Shae said,

    Reblogged this on DysGirl.com and commented:
    This is an excellent summary of NCS/NMH, one of the types of Dysautonomia I have.

  7. Stephen S. Rodrigues said,

    Hello, livingwithncs. I followed your threads from Shae’s blog. I would like to help. I’m a family doctor in Dallas. I have see some weird cases in my 30 yrs but his one issue is the most odd. That said, some of most odd cases are due to a poorly understood syndrome called Spinal Segment Sensitization. The is the most severe form of myofascial disease. Myofascial Tissues collect Trigger Points (TPs) or “errors-of-stress and repair” and completely bog all homeostatic regulators. Travell, MD calls this an infection of TPs. It has a treatment or therapy that includes Myofascial Release therapy. MFR comes in 2 types hands-on ie massage and with needles , thin acupuncture and thicker hypodermic type. If you like more info ask.

  8. Amanda said,

    Hi,
    Thanks so much for this article. If you have time, I hope you can give me your thoughts on whether my symptoms could be syncope.

    I was recently diagnosed with mild small fiber neuropathy. I’m not diabetic. I have some immunodeficiencies for which I receive IVIG, and I had autoimmune hemolytic anemia in the past, so I’m assuming my SFN is also autoimmune.

    The symptom I want to ask you about this: when the weather shifts (barometric pressure, temperature) I often conk out. I literally have to take a nap. I can’t stay awake. Could this be syncope or dysautonomia? How would I get this diagnosed? I’ve talked to my doctors about this for years, but none of them seem to know what’s going on.

    Thanks in advance!

    • livingwithncs said,

      Hi Amanda,

      Honestly, I’m not a doctor and I have absolutely no idea what it could be. The symptoms can vary greatly from individual to individual, but basically almost all experience lightheadedness, dizziness, fainting or near-fainting spells, confusion, heart palpitations, and brain fog. If you have any of that, then I would go see a cardiologist or an electrocardiologist / electrophysiologist. Those are the doctors that specialize in NCS. The only way I’ve ever heard of to be diagnosed is to get a positive table-tilt test result.

      Hope I helped some! Good luck!

  9. JOHN RYAN said,

    Thank you for this, i agree that livingwithncs’ article is comprehensive and insightful, and i almost totally agree. I may have ncs (this is the first time I’ve heard the term, thank you so much) and I’ve been on low dose floranef for the last 3-4 years. The only thing I would add is a note of CAUTION on the paxil/zoloft suggestion. I was prescribed paxil after experiencing stroke like symptoms now attributed to ncs, though i had never been prescribed any anti-anxiety meds before. The paxil may have contributed to the profound tilt table response I had (27 second pause) which occurred in the week following initiation of the prescription, and that then lead to a month long hospital stay. I understand that the first week or two of anti-anxiety medication can be disruptive of your system and under some circumstances dangerous. I’m not a doctor, but if you are in an acute dysautonomic phase, be very careful starting on anti-anxiety meds.

    I wish all of you courage and strength in this weird heart/mind confusion in which we find ourselves. And avoid roller coasters.

    • livingwithncs said,

      Oh no! I can’t even imagine how awful that must have been! D:
      I was put on Paxil about 6 months ago, and I feel absolutely no reaction, good or bad. Everyone reacts differently to medications, and if there is a bad reaction some of the side effects can be really scary, like what you went through. I definitely suggest that anyone trying a new medication should be closely monitored by their doctor in case something like that happens. I suppose each person has to decide for themselves whether or not it’s worth the risk. I, for one, know that I want to get better, and I am willing to try just about anything lol.

      Thank you so much for your kind words and insight! I must admit that while I no longer go on upside down roller coasters, I do occasionally sneak in a normal one and then feel terribly dizzy afterwards, but it’s SO worth it! :-P You can take the adventure away from me, but you can’t take me away from the adventure! Well… I suppose that’s not entirely true anymore. I’ve got a new adventure, and with the amount he runs around and never tires, it’s like I’m on a roller coaster lol. Who needs the real thing when you’ve got a toddler?

  10. Michelle said,

    Yay, yay, yay! I have been living with these symptoms for the past two years. My pcp finally referred me to a cardiologist who said he thinks I have nuerocardiogenic Syncope. I had a tilt table test last week and fainted once I was given medication. My heart rate went from 147 to 101 and bp dropped from 115/78 to 70/59. That’s the last thing I saw anyway. Apparently he started laying the table down when my pulse was at 68. I was probably one of the happiest people to come in there because I fainted. Haha. I have a follow up on the 16th to officially be diagnosed with this crazy disease. I’m just happy to know that someone else out there is feeling the way I do day in and day out but that it can be managed. Thanks for this article I will definitely keep all the tips in mind. Hope you are feeling well!

    • livingwithncs said,

      Thank you for the comment! It made me laugh, which I know is kind of awful, but what you said reminds me of my mom. Every time I go to the doctor or have some kind of test (she’s my driver, of course lol), she prays that the test turns out positive, or that I faint in front of the doctor, just so we can finally get something more tangible to work with. There was one time I had a near-fainting episode right as the doctor was walking into the room. I thought she was going to jump up right then and there and do a happy dance haha.

      I hope you are feeling well too, and keep up the good spirits! Laughter helps a lot, and if you can have a good sense of humor about this, it can make it seem at least a little less awful.

    • Deb said,

      Is the tilt table test painful or uncomfortable

      • livingwithncs said,

        It’s uncomfortable, but not painful. Actually, let me make a slight alteration to that statement- it’s not painful, except for when they put in the IV :-P

  11. Bre Aponi said,

    I just learned that what Ive been living for the last 3 years with (black outs, amid a laundry list of symptoms) is NCS. I found this article very informative. I am still having blackouts 3-5 times or more since July but I am trying to understand and learn as much as I can. My doctor didn’t tell me about the driving thing nor do I have a handicapped plackard so walking from the parking lots on campus can be overwhelming. Do you have any more advice for a newly diagnosed NCS person??? Thanks!!!

    • livingwithncs said,

      Hi, and I really wish I didn’t have to welcome you to the club :-(

      Definitely get a handicapped placard right away if you haven’t already. There are no words to describe the relief of having one. Before I got mine I felt like I was going to drop before I even made it through the door of wherever I was going, and it has made such a difference.
      A suggestion I can give you if you have a big campus to walk around is to call the university’s visitor information center, or the parking and transportation office. Most of the time they will have services available to handicapped students, like golf carts that will pick you up and drop you off between classes, your car, or anywhere else on the campus you need to go. You can also go to the disability resource center and find out what accommodations they can offer you.

      If you ever have any questions at all feel free to ask as many as you like and I’ll do my best to answer them :-)

      Good luck, and feel good!

      • Bre Aponi said,

        Its okay!! Really I’m grateful for any reply at any time. So thank you! I did send you an email. :-)Bre

    • livingwithncs said,

      Also, I know I took forever replying (sorry about that! Been a crazy couple months!), but if you see this, could you e-mail me at livingwithncs@yahoo.com ? I have a quick question for you. Thanks! :-)

      • Alicia S. said,

        Hi I’m 18 and just have been told I have ncs. Ive had it for nine years… we thought it was something eles.I want to thank you for this article it has helped. I’m glad I’m not the only one that has to skip the rides at Parks.

      • livingwithncs said,

        You’re very welcome, I’m glad it’s helped. I wish you all the best, and now I have someone to commiserate with about the roller coasters :-)

  12. Larry said,

    I’m over 50 and I was diagnosed about four years ago. I’m one of the lucky ones that have a mild set of symptoms. Basically, as long as I take in lots of fluids and eat lots of salt while not overdoing anything, I’m fine. I also have pre-syncope which fortunately allows me to know when I need to quickly lay down. I can’t work as hard as I used to and I feel like I need to carry a cot with me when I’m out grubbing weeds, etc., but over all I’m just glad to know the cause of my fatigue and dizziness. I’ve only passed out a few times but I attribute that to the pre-syncope and rigidly following my doctor’s orders.

    • livingwithncs said,

      We should all be so lucky!! NCS is such a diverse condition. It really is interesting that it varies so much by the individual and no 2 people are ever really alike. I guess that’s another reason why we make doctors nuts :-P

  13. Cam said,

    Hello, I haven’t officially been diagnosed with this condition yet, but I think this may finally be the answer I have been looking for. I have been dealing with lightheadedness for nearly 5 years and have had every test in the book done (MRI, Blood work, EKG, Hear Monitor, Heart sonogram, standing\sitting blood pressure tests, etc….) I have seen 3 different doctors including a cardiologist and no resolve. My last doctor brought up the possibility of NCS and is referring me to another cardiologist. I’m assuming a tilt table test is next for proper diagnosis. My symptoms have varied throughout the years. Sometimes it’s so bad that I feel that I could pass out, but never have. I have good days, good weeks and bad ones. I have felt terrible almost everyday for the last week with lightheadedness coming and going throughout the day. My blood pressure is typically on the high side, 135\90, but never too high so it concerns me to eat more salt as mentioned above. Funny thing is, I work out 5-6 days a week and always feel good at the gym during my workouts, which makes me think maybe it is blood flow to my brain causing the issue. At first I thought it was Gluten and have been gluten free for 2 years. That actually seemed to help a bit, but the symptoms have never completely subsided. Out of curiosity, has anybody had a tilt table test? How are they? Are they stressful. The last cardiologist I saw highly recommended against it. He told me that it puts a lot of stress on your body and he has seen people die during a tilt test and assured me that my heart was good and there was no reason to take one. Obviously, he was looking for NCS though.

    • turtlebugbabygirl said,

      I am only 18 but have done a tilt table test .it is not stressful. I passed out on it and my heart stopped for nine seconds. I do not say this to scare you it’s not that scary u are strapped in and can’t fall. I felt weak after but that’s normal if u passed out

    • livingwithncs said,

      First of all, I’m sorry you’re feeling so awful :-( But I do hope this new doctor you are being referred to can find you some answers.
      I’ve noticed that I do feel generally better when I’ve been more active. I think it helps get the blood pumping, which keeps you at a good blood pressure. Sometimes it does have the opposite effect though… I think it depends on what the activities I’m doing are.
      The table tilt tests are definitely NOT fun. I’ve never met or heard from anyone that found it to be anything other than a miserable experience. Then again, what can you expect from a test that is designed to try and make you faint? If you’d like you can read the post I wrote about my experience, and you should read the comments on it also to see how other people reacted to it.
      Even though the TTT is horrible, I (keep in mind I’m not a doctor) would personally recommend to just do it and get it over with. The TTT is the only method cardiologists have at the present for diagnosing NCS with certainty. I’m not sure if they can give you the diagnosis without it, which may cause some problems down the line.
      I’ve never heard of anyone dying from it, but I know my heart stopped, as did several other people’s I’ve talked to. However, we all survived. I suppose if someone did die from it then we wouldn’t know because they wouldn’t be around to tell us. When you get the test done there are a whole lot of doctors and nurses around to do their best to keep you safe, and if you’re heart is good like this doctor says, then you shouldn’t have a problem. If there was no reason for you to take the TTT then there wouldn’t be anything wrong with you. Obviously in the end it’s for you and your doctor to decide on together, but I would see what this new doctor has to say, especially if he’s had experience with this. In my experience, the more opinions the better, and sometimes you need to bite the bullet to get things done.
      I hope everything works out for you and that you get to the bottom of this. Be well, and if you have any questions feel free to ask :-)

    • Pamela said,

      Hi Cam. I had a tilt test a couple of years ago and it was inconclusive. As you said you have bad days and good days. I had a really good day when I took mine and therefore the test gave good results. There was a lady that went in after me and she was in all sorts of trouble whilst having hers. She literally died on the table (they bought her back with CPR thankfully). So really it is up to you, If you can get in on a really bad day the results will give you a lot better guide line as to what is happening. All the best. Pamela

  14. Katy said,

    My 15 year old daughter was just diagnosed with NCS. She has a mild to moderate case but is an athlete who has several top university scholarship offers. But In the past two months we have seen her go slowly downhill. Out of breath very quickly into a work out, chest pain, pale, sweaty, headache,brain fog, and fatigue. She was diagnosed two weeks ago. We aren’t sure how much salt she should have a day and how much fluids. She has been drinking 5 20 ounce bottles of Gatorade a day, in addition to some tea and water. She takes 3 salt packets a day. Breathing and chest pains are better but she feels sluggish and not anywhere near the quickness she had earlier. Does anyone have a history with sports and NCS? Is she drinking enough fluids and getting enough salt? Thanks for any advice!

    • turtlebugbabygirl said,

      I swim and have ncs. I try drink as much water as I can . I would drink more then that and the salt I’m not sure . I try to make most of my snacks salty. It helps but the more salt the more water and they say that drinking water regularly with help with brain fog .

    • livingwithncs said,

      The amount of salt and fluids really goes by the individual. I think it’s something to ask your doctor about, but in my experience, every doctor has told me the more the better. I drink at least 2 or 3 of those gigantic bottles of Gatorade a day and I take 4 salt tablets every morning (in addition to making sure there’s a lot of sodium in what I eat), and sometimes take more throughout the day depending on how my body is retaining water.
      I don’t see any harm in drinking ridiculous amounts of Gatorade except a possible weight gain from all the calories, but I would ask her doctor about the salt. I would also prepare her for the possibility that she may not be able to continue with sports as she once did. With any luck she’ll go back to normal, but there is always a possibility that she won’t, in which case introducing the idea little bits at a time might be better than throwing it on her all at once. I always like to say hope for the best but prepare for the worst.

    • Cretia said,

      I stopped drinking caffeine for a while, When I tried drinking tea it caused an episode. Feel much better with out the caffeine!

      • livingwithncs said,

        It’s interesting with NCS and caffeine. Some people go out of their way to drink caffeine because it helps keep up their blood pressure, while others, like you (and like me), end up with an averse reaction to it. My symptoms always get much worse when I have a coffee. Maybe it’s because we have good blood pressure and the others don’t? Interesting to think about.

    • Pamela said,

      Hi Katy.
      Has your daughter tried PowerAde Zero. It has all the electrolytes with no sugar? Sometimes sugar can dehydrate the body. Its just a suggestion and I think its worth a try.
      Regards Pamela

  15. Cam said,

    Thanks so much for the information everybody! I’m hoping to see a cardiologist within the next few weeks for a possible tilt table test. After finding out about NCS I have increased my water intake substantially (120-200oz) per day and have also increased my salt intake a bit. I have felt much better over the last few days. Not sure if the water\salt is actually helping or if it’s just psychosomatic :) Could just be a coincidence too, as my symptoms come and go. Sometimes I’m good for several weeks with very limited episodes and other times it’s daily for hours at a time. Will be so nice to finally get this diagnosed. For me, the pay off of finally knowing what the problem is, is worth the stress of going through a tilt table test. I’ll keep everybody posted with the results and will also keep you posted on how I feel over the next few weeks with my increased water\salt intake. Thanks again!!!

    • livingwithncs said,

      The water/salt combo should actually help since it keeps your blood pressure up, but no matter how good of a routine you have going, there’s bound to be episodes and periods of time you feel awful. I have them, and just about everyone I’ve spoken to with NCS gets them as well. It’s just part of the long list of things you suffer through with this condition.
      Yes, please post with updates! I wish you the very best of luck!

  16. Cam said,

    Anybody know if nicotine has any effect on NCS? I chew tobacco and have actually stopped for several months in an attempt to reduce my symptoms, but it didn’t seem to make much of a difference. I know, I need to quit, but just wondering if there has been any documented connection between NCS symptoms and nicotine use. Thanks much!

    • Cam said,

      I’ll answer my own question and say “yes”. Nicotine constricts blood vessels therefore impairing blood flow. Probably has a impact on the symptoms of NCS.

      • livingwithncs said,

        Yeah, sorry :-( I’m not one for smoking or caffeine or anything of the sort so I really don’t have an answer for you. I can’t imagine it would be good for anyone though, which means it is probably even worse for people with NCS

  17. Cam said,

    Out of curiosity, has anybody ever tried Ginkgo Biloba to help with NCS? It’s supposed to improve blood circulation (specifically to the brain) by opening blood vessels.

  18. Caitlin said,

    Thank you so much for sharing this information! I was diagnosed with NCS a little over a year ago, after years of symptoms. My cardiologist is the one who gave me the diagnosis, but she didn’t really explain it to me. Just said to eat salt and drink water. This is the most information I’ve been able to find on it. Thank you!!!

    • livingwithncs said,

      You’re very welcome :-)
      You should ask your cardiologist for more information as well. If she refuses to give it, it probably means she doesn’t know a whole lot about NCS and would rather not admit it. It happens quite a lot since the condition has been very rare.
      Good luck and feel well!

  19. Cathy said,

    I was diagnosed with NCS about 6 years ago. The doctor put me on Nadolol, but never really told me anything about it. The tilt table test was awful (and I had to have 2 of them), but it was conclusive that I had NCS. I have since come to find out that there is about 8 of us in our family that have NCS! This has been a really informative site! I stumbled across you site about 3 weeks ago, because my symptoms have gotten worse again. My cardiologist can’t see me for 2 more months, and I feel at a loss. Last night my bp was 88/50, and I couldn’t stay awake. I have added Gatorade to my diet after I read your site, and I have always been a coffee drinker. I just absolutely hate the feeling that I have been dealing with, and I know it is the NCS that’s causing it. I may have to check myself into the hospital to get someone to take me serious! LOL

    • livingwithncs said,

      Wow! 8 family members! I’ve met a few people who have kids that ended up with it, but I’ve never heard of it being so prevalent! I pray every day that my son doesn’t end up with it.
      Maybe see a new cardiologist who can see you more often? It’s crazy to have to wait 2 months. I’m actually going to be making a few posts as soon as I get the time that relates to some of what you’ve said. I’ve been meaning to for a while now, especially with some recent experiences I’ve had, but life has been keeping me extraordinarily busy.
      I’m sorry to hear your symptoms are worsening. It’s always awful when that happens, and it can be really frustrating and scary too if suddenly what you’ve been doing for a long time stops working. I wish you all the best. Hang in there!

  20. Bobbi Childress said,

    According to my daughter’s electrophysiologist, testing for dysautonomia related problems is poor. Her tilt test showed no changes in heart rate or blood pressure, yet she passed out during the test and shows all the symptoms of having NCS. His response is to treat it as though it is NCS without having the positive test result. She has just started Florinef and takes 40 mg of Prozac daily. Our biggest problem (no surprise) is that I can’t get her to drink enough during the day.

    • livingwithncs said,

      I completely agree that testing is poor. NCS is very random. One day you can feel great and all your tests come out negative, but two days later you have a terrible day and everything would come out positive. I recently went to a new doctor who rarely does any testing because he says the results are extremely unreliable.
      Keeping super hydrated is one of the most important steps in remaining healthy. Do whatever it takes, even if you have to put some Mio flavoring in it or make it have funky colors, Crystal Light, etc. Heck, make a star chart if you have to lol.

  21. Angela said,

    Hiya. Thanks for writing an article that explains NCS so well. I was diagnosed with it two years ago, but I’ve had it since I was 15 and doctors thought it was anemia. When they finally got to the bottom of things, it was a relief. I don’t have as severe a form of NCS as it seems most people who commented do. My cardiologist told my parents and me that they caught it in an early enough stage that I won’t have to worry about actually fainting. Until reading this article, I never knew it could actually lead to someone being handicapped.

    This is an article I will definitely show to my friends who don’t quite yet have a full understanding about what NCS really is.

  22. Jim said,

    I am 66 and have had ncs since I passed out in fifth grade discussion on cancer. In HS drivers Ed I always had to leave the accident movies. My family Dr. In Dallas told my about 8 years ago, I had ncs. I had many dizzy and fainting spells throughout the years caused by heat, physical, and mental stress without knowing it was connected to my fear of seeing blood.
    Now, when I get blood drawn, I always ask to be laying down. I take inderal every morning before working out and carry pills with me at all times to take in stressful situations like when I do public speaking.
    Thank you for a great article.

    • livingwithncs said,

      I can’t even imagine having to go decades without knowing what was wrong. That is some strength you got!

  23. Mairead said,

    Thank you so much for that informative article! I have been suffering from this for years and everyone told me I was crazy or lazy or depressed. I finally have been diagnosed with NCS and am hoping to feel better soon. I found the information very helpful and it is nice to know I’m not alone!

    • livingwithncs said,

      You’re very welcome, and I also hope you feel better soon! You are definitely not alone!

  24. turtlebugbabygirl said,

    So I’m only 18 But I was told because I have ncs that I can’t have kids … and that scares me . Please tell me they are wrong

    • livingwithncs said,

      They told me that as well. I have a son now, so obviously I did it anyway, but it made the NCS MUCH worse. I’ve met and talked to some women who felt much better from the NCS during and after pregnancy, and others, who like me, had a bad reaction to it. It’s definitely a risk, and while I do want another one, even I am saying that I can’t do it because I fear what would happen to my body, and I’m not sure it could handle carrying a baby for 10 months again. At this point I feel it would be a risk to my life to have another. But that’s just me, in my particular situation. I’ve known of women with NCS who have several kids and are perfectly fine. It really just depends on the person and the individual’s situation.

  25. Betty said,

    Thank you for this! I started having fainting spells after my second daughter was born in 2004. For years I was seen by different doctors. Some told me it must be a hormonal imbalance, some told me it was all in my head, and I even had one doctor have the nerve to tell me that people don’t “just faint” so I must be looking for attention (my husband was deployed to Iraq at the time). One doctor finally wished up and sent me to a cardiologist, but the only thing he could find was an arrhythmia, and was ready to settle with that as my diagnosis. Finally, in 2011, I had a tilt table test done… The last thing I remembered while I was on that table was hearing the monitors beeping, seeing my heart rate dropping into the 30’s, a LOW blood pressure(can’t remember now what it was), feeling the heat in my face, and the room spinning right before it all blacked out. I remember walking out thinking and hoping that they Finally know what’s wrong. The doctor gave me the diagnosis of ncs, prescribed florinef, told me to take in extra salt and potassium supplements, but gave no other explanation. I had always heard that salt was bad for you so I haven’t been taking in any extra. Does this really help with the extra fluid intake?

  26. L said,

    I was diagnosed with NCS a few months ago. My mom and grandma also have it. I’ve had serious chronic fatigue for years (now seemingly sue to NCS). I’m also hypoglycemic which seems to sometimes bring on NCS episodes. I take Florinef daily and ProAmatine as needed when I start to feel sick. Some of my triggers are heat, stress (final exams!), not eating (also probably related to the hypoglycemia), needles (I have to lay down when getting my blood drawn), the sight of blood and gruesome injuries. Also, caffeine seems to make me feel worse or even trigger an episode. I am just now getting over an episode and chugged a Gatorade and downed some salt straight from my hand. Thanks for the tips! My cardiologist is actually at NW Ohio cardiology consultants. My mom’s original doctor for NCS was Dr Blair Grubb who is a known expert on this condition. She takes different medication for it than me; Lexapro and Ritalin. My mom’s NCS is worse than mine, she can’t have more than 1 alcoholic drink and before she had medicine to treat hers, even a rich dinner would send her into an episode. I remember as a child seeing her laying in the bathroom floor by the toilet and my dad telling me she’s having another “spell”. I don’t think my medication is as effective as hers, though. This condition is seriously debilitating and it’s extremely frustrating how most people don’t or won’t understand it. I’ve been called lazy, weak, and pathetic more times than I can count. Thank you for this article! I will share it with my friends.

  27. Dannielle said,

    I just want you to know how much I love your blog. I found this after one of my various NCS research sprees, and am working my way through all the posts.
    I was diagnosed with NCS about 2 years ago, just after my 21st birthday, after almost 7 months of weekly fainting spells including a hospital visit where I legally died 3 times. I tried Midodrine, Fludrocortisone and so many other types of meds but nothing helped. I had a Pacemaker implanted last July, after one too many close calls with drastic heart rate drops alongside the BP drop.
    Your blog has been filled with so many of the same concerns, problems, feelings and emotions that I’ve had over the last few years and some of your tips and ideas are ones i still use to this day- even when its more under control than ever before. So thank you for being able to put down everything i could never explain before!

  28. Shannon said,

    Thank you so much for this blog!!! I was just diagnosed with NCS on May 9th. This started very abruptly and became a monster within a couple of months. I fainted for the first time ever back in October of 2013 and by the time I had my diagnosis in May of 2014, I had fainted 8 times and near fainted 4-including once while driving. Scary! I was not allowed to drive, exercise, or even be alone with my children until I was diagnosed. I now take Midodrine and I have not had a single episode since-except for just this past Sunday when I forgot to take my second dose. I will never do that again. LOL. I will be an avid follower now.

    Thanks,

    Shannon

  29. Michael Barbarick said,

    I was diagnosed with NCS about 10 years ago with a tilt table test after going through several years of ohter tests. I have been on Atenol , however recently can take this as it creates a foggy mind- im switching to Losartin ( potasium based drug) . My doctor told me to avoid caffeine and alcohol as they are diuretics. Over the years my symptoms come and go recently been having very bad symptoms.Sometimes it is the heat or excessive stress or it seems to act up I im eating alot of carbs and junk food.. You have to really watch your diet and drinking lots of fluids, eat alot of salads and vegtables and watch the starches. I exercise fairly regularly – but don’t overdo it as this can dehydrate you. The key is to mange this disease from many angles, diet, exercise, fluids,maintaining a calm lifesyle. All of this is very hard to do as we are only human and we all enjoy beer and pizza , we also have to overextend oursleves in todays world for making a living.

    Good Luck

  30. Brooke said,

    Hi my name is Brooke i have been living with NCS since i was about 12. Doctors had no idea what was going on i had just about every test you could think of. I finally had to go to childrens hospital in seattle where they diagnosed and they told my parents i would grow out of it in my early 20s. I did not! i still have episodes occasionally when i get very stressed or excersie too much. i can say it has gotten better since being on a couple of medications but it is still hard to live with. when i do have and episode sometimes i cannot move for hours the longest has been 4 days it is hard to work a full time job because most things bring out triggers that make me collaspe like heat and moving to fast among a whole endless list. i found your artical very interesting and helpful. I was terrified to drive till about the age or 24 and even now i still get scared to drive sometimes.

    Does anyone else have super sensitive skin when they have an episode just currious?
    Thanks

    • livingwithncs said,

      Hi Brooke, I noticed that when they diagnose you as a pediatric they always say you’re likely to grow out of it. Sometimes you do. I wasn’t one of them, and it seems neither are you. I almost wish they wouldn’t say it quite like that. I think it gives a false hope. I’d rather have been told that people have been known to grow out of it, but that isn’t always the case. This way I can prepare for the worst. I’ve stopped driving at this point. I used to drive a few years ago, but I was feeling better then. Once I became pregnant everything went downhill and I’m terrified to get behind the wheel of the car- not just for my own safety but for the safety of the others on the road.
      I don’t have sensitive skin when having an episode, at least not that I’ve noticed. But people with NCS are just so varied for everything, and what’s normal for one person could be abnormal for another.
      Hope you’re feeling well and staying out of this awful heat!

  31. Dee said,

    I’ve had NCS since about 1997. Am on Norpace, Proamatine, & Florinef. Have also been told by my cardiologist to use 5,000 mg of salt per day.

    For me, my most common triggers are illness or being over heated.

    Have passed out numerous times & received multiple injuries – broken bones, cuts, abrasions, black eyes, etc.

    I always have fluids with me at all times.

    One thing I was told, though, was to AVOID caffeine, as caffeine can act as a diuretic & you definitely don’t want to lose fluids. Any one else been told this?

    We also have discussed possibly putting in a pace maker, as this can help some people with more severe NCS.

    • livingwithncs said,

      Heat is the WORST. I always keep a little portable (but powerful) fan with me in my bag everywhere I go.
      Every doctor I’ve seen reminds me at every visit that if I feel like I’m going to faint I need to immediately try to lay down or get as low to the ground as I can, because the only long term issue isn’t going to be the embarrassment of lying down wherever you are, but all the aches and pains you’ll suffer on your way down. I fainted in a bathroom once and I hit the sink, toilet, and tiled wall before finally hitting the floor. I was very lucky I only sustained bruises and nothing broke. Please be careful!
      I’ve heard some people were told to avoid caffeine, but then I was told by others that they were encouraged to drink things with caffeine because it will help keep their blood pressures elevated. I think it really just depends on the person and what they can handle. When I drink coffee, for example, I end up feeling really dizzy and slightly fainty.
      One of the doctors I went to wanted to put in a pacemaker but I turned it down because I didn’t like the permanence of it, especially if it’s possible to outgrow the condition. I don’t regret my decision, especially since I’ve been told that it doesn’t actually do much to help. It went something like, “Now when I faint I have a really great pulse.” But others do say that it’s helped. That’s the problem with NCS. What works for one person doesn’t work for another.

  32. Jessica Gleaves said,

    I was just diagnosed with NCS last year and I thought I was alone. It has interrupted my life. My DR has mentioned to me that I have the worse case he has ever seen. He is currently switching my meds again and if this doesn’t work sending me to specialist in Tennessee. Honestly I’m terrified. I’ve done everything my Dr has told me to do and I don’t feel like it’s helping. Any suggestions on other things i can do to try to help.

    Thank you,
    Jessica

    • livingwithncs said,

      Jessica, I hope you can feel me virtually hugging you! You have every right to feel the way you do. I think everyone with NCS has felt that kind of fear at some point. You’re not alone! I promise, it’s survive-able. Don’t give up hope. It took my doctors two years to find the meds that worked best for me, and even now they’re still changing them. It’s a process of trial and error, and it takes time and patience. The best suggestions I can give is to stay cold, drink a ton of water, eat gobs of salt, and limit the things that make you feel worse or trigger episodes. Listen to what your body tells you. If you don’t feel good in a hot shower (my worst trigger), then take warm showers instead of hot, leave the door open to minimize steam, and use a shower chair so you don’t have to stand the whole time. Little tricks like that can go a long way.
      I’m so sorry it took this long to reply, my life’s been a madhouse, but I’m always open to talking. You can e-mail me at livingwithncs@yahoo.com
      Hang in there! Things will get better.

      • Jessica Gleaves said,

        I just saw your reply, Thank you for the tips and the reply. I really appreciate it. Well I found out that I’m being sent to Vanderbilt NCS Clinic which is almost 10 hours away. I hope they can figure out something that works.

        I hope your doing well.

        Jessica

  33. Melissa P said,

    So happy I found this! My husband has been struggling with this since before we got married (12+ yrs) Good to know he’s not alone! He wasn’t diagnosed for a while and all the Drs thought he was crazy. This is the first post I’ve read but I plan on wearing out this site to find out all I can.

    • livingwithncs said,

      You flatter me! :-)
      He’s definitely not alone. I thought I was alone for 6 years, and that was entirely too long. I hope that by sharing my experiences you both can find something helpful, even if it’s just knowing that others suffer the same way and share the same problems. Please feel free to pick my brain. It’s why I started this blog. livingwithncs@yahoo.com

  34. Tammy said,

    Diagnosed with NCS almost 6 years ago. Have been on 50mg of metoprolol daily. Even to this day if I get dehydrated, extremely stressed or overheated, the symptoms show their ugly faces. I just recently went to busch gardens. Did 1 roller coaster and at the end of the ride was so dizzy I couldnt stand up. That was 4 days ago. I have had several “pre-fainting” symptoms & heart palps going on. I almost always get symptoms when I’m sick because I know that im dehydrated.

    My dr has never said specifically no coasters but im thinking the g forces of that coaster is why I’m feeling these symptoms! I have been drinking plenty of water & gatorade so im not dehydrated.

    I assume I need to retire from riding coasters? How about flying? I haven’t been in a plane for years but it concerns me now. Would that trigger NCS symptoms? Going to see a brand new primary doc next week.

    Any thoughts on the coasters & airplanes?

    • livingwithncs said,

      Oh my gosh, nooooo! Don’t do roller coasters! LOL. At least, not ones that spin or go upside down. Here’s my deal: I make a pouty face and pass by the really awesome roller coasters that go upside down. I do all the calm rides in the park, like It’s a Small World, and then right before I’m ready to leave for the day, I go and do Thunder Mountain (non-upside down. That is important.). This way, when I get dizzy and start feeling episodic, which I know I will, I’m going home anyway which means I can just stay in bed till I recover. I suppose I really should retire from riding roller coasters, but I just can’t. Not completely, anyway. My suggestion is if you can retire, then do it. If you absolutely can’t, then do everything else first, pick your absolute favorite one that does not spin or go upside down, and do that one last. But make sure you have a wheelchair to get back to your car, because you’re going to need it :-P

      As for airplanes: I’ve gone on one round trip plane ride to Europe since being diagnosed with NCS. I didn’t feel great afterwards, but I didn’t faint. Then again, I was also feeling better at that time. If you asked me to go on a plane right now, I’d say no, because I have a feeling it wouldn’t work out so well for me. It really does depend on the person. I would ask your doctor first, and then go with your intuition. A doctor might clear you to fly, but if you’re gut is saying you’re not well enough, then that’s probably the answer.

  35. Dee said,

    Jessica, you are far from being alone! What you are feeling, is pretty normal & understandable.

    NCS can be most frustrating. Like you, I have NCS pretty severe & my cardiologist tells me he has never had a patient on as much meds as I am on & still have problems. Ugh!

    Have also been told to lay on ground or get down low, but many times I have little to no warning. It’s strange to think that with all the modern medicines & technology, that they can’t come up with a better treatment regement for all of us.

    • Jessica Gleaves said,

      It is very frustrating. How do you handle it? For me Its like a roller coaster. I have a good day, then a few bad days. And I think one of my problems is I’m stubborn and try to push through it. I feel like it has a control of my life and I’m way to young for that. My kids suffer as well. And then my husband is amazing. He is always helping me and taking care of the house when I can’t. I don’t know what I would do without him. But I feel so bad. Its really depressing feeling like your life is on hold.

    • sue shaw said,

      Is there a medication a person can take for NCS?

      • Tammy Knott said,

        My doctor has me on Metoprolol as a betablocker. I take 25mg 2x a day. I don’t have any issues anymore unless something unusual happens like a very stressful situation or im severely dehydrated.

      • Dee said,

        My triggers are primarily heat & illness. Those two triggers are huge for me.

        My meds are Norpace, Midodrine, Florinef, and 5,000 mg of salt per day plus lots and lots of non-caffeinated fluids.

        Finding triggers is definitely important in living with this daily.

      • Tammy Knott said,

        Yes! Heat is another big factor for me as well. I do drink alot of Gatorade along with water. Living in the Florida Keys it gets very hot so I need to be very careful!

      • Dee said,

        Tammy, there are numerous meds the use to help with NCS. They use cardiac meds, certain antidepressants, salt retaining pills, etc. They will also tell you to eat more salt, drink lots of fluids, drink Gatorade or powerade, etc.

  36. Dee said,

    Livingwithncs – I just this summer got a portable fan gat I can carry with me. It is battery operated & spritzes water, too. Great idea!

  37. Dee said,

    I just heard from one of my doctors, too, that the droxidopa was finally approved. Wonder when it will be available? He said he thought the droxidopa would be a better med for me than the Midodrine.

  38. sue shaw said,

    Wow! This article is so interesting and describes what happens to me to a T. I feel so blessed to finally figure out what the heck has been going on with me for years. Everything in the article hits home. All the remedies, I already do! Can;t thank you enough for all this information.

  39. sara said,

    Thank you for the information. I had a positive tilt table test 9 yrs ago and was never told there was a name to my orthostatic intolerance. I was only told to drink water and eat more salt. Luckily, that worked for many years. Now, i am five months pregnant and completely inapacitated. I have fainted while lying down, while sitting, and absolutely any time i attempt to stand for 3 to 5 min. My new cardiologist declared NCS, and i am happy to finally have a name to this beast. The cardiologist and OB however have told me that meds are not safe during pregnancy, so i am left with behavioral approaches (compression hose, salt, water, avoiding heat) that dont seem to make me any less symptomatic. I have to have a csection due to pSVT (arrhythmia) but cant imagine how i will cope with four more months, especially if symptoms get worse.

  40. Paul Capello said,

    I am 56 years old and started passing out at age 40..I have been diagnosed with NCS for 15 years. I have been on Toprol XL 75 Mg until recently. I started experiencing the spells again in June and had a full blown episode in my Electro-physiologist’s office on the EKG table.; The doctor witnessed me on his floor with my legs elevated as did his nurse and my wife. I thought I had this under control as I had no episodes until recently. He upped my dosage to 150mg. When I was first diagnosed with this in 1999 we added Midrodrine and it seemed to work. He did not seem to think that adding Midrodrine would help. I see him again on the 25th and have to let him know that the added dosage seems to be working but really makes me lethargic. I too have a pre-syncope symptoms where my palms get sweaty and my back starts to ache. I also firmly believe that the Heat brings this on as when the temperature gets hot and humid my body reacts adversely. Also, there are support groups for this as when I lived in Ft. Lauderdale they met on a recurring basis. Please have faith in your doctor and listen to your body.

  41. Lisa said,

    Hello! I’m happy to find this blog. First of all, I have not been diagnosed with NCS. If it is what I have, it seems to be a mild case in that I have experienced fainting episodes less than once a year. However, I’m usually able to predict when I’m going to have them. My “trigger” seems to be blood. However, I’ve had episodes from abdominal discomfort and one from my son falling out of a bunk bed. I’m not certain whether that one was related to the emotional stress of that experience or due to the quick change in position. I was in the room with him, sleeping in another bed when I awoke to a “thud”. I have had mild episodes due in which I have felt dizzy and all of the sudden become very warm. This most recently happened yesterday when my son showed me the blood related to his tooth that he just had pulled. I’ve also noticed the anxiety I have from my clausterphobia also has lead to me feeling dizzy / warm. Due to the mild episodic nature of what I believe to be my NCS I have not sought out a diagnosis. My family doctor is aware of my episodes and we have decided together for me to see a counselor to learn of techniques I can use to help me. It have only recently (today) read about increased sodium and fluid take to help with this. I have been suffering with very mild symptoms of this since I was a child. I believe I only had 3 fainting episodes between the ages of 10 and 18. However, I have found that these episodes have increased considerably in the past 10 years (since I’ve had my first child). I have experience 8 episodes of fainting in the past 10 years. What concerns me the most is that, although I’m aware that I’ve experienced a “trigger” I don’t always feel as though I’m going to faint…and there is no “seeing of spots” or “feeling dizzy” and then next thing I know I’m coming out of a fainting episode. I’m very concerned that I may have an episode while I’m driving or doing another activity in which fainting would be fatal. In addition the embarrassment that goes along with these episodes or even acknowledging that I may have an episode is getting to be difficult to deal with. Generally, I’m a pretty outgoing person and I enjoy being out of my house going places, meeting people. But, I’m starting to feel stifled by this condition. I especially feel this way because I am almost more afraid of the loss of consciousness / control than I am of the mentally stressful situation I am in. When I come out of the fainting spell I uncontrollably scream. And then of course there’s the tears and the nausea that follow. During my last episode, my husband, who is generally pretty nurturing asked me “Why are you crying….you are freaking out the kids”. That just crushed me. I don’t want to scare my children….I do not want to pass out…I don’t want to feel bad.

    When I went to see a counselor (I went one time -*hangs head in shame*) she recommended I try meditation to try to behaviorally modify my reaction to triggers. She said that in practicing meditation I may be able to utilize the techniques to control how my body is reacting to the stimuli. I’m curious as to whether anyone else has heard of this, tried this, been successful?

    Thank you for having this blog. I’ll be visiting and perusing your blog often.

  42. Dee said,

    Jessica – you just do the best you can!

    Like you, I used to always try to push through, but that just didn’t work for me & I ended up with more injuries.

    Now, if I have any warning, no matter what I am doing, I just have to sit down. When doing some thing where I’m on my feet for a long period (chopping veggies, etc) while making something, I sit at the kitchen table & chop with the cutting board. Use a shower chair in case I get light headed while in the shower. If that doesn’t work, have been known to get out of the shower for a few minutes & just sat on the toilet seat lid,

    Have had to get out of line before, had to stop stirring my rue when cooking, to go sit down, etc.

    Now have a large pedestal fan that is in front of my recliner to help cool me off quickly. Also, domed times just run a wash cloth under cold water & put it on my face or on my head, etc.

    Some times, no matter what you do, it still happens. Frustrating, yes, but I try to deal with it as best I can & try to not push through so I can hopefully prevent so many injuries.

    Just this past May, I was doing some heavy cleaning, got over heated, went to move a large box of stuff & passed out, dropped the box on my foot & had a hairline fracture. Stupid on my part, as I knew I was getting too hot.

    Ugh!

    Hang in there, work validly with your cardiologist (keep a log if you need to), and just know you are not alone! We understand!

  43. Lesley said,

    So happy to have found this blog! I have had NCS pretty much my whole life, but only started having fainting episodes at 21. My main symptom is nausea. I’m nauseous all day. Heat exacerbates this and if I can’t get a handle on it, I’ll vomit or at worst, faint. I, too, had been to doctor after doctor who couldn’t find anything physically wrong with me. It was so frustrating! I was eventually sent in for a tilt table test and didn’t faint on the table, rather promptly vomited instead. I suppose my NCS is mild, as I only have 2-3 episodes a year, but after a particularly scary episode landing me in the ER, my mother demanded I once again try to get a handle on my condition. She was terrified that I kept passing out on my bathroom floor. I found an amazing cardiologist that suggested the one thing NO OTHER DOCTOR had suggested. What is so clearly known on this forum. Salt. It has helped tremendously! I am so glad to know that others are living with the same condition and that I’m not just some weird girl with stomach issues. Since my main symptom is nausea, marijuana has also helped immeasurably. Glad to know there is a forum out there for us!

  44. Paul Capello said,

    Finding what triggers this is also key. In my case its the heat, stress and eventual adrenaline. I originally took Toprol, Midrodrine and Paxil. Then added a daily salt tablet.
    Salt and lots of Gatorade and water seem to work best for me.

    The doctor reminded me that this condition is triggered by adrenaline and that that is stopped by the Beta Blocker. Midrodrine affects the severity of the reaction and Paxil is for the stress or anxiety associated with this.

    Exercise also helps.. Just throwing stuff out there for the group…Hope it helps.

  45. Dee said,

    Lisa, there are many times I pass out without any warning at all, too. Some times I get a bit of warning, but many times I don’t. In fact, my most recent tilt table test, I had no warning what so ever. The tech doing the test said – one minute you were talking & the next minute you were out cold. Yep, I told her, that is usually how it goes.

    • Sarah said,

      Hello
      This page is like a breathe of fresh air, it really is a relief to know that there are other people that suffer from NCS, my name is sarah and I was diagnosed a few weeks ago by having a tilt test, the one time I wanted to faint and didn’t, still my blood pressure did drop, I’ve been diagnosed with mild NCS, I’ve been living with this since late teens u am now 38, the problem I am having is work, I am a chef, which as you can imagine isn’t a good environment with NCS, I have struggled the past two years in the kitchen spent a lot of time off sick, my employers are great and very understanding, I am currently on the sick again whilst trying to sort the right sort of medication, currently on 500g Fludrocortisone daily, I really love my job but no I can’t continue on and off the sick, I would love to know where do I go from here as I don’t want to give up work,but also have come to terms with the fact I can no longer be a chef.
      I will continue to read on as I am finding this page very helpful, so good to know I’m not alone, I am able to finally talk to people who can relate to this madness

      • Dee said,

        Sarah, have your doctors tried anything else besides the Florinef? How about Midodrine, Zoloft, or anything else? Have they suggested you try adding Gatorade?

        I’m on Midodrine, Florinef, Norpace, plus I was told to use 5,000 mg of salt a day & to drink lots of fluids. Gatorade or Powerade also helps on bad days.

  46. Debbie said,

    My name is Debbie I was just diagnosed with NCS. As I was reading this blog it made me feel so much better that I am not alone in this. I have read others getting diagnosed by a tilt table test. Well they are not always accurate. I was very lucky that I had a Dr. Who would not give up on me. I could not walk 15 steps without falling to the ground. My tilt table test was within normal range. Last week I went to the Hospital to have an exercise test and my heart stopped for 1 minute. That was not fun but at least I know I am not crazy now. Thanks for this blog and all the comments. I have learned so much.

  47. Phyllis said,

    After so many tests and being diagnosed with NCS, no doctor will address my fatigue and depression. I absolutely feel like doing nothing, which of course makes me even more depressed. HELP! I have been told by “friends” I need to go to a psychiatric hospital.

  48. Dee said,

    Wow, Debbie, scary!

  49. Dee said,

    Phyllis, have you tried talking to your primary care doctor about the depression? Your primary care doctor should be the one to address that issue. & refer you if he/she feels it is necessary.

    Depression can also lead to fatigue, but then, so can the NCS / low BP.

  50. carrie said,

    Hello all, I was also diagnosed with vasovagal syncope and for a long while I thought it was my mind. I am not sure how or where it came from however, I have it. There were times I would be driving and just pass out. My doctors had me going from doctor to doctor to get no results. Finally one decides to do the TTT. That is how I found out what was wrong. I am not able to work because I am always passing out. How do you deal with this? I use to be a manager and now I can’t do anything but my state said I should still be able to work can some one tell me how?

  51. Fibrowoman said,

    I have also been diagnosed with NCS. I didn’t have a clue as to what it was, but if I just bend over to get close out of the washer and put them in the dryer, I would give out of breath, but just walking, I am pretty much ok. I also have Fibromyalgia and I thought that was what was wrong, but my Rheumatologist sent me to a Cardiologist and I had the TTT. IT WAS AWFUL!! The Nitro was put under my tongue and here we went…I had the most awful feeling all over, the top of my heart quit and my beats were around 40. The Cardiologist put me on Zoloft and it seems to help. I just know my limits and I don’t like them, but it’s just something I have to live with. It could be worse..God bless everyone..

  52. Christy said,

    I actually have a couple questions. Can NCS cause seizures?

    I’ve had whatever this is for 10 years. I was diagnosed with Vasovagal Syncope with I was 13. They said that it would go away by the time that I was 21. It didn’t, It got worse. Stupid things will trigger episodes. Spicy food. Sneezing. Eating in general. Stretching. The list goes on and on. They tried all the medications and nothing has helped. They were going to put a pacemaker in, but then they realized it would not help at all.

    • Amanda Carter said,

      I just got diagnosed with mastocytosis after thirteen years. People with mastocytosis have multiple triggers, and it can cause syncope. I wound suggest getting tested for masto.

    • Alycia said,

      At 12 years old I was diagnosed with a seizure disorder. Now at 41, after having what they thought were back to back seizures and having my heart stop 3 times I was properly diagnosed with NCS. I now have a pace maker and it has helped control most of my symptoms. I have not passed out once since getting my pacemaker. As a matter of fact I would not be alive if it wasn’t for my pacemaker. I am not a doctor, but as some one who has seen the difference they can make I would recommend a second opinion for yourself to see if a pacemaker would help you. Best of luck.

  53. Dee said,

    I went through testing for mastocytosis, but thankfully they said I didn’t have it. I do gave CVID, which can also trigger my NCS. Not fun. They usually won’t text for mastocytosis unless you have certain blood work abnormalities & the symptoms that go along with mastocytosis.

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