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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59 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.

  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!

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