Detrick7

Maybe I am weird, but I was looking forward to my tilt table test. My cardiologist told me his was very certain I had NCS, regardless of what the test said, so I was not worried about the actual result. As you have probably read there are false positives and false negatives. Any test that can help the doctors treat my symptoms or eliminate other things wrong I am all for. Wear whatever clothes you are comfortable in. I wore athletic pants, a t-shirt, sweatshirt, and tennis shoes. I had to take the sweatshirt off to put the hosiptal gown on but that was it. I know fainting is not fun, and I am lucky that I just almost faint, but unlikely that it is pretty much daily. However, my mindset going into it was, this happens to me pretty much daily, so if they can make it happen in a controlled medical setting bring it on. I almost fainted three times during mine, twice with no meds, and once with. I don't remember the name of the medication, but it was something that sped up your heart rate. I can only speak for what my cardiologist said, but he said he uses the tilt table test more for determining treatment than diagnosis. Good luck, hope your test goes well.

Welcome Erika. As someone recently diagnosed with NCS by my cardiologist (about 3 months ago) I wanted to share a few things with you that I hope you find helpful. I really hope your cardiologist is familiar with POTS, NCS, etc. if not don't be afraid to try another cardiologist. Some doctors are much more familiar with forms of dysautonomia than others. Your cardiologist will probably do a Echo test and an EKG to make sure nothing is structually wrong with your heart. Assuming this comes back normal, which very, very, very likely it will based on your age the discussion of POTS, NCS, etc will probably start. I am 31, and similar symptoms as you, pretty much daily presyncope (especially in the morning), tired all the time, and stairs kill me. I was really worried that something was wrong with my heart, but to qoute my cardiologist "you have the healthiest looking heart I have seen in a long time". At this point, I still had no idea what was wrong with me and I had been to half a dozen doctors in the past year and a half. My cardiologist told me he knew exactly what was wrong with me, NCS. He ordered a tilt-table test, but told me no matter what the result of that he was very confident I had NCS. Tilt table test have both false negatives and false positives, and the results of it he just hoped would help him determine the best way to treat my NCS. The point I am trying to make here is don't get to hung up on the results of a tilt table test (if you have one) and don't worry to much about your symptoms the day of your appointment. If you are fainting or almost fainting (I just almost faint), are tired all the time, are 23 years old and get very tired climbing some stairs this is not normal, and assuming your heart is structually fine it is most likely some form of dysautonomia. What you tell your cardiologist is most likely going to be more important than anything they "find" at the appointment, because most likely the tests (ECHO, EKG, etc. etc.) will come back normal. I did not faint during my tilt table test, I did almost faint 3 times and my heart rate and blood pressure went all over the place. As you know the tilt table test is basically standing still for 20 minutes. Just like you I was really hoping to faint during my tilt table test. I actually wish over the years I had actually fainted, it would have made me get it checked out much sooner. When my doctor told me I had NCS, I had no idea what it was, and he gave me some literature to read and some websites. I had a similar reaction you did when reading about NCS, something I had struggled with for 15+ years in silence because I thought it was weird finally had a name and described EXACTLY what was going on with me. It was a very liberating moment. Good luck with your doctor appointment, let's us know how it goes. In the mean time as you have probably read you should increase your fluid intake (water and/or gatorade type drinks) and possibly increase your salt intake. At the direction of my cardiologist I tried dranking a 100 oz of water/G2 a day along with a high salt diet. Unfortunately it did little to help my NCS symptoms and had to go on medication, along with drinking lots of water and the salt. If you would like to hear more about the different types of medicaitons and doses I would be happy to share. Lance

I drink G2, I think the taste a lot more than water. I think it helps more than just plain water, but that maybe in my head

I am a male, 5' 10" 185 lbs, which is about the heaviest I have ever been (31 years old). I think more females than males has something to do with guys being less likely to go to the doctor, I had had NCS for about 15 years and first went to the doctor for it a little over a year ago. However, the gap seems way too big to be fully explained by that. I remember when I had my tilt table test the nurse saying there were not many males with NCS and in her opinion that was part of the reason for lack of medical money and time spend studying it. Therefore a less of an understanding of the condition by the medical community and general public. I hope that in today's day and age that would not be the case. I mentioned that to my wife and she agreed with the nurse. Maybe this is a "hot topic" issue, but thought it was interesting that the nurse made that comment and would never have thought of that myself.

I did not tell anyone about my symptoms for many years (about 15). I thought it was weird that I would almost faint (don't actually faint), many times twitching and with nausea, but didn't tell people or doctors because I didn't want strange looks. I finally told my wife, who of course wanted me to go to the doctor. Classic case of going to many doctors and lots of weird looks. Finally after being diagnosed with NCS, I am much more willing to talk to people about it, at least the condition has a name. However, I have found that still trying to explain to people gets lots of strange looks, so I only talk about it with close friends and family. This forum is nice because you know everyone is going through something similar and makes it easy to talk about.

The sleep deprived EEG was to bad at all. Staying up late is never a problem, getting up early after staying up late was not fun, but pulled myself out of bed and went into work early. After seeing the average hospital bed with a rolled up towel for a pillow I thought no way I am going to fall asleep for two hours (I thought the whole thing was going to take 2 hours, nope I was expected to sleep for 2 hours in the middle of the day ). However, after laying there and having them mark my head and then attach the numerous electrodes I did get pretty sleepy. After doing the breathing excercise (deep quick breaths for 4 minutes) it didn't take me long to fall asleep. This was a big surprise to me because I don't really nap well, especially in a strange place. I slept for about 1.5 hours, I did walk up many times, but that is normal for me and was able to fall back asleep. The room was warm and they even told me they could adjust the temp up or down if it would help me sleep. I thought that was nice, as you had mentioned the room was very cold when you had yours. They did the strobe light thing at the very end. I am glad they did. That was kind of freaky. I don't think I had a seizure, but the strobe light was surprisingly unpleasant and I could not concentrate or talk when it was flashing. I am still not 100% sure why the neurologist ordered this for me, I think it was just to rule out all seizure activity. I prodded the nurse for info since who knows how long until the doctor calls with the results. I know the nurses "techincally" are not supposed to tell you anything, but she said I should not spend time worrying before the doctor calls with the results. It was an interesting experience and if it helps rule out things that are wrong with me I was happy to do it. Not something I would want to do again, but I can't remember the last time I took a nap in the middle of the day

I do not function well when tired either, the more tired I am the more likely I am to have an episode where I almost faint. Even if I am very tired I don't think I will be able to fall asleep in a strange room either, but I guess we will see.

I was wondering if anyone has had a Sleep Deprived EEG done? I am not worried about the test or anything, just wondering if they will find anything that could be helpful. My neurologist ordered this for me and I go in tomorrow for the EEG. Basically from what I have read I don't get much sleep tonight, then tomorrow they will hook up electrodes to my head and look at my brain while I lay down for about an hour. Nothing painful or scary. As always, I thought of additional questions after the appointment with the neurologist was over. What if the test is abnormal, then what? I am fairly new to the dysautonomia world, I have had NCS for about 15 years (I am 31) but was just diagnosed a few months ago. I have had a tilt table test done and was put on Citalopram (Celexa) for about a month ago, I was happy with the how this helped but side effects caused me to go off this medication. I was put on midodrine about a week (5 mg in the morning 2.5 mg in the afternoon), not sure what I think about this medication so far. Thanks in advance for any comments!

I was recently diagnosed with NCS and tried drinking 100 ozs of water/G2 a day with a high salt diet with little to no improvement. I was perscribed 20 mg of Citalopram (Celexa) a few weeks ago. It has really helped with my worst episodes in the shower each morning, but there are side effects. Most notably sexual side effects, which is hard since my wife and I are trying to conceive our second child. The equipment still works, but "finishing" is difficult. I still have bad morning fatigue, but has definitely been a improvement. The other mild side effects are the vivid dreams and waking up with heart beating heart and anxiety, but I started taking the Citalopram in the morning and that has helped. Plus, I think that side effect has decreased, more of my body getting used to the SSRI. I look forward to working with my doctor and maybe tweaking some things, but besides the sexual side effects am happy with the Citalopram.

I have the same issue of always being tired, doesn't matter how much sleep I get. I can get out of bed every morning, but feel like I am moving in slow motion and not thinking straight for a while after I get up. Doesn't help that my worst NCS almost fainting episodes are in the morning in the shower. I was just recently diagnosed with NCS so I look forward to working with my doctor about fatigue, especially morning fatigue. I initally thought I had a sleep disorder, since I wake up many times during the night. Thought it was sleep apnea, but a sleep study said I did not. Before being diagnosed with NCS I tried sleeping pills, which helped me sleep through the night, but the fatigue in the morning was no better or worse. I eventually stopped taking them since I had an infant son and my wife didn't like how I was completely zonked out all night, very hard to wake me up and very disoreinted when I did. After being diagnosed with NCS I started to think the fatigue was related to this. I am on Citalopram (Celexa) 20 mg a day, which helps a lot with the episodes in the shower, but the morning fatigue is still pretty bad. I have not tried B12, but I will bring that up with my doctor. Thanks for the idea.

Thanks for the reply Kris. I can understand your fear about trying something when you can't find other people that have tried it. I am still struggling with being on a "depression drug" when I don't have depression. I haven't found anyone that takes the specific one I do. My opinion is though if you trust your doctor, listen to him (her). I have considered the showering at night thing, but I usually sweat a in my sleep and always feel like I need a shower in the morning even if I shower at night. Not sure if the sweating is related to NCS, I am not over weight.

I definitely know what you mean. My worst episodes are in the shower in the morning, the more tired I am greatly increases my symptoms (nausea, light headed, blacking out, etc.). I was recently diagnosed with NCS. Before doctors knew what my issue was I was referred to a sleep doctor thinking sleep apnea may have been part of the problem. Probably because I always said my symptoms were much worse when tired and when I yawn.

I was diagnosed with Neurocardiogenic Syncope (NCS) about a month ago and had a tilt table test a little over a week ago. I now know I have had NCS for about 15 years and am 31 years old. I was perscribed Citalopram (20 mg). Is anyone else taking this? It is a depression drug, I do not have depression, but doctor said some SSRIs help with NCS. It seems to be helping so far, but have suffered some side effects (jaw clinching, waking up in middle of night with heart beating, moderate sexual side effects). I know that this kind of drug takes weeks to build up in your system to properly work and am hoping this really helps. I am also drinking 100 ozs of water/G2 a day and on a high salt diet. I have my worst "episodes" in the morning in the shower. I almost faint or getting lighted headed/black out 5-10 times in the shower. This makes me feel nausea and "just don't feel right" for a good part of the morning, and usually feel fatigued a good part of the day. Somes I twitch really bad in a seizure like fashion and drop anything I holding. Sometimes just a little light headed. The Citalopram has made the epsiodes less frequent and not as bad so far. I am pretty sure I have excercise intolerance, which I think is related to NCS, since anything I do that gets my heart rate going makes me very tired and I just want to lay down. I just started going to this cardiologist who knew what I had, so I am still in the process of learning more about my condition. It was a huge relief finally knowing what was wrong with me. I have known for years something was wrong with me, but could never put my finger on it. Since my occasional physicals came back fine I just lived with it. The intolerance of heat, hating to stand in line, unable to stand still, etc. etc. finally started makig sense after finding the right doctor (I bounced around to a handful of doctors before finding one who knew what was going on). Finding sites like dinet have been a huge help. My friends and family are supportive, but I still get weird looks when I initially explain what is wrong with me (the exact reason I kept it a secret for so many years). Sorry I started to ramble a little bit. Basically I would like to hear from anyone living with NCS, especially if you are taking Citalopram or another SSRI. What helps? What doesn't help? Does the medication help you? Side effects? etc. etc. Thanks, Detrick7