Detrick7

Does anyone with NCS or anything else experience a sudden drop in blood pressure but no change in heart rate during episode? I get epsiodes where I get light headed, tremors/weird muscle movements, etc. etc. typically after a yawn; big long yawns (I am not tired). One trigger is standing up quickly, but get many when sitting at work and on the computer. I was diagnosed with NCS, but the only test that has shown anything was a 24 EEG, when I had an episode I had weird EEG readings the neurologist believes is a drop in blood pressure, but no change in heart rate. I have had a regular EEG, sleep deprived EEG, ttt test, MRI, hearing tests, other ear tests, sleep study, heart monitor for a month, and pretty much every other heart test. These were all normal. All normal. Part of the definition posted on DINET for NCS is "this disorder is characterized by an episodic fall in blood pressure and/or heart rate that results in fainting (Robertson, 2002). " I read this to believe I can have NCS even though the heart rate doesn't change. However, my neurologist, who at first didn't believe it was seizure related is starting to think it may be. He thinks this because my EEG that showed abnormal brain activity showed no changes in heart rate. Some people who have witnessed my episodes say they look like seizures, but that doesn't they are seizures. Drop im blood pressure can cause moverments that just look like seizures. I have tried 2 different SSRI, midodrine, and 2 seizures medications with limited to no benefits. Only one I am still on is generic Zoloft (SSRI). This seems to help me recover faster from episodes, but definitely doesn't prevent them. I don't know what to think anymore. I do tons of research on my own and go back and forth between thinking I have NCS (or some other form of dysautonomia) and some form of seizure disorder. My basic question is does anyone have no drop or increase in heart rate during episodes? Thanks for your input, Lance

Thank you Targs66 for starting this post and thank you Mack's Mom for posting pdf. I was diagnosed with NCS (aka NMH) over a year ago. It has gotten worse and really effecting my life at work and home. However, I was really starting to question my diagnosis since my worst episodes were at work while sitting down. I have a desk job and questioned how I could be having bad episodes sitting down. It seemed to be the worst when I was stressed. Some of the movements and jerking even made me think it maybe seizures. I tried two seizure medications and that did not go well. After reading the article Mack's Mom posted where it stated prolonging sitting especially when concentrating could trigger episodes that really made me feel more comfortable with my diagnosis and am going to take to my nuerologist about the medications suggested to treat this issue. I have done a lot of research and had never seen the prolonged sitting/concentrating as a main trigger. I am going to try some of the new meds and even if they don't work I will at the very least feel more comfortable with my diagnosis making my condition easier to accept. I think many of us can understand that is at the very least "comforting" to know exactly what is wrong, even if treating is difficult. Thanks again, Lance

Sarah4 or anyone else with these type of symptoms and difficult to record low blood pressure readings. What is the actual diagnosis? I was diagnosed with NCS, but is that really what it is? I also have problems at work sitting down. Hands and arms twitch/tremor, can't focus, yawn for 10+ seconds, and have problems remembering what I am doing. I am currently on Zoloft and my neurologist put me on Trileptal to see if it helps. He thinks the EEG is showing a drop in blood pressure, but not sure why. People who have seen me have certain episodes say it looks like I am having a seizure, but have had all the work up that has ruled that out. Although I can relate to some of ths symptoms of simple partial seizures and complex partial seizures. My neurologiist is great and is determined to help me figure this out. We are just not sure exactly what I have and best way to treat.

I have the exact same issues as everyone is describing here. Is this just the cause of a fall in blood pressure? Or are there other factors at play? My blood pressure is fairly normal whenever I take it. However, I had a 24 EEG where I recorded my epsiodes. There was weird brain activity that seems to show a drop in blood pressure. However, never seems like my blood pressure stays down long enough to actually record with a blood pressure monitor. Does anyone else experience this or does everyone have chronic low blood pressure? Thanks, Lance

I know sometimes it is difficult to describe episodes to doctors. While recording an episode with a camcorder won't help explian how you feel on the inside it may still helps the doctors to see what is happening. I set up my camcorder in the living room after I had already had a few episodes anticipating more coming. I even used my phone to record a few work. All of my doctors commented on how helpful it was and how nobody had done that before (all three have current patients with dyautonomia conditions). I even got a few with the 24 hour EEG hooked up, that along with the EEG results helped the neuorologist confirm it was not seizures and most likely blood pressure related. I even noticed things I had not noticed before. Someone just posted about blinking, I blink a lot more than I thought especially right at times of episodes. My eyes were staying closed longer than I thought also. It also caught weird muscle spasms in my neck I didn't know

Thanks for the replys. I am not sure when I am going yet. My regular doctor called me Friday, she had talked to my cardiologist and neurologist that day. She said my cardiologist was going to refer me and not sure how long it would take. I have heard a wide range of wait times so not sure what to expect when I will go. Does anyone have any idea? I have good insurance and live in Iowa so not a long trip for me so I would go whenever they could get me in.

Long story short my cardiologist and/or neurologist are going to refer me to Mayo in Rochester. I have had a ttt, sleep study, sleep deprived EEG, 24 hour EEG, ECHO (twice), MRI, hearing test, and ultrasound(?) of artery in my neck. The only "promising" test really was the 24 hour EEG. It showed abnormal brain activity when I recorded epsiodes. Two neurologists looked at it and to the best of their knowledge showed a drop in blood pressure, but NO change in heart rate. My episodes include getting light headed, weak in the knees, seeing black, sometimes jerking/tremors and sometimes falling upon standing (not all the time, but sometimes). I have smaller episodes sometimes just from turning head quickly, or turning around. Even sitting down just looking down and up will cause a small episode. Almost all of my episodes begin with a big yawn. Sometimes I drop things without realizing it happened until whatever I was holding hits the floor. Sometimes I feel like I completely black out, but just for a few seconds, and don't fall. I work fulltime, but feel like this really affects my work sometimes. Takes me much longer to do tasks I should be able to do quickly. I have a desk job and working at my desk the constant yawning, hand twitches, seeing black, and "brain fog" make me need to recollect my thoughts many times each day. My cardiologist, neurologist, and regular doctor are great and all take me seriously and agree I should go to Mayo. I am currently on Midodrine (10 mg 3X a day) and Zoloft (50mg 1X a day). They seem to help, best way to describe is they don't prevent episodes but seem to make them not as bad. I am male 32 years old, 5' 10", 150 lbs otherwise in good health. I am married with a 2 year old and another on the way. I am pretty much a normal functioning adult besides my dysautonomia (diagnosed with NCS, not sure if that is entirely correct since I don't have a change in heart rate during episodes). I get through most days ok, but days without multiple episodes I feel like I am draggig all day and just unloading the dishwasher (up and down), picking up, and playing with my son seem like much more of a challenge than they should be. I drink plenty of water everyday (80-100 ounces)and try to get more salt in my diet. I completely cut caffefine out of my diet and otherwise eat a pretty normal well rounded diet. Basically my questions are what to expect at Mayo? What kind of tests will they do? How long will I be there? How much does it costs (I have good insurance, even saying that I am sure this is difficult to calculate)? Will the doctors doing anything different than has already been tested? Any comments on Mayo or general comments would be appreciated. Thanks for reading, Lance

I am very glad this topic was raised! I was diagnosed with NCS less than a year ago. I had a ttt, but never saw what my heart rate or bp did during the test. I didn't faint, but had a few "episodes". I have actually only fainted twice, and fall occassionally, but most episodes are light headed, arm twitching, vision blurred, etc. etc. I bought a blood pressure monitor and heart rate watch. I expected that my blood pressure would be low all the time, but it is not. Either normal or high (usually the top number is the high one, 130-140). The question I have is my cardiologist has put me on midodrine. which raises your blood pressure. I am even to the max dose (10 mg 3x daily). Does this make sense? I have never actually taken my blood pressure during an episode, but have shortly after, always normal or slightly high. Maybe my blood pressure does drop during the actual episode and that is why I am on midodrine. I mentioned to the doctor that I was worried my blood pressure would be too high on the midodrine, but he didn't seemed concerned. Side note, I started excercising about 4 months ago, gradual at first, but really picked it up the past 3 months. Good news, lost about 30 pounds (down to high school weight) and in best shape of my life since a teenager. Bad news, my episodes have greatly increased, not when working out but usually the rest of the day. That was the main reason I am up to my max dosage of midodrine. I was afraid cardiologist would tell me to stop working out or dial it back, but he was very supportive and said he thinks increased episodes maybe temporary. I don't know, this whole NCS thing (I might have POTS too not sure) is confusing to me sometimes. Should I try to alter my life to cut down on episodes, lay down and take it easy, or say screw you to NCS and do everything I want even if it causes me more episodes? I tried taking it easy when first diagnosed, and actually cut down on the episodes. But, eatting a high salt diet and not being as active didn't seem right to me either. So I started working out, am in great shape now but fall going up stairs, get bad arm twitches when lifting arms (even slightly sometimes), weak knees, light headed, etc. etc. Which is better? I guess being in shape and more episodes, but on the days when it is a pain to just take dishes out of cupboards or walk up stairs without falling I don't know. At this point I am just going to keep pushing myself and hope it doesn't get worse. Don't get me wrong I love being in better shape, I was just really hoping it would make my episodes better not worse. My cardiologist still thinks it might "go away", but I am 31 and as far as I can remember have had this since about 15 years old. Thanks for listening to me vent. Any comments on midodrine or anything else would be appreciated. No side effects besides head tingle which I don't mind. I was originally put on Citalopram, but had sexual side effects so was switched to midodrine.

Jump, Your post describes exactly what I have gone through since adolescence. Can't sleep through the night, can count on one hand number of times I have slept more than 6 hours striaght (without meds), being awake early morning for hours, than being able to fall asleep again etc. etc. I did have a sleep study done, before I was diagnosed with NCS thought that sleep apnea was the problem. I did not have sleep apnea, but did show I woke up multiple times. Pretty much left it at that and called it insomnia. Are you on any medications? That could explain the dream thing. I was on Citalopram (generic of Celexa(sp?)) for about a month for my NCS and the dreams were like you described. I did some research and pretty much any anti-depressant can cause that. After I stopped taking Citalopram my dreams went back to normal. I do have a perscription for Lunesta, that DOES make me sleep through the night. However, it makes me feel groggy in the morning so I rarely take it. I will say when I do take them though it is amazing to fall asleep and not wake up until the alarm goes off As you said when I talked to other people they were shocked that I didn't fall asleep and wake up once in the morning. I have pretty much accepted I wake up every hour or so (I usually fall right back asleep) and just consider it "normal" for myself. Not sure what else to do, can take sleeping pills, but prefer the least amount of medication as possible, and don't like how I feel when I wake up. Sorry, probably wasn't much help (unless the meds thing can explain the dreams), but hope it was nice to know someone experiences the same exact thing. If you ever come across anything to help with this please let me know. Thanks, Lance

This is a great topic. I was agreeing with many of the things previously said. I am currently 31, I believe my issues starting around 15-16 years, but was only diagnosed about 6 months ago. Looking back now I was EXTREMELY active in organized sports and other activities until I was 16-17. Looking back I don't think it was a concidence. For years I noticed I could not excercise like I should, part of me just thought I was out of shape the other part thought something else was wrong. Anyway, part of me is happy to finally know what is going on, the other part bummed that I probably will never be able to be as active as I would like. I know exactly what other posters were saying. I want to go all out and not do it at all!! I now realize I need to adjust my attitude My wife started a high intensity workout program about 6 weeks ago. I really want to get back into shape and lose a few extra pounds I have put on the past few years, but the cardiologist not surprisingly said the high intensity work out would be a bad idea, and I agree. I have been working out daily for about a month. I have a heart rate monitor, if I try to do anything over a brisk walk my heart rate shoots up. I have gotten better over the month, I run/walk on a treadmill every other day for 30 minutes, slowly trying to increase the amount of running. It is working little by little, but I want to push myself more! Without the TV on the treadmill I would be bored in 30 seconds. I am going to try and do a 5K (3.1 miles) in a few months. I know I won't be able to run the whole thing, but I need a goal to shoot for. One question I have is I experience some of the things mentioned here, but I seem to be the most symptomatice shortly after I done working out. When I go back to the locker room to change I get really like headed, see stars or black out a little, arm/hand twitches*, etc.. Does anyone else experience this, or know why it seems worse when I am done excercising than when I am actually excercising? *I do not actually faint, I just "almost faint", usually in the morning before, during, and after showering. Yawn, get light headed, black out, many times hands and arms twitch and I drop things or have problems buttoning my shirt. The episodes are usually very short 5-10 seconds, but sometimes longer and sometimes close together. I seem to have more episodes now that I am excercising regularly, usually shortly after done.

Sorry to be the bearer of bad news Think about it this way, you got the tax deduction when the money went into FSA medical account because it was not taxed. So, taking them as a medical expense on your taxes, would be "double dipping", getting the tax break twice, which the IRS does not allow.

I am a CPA (Certified Public Accountant) and used to do taxes for a living. You can deduct medical expenses only if they are over 7.5% of your AGI (Adjusted Gross Income). Basically this will be all your income; salary, interest income, dividend income, etc. etc. Take a look at your tax return from a previous year and your AGI will the number at the bottom of the first page (1040 Long Form). Let's say you are over 7.5% of your AGI, it is still an itemized deduction so your total itemized deduction will need to be more than the standard deduction to get any benefit. Only count the medial expenses you pay; do not include medical expenses paid/reimbursed by your insurnace. Also, if you have a Flex medical account or HSA (health savings account) you can't include those either since the money went into those accounts before it was taxed. Hope that helps, if anyone has any questions don't be afraid to ask.

Funny this topic just came up. Last night I had to stand for a long period of time and my feet and lower legs are just in a lot of pain today. I am 31 but feel like I am 101, walking is very uncomfortable today. I just started teaching (night classes at a local university, it is only one night a week but classes is 4.5 hours long) again last night after a month break. I have had discomfort before, but nothing this unpleasant previously. The weather might have something to do with it, it is very cold in Iowa right now. Excuse my ignorance, but I have not heard of "rocker bottom shoes". What exactly do they do? Since you mentioned Sketchers now makes them, I am guess thing are not a brand but more of a style of how a shoe is made? I have NCS, do you think they would hlep the pain I was describing in my lower legs/feet? Thanks, Lance

Hi Elena11, Thanks for sharing, sounds like we have a lot in common. As I mentioned I am 31 years old, my best guess of when the symptoms started was around 15 or 16. When it first started I just thought it was weird and never mentioned it to anybody because for the most part my symptoms were in the morning before, during, or after a shower. I would yawn, get light headed, black out, sometimes twitch and drop what I am holding. I would just lean up against something to stop from falling if they were bad, but never would actually faint. The fatigue and nausea afterwards were not pleasant, but lived with it. Almost every time I had an episode I would yawn, so I always thought I was just really tired and that was the issue. I thought the yawn was the "trigger", I know now the yawn is part of the episode and it has already started by the time I yawn. The few times I went to the doctor in high school I always thought if there is something wrong with me they will find out. After a while I just kind of got used to it and lived with it. That sounds so weird when I say that to other people with NCS, but I bet some people on here can relate. When I went to college I didn't go to the doctor for many years. During this time my Mom had some heart issues and I started to think I may have heart problems, I know this may sound odd, but that made me want to go to the doctor even less. Fast forward to when I was 29 or 30, I finally told my wife about it. I can't remember why exactly, I think it was when I had just had a really bad episode and she was wondering why I was moving so slowly in the morning. Anyway, she of course told me I needed to go to the doctor. I told her I didn't want to because I was afraid they would look at me funny. She made me go anyway Guess what I got from my doctor when I told her? I strange look saying she had no idea what was wrong with me. Classic case of bouncing around from doctor to doctor to doctor. I saw a sleep doctor, a neurologist, another neurologist, and finally a cardiologist who diagnosed me with NCS. The second neurologist had a good idea what was happening, but referred me to the cardiologist with a history of treating dysautonomia patients to have some test done first to make sure my heart was ok. In the words of my cardiologist "You have the healthiest heart I have seen in a long time, and I know exactly what is wrong with you". That definitely made the top 10 of my happiest moments in my life. l All in all I had a sleep study, EKG, Echo, sleep deprived EEG, and tilt table test. Tilt table test only one to come back abnormal. You mentioned epilepsy, I thought maybe that is what I had for years. I even asked the neurologist if he thought it was epilepsy because of the twitching and dropping things, he quickly dismissed it and don't remember why, but for some reason he knew right away it was not epilepsy. I wish more doctors and even the general public was more aware of dysautonomia. I still get weird looks sometimes when explaining my condition to friends and family. I wish so many of us didn't have the classic case of bouncing from doctor to doctor to doctor..... I was luckly that I didn't get an incorrect diagnosis along the way. If you don't mind me asking what type of mediciations did you use? Did any of them help? I was on citalopram (celexa) initially, actually worked pretty well, but had sexual side effects and would like to have another child at some point in the near future. I am currently on midodrine, which helps, but I don't feel like my blood pressure is low all the time (I have a bp monitor) so do I really want to be taking something that jacks up my bp? Thanks for listening, Lance (Detrick7)

Thanks for the info Flop. Is there much a difference in treating POTS than NCS?

Hi Lauralulu, I am in the same boat as you, I don't feel like I need a sleep aid every night, but sometimes I know I am not going to get a good night sleep without one. On my long train of doctors before I got my NCS diagnosis, one was with a sleep doctor. I tried taking Ambien and then Lunesta on a regular basis, but kind of got the hangover effect you mentioned and my wife hated it because I was completely out and at the time we had just had a baby. The reason I started taking it was that I would have problems falling asleep and wake up numerous times every night. I also hoped it would help with my near fainting episodes in the morning (NCS), it did not help much if any with that unfortunately. I still have a perscription for Lunesta, and I do take occassionally. I typically go to bed around 11:00-12:00 and wake up around 7:00. I will not take the Lunesta unless I am in bed by 10:00, that really helps with not having the "hang over" effect. I do get a little bit of that bitter or "metallic" taste in my mouth after taking it, but after drinking something with flavor (usually a G2) it would go away. Hope that helps!

Thanks for the replies. I know I can stand for long periods, I just seem to get more tired than I think I should. My almost fainting episodes are typically in the morning before, after, or during a shower (I shower as quickly as I can and keep the water as cool as I can. I don't like to shower at night because I sweat in my sleep so would just want to shower again in the morning anyway) Also, anytime I have tried to excercise regularly over the years the fatigue has been very difficult to deal with. Part of me thought I was just out of shape and needed to keep pushing myself. I believe part of it is being out of shape, but the NCS and/or POTS probably has a lot to do with it also. Just having this heart rate watch for a day I notice my heart rate shoots into my "target heart rate" zone (I am 31 year old male, so somewhere in the 110-160 range) for working out. With POTS does your heart rate shoot up and stay there for a long period of time, or usually settle down after just standing for a bit? One more question, those "target heart rate" zones for working out, should I be using a different scale since I have NCS and maybe POTS? Thanks for the help!

I was diagnosed with NCS a few months ago, this is after having near fainting episodes pretty much daily in the mornings for 15+ years. I bought a heart rate monitor watch today to see what my heart rate does throughout the day and because I would like to start excercising more. Watch came with the chest strap and everything. I hooked it up and sat at my desk for awhile, heart rate was around 80. When I would stand it would immediately go to 110, I would sit down and it would eventually settle back around 80. I decided to walk to flights of stairs, just walked not rushing or anything, my heart rate quickly jumped to 140+. This seems more like POTS to me than NCS. I get tired very easily from walking stairs and a little light headed, but don't pass out. In the mornings, usually in the shower or shortly before or after shower, I yawn get very light headed, black out sometimes, and sometimes twitch and drop what I am holding. I had bounced around from many doctors before finding a cardiologist who diagnosed me with NCS. I have had a tilt table test, echo, EKG, sleep deprived EEG, and even a sleep study. The tilt table test was the only thing that showed anything abnormal, I almost fainted three times. I am currently on midodrine after side effect from being on an SSRI (citalopram/celexa). I did buy a blood pressure monitor and my blood pressure actually doesn't appear low like I thought it would for NCS, even if I don't take the midodrine. Any thoughts would be appreciated. I have only had this heart rate watch for a few hours, I am interested to see what my heart rate does in the morning when I am having my episodes.

Yes, shortly after starting Citalopram I noticed the extremely vivid dreams, describing them in detail to my wife in away I had never been able to do before. My dreams had always been very hazy, but after starting citalopram the best I could describe it, it was like I was living in a movie. The dreams seemed so real, which was fine, except unpleasant dreams were much more scary. I looked it up and vivid dreams were a "side effect" of SSRIs. I only took it for a little over a month because of sexual side effects (I am 31 and we would like to have another child). Once I quite taking Citalopram the vivid dreams stopped.

When I first found out I would have a TTT I thought for sure nothing would happen. Since I just almost faint, I thought I can stand for 20 minutes and not faint no problem. I teach night classes at a local university and stand for a couple hours sometimes, this test is a waste of time. Then I read an article about how you find ways to compensate for your dysautonmia; fidgeting, rarely standing still, flexing your leg muscles, etc. etc. These are all things to help keep your blood moving. That described me to a "T". I never stand still, even when talking to people at work, if I am standing for more than a minute I start moving around without even thinking about it. When I teach I pace around the front of the room. Before I got diagnosed with NCS I was aware I was always doing this and always thought to myself "this is probably distracting, just stand still", but would still do it anyway. I flex my legal muscles all the time and never really understood why I did it. Also, before I was diagnosed (and I still do now) I would always drink water/G2 before going to bed and first thing when I woke up in the morning. Whenever I would drink alochol, I would drink 3 glasses of water before going to bed. I have had NCS for about 15 years before being diagnosed a few months ago. The fact that I was doing these things, really without ever thinking about it started to make sense. Anybody else do things like that to help compensate, without really knowing you are doing it?

I see on your "scripts" it says Paxil, are you still on that med? When I was on Citalopram (Celexa) which is an SSRI I had much more vivid dreams and remembered them more than I ever had before.

I just had mine a few months ago, so most of this is fresh in my mind: Were you given meds before the TTT? What meds were they and what do they do? I was not given meds initially. Laid on a hospital looking bed, blood pressure cuff on my arm, electrodes (or whatever they are called) on my upper chest, then strapped to the bed. Bed was put upright (all the way up, 90 degrees from floor) for about 20 minutes. I didn't faint, but almost fainted twice. My heart rate and blood pressure went all over the place, but don't remember exact numbers. Then I was given a medicine to increase my heart rate and put upright again for 15 minutes. I almost fainted once more and the test was over. What were your symptoms when you were first upright (aside from low BP and high HR?)? Nothing at first, just weird to be standing and strapped to a table. What were your symptoms when you had been upright for a while?I could feel myself starting to pass out, thought for sure I was, but then would come back to "normal". Did you vomit? No, but almost passing out does make me nausea, so I imagine some people may pass out. How long did it take you to recover from it? Similar to when I almost pass out on a daily basis, nausea and tired for little while. This was a little worse than normal, probably because of the meds to speed up my heart rate. Basically I was just tired for a good part of the day, but nothing horrible. Hope that helps. Not every doctor agrees with using meds and not all will put you up all the way up at a 90 degree angle. Basically the test is standing still for 20+ minutes.

This is a great topic, I have been thinking of getting one since I was diagnosed with NCS recently. I would prefer not to wear the chest strap, but am assuming those are much more accurate. Does anyone know if there is an accurate one without the chest strap? Are they water proof? My worst episodes are in the shower and would like to try wearing it in the shower. I see the prices range dramatically. Does anyone know if the higher priced ones are more accurate? Thanks, Lance

As I am sure your doctor probably told you don't take it any closer to 4-5 hours before bedtime or if you are planning to lay down for a long period of time. I got the scalp tingling thing, which is not bothersome. I did make the mistake once of taking more than I was perscribed (I take 10 mg in the morning and 5-10 mg in the afternoon), I took 15 mg one morning to see if it "worked better". It didn't really help much more and I had problems urinating for about 2 hours, I felt like I had to pee really, really bad, but couldn't. I looked it up after that and one of the side effects of an overdose was difficultly urinating. I know it was stupid to try it anyway, I learned the hard way.

To try and increase the chance you will faint. Some doctors do this, some don't. I was given a medication to increase my heart rate after about 15 minutes because I had not fainted, I almost fainted twice, which was common since I don't normally actually faint. I almost fainted again, and then the test was over. I was fine with the medication, if me actually fainting would help the doctor treat me better great. As I mentioned in the previous post the doctor said the TTT was not to diagnosis but to help treat NCS. He also said they want to induce a faint, hence the medicaiton, if at all possible because sometimes people's hearts stop during the faint for a few minutes, which obviously is not good. If that were the cause treating NCS can get a more tricky. Some doctors don't even like/use TTT anymore. My neurologist who referred me to my current cardiologist suggested I get one, but then proceeded to tell me why they are not reliable and many doctors don't even use them anymore.