Discussions that mention proamatine

Rare Disorders board


I was diagnosed with NCS about two and a half years ago after several months of testing. It wasn't until about 6 months ago that they finally found meds that would work to control it. I had tried Pindolol, Norpace, Florinef, and a couple other beta blockers, all while doing the whole high salt, no sugar diet. I was passing out about 15-20 a day and they were all set to put a pacemaker in me. I wanted to pursue other options because I was only 20 years old - I didn't want a pacer so they decided to try a Toprol XL 25 mg at night before bed and then ProAmatine 5 mg in the morning before I get out of bed (I have to lay in bed for about 45 minutes after taking it) and then the ProAmatine every four hours throughout the day. If you have been trying to find a med that would work for you I would higly recommend the ProAmatine - at least ask your doctor. It was very expensive when I first started on it but has since come down about half way in price. I still pass out - but only about 3 times a week on average. I'm very lucky to be this healthy. Does anyone have any form of exercise that they do? When I have tried working out I pass out but it's important to be healthy, plus I am gaining weight - and nobody likes that! :) Also, has anyone been diagnosed with this before they were pregnant? My cardiologist thinks that this will go away once I have a baby and I would like to see if anyone has had any luck with that. Last, I would like to be able to be free of this so any suggestions of things you have done to help your symptoms would be a great help. Tara
Thanks for your response Zazzaz - I really appreciate the advice. The reason that they were going to put a pacer in me was because my heart stops when I pass out. Congrats on the marriage - and that's nice that you will be able to try the ProAmatine. I have to pay 50% of this prescription because with my insurance it's a non-preferred drug. One word of warning - side effects. My neck and head are very tingly all the time. It's something I thought would go away but it hasn't yet. Also, if you don't take it on time I get a major headache. But these are things that I can deal with if it makes me not pass out. Have you heard anything specifically about yoga? I have had a couple other people tell me that yoga really works for them and it got rid of it completely, just don't know how severe their cases were. Thanks for your help! TDL
Hi Everyone
Tara - yes, scary as it sounds, it's actually not at all uncommon for the heart to stop with this! I post on another board for this and quite a few people's hearts stop briefly - I think many of them have pacers I never had the tilt table test so I don't know if mine does or not. I guess I'd kinda like to remain blissfully ignorant of that fact! LOL I'm glad the proamatine is working for you though. You sound like you have a pretty severe case. That must be so hard! I don't have it nearly as bad - just pass out a few times a year, but I have the chronic fatigue, nausea, and "brain fog" that's associated with this. Also, about the weight gain - I noticed that after I was diagnosed and started on the high salt/fluid thing I gained weight, so I wonder how much is just water weight? I find exercise difficult too - I've read that exercise intolerance is also part of this. It's funny, I jointed a gym awhile back and jsut felt more awful. I kept at it for 6 months thinking I just needed to get in shape, but even after that long it just wasn't getting any better. Now I go for a walk everyday at lunch and that has been much better tolerated and I feel much better! I think with this, light but consistent exercise is much better tolerated than a hard heart-rate raising workout. Just start slow, even if it means a slow walk around the block, and add a little as you feel comfortable. I find it's really important to be consistent though. SOmedays when I'm really feeling pretty good, I do way too much and then really pay for it the whole week following! Gee, and I remember the days I used to consider myself a "jock"!
Take care
Maggie
Hi Sara - If your heart actually stopped on the tilt table test, that seems pretty conclusive, I'm not sure why they want to do other tests. Some people who's heart stops when they faint actually end up getting pace makers. My doctors thought that there wasn't actually any evidence that the heart stopping was actually dangerous in this condition and didn't think that a pacer was a good idea. But I post on another group for this and several of them have pacers and swear by them! I'm not sure what other drugs to take - everyone seems to be affected differently by them. Some of the drugs used are the florinef, proamatine, beta blockers, and SSRI antidepressants. Some people seem to be helped jsut by increasing fluid and salt, taking magnesium, licorice (be careful it can raise BP dangerously high if taken too much for too long). You say you're taking florinef - has that helped at all?
As far as I know, the MRI and EEG would only be to confirm or rule out epilepsy, and would not show anything to do with NCS. And even then, those tests are not always definitive. I had "something" on my EEG , and so they diagnosed epilepsy (it was just 'blips', but not the spike-wave pattern that would be more indicative of epilepsy), they 20 years later changed their minds to NCS, which given my total symptoms makes much more sense. I think especially since you don't have insurance, you should insist on them telling you exactly why they want these tests and what they would be looking for, then decide for yourself. You said something about a heart murmur? Is it by any chance the mitral valve? Look up on the web "Mitral valve prolapse syndrome". There is a lot of controversy about this, but there seems to be mounting evidence that this is related to NCS. Most doctors seem to still think its jsut a coincidence, some think that the MVP causes a lot of our symptoms, and some are now believing the it is actually just another symptom. It might be worth checking out.
(PS... If I were you, I wouldn't hesitate to go to school in NY - what are you studying?)
Maggie
Has anyone had any luck with an MRI or an EEG showing anything related to NCS?

I had an MRI done on me when I was being diagnosed, and of course it was normal. They were going to do an EEG but after the MRI came back normal they decided against it and finally did the TTT instead. I can't believe you did the TTT twice! I couldn't imagine going through that again. It was horrible. I agree with the other suggestions of making sure there is a real reason to get that test and then decide. Good luck!
Also, you asked about different prescriptions - I have taken everything out there. ProAmatine is my favorite, especially when combined with Toprol XL. I wouldn't recommend any of the antidepressants/anti-anxiety meds because I went on Zoloft for about 2 weeks and it was terrible. I was dizzy all the time and the world was always spinning. Norpace worked fine as well. The only bummer with the ProAmatine is it is very expensive. For 100 pills (one month supply) it is $294 before insurance. I can tell you about the side effects that I experienced if you want, but I'm sure that your Dr. will prescribe the best med for you. I have also worn Support Hose/Compression Stockings/TED hose for a little over a year. They were hard to get used to but they definetly help. In the winter they are great for warmth! But they are also expensive - one decent pair is about $60. I hope that you can get on something that will help you. Good luck. Tara
Quote from curious_bliss:
My Dr. put me on Toprol-XL(50 mg to start with then after a week he is upgrading me up to 100 mg per day)
-I hope that the Toprol works for you. If it doesn't work by itself, ask your Dr. about adding ProAmatine with it, those two together have done wonders for me.

how likely is it that i will loose my liscense - Zazzaz had some good information regarding this, also, my doctor said that if I would wear support hose to help as well then he wouldn't take my license away. Basically, as long as I do what he tells me and I am taking care of myself, he lets me keep my license which is so nice!!

and do you think i will be able to deal with the stress of nursing school, i heard stress brings episodes on.
I was going to do nursing school but actually changed and did Respiratory Therapy... which is very similar - it's like nursing only specialized. It definetly will be hard but it's something that you can do. My profs knew about my condition and so if I just got out of my chair and laid down on the floor they were ok with it - I took quizzes down there, took notes and everything. You may want to consider the fact that as a nurse you will be on your feet for long periods of time - typically 12 hours. Since I have graduated school, I have only been able to work about 6 hours at a time. I can't work at the hospital full-time only because of this condition. Any position like a nurse is just hard on your body and so you will have to see for yourself. For me, I won't allow myself to work at the hospital because if I have a patient who is crashing and I am going to faint myself, then who is going to take care of them? Because I don't know what my body is going to do, I will not allow myself to take that responsibility. So bottom line, yes you should be able to do school but you might want to think twice about actually working the shifts at the hospital because those are long 12 hours on your feet.

Is this a really serious issue? Is it rare and how carful should I be? I just don't know what to do. I don't know how serious this is. My mother is worried about me, should she be?
It becomes serious if your heart stops when you faint. My mom worries about me too, especially when I was in high school like yourself, but that's their job right! I try telling her not to worry but she still does.
However I feel like my life is slowly being taken away from me.
I think you will find that this controls your life. Try always having a snack on your in case you get light headed, eating regularly really helps me - I eat about every 2 hours. GOOD LUCK!! I hope that this helps.