Anyone else with dis-autonomic conditions like vasovagal syncopy??

Discussion in 'Fibromyalgia Main Forum' started by laspis1, Jan 28, 2006.

  1. laspis1

    laspis1 New Member

    I went to see an endocrinologist last week. I have been getting these attacks/flashes that leave me really week and cause burning in my muscles. So my PC decided that I should be checked for neuroendocrine cancer (Carcinoid). Having listened to my symptoms, the endocrinologist said that the differential diagnosis is either the Carcinoid, some thyroid tumor and some others.... but most likely my spells are caused by dis-autonomic condition such as vasovagal syncopy. I went to read about it and it looks like another condition doctors do not know anything about and do not know how to treat. It can explain malaise and fatigue, the weakness in my legs and may other things. I have had fainting spells since I was a kid, every time I had to stand for a while I would start blacking out. That is also considered one of the dis-autonomic conditions. Anyway, I was wondering how many of you have traveled this path. It just seems logical that if i have it, it probably comes with the territory and many of you must have it too. Still, I am a long way from knowing for sure, and finding an electrophysiologist in my area will not be easy. I tried to look and I have found one. What a choice!


  2. darude

    darude New Member

    I have a pituitary tumour and need to see an endocrinolgist. I get attacks like that. Really weak and then burning and weaknessin muscles. I'm supposed to be seeing a nuero endocrinologist. Keep in touch let us know what happens.
  3. Angel6801

    Angel6801 New Member

    Hi laspis1

    Yes, I do have vasovagal syncopy. I just found out couple years ago. Even though I didn't really faint but often have near faint spell. I had this problems since I was teen. Right now I do suffer weakness in my legs, and tired... I do not have any other problems like you do.. Just only vasovagal syncopy... I had my tilt test. I passed out on this test... So I can't stand around too long. Often I get the warning signs that signal I need to sit (like suddenly hot flashes, nausea, start to feel lighthead, heart racing, suddenly weakness)... I think this is common in FM... I am not too sure.. I am still new at this.. My dr dx me with FM last year but... I am not sure. I am currently seeing a new dr to see if I really have it. My cardiology dr put me on high salt diet(and everyone got jealous about this:) ) and I have to drink a lot of fluids... ANd.. He told me not stand longer than 30 minutes. He also presribled me beta blocker which are atenleol.

  4. laspis1

    laspis1 New Member

    Sorry to hear about the tumor. A good friend of mine has it too, but she has been able to control it with medication for over ten years now. How did you figure out you have that? Was there some hormonal test that showed that?

    Based on what I am reading I probably do have some form of dis-autonomic condition, I am pretty sure that if they do a tilt table test I am likely to pass out. But the attacks I get do not entirely fit or maybe I just need to learn more about it.
    [This Message was Edited on 01/28/2006]
  5. laspis1

    laspis1 New Member

    Thanks for writing. I heard about high salt diet for this, but that would be a sheer torture for me as I cannot stand salt. For years I use it very little and if i do not use it at all that is even better.

    I think that you are right, many of us here must have this condition, particularly those with CFS, but also with FM. Because of the fatigue and malaise, I wander if it is not some form of dis-autonomic condition that is part of these two. I am pretty sure I have it because of the near passing experiences I have whenever I have to stand. I had that all my life. The things that I am experiencing recently are much scarier though and it is important that I figure it out and hopefully rule out the cancers.
  6. goaska29

    goaska29 New Member

    I too was diagnosed with vasovegal syncope. I was give .5mg of Fludrocortisone daily to help with the dizzies when standing. It has helped me a bit...I definitely notice the difference when I haven't taken it that day.
  7. Sheila1366

    Sheila1366 New Member

    She has had them since she was 12.She is going to see an endochronolgist(SP?) soon.Her reheumy. thinks that would be the best way to go.Vasovagal is awful.It has kept my daughter from getting her driver's license.When these attacks hit her she gets very pale,has a cold sweat,she has trouble hearing and seeing and nearly faints.She never goes completely out.One dr. told us to make sure she drank alot of water and before getting up out of a seating position to pump her legs up and down to get the blood flowing back up her body.Luckliy the attacks have gotten fewer but they still hang around and catch her by surprise.I hope we can get some amswers for this.So far we haven't gotten much help cause it does seem doctors really don't know much about it.
  8. MtnDews

    MtnDews New Member

    Yes, I have it too vasovagal syncopy. I've had trouble with nausea for quite some time now. I never quite faint, I get to the floor fast when I feel like that - don't need any broken bones...but sometimes it does make me vomit. Recently I learned that I vomit because it is the body's way of bringing my blood pressuer back up. Usually doctors don't catch this because your blood pressure is taken right after walking to the examning room, right? But really they should wait until you have been sitting for five minutes. Then take it again after standing for five minutes, lying down for 5 minutes... this is much easier and cheaper than a tilt table test and the recover time is much quicker. I had a tilt table test and took almost a week to recover. Hydration is important and so is enough salt, or the flouracortizone (?). I think they are finding that many FM/CFS people have this. (It also goes hand in hand with some blood clotting disorders - Factor II I think.)
    This is a blood pressure issue where the brain isn't able to tell the body if it's sitting, standing or lying down is probably one of the reasons why we feel so lousy. See what your doctor thinks and in the meantime, chomp on some salty pretzels and drink plenty of water. Best of luck to you.
    H