Vaso-Vagal Discussion

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From: pipecreek@home
Date: 4/26/00
Time: 8:34:47 PM
Remote Name:


also, paramedics found no sign of blood sugar issues--father has adult onset diabetes, but i have yet to have this issue--age is 39.


From: Fran



I just saw your post on the V.V forum. What you write has blown me away. I have been struggling for a proper diagnosis for over 20 years. I have scoured, off and on, forums for the last two years, looking for a set of symptoms that matched mine. The diagnosis's (or should I say labels) that I have been given over the years have included epilepsy (with nonconclusive EEG's) Menieres disease (with no testing) Miagraine's (without auras), amongst a hoarde of other things that the Dr's raise their eyebrown too and say I don't know!!

The only positive test I have had that is conclusive, is Atrial Fibrillation. All the sites that I have scoured for dysautonomia, V.V, Atrial fibrillation, Epilepsy suggest what I have is similar, but not the same as everyone else. I have stuck with the AF one, but no-one ever faints with it. What happens with me (for the last 5 turns is that I have had near death experiences. They frighten the sh*t out of me. I also loose everything in my bladder too. It seems that I also convulse (hence the E diagnosis). But I was on anticonvulsants for 20 years, and my seizures although few and far between, still came on average once a year. Getting worse with each one. After the last two I knew I was really lucky to have survived. Went all the way down that tunnel and when I started coming through I could hear myself struggling to breathe, then all sorts of weird noises in my head, followed by paralysis, followed by deathly confusion and being unable to speak etc.

They sent me for sleep testing for narcolepsy, but to no avail. I am waiting to see another neurologist in another health area. But I just know they are barking up the wrong tree. They won't send me for autonomic testing as they don't recognize it where I live. I live in the north west Highlands of Scotland. Any way to cut a long stroy short:

At Xams I stopped taking my heart meds. I couldn't understand why I was taking them. They didn't stop the AF, and had awful side effects. I was on digoxin for 10 years, then arythmol, the sotalol, then flecainide and lastly atenolol (for the last 18 months). Since stopping the tablets (that included my anticonvulsant) I seem to have gone from strength to strength. But I also changed my diet too. I became convinced that additives in my food were contributing to it. I have not had a run of AF since, but I still get a lot of ectopics. I am relieved that this has worked for me - 8 moths so far. But I still live with the fear of another attack.I tell myself it was all down to bad diet (too much processed food) but think what if it wasn't.

I have always told my DR that the fainting and AF were tied up together. But they disagree and say that they are unconnected. Since then I have found out that more and more Dr''s are coming round to agreeing that Lone AF is a disturbance of the autonomic nervous system. I have been sreaming this at my cardio and Dr for years. They won't even send me to see an EP as the cardio says that they are the experts in arrythmia, they only read them!! But that is our health system for you.

Anyway. Sorry to have bored you with my story. I just felt I had to make contact as you have AF where they know your heart stops beating. I know I have that too, but my Dr's won';t accept it. They said I would be dead by know. I just know that I have been really lucky so far. I have stared death in the eyes five times now (not to mention the times I didn't have the experience). They have never caught one of my episodes on a monitor or ECG.


This web site is not a substitute for a thorough medical evaluation and diagnosis of your vaso-vagal type symptoms.  Medical treatment and diagnosis is the only acceptable initial response to these serious symptoms since they might present from any number of life threatening and treatable illnesses. It is for you and your physician to rule out more serious illnesses; Please don't use this online forum as an alternative to getting responsible medical attention and being under the care of a physician for the duration of any unknown, suspected or dangerous vaso-vagal syndrome symptoms.
Last changed: June 22, 2007