Need some advice- where to go from here

[sconesail]

Hi All,

I posted in an earlier note that I have been having fainting/falling spells 4-1O times a day for about three years. Last week, I started having some of these with dry heaves (actually it feels more like my stomach is jerking} and strange head movements. My father witnessed several and believes them to be gastric seizures. (HE is a radiologist. Mother is a retired pediatrician.} Problem is- I am having more of the stomach type seizures- ten, Sat, ten Sun, ten Monday, Nine yesterday. Klonopin and Depakote shorten the dureation of the attacks.

I also have complicated migraine.


My local neuro says he feels this is out of his league and will only treat the migraines. Where would you reccomend going for a more extensive or helpful evaluation of this problem? My current thoughts and research point me in the direction of Hopkins, Cleaveland Clinic, possibly Mayo. However, I am open to any and all suggestions.

Please feel free to offer any advice.

Peace,
sconesail

 

[Cint]

Do you have an epilepsy center with an epileptologist in your area? Here's a list:

http://www.naeclocator.org/locator/default2.asp

Otherwise, I would suggest going to Cleveland Clinic.

 

[sconesail]

Hi,

Thanks so much for the suggestion. I am looking into the Cleveland Clinic. I had a video EEG about 2 years ago, but it did not capture anything. Several people have suggested an ambulatory EEG to either rule seizures in or rule them out. However, my local neuro doesn't want to do this. I have asked him for a referral to either UAB (the closest place with an epilepsy center) or to the Cleveland Clinic.

Right now, no one here seems to know what to do. Meanwhile, I am fainting or falling about 10 times a day. No one is sure whether I am having seizures or if Neurocardiogenic syncope is the cause. (However, in doing research on Neurocardiogenic Syncope/POTS, I haven't heard of anyone fainting this much.) A good friend suggested I look into drop seizures/attacks and that does seem to fit in a lot of ways. However, most of what I have read about them says they occur mostly in children. I started having severe fainting/falls after a viral illness three years ago. I am just not sure what to do anympore and the drs here are at a loss.

Thanks so much for the advice.

Sconesail