jan-
yes-in september of 2000, after the tilt table, they said it was definitely nuro cardogenic syncope. during my test, the tech said my blood pressure was dropping off the chart. i kind of knew then it was that just by what she said to me. it was confirmed a few weeks later. my nurologist washed his hands of me after that. he told me that he knew nothing about it and i had to go back to my family doctor (where i started) and go from there. my family doc then refered me to a cardiologist who then put me on florinef and adjusted my tenormin dosage. i see him every six weeks or so. the docs told me from the begining after diagonoseing me with the syncope that there was not a cure. and that i had to grow out of it. i also take zantac for an ulcer and elavil for depression and i am also an insulin dependent diabetic. i've "grown" over sixty pounds. i went from 135 to 190. i am desprately trying to lose weight. the thing is, is that i'm alone eight hours at least a day while my husband is at work. my doctor says not to do any excersizes while alone because it provokes my fainting. as well as standing for a period of time, dehydration, and walking a lot which tires me out. i have an excersize bike, which i'm going to go ride in a few, but i only ride it when my husband is home. it is really really limiting and confining for me. what do you do all day?
my husband makes me stay on the couch most of the day when i'm alone. unless someone can come over and spend the day with me.
which isn't very often. i don't even do housework some days when hes at work. and when i'm having spells, i am prohibited from leaving the couch or bed. which ever he sets me up in before leaving for work. they seem to come in waves. some weeks i can faint every day. sometimes it doesn't happen for a couple weeks. i've went as long as two months without a spell. stress will send me into a spell too. i can't drive because its against the law for someone with siezures or fainting spells to drive unless they have went six months without having one. and thats my life with nuro-cardiogenic syncope.
Brina Sue,
It does stink! My life is running to the dr.'s, neuro and cardio. I see the cardio this Thursday and I have to go in the hospital sometime in August for a video/eeg. The epileptologist doesn't think it is seizures, but needs to be certain. I can't wait until it is all over!!! A diagnosis and then periodically going to the dr.'s, then maybe things will be somewhat normal.
So was your last and official diagnosis neurocardiogenic syncope? If so, I want to tell you about a forum that might help you one way or another. It is www.ndrf.org , check it out.
i have nuro cardio genic syncope. i faint without warning. the doctors say its because my blood pressure drops suddenly and i don't get oxygen to my brain for an amount of time. i also am a diabetic, diagonosed at 22yrs old and became insulin dependent november of 2000. i have a lesion on my right frontal lobe of my brain also. i've had eeg's and they have found seizure activity on all but one. they tried telling me my fainting spells were a form of a seizure. they tried telling me its all in my head. you know what i think? its a pain in the butt. i have no life now.
Boy, I must really be tired, I thought I was answering the [complex seizure] thread a little above this one. Sorry for the confusion. It may have been a computer glitch, or a temporal lobe lapse.lol
wildcat
I am really tired today so sorry about not repeated everything but you may want to look at my comment to [Hole in the brain] a few threads above this one. The answer would be similar but I forgot to mention that tegrotol is supposed to be one of the best to control partial complex seizures but you have to take very high doses and will be in la-la land. I was in la'la land just from 300 mg to start. I ca imagine what 1800 mg might do.
I take Klonopin the next best recommended anti-convulsant for partial complex seizures and it has done wonders for me.
Dear Jan:
Actually the tilt table with the EEG is the definitive test. That is because your event are correlated with syncope and usually not during other events. The monitoring might help sort out things on the EEG as a routine EEG can miss things just because it is done in such a short amount of time, i.e. 20-30 minutes while monitoring is 2-5 days. I cannot comment on your doctors as you might expect. I would greatly doubt that your spot is causing your seizures. If I remember correctly, it isn't in a spot that we usually think of causing seizures. Since it is old and perhaps happened in utero then if it is causing your seizures, why the delay in time. This can happen but usually not. You can get both the transcript and the actually numbers from the tilt table test-release of information.
Sincerely,
CCF Neuro MD