You suggested a Tilt Table Test with concomitant EEG. Would you tell me what that would help to find? That way if another TTT is done, I could suggest it with some level of confidence.
You had said in your response that you would not start seizure meds. and I hadn't even thought to ask you about that. I was glad you stated it because before they even had the abnormal EEG they wanted to start me on it, but I refused. Now, I believe I will be getting epilepsy monitoring in the hospital. More expensive, time consuming, and stressful, but more appropriate in my thinking.
I really had a bad time with the cardio who was giving a 2nd opinion (he knew in his mind it was seizure right away) and fortunately I am seeing a 3rd at a university hospital who is going to more or less work together with the neuro I will be seeing there. Although this cardio too, has seemed to jumped on the seizure notion already. What I am wonder'g is, the 2nd cardio did a TTT and his report didn't seem quite kosher, what kind of records can I ask for? I know I don't want the trancription, but technically what do I ask for? Do they have records of the ekg, heart rate, and bp? If so, what is it called?
This has been so hard on me. I am at the point where I will TRY to follow through with this cardio and neuro, but after that if nothing is known, so what? Let me faint, it's not life threatening. It's actually been frightening to see how some of these dr's are quickly making a judgement...
Please one more question. The 2 mri's showed a spot (I had posted to you about this,too and you said they could only guess...). My neuro here, not at univ., strongly believes it is an old stroke and that it could have even happened in utero. She feels maybe my tachy or something with my heart could have deprived it of oxygen and started all of this and even caused the "seizure". I have had abnormal sensations on the right side that started with 1st questionable syncope. I am wondering could this be and how does it line up with a new stroke? I just cannot comprehend what this means or the prognosis (it's who knows how old!).
Sorry so long, but I didn't want to waste the post. :o)
Thank you again for your time!!!
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.
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.
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.
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.
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.
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