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Doctors of epilepsy

Sat, 04/27/2013 - 14:50
Well first I'd like to say doctors dont know shit about seizures period. There are so many different types of seizures and so many people that react differently to certain meds and treatments. I live around the Penn State University area and I've had epilepsy since I was 15. They started as arm jerks and collaps sometimes. I'm now 29 years old and I also developed a severe migraine disorder at the same time my seizures were under control. I did not get healthcare till about 2 years ago so I was able to see the dr regurallary. I started to see a neurologist regurallary and got all me seizures under control. Well right around that time I develop a migraine disorder. I asked the dr if it was my body's way of releasing some kind of seizure activity. So he put me on on every migraine preventative med you can think of with no positive results. So my treatment for seizures was lamictal 250mg twice a day and Valium 1mg twice a day. So I was on nortryptilyn 25mg at 4:30 pm daily as a migraine preventative (which didn't work) and the dr put me on keppra at the same time. Well then a day later I get fits of rage and call the dr and he said quit taking keppra and nortryptilyn today and come see me next week. So I quit taking both. I was on nortryptilyn for about a year. 2 days after I stopped taking it I developed "brain zaps". They are awefull. I had them every 10-30 seconds for FIVE weeks! I have no memory of that time. I wasn't save to be by myself. It was really tough on my family. I saw my neurologist 2 times a week during those 5 weeks. He was baffled. My wife started doing her own research now realizing the dr has no idea what he's doing stumbles along forum about nortryptilyn withdraw and how it causes these things called brain zaps. The way they describe them is exactly the way I was feeling. I demanded to go back on nortryptilyn then withing 24 hours I was back to myself again. Now I take nortryptilyn everyday at 4:30. But recently I started getting a series of brain zaps that start at 2:30 pm just about the same minute everyday. So right now I'm sitting in the hispital in Danville medical center. An hour and a half from home while the decrease my meds daily till I have a "brain zap" and the can catch it on my long term EEG. It's Saturday afternoon and I have been here since Monday morning. I have seen the dr twice. I saw his physitions assistants everyday but apparently they don't work Saturday's in the neuro ward. So I'm having a nonstop seizure feeling with arm jerks. All of this would be ok if they were actually finding anything out. Anybody with any thoughts?

Comments

Re: Doctors of epilepsy

Submitted by nicki on Sat, 2013-04-27 - 22:36
Relax it sounds like your in an epilepsy monitoring unit. These people do know what there talking about. Let them do all there research and make the right diagnosis before they give you any answers. When I was at the one in London Ontario they didnt tell me until the monitoring was done what there conclusion was.

Re: Doctors of epilepsy

Submitted by mereloaded on Mon, 2013-04-29 - 08:07
I am sorry about this. Let them run the tests. Yes, as you know trying new meds and withdrawing from mends is always difficult and it comes at a premium. Finding the correct med combo is an ordeal. Please know that you are not alone and that it will get better. Best wishes.

Re: Doctors of epilepsy

Submitted by Formula350tpi on Mon, 2013-04-29 - 13:20
Now it's Monday afternoon and I've been trying to see a dr all morning. We a PA has just finally found the the time to see one of its patients. I've had small seizures and seizure aura feeling all week. Now on day seven I'm trying to get discharged and they tell me no because they have to get my med levels back up. Pretty much they dropped all my med levels down to an eighth of what they were thinking the meds were masking the seizure activity on the EEG and at the end of this they found NOTHING. They found not one trace of any seizure activity. So at this point their telling me I might not even have epilepsy. What the hell is going on. I'm so sick of neurologists. They have no clue what their doing. I'm convinced now. Anytime you have a question they look at you like your an idiot. It's just a big guessing game for them. The more times they can get you in to see them for meds change another paycheck they get. So by being slow about treating you is more profitable for them. They have to pay for their big houses and their Benz somehow I guess.

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