I did a regular EEG, but on my meds. Then a few years ago I did the Video EEG, but they did take me off my meds in hopes of causing a seizure. Except...I love my doctors. And I come in with questions and she takes the time to answer them. If they couldn't explain why they needed you to go off meds, then I'd be worried--my doctor has suggested doing that recently for me, but only as an inpatient, where I'd be monitored.
Rather than anti-anxiety meds, what about depression meds? Benzodiazepines are tricky. And almost everyone with epilepsy has depression. It would also help prevent any side effects from medications like Keppra. I know when I was taking it, when I got on a high dose, I definitely was snippy at people--it was actually kind of funny, only in that I would say things that I normally don't say. But Keppra does have that depression problem.
I know neurontin is used a lot now for pain.
If there's a big hospital near you (like a city), that might be the best area to go find a new doctor.
elizabeth
----- Original Message -----
From: Kathy
To: epilepsy@yahoogroups.com
Sent: Wednesday, May 18, 2011 4:58 PM
Subject: Re: [epilepsy] Sleep Study
Thank you so much Kelly.
They are calling it a sleep study, but telling me they want to induce seizures.
I think I may call the hospital and cancel it. This isn't being done under
circumstances that I would call absolutely necessary. I've thoroughly
researched it.
My doctor left her practice and is now in Texas. After I told her I would be
sure to have a seizure after being off the Depakote for 24 hours (it's happened
twice over the history of taking my meds in ten years because I forgot to take
it), she said not to go off them for any reason and just do the study on the
meds. The hospital disagrees, and they have not had an examination with me,
nor contact with her.
On top of that, there is no way I can stay awake for 24 hours. I'll be sicker
than a dog, and an emotional mess.
The current goal is to get me off Depakote because it makes me shake. I've
been told for years that I can never go off the medicine for any reason.
I was very sick with focal motor seizures for nine years between 1993 and 2001
and nobody could figure out what was going on because I didn't black out, until
a regular EEG was done. The only reason I ended up with an EEG was because one
of my friends suggested I get one. I had to beg to get that. My primary care
doctor wasn't going to let me do it.
It's very odd because my second neurologist was positive after reviewing my EEG
in 2001 that I was experiencing seizures. I had a second EEG done this
April, and now nobody new wants to say anything and the results are the same.
Before she left my prior doctor reviewed them and said I was still getting
seizures. I really wish she hadn't gone anywhere.
I've tried to get one doctor to add Neurontin, but he refused and wouldn't tell
me why. He wanted me entirely on Keppra and/or Topomax. My body is so
ridiculously sensitive to anything, and I'm very worried about depression, so I
begged him not to put me on either, and explained to him why. Except for the
essential tremors I'm doing extremely well on Depakote. It even took away the
severe depression I was experiencing before I was on it.
I may have been (and probably still am) bipolar. Before I was put on the
Depakote, if anybody said the least little thing that upset me I would fret over
it with a constant script going through my noggin for weeks, even months. Plus
I would stay up for more than 24 hours cleaning, hand writing and rewriting the
simplest little things, sewing or knitting like a maniac, then crash for days;
or drive places; or buy things. I had two attics chock full of stuff I didn't
need, and we had to walk through piles of stuff. I'm completely different now
and I don't hoard or buy anything I shouldn't. I've been getting rid of
anything I shouldn't keep, even donating it wherever possible. I attribute it
all to the Depakote.
I was on a round of trying to find a good doctor during March and April and it
was very discouraging. I have so many co-pays between doctors, ambulance and
hospitals it's ridiculous. God bless the EMT's and the couple of ER doctors
who did care and really listened to me. I thought I found a good neurologist
until he wouldn't tell me why he wouldn't put me on the Depakote/Neurontin
combination. He didn't actually diagnose anything and wouldn't tell me why he
wouldn't switch. By that time my choices of neurologists were limited because
some couldn't use my hospital, and others wouldn't take new patients.
Fortunately I'm on a low dose of Depakote.
Plus I figured out the reason I was having pseudo seizures over and above my
meds during both of those two months was a nervous breakdown, and I brought
myself back to a nice calm level (I'm not letting myself get off guard again).
It seems as though in the process of doing so I also calmed down the tremors.
On top of that, we have only two psychiatrists in our area who are in my
insurance plan, and neither taking new patients. I was told that would be the
only way I could get a prescription for an anti anxiety medicine.
I don't mind for now because after going through all the anti anxiety
medications, and reading about their side effects, I decided to use 1/2 tsp
children's Benadryl (store brand), as needed (and that's rare) and it works just
fine for now. I told my pc what happened and they said that was fine to do.
I'm not even taking the 1/2 tablets of Valium that my pc doctor prescribed for
me. I was afraid I would become addicted to them. They were happy about
that, too.
This is all a vicious cycle. I hate medications, but I have to be on the
Depakote for seizures and probably for a personality disorder. I also
occasionally need something to calm my nerves. All the anti anxiety medicines
can cause seizures, and so can Benadryl, but the Benadryl is the least likely
to do so. All the anti anxiety medicines are likely to be downright
addicting, the Benadryl supposedly habit forming.
Oh, and this reminds me. I begged for help between 1993 and 2001, constantly
telling my doctors I knew something was wrong with me, and they ignored me.
Why is it when somebody knows there is something wrong they can't get help, and
accused of being a hypochondriac, and yet I constantly heard doctors saying
people don't get help when they should?
Mine finally suggested I sign myself into the mental health unit, and I told her
it was a chemical imbalance. I spent too many years self examining and
retraining myself because I came from an abusive family and I didn't want to
spend weeks telling the same crap over and over again to a psychiatrist,
dredging up my past, only to have them put me on an anti anxiety medicine. I
did really well without it for a long time. I think I've just become too old
to deal with it without some kind of help.
Sometimes I think part of this is a money game. I know they need to figure out
what is going on before being able to prescribe something, but all too often
I've run across doctors who prescribe medicine without figuring what is going
on, first and that scares me when it comes to seizures. They are nothing to
play with. I show up with a short page of symptoms because they ask me to, and
then they don't even read it. If I don't bring it I walk out and suddenly
remember I forgot to say something.
I was chided for forgetting to see my neurologist for a year and a half. I
felt so well I didn't feel the need to. This hit me out of the blue. They
could not have predicted a nervous breakdown, so it didn't matter when it hit.
My Depakote level was fine the entire time. By the end of two months I looked
like a bruised pincushion, and went through two MRI's to make sure I didn't have
MS.
lol ... This all stinks. I want to be one of those skinny healthy 55 year old
women who plays in her garden even in 95 degree weather, goes for bike rides and
hikes, fishes, hunts, picnics; and instead I have to stay in air conditioning,
can't go to movies, stay away from any that flashes, booms or anything that
freaks out my system with strong chemicals. I can lose weight when I really
concentrate, but it's an almost insurmountable effort. Fortunately, I do look
at what I can do, and that's a lot.
Kathy
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