Epilepsy Forum - For People Who Have Been Doing This For Many Years.....

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Q: For People Who Have Been Doing This For Many Years.....

asked by: MickeyFan on June 26th, 2004

Experienced User

I have been having seizures now officially 20 years now, I have been on just about all the meds and med combos that the doc can come up with. From low doses to really high ones. I even have done a couple of drug studies.
Everytime though I go though what my doc calls a honeymoon period with the med(s) and it seems to help and a short while later (usually 5-6 months) it just stops helping.
The last round of meds we tried was topamax, the side effects were rotten. But the doc thought if I stuck it out and he kept increasing the dose it would help.
I got to 500mg a day, and couldn't think clearly, spell, add, nor did I want to eat anything, and I didn't talk right. (i never could find the right word) I sounded like a babbling idot....
My doc then informed me that he wanted to switch my med again,
well, I decided that I was sick of the side effects of the meds and told him that I wanted to try not taking anything.... Of course he didn't like that idea.
Well, I did it anyway.... I weaned myself off the topamax. I haven't had any meds since may 16 2004. My mind is soooo much clearer, I feel totally differnt my memory doesn't stink any more.
And most of all i've gone from having a couple of seizures a day to.... I have only had 3 since the begining of may. And those ones were no big deal, and my mucsles which use to hurt to the point of tears don't bother me hardly at all.
I know i'm taking a chance not being on meds, my husband is worried that i'm going to crash and have a real bad seizure(s). But right now I think i'd rather just put up with the few small ones I get......
Am I crazy to think that maybe the meds cause some of the seizures???? Right now noone believes me that I have only had the 3 seizures, my husband thinks this is another kind of honeymoon period..... All that I know is that I feel better and I gained some weight back and don't look like a walking skeleton.
Thanks to everyone for being here....
Jill

Replies(6)

Kathyalison

replied on June 26th, 2004

Experienced User

Good For You!

Hi jill!
I'm glad to hear that things are going well for you! I agree with you that sometimes meds can make things worse not better. That's not to say I think being unmedicated is all that good, but if you feel better that way and are having a better quality of life right now, then maybe it's worth a shot. I suggested going off meds for a while one time, and I did, and unfortunately it didn't work out for me. My seizure condition has never been all that bad to begin with (usually having 1-2 tonic seizures every 18-24 months, although daily I have small petit mal ones which is only some quick eye fluttering). After I went off meds I ran into problems a short while later so i've been medicated since and have tried a couple different drugs.
Anyway, my point is that, as I said before, if you find that you are happier now then I think it's worth a try. With any medical decision there are always risks and side effects, I guess you just have to try to figure out which risks and side effects are most easy for you to cope with. Where there is no known cure for epilepsy, treatment in many ways is somewhat of an experiment or guessing game, trying different methods etc. Good for you for taking a chance. Just remember to keep yourself safe and also think about what is best for your family.
Kathy

p.S. How have your seizures changed since going off the meds? What were they like before you made this decision?

MickeyFan

replied on June 26th, 2004

Experienced User

Kathyalison,
thank you for the support.... I don't know how long you have had seizures, but I have been going through this for so long and it seemed that nothing worked for long.
I do realize the risk of no meds, and I am being careful..... The three that I had were small and didn't last long, only about a minute.
They really haven't changed, I do think that I am more aware of whats happening to my body now..... And can sense things better.
Thanks again,
jill

pharmainvextor12

replied on June 29th, 2004

New User

Mickeyfan:

If over the past 20 years you had tried many drugs but still experienced with seizures,

why not discussing with your doctors trying other alternatives? (although I have found only one: vagus nerve stimulator therapy)

just go to google news, type, "seizure vns therapy"

there's a nice story about a little girl how she recovers from her seizures while trying the vns therapy...

Hope this helps.

MickeyFan

replied on June 30th, 2004

Experienced User

Pharmainvexto12,
i have looked into the vagus nerve stimulator, and surgery. Unfortunatley niether is an option for me. The doc(s) have told me that surgery is not possible cuz I have abnormalites on both hemispheres, the right is 2/3 of that side and the left is about the size of a quarter.
They also told me that because where my seizures are coming from they said that I would only have a 5% chance of the vagus nerve stimulator benefiting me at all.
So i'm stuck with meds..... The docs at the cleveland clinic did tell me hopefully in 10 years or so surgery will have advanced enough to where it would be safe for me.
Jill

pharmainvextor12

replied on June 30th, 2004

New User

Mickeyfan:

Sorry mickeyfan,

i don't know now....

But even 5% of chances is still a hope?

I wish you good health, rich and good luck.

angelbeans

replied on July 8th, 2004

New User

Its funny you made the comment that you think the meds may have caused your seziures. My mother thinks thats what happened to me. I was diagnosed ten years ago, however I had seziures for about two years before I was diagnosed, but petit mal seziures. A couple of years after I had started meds, I was taken off meds, and I had grand mal seziures, which never used to occcur. My mother felt this was caused by the medication... I would like to look into other treatment, however I was also told that I would be stuck with meds for the rest of my life Sad

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