Wanting off ALL meds. The Rx is Worse Than The E. - Epilepsy Message Board

KaitiePrincess · 09-13-2005, 01:28 PM

Hi.
I've been throwing this idea in my head for a while and it's driving me NUTS. Actually EVERYTHING is driving me nuts and I just don't know what to do.

My seizures are BASICALLY controlled and by basically I mean; my last EEG (25 minutes long) showed 4 seizures between 4-7 seconds each. So - if you add that up in a day, hmmmm - control? Not really. Essentially I'm not noticing them - My friend still can, and on an 'off' day when they cluster I'm like 'well CRAP' 'cause I can too...but over all my neuro says its no biggy.

IT IS A BIGGY THOUGH because I'm 23 and can't THINK STRAIGHT. OR else, think too much - like obsess, get anxious...worry blah blah blah - you get the idea. I SLEEP through the day EVERY DAY and basically I'm not ME anymore.

I'm taking:

400mg Topamax (so there goes my memory, ability to process ANYTHING school-wise like math, homework etc, and thats the reason I'm such a BLAH and sleep all day)

2 tabs of Clonazepam at night (don't even KNOW the dosage there)

2 Tabs of Zarontin (one in the morning and one in the afternoon) and again I don't know the dosage off hand. That stuff had me up ALL night long - so bring on the Clonazepam, which lasts all night and sometimes through to the next morning and half the day. I'm figuring its this stuff that has me anxious and obsessive (which I swear I never was before).

Oh, and the doctor (my GP, not my epi) gave me ativan too - just to take the edge off. I MEAN COME ON!

So, I figure, I'm going to take a vacation and see what happens. I'm still having seizures anyway. I can hardly do school work. And I'm really getting a bit TOO PICKY about the way things are done. I HATE THESE DRUGS and I want them OUT OF ME. I know its dangerous yeah, but I've come to this point. I don't know. I guess I'm just venting. I don't feel like ME....looking back a few years. ARRRRGGGGGGGGHHHHHHHHHHHHH......

Kaitie.

kayakmom · 09-14-2005, 11:14 AM

If you try and go off all these meds quickly you stand the risk of having worse seizures or status!

I am sure it is so frustrating to have so many meds, all the side effects and still have seizures.

My son hated meds, then they were suddenly pulled cold turkey with a misdiagnosis. We fought for 3 years to get him treated again. Until this year he did not want meds again. We have slowly seen him decline in abilities, in thinking to the point where he was worse off meds than when he was on his highest doses. Seizures are far more frequent, some things I do not know if he will regain now that he is back on meds.

Meds have side effects, it is a maddening process to go through a ton of meds to find ones that control but allow you some quality of life. The other side of that is that seizures can cause permanent damage when allowed to go unchecked.

Have you looked into seeing someone at a GOOD comprehensive Epilepsy center to see if surgery, VNS or Atkins are worth trying for better control? SOmetimes a GOOD epi is better at tweaking meds too...

Hang in there Kaitie! My heart goes out to you.

KaitiePrincess · 09-14-2005, 09:29 PM

It's not that I disregarded Your post - thank you for it, I just HAD TO DO IT (and I read it AFTERWARD); STUPID STUPID ME...

I DID IT, and I'LL NEVER DO IT AGAIN. (I went off them ALL in one day).

So, I'm sitting here at my computer with ear muffs on because EVERYTHING is loud - I have a migraine headache, I had like anxiety THROUGH THE ROOF all day long...

AND, I only last ONE full day before I went running to my boyfriend's house halfway through class today (as he has my meds as backup).

NEVER EVER EVER EVER EVER AGAIN.

WHICH REALLY REALLY sux and I'm fairly down about it because clearly I can't like - do this without them - but I've realized now - I need those STUPID AED's.

Oh - yeah, Seizures all day in class and afterwards...so NO FUN GUYS.

Love Kaitie.

kayakmom · 09-15-2005, 04:36 AM

Kaitie, I am so sorry you have a migraine and had such a lousy day. I really am sorry that you need these awful meds! They do stink.....

I am glad you are ok and did not go into status, though....

Hang in there. Talk to your doctor about the side effects to see if they can find a better combo that is not so bad for you.....

Take care, Ginny

KaitiePrincess · 09-15-2005, 08:11 AM

I will hang in there! (and thank you

)
Feeling a lot better this morning. I went to bed early and just slept it all off (I don't take anything else for anything else including OTC's like tylenol so as far as the migraine went - sleep was it....and it worked and here I am...)

New Day. Gotta get to class.

Thanks again for posting.

Kaitie.