Intro and...

[Holden]

Hello all,

I was inspired to register after reading a post in "the kitchen" about withdrawal symptoms from getting off of medication. I'll probably post in that thread too, but I'm very curious to hear stories from anyone about weaning off of medication. Especially dilantin. I'm specifically intersted in what people's withdrawal symptoms were like. Did they resemble the auras you used to have? Were they constant, or did they come and go? Did they stay with you for a period of time and then fade? Were there things you did that helped/hurt the process? Have you gone back on medication since?

A littlle history: I've had 3 grand mal seizures. Once in my late teens, which was dismissed as an isolated incident at the time. And two more around age 30--within a few months of each other. Since then I've been on dilantin (for most of that time only 200mg daily) which has kept me seizure-free for 7 years. But the side effects (for me, primarily memory loss and disorganized thinknig) have always torubled me, so with my doctors supervision, I'm half way through a month-long process of weaning off dilatin and seeing how I do without drugs.

Though I've had relatively few seizures,one of them caused a serious shoulder injury which required 9 months of physical rehab (and cost me job, plunging me into debt it took years to work out of). I am excited at the prosepect of life outside of my dilantin haze, but also aware of what can happen if this experiment fails. Cautious optimism, I guess, but a little stressed too...

So, two weeks into weaning-off I feel strange. I have a feeling in my head which bears some resemblance to the zoned-out feeling I used to get from auras (didn't know they were auras at the time), but my auras were "spells" which overcame me for a half a minute or so. This doesn't overcome me at all--I can still function pretty mormally--but it doesn't seem go away either. It's similar to the spaciness you might get with a head cold, and it feel a little like sinus pressure, but somehow different. Thei is accompanied by some edginess--which could just be nervousness about the lack of a medication safety net, but it feels a little bit biochemically induced to me. It's worth noting that I'm generally a pretty even-keeled person, not prone to anxiety, so it's a strange feeling for me.

I'd be curious to know if anyone has experienced anything like this and if so, what happened from there. Thanks for "listening."
H

 

[Bernard]

Hi Holden, welcome to the forum. :hello:

There are some things you can do to help keep the seizure threshold high while titrating down off meds. Have a look at the proactive prescription for epilepsy thread for ideas.

We hope to get Stacy (my wife) off of Dilantin if her brain waves return to normal with EEG neurofeedback.

 

[POSITIVEPERSON]

Holden I am sorry I have no experience with Dilantin I am allergic to it. Most of the time
when I wean off a med its mysoline and I have help from an acupuncturist. Because I get edgy and hyper and the acupuncture calms me down and lets me drop the med without problmes.

Welcome to the board , looking forward to getting to know you.

Riva

 

[brain]

:hello: Holden

I had no withdrawl reaction with Dilantin, but
it's been posted all over repetitiously; everyone
reacts differently to medication(s).

In fact - I can easily swoop 600 mg of Dilantin
in one sitting and not be titrated to it and have
no effects at all and easily be taken off instantly.

But the only "side effect" I'll get if I'm off of
Dilantin (being on no AED) is that I'll get seizures!

Neurologists and Medical Doctors aren't able to
understand WHY my body adapts to Dilantin so
well; it just like it's a part of my body; like one
Doctor said years ago "It's like a magnet to a
metal."

I call Dilantin the "spare tire in the trunk", as it
is the medication to fall back to if any of the AED
I have ever fails; I can always go back to it in
a flash, swoop it down and I'm back on.

I get no side effects (other than my teeth) from
it (Dilantin / Phenytoin), and they know it works.

Some of my Doctors wants to put it on the allergy
list because of the destruction it had done to my
teeth but I refuse to permit it.

But once again: Everyone reacts to the meds
differently; what might be a wonder drug(s) to
them may not be for others.

 

[Nancy]

Dilantin was, I think, my very first short term AED but it took years for me to learn the problem it caused for me -- poof.................the word is gone. Rats. Weak bones. Disolving bones.
Osteo???
I'm too lazy to look up that word. I've been taking expensive prescription Fosamax for about 10 years now and having all the bone x-rays and everyting has slowly returned to "normal".
Anyone, male or female, who has been on Dilantin should have the bone x-rays done.

 

[Birdbomb]

Hi Holden

Dilantin was the first AED and only AED I have been on consistantly for 6 years. My dosage was not even considered theraputic 200mg. I weaned myself off it last year but I took 2-3 months. I wanted to do it very slowly so not to trigger any rebound activity.

The side effects I had from dilantin was aphasia, stumbling, and dizzyness. My gums and bones were in excelent shape.

It's been a 13 months since my last dose and I still have dizzyness and the stumbling but not as bad but the good thing is the aphasia has gotten so much better, although I occasionaly have word recall issues. My thoughts are clearer and I feel so much better!

13 months no AEDS and 2 1/2 years seizure free.

I wish you luck, just don't try to rush it. Give the old body plenty of time to adjust!

 

[Holden]

Thank you everyone for the insight and the well wishes.

Of course it makes sense that weaning off of any drug you've been taking for 7 years would throw your body out of wack for a time. Suppose I should have seen that coming. But as crappy as I feel right now (pretty crappy, as it turns out) it's been eye opening to think that the withdrawal issues don't necessarily confirm my worst fears. Prior to hearing from all of you, I was beginning to think that if I was feeling bad, it must mean this was the wrong move. Now I'm thinking about how it could be a sign that I need to pace myself, or that my system just needs more time to get back into balance. Even if neither of those things turn out to be the case, it's reassuring to be operating form a broader view.

For now, I'm just hoping that whether or not this leads to my being permanently off medication, I can let it ride long enough to at least get a better read on how my mind functions outside of the dilantin haze. Even if that's the only result of this little experiment, it will have been worthwhile.

 

[paradise survivor]

Hey Holdon, I just stopped zonegran after 5+weeks because of side effects. This was my first attempt after a two year 'cleasnsing'. After a Topamax 'vertical coma' I quit everything and just dealt with the events as they came. I did try to 'listen' to my body more and paid attention to my auras and reacted proactively by resting consistantly, and using music to focus my concentration to work thru it--it actually seemed to help on many. Not great results but no crappy side effects to Motzart or Beethoven. I kinda feel like, unless I'm doing permanent damage by not medicating, I'm thinkin it's better than the side effects of all the meds. Needless to say my doc and I are of differing views on this subject but then he doesn't live it the way I do. As I have previously said I pick quality over quantity and I have done the coma years already and forgetting the memories of my life is not an effect I'm willing to oblige...sorry, sad song over, I'll get off my box.:soap: