done with drugs

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K

kelly.hodges

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i have been on three different medications now, and on all of them i have had extreme side effects. havent taken any meds in over 6 months now and usually i would have at least a few seizures a week but havent had any in over a month, which is a record! just wondering if anyone else has also made the choice they they are done with all the bullshit that comes with the medications and their experiences etc?? also if their is anyone that has stopped having seizures altogether (ie juvenile epilepsy)? also, the doctor told me a little while ago that if you dont medicate your epilepsy it will just keep getting worse and worse, but if you have juvenile epilepsy will it still get worse or will you just grow out of it?? thanks!!
 
I feel like I'm in the same boat as you. I'm on my fourth med which has increased my seizures and the side effects are not worth it. I'm still taking it, but I'm getting pretty fed up and depressed with it. I can't really answer your questions, just letting you know you're not alone.
 
Kelly,

I've been there with you.

When the seizures are more under control, I'll say the meds are much worse than the seizures. When I'm having lots of seizures, I'll say the seizures are worse than the meds. I seesaw.

Which reminds me. I need to update my running status on my love/hate affair with meds.
http://www.coping-with-epilepsy.com/forums/f34/i-realized-im-afraid-meds-9319/

Your docs are right. Not taking the meds can make seizures worse over time. It's usually two or more years seizure-free before your neuro will take you off of medication.
 
Despite the name, most people don't grow out of juvenile myoclonic epilepsy. The seizures can get less severe in adulthood and old age, but they don't necessarily disappear.

But if you're currently seizure-free and med-free more power to you! The only reason to consider going back on meds is if your seizures recur. You don't want to control them to avoid "getting in the habit" of seizing.
 
Kelly,

I can relate with you regarding all the medications you have been on. Over my lifetime I have been on over 7. Having seizures since I was 4 yrs old, made things hard.
Though, having siezures in general is challenging.
As of yourself, you have juvinile siezures? What exactly is that?

As of me stopping the medications prescribed, NO. Not again.
I did it once it was horrifying.
I would not recommend you stop taking it.

Do you take vitemans or any pharmacutical products?
 
I do understand you perfectly. I stopped all meds about 3 weeks ago. I had no idea I would have withdraw symptoms. I felt not so good for a few days, however the depression, not being able to think ect., went away very quickly. It is so frustrating that doctors don't tell you what to expect, and then when the side effects become too much, they cannot get you in for 2 months. I can't say my seizures have gone away, but I would rather have them, and be exausted, than just feel like I don't want to wake up in the morning. I don't think I am having as many as before I started the meds, but I have got up in the morning with a bitten tongue, and I know when my feet hit the floor, my body hurts, and I feel 90, that I did not have a good night. I do have an appt in October, and am planning on telling him a few things. I am really afraid to try another drug, as this was my 5th in 10 months. I seem to be allergic to several on top of everything else-hives-uggg. They actually had me taking benedryl every 6 hours to see if I would eventually adjust to the Keppra. Taking seizure meds, and benedryl at the same time-I might as well have been in a coma!! I hope things turn out well for you
 
Waiting till October to see your doctor has to suck. Difficult at that!
I totally understand when you say Dr's. dont tell us everything. As of affects from medication etc.
As of depression, that goes along with the Epilepsy/Siezures. Been there done that!
As of the Benedryl, did that help?
 
Benedryl did help with the hives, but still within 20 minutes, I would itch all over. 2 months of that was torture!
 
Bazpa,

I wonder why the doctor even recommended the Benedryl. Made since for him to, if it breifly lasted.
Thats sad of him/her to do that. : (
 
I relate as well!
Having siezures since I was 4 years old, having to go through multiple obstacles and medications does make life hard and hesitate.
Kel
 
I feel so bad for you, and I understand your feelings on medic. and the way they make you feel.

I am on dilantin and it has work --well the best one --along with klonopin in my seizures control, they don't last as long, they don't happen often, and they not as bad of a seizure.

How the med. (dilantin) is causeing me alot of problems from long time use.
I'm scared to try another.

How it's like I have to chose to keep taking medic. or just have the seizures.

However I know I cann't stop the medic.
 
Jyearta

Jyearta,

Yes, Its hard to live life to fullest when we constantly go through obstacles of medication affects. In fact, it seems like our Dr. doesnt believe us at time.
At least I feel that way with mine. :dontknow:

I'm currently on Vimpat and Trileptal. Its the Trileptal that causes me problems.

How about you?

With him not believing me, made me upset/mad at him. So I chose to go about things different. See if it takes affect by later this evening.

K
 
Rebecca and I felt the same thing, and about 2.5 yrs ago she stopped taking her 4th trial drug. In her case she has gained BETTER seizure control, not being on meds.
A doctor telling you it will be worse is only guessing. IMO
 
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