Epilepsy Forum - How to Get Off of Medication
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How to Get Off of Medication

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Billy the Kid

New User, Becoming EHEALTHy
Joined: 23 Dec 2004
Posts: 2
Location: Utah
How to Get Off of Medication
Posted: 12-23-04 04:07am

I had my first seizure (grand mal) when I was 4 years old. I was diagnosed with status epilepus. (sp?). I then had my next seizure when I was 6, ironicly, on today, the 23rd while watching rudeoffs nose blink. I than had my 3rd and last grandmal seizure at age 11. I am now 24. I have been on the same medication (phenobarbitol) for 20 years.

Frankly, I am sick of being on medication. I haven't had a grand mal seizure for 13 years.

The only problem I seem to have is small tremors in my hands every now and then, which started when I was 20. Sometimes it is on my thigh and back. Most of these "tremors" feel like a cell phone on vibration, they last anywhere from a few seconds to 6 hours or so. They look like muscle spasms. My neurologist (who I havn't talked to since my last eeg, 2 years ago) said she thought they were "folic molations" (sp?) and were benign. I have had the same nuerologist and doctor for 8 years. My eeg is still a little abnormal, (as of 2 years ago).

So with almost all I can think of, as regarding to all my symptoms, up there I ask you this question,

can I get of my medication now??

I can't complain, it doesn't seem to affect me, but how am I sopposed to know what normal is? I only remember a little bit of life before phenobarb.

But, soon I will be on my own insurance, and I want this to be behind me.

So, what are your suggestions? Do I stay on this medication for life? Is there a reason for me to stay on? What are the dangers of me getting off?

Sorry if this isn't exactly coherent. It is late, so I am not thinking clearly. :oops:

thank you for your suggestions.

Also, I don't know if this makes much of a difference or not, but I am the only epilepic in my family. There is no history of this disorder at all on my dad's side or mom's. My last mri (about 2 years ago) also showed nothing wrong with my brain. So it isn't scared or anything.
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kayakmom

Experienced User , Rather EHEALTHy
Joined: 21 Jun 2004
Posts: 252
Location: Conn
Thanks: 2
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Posted: 12-23-04 13:02pm

It is hard to stay on meds when you do not see a lot of clear reason..

Have you thought about seeking a second opinion from another neuro now, before you loose insurance? It might be a good idea and ask if it is possible to try and go off meds.


Pheno is a really tough one to wean. Having an abnormal eeg makes some neuros less likely to wean, but it is worth asking.

Have you asked your neuro directly if this would be something you can try to see how you do?
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