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
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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?