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Medical Forum / Diseases and Disorders / Epilepsy / February 2008

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withdrawal from Topamax

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Ravensong - 16 Jan 2008 02:33 GMT
hi, i'm new here.  well, sort of.  i was on here a long time ago.  i
have been on anticonvulsants for 27 years for complex partial
seizures.  i had an enormously difficult time gaining control of my
seizures, and for awhile they were intractable.  i was considered for
surgery, but was found not to be a good candidate.  i lost lots of
work, and have suffered from severe depression in addition to epilepsy
all these years.

well, i've been on Topamax for several years and, at the current
dosage (700mg), it has controlled my seizures for 5 years.  that is,
all except for some visual disturbances i have, which my last
neurologist said were seizures (and which were helped by an increase
in meds), but which my current one says are not.

now, with my new insurance plan, i have to pay $1076.00 for my next
refill.  just for the Topamax.  i'd have to do that twice before my
meds are completely covered, and i sooo can't afford it.  i mean, who
could???

anyway, my neurologist had said at my last appointment that he was
going to keep me on my meds 1 more year to make sure my seizures were
under control before he pulled me off the meds.  so i called him, and
asked if he might consider doing it early.  and he agreed, if my EEG
were normal.  so i had an EEG today (no results yet).

i guess i wanted to hear what you all think about a couple of
things.
   - has anybody withdrawn from Topamax, and how is it?
   - has anybody withdrawn from meds after being on them so long?
   - does anybody have any thoughts about the visual disturbances?
i'm a little worried about being off meds when i have these, since my
last neurologist said they were seizures.

thanks for listening.  it's much appreciated.
diane
G. - 16 Jan 2008 16:16 GMT
> hi, i'm new here.  well, sort of.  i was on here a long time ago.  i
> have been on anticonvulsants for 27 years for complex partial
[quoted text clipped - 31 lines]
> thanks for listening.  it's much appreciated.
> diane

Hi.  I don't have experience with that Med. but thought of something
that might help in the meantime.
  *Depending on your Med. Insurance company and where you are, *if
the Doctor writes the prescription and adds 'no substitutions'  *some
insurance companies will pay the full or percent cost you originally
had. At that cost it's worth checking with the Dr. or Insurer about.

  I'm in Canada and had one larger (than 20%) bill when the insurer
here decided a new generic for Frisium was what they'd pay 80% of, so
my cost went from $30 for 100 days to more than $60 (20% of difference
between the Original and Generic).
  My Doctor wrote a new prescription as above (no substitutions) and
the Drugstore submitted that claim and it's been accepted again and
covered within terms of my insurance.
  I personally don't want to mess with generics unless my Dr. is
confident they will give as good control (100%) as I get with the
original I use.    Just an idea you could ask the Pharmacy or Dr.
about.  G./
David Ruether - 17 Jan 2008 06:29 GMT
[...]
> i guess i wanted to hear what you all think about a couple of
> things.
[quoted text clipped - 3 lines]
> i'm a little worried about being off meds when i have these, since my
> last neurologist said they were seizures.

The following may not be at all typical, since my reaction to
Topamax was not. I got to only 50mg/day and had to "turn
around" and get off it (I later discovered that I should not have
been on it in the first place since I have many kidney stones,
and Topamax is bad for this). My speech collapsed (a rare,
but not unknown, side effect). Since the pills are a small 25mg
each, but large compared with the dose I had reached, the
jumps down were large and I "climbed the walls" for the two
weeks it took to get off it. Since your increments for reduction
will likely be far less, my guess is that you will have few
problems going off it - and hopefully your old condition will
not return. I had minor visual "jumps" with Lamictal, but
nothing like that with Topamax or Depakote (but during an
"event", visuals can be disturbed...).
Good luck with it!
--DR
Julie - 09 Feb 2008 01:27 GMT
Hello Ravensong, I'm not sure where you live, but have you checked into
prescription assistance?
http://www.epilepsyfoundation.org/search/index.cfm

Also I was able to withdraw from phenobarbital after being on it for
over 30 years.  My doctor told me it would take a very long time,
because of the withdrawal symptoms.  First he put me on a new drug and
then we very slowly started to decrease the phenobarbital.  It took
about 1 and 1/2 years.  But all is well now.

Julie

> hi, i'm new here.  well, sort of.  i was on here a long time ago.  i
> have been on anticonvulsants for 27 years for complex partial
[quoted text clipped - 31 lines]
> thanks for listening.  it's much appreciated.
> diane
Richard Stickman - 21 Feb 2008 16:18 GMT
> Hello Ravensong, I'm not sure where you live, but have you checked into
> prescription assistance?
[quoted text clipped - 43 lines]
>> thanks for listening.  it's much appreciated.
>> diane

Diane,
Heed your old neuro! THEY ARE SEIZURES I have them too and my doctor
recorded one on video EEG(he timed it at 6 minutes!!!
I was taken off Topomax because it turned me into a zombie. I suffered
every side effect imaginable coming off the stuff. It dulls your mind
terribly and did not help me at all! Good luck on your journey and for
EEG results which you now have. I don't wish to discourage you, but
coming off meds entirely is a HUGE deal. IO would be asking for a second
opinion?
Good Luck,
Rich.

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