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Medical Forum / Diseases and Disorders / Epilepsy / April 2004

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Started on Topomax

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bugs@bugs.com - 26 Mar 2004 22:54 GMT
I have been on Topomax for 5 days now and Everyone keeps asking me if I
notice anything. I know this is going to take sometime getting built up in
my blood. My wife has found a way to get the Topomax for free. She does it
someway through the drug company themselves.

The Cleveland Clinic wanted to do the monitoring on me and possible surgery
on the point that shows up on the monitoring, but they called with the
appointment and told us it would be $8700.00 per night for the monitoring
room alone. I can't afford that. I am happy with the Topomax and hope it
works for me.

Seizure free for 45 seconds.
turbinado - 26 Mar 2004 23:49 GMT
Good luck with the Topamax - I hope you can tolerate it better than I could.

> I have been on Topomax for 5 days now and Everyone keeps asking me if I
> notice anything. I know this is going to take sometime getting built up in
[quoted text clipped - 8 lines]
>
> Seizure free for 45 seconds.
David Ruether - 27 Mar 2004 16:30 GMT
Likewise (though without epilepsy having been diagnosed). At 25mg/day
for the first week (on the way to 100-400, with success, or with side effects
stopping me), I was OK, but at 50mg/day (tiny dose for most), while the
"jitters and jerks" appeared to go away (they have, spontaneously, done
this at other times for short periods since then when off all medications),
speech problems got really bad, some other stuff didn't change - and
depression, confusion, and fogginess set in (all absent before). I went off it
after a week, going first to 25mg/day (wild hyperactivity and jitters for the
first three days, but the depression, etc. went away), then almost a week
later to 0mg/day (wild jitters for the first three days, followed by almost
three weeks of intense episodes of hyperactivity and jitters and jerks - and
the speech problems remained(!). Most appear to find Topamax a "benign"
drug - but it can hit you hard (we haven't dared try anything else like it since).
I hope it works for you, but if you need to come off it, taper off it slowly...
Signature

DR

> Good luck with the Topamax - I hope you can tolerate it better than I could.

> > I have been on Topomax for 5 days now and Everyone keeps asking me if I
> > notice anything. I know this is going to take sometime getting built up in
[quoted text clipped - 9 lines]
> >
> > Seizure free for 45 seconds.
Kate - 13 Apr 2004 14:33 GMT
I used to read and post here a lot when I had to go back on meds a few years
ago. I was 'passing' and I saw your post about Topomax.
After trying Lamicatal and Tegretol I eventually got put on Topomax just as
it was licenced for monotherapy here.
It was utter hell to get on to - the dosage got put up by the tiniest
increments once a fortnight, so I would have one week getting used to the
new dosage, then a week of feeling nearly human again, then have to increase
it again. It took forever, and every other week was pins and needles in my
figures, a head that felt like cotton wool, insomnia and a dry mouth all
night.
That said I have now been on it at my current dosage for about four and a
half years. The side effects are gone (unless I accidentally take it twice
in the morning - and boy, I only did *that* once!). My seizures were
photosensitive so I used to get what were, basically, partials whenever I
went by a flickering light of certain frequencies. 6 months into my Topomax
I went to a gig and when the (inevitable) strobe light came on I realised
.... nothing.  For me, touch wood, it's been fantastic. I finally felt like
something worked without leaving me faintly stoned all the time and went out
and got my driving licence last year. It's allowed me to feel like a grown
up.

Oh, and after years biffing out on Epilim and all the rest in 6 months on
Topomax I lost so much weight that half my office wanted to buy it off me. I
could have made a fortune. Damn these morals!

So stick at it until you reach full dosage. It's not easy, but try not to
judge on the first 6 months.They're hell.

Kx
turbinado - 13 Apr 2004 20:43 GMT
Congratulations on your success.
I wish I could have tolerated the stuff like you do! After 18 months I had
to switch to Tegretol because I was losing my ability to speak English (my
native language). There were other side effects too but that was the one
that I really couldn't handle - it was interfering with my work
(proofreading).

> I used to read and post here a lot when I had to go back on meds a few years
> ago. I was 'passing' and I saw your post about Topomax.
[quoted text clipped - 25 lines]
>
> Kx
David Ruether - 14 Apr 2004 13:15 GMT
From "Kate's" post, it looks like I went about taking
Topamax too fast - I tried going up 25mg/day weekly,
rather than every two weeks, so I  saw only the
problems (depression, "fogginess", confusion, and
HORRIBLE speech problems at only 50mg/day).
I stayed at that level only one week, then went back
to 25mg/day for a week (with "climbing the walls" for the
first three days with extreme jittering and hyperactivity),
then off it after a week (with "climbing the walls" for
three weeks afterward!). Unfortunately, the speech
problems remained (see the thread, "'Episodes' Types...",
below), though lessened. This was unfortunate. I still
"babble" a bit, have stuttering and slurring and "stops",
and still have problems figuring out how to say words I
know. Often this last is so bad that I just give up trying
to say anything at all for a while - and the ultimate
frustration is not being able to speak even the needed
swear-word to express the frustration! It never affected
my writing, but speech was, and is now, a major
additional problem brought on by Topamax...
--
David Ruether
rpn1@cornell.edu
http://www.ferrario.com/ruether

"turbinado" <turbinadoNOSP@Mtelus.net> wrote in message n
ews:tpXec.49778$Sh4.30400@edtnps84...

> Congratulations on your success.
> I wish I could have tolerated the stuff like you do! After 18 months I had
[quoted text clipped - 39 lines]
> >
> > Kx
 
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