Migraine support - Post-Topamax damage?

Author

Post-Topamax damage?

2005-05-19, 11:53 am

Hi all,

I can't tell if I'm being paranoid or not, but I went off Topamax about
a month ago since the cognitive side-effects were so overwhelming. I
wasn't even on a high dose (at its max, 100mg a day).

Now, weeks later, I'm drug-free but still have trouble with finding
words, and I make very very stupid spelling mistakes -- behavior that I
NEVER had before trying the drug. It's not as bad as when I was taking
the pills, but it's worrisome.

Has anyone else discovered this? I know there isn't much research about
the long-term effects of Topamax.

Thanks,
Rebecca

JPF

2005-05-19, 5:51 pm

"RM" <myersra@hotmail.com> wrote in message
news:1116521023.774572.98170@f14g2000cwb.googlegroups.com...
> Hi all,
>
> I can't tell if I'm being paranoid or not, but I went off Topamax about
> a month ago since the cognitive side-effects were so overwhelming. I
> wasn't even on a high dose (at its max, 100mg a day).
>
> Now, weeks later, I'm drug-free but still have trouble with finding
> words, and I make very very stupid spelling mistakes -- behavior that I
> NEVER had before trying the drug. It's not as bad as when I was taking
> the pills, but it's worrisome.
>
> Has anyone else discovered this? I know there isn't much research about
> the long-term effects of Topamax.
>
> Thanks,
> Rebecca

Rebecca, pardon me for asking, but how long were you on Topamax?
I am on a very low dose now, 25mg twice a day and sometimes I find I do the
same thing, searching for words; especially when I am under stress. It
frustrates the heck out of me since I have never had this problem before. I
just assumed I was getting old and it was my "memory" creeping up on me.
Maybe in time, as the drug flushes out of your system, things will return to
normal. Wishing you well.

Joy :o)

Jim Hewitt

2005-05-19, 5:51 pm

"RM" <myersra@hotmail.com> wrote in message
news:1116521023.774572.98170@f14g2000cwb.googlegroups.com...
> Hi all,
>
> I can't tell if I'm being paranoid or not, but I went off Topamax about
> a month ago since the cognitive side-effects were so overwhelming. I
> wasn't even on a high dose (at its max, 100mg a day).
>
> Now, weeks later, I'm drug-free but still have trouble with finding
> words, and I make very very stupid spelling mistakes -- behavior that I
> NEVER had before trying the drug. It's not as bad as when I was taking
> the pills, but it's worrisome.
>
> Has anyone else discovered this? I know there isn't much research about
> the long-term effects of Topamax.

I was on Topamax (100 mg /day) for 4 and a half months. I switched to
Depakote due to the cognitive problems. I was on Depakote for 6 months
until discontinuing it as well. I have been off Depakote for 6 months.

I can only now safely say that I have gotten beyond all of the cognitive
slowing. I mean, a month after I stopped Topamx I was already feeling
smarter again, but as you indicate, some effects seemed to persist. I still
have trouble remembering things that happened while I was taking Topamax,
but I don't think it is trouble with recall, rather trouble with storage at
the time.

It is also possible that Depakote contributed to the long recovery as some
have reported the same cognitive slowing with Depakote, but I didn't feel
this was so at the time.

My story is purely anecdotal so take it for what you will.

Take care. And may the headaches stay away!

Jim

MBT

2005-05-19, 5:51 pm

Funny you bring it up -- I talked with my neurologist today about the
half-life of Topamax, actually. A couple months ago I cut myself down from
100 mg 2/day to 25 mg 2/day (after talking to him and complaining of just
such verbal problems as you speak of) but went back to him today to *beg* to
go back up on the dosage because I have been in CONSTANT headache-land for
the past two weeks even after going back up to a 50 mg 2/day dosage
(although I was great at that dosage for quite a while a month or two ago).
I will gladly fumble verbally if I can just NOT HAVE HEADACHES. (It doesn't
affect my job, thankfully, which is primarily programming -- I'm still ok
logically). He speculated that perhaps the higher levels of Topamax stayed
in my system previously due to another drug (Accutane) that I'd been on
previously and am no longer on. He did some quick research while I was in
the office but didn't come up with anything conclusive about Accutane's
interactions with other enzymes, although Accutane definitely stays in the
system for a while, he said.

He said one dose of Topamax has a half-life of 72 hours but when you
decrease dosages (like when I went from 75 mg 2/day to 50 mg 2/day) it takes
about a week to fully get down to the lower level. But the trick is perhaps
what other drugs you are on? I'm certainly no expert in pharmacology, but
that seemed to be the result of my conversation with him today.

Hope this information is helpful for you -- sorry the Topamax side effects
are a pain for you. I certainly understand what you're going through. :-)
Marie

"RM" <myersra@hotmail.com> wrote in message
news:1116521023.774572.98170@f14g2000cwb.googlegroups.com...
> Hi all,
>
> I can't tell if I'm being paranoid or not, but I went off Topamax about
> a month ago since the cognitive side-effects were so overwhelming. I
> wasn't even on a high dose (at its max, 100mg a day).
>
> Now, weeks later, I'm drug-free but still have trouble with finding
> words, and I make very very stupid spelling mistakes -- behavior that I
> NEVER had before trying the drug. It's not as bad as when I was taking
> the pills, but it's worrisome.
>
> Has anyone else discovered this? I know there isn't much research about
> the long-term effects of Topamax.
>
> Thanks,
> Rebecca
>

friendlytxtech

2005-05-20, 8:53 am

Hi, well I don't pay any attention to what doctors say about half lives.
That's related to how long it stays in our systems. Doesn't have anything
to do with long-term affects. Topo was really hard on me. I developed acid
refluc when using it, still have it over four years later. I also had a
bunch of other problems I still have. It was a tough drug. I was on it
eight months, it took probably over three months to seem like it was out of
my system in a good sense.

Give it some time.

Michelle

"RM" <myersra@hotmail.com> wrote in message
news:1116521023.774572.98170@f14g2000cwb.googlegroups.com...
> Hi all,
>
> I can't tell if I'm being paranoid or not, but I went off Topamax about
> a month ago since the cognitive side-effects were so overwhelming. I
> wasn't even on a high dose (at its max, 100mg a day).
>
> Now, weeks later, I'm drug-free but still have trouble with finding
> words, and I make very very stupid spelling mistakes -- behavior that I
> NEVER had before trying the drug. It's not as bad as when I was taking
> the pills, but it's worrisome.
>
> Has anyone else discovered this? I know there isn't much research about
> the long-term effects of Topamax.
>
> Thanks,
> Rebecca
>

Jeff Folloder

2005-05-20, 8:53 am

friendlytxtech wrote:
> Hi, well I don't pay any attention to what doctors say about half lives.
> That's related to how long it stays in our systems. Doesn't have anything
> to do with long-term affects. Topo was really hard on me. I developed acid
> refluc when using it, still have it over four years later. I also had a
> bunch of other problems I still have. It was a tough drug. I was on it
> eight months, it took probably over three months to seem like it was out of
> my system in a good sense.

Michelle,
I had the same gastric issues after my little dance with Topamax.
Doctor gave me a 2 week course of Protonix and that seemed to take care
of the whole esophagus thing. Worth a try!

--

Jeff Folloder

Jeff's Ashtray-
http://www.folloder.com/jeffsashtray/
Non-Sequitur Blog-
http://blog.folloder.com

friendlytxtech

2005-05-20, 10:50 pm

Thanks, Jeff, but I've been on Aciphex since then. I did start with
Protonix. Since my recent bout with bronchitis, which started with me
trying to get off of my Aciphex, my doctors have since told me I will be on
it for the rest of my days...or until something drastically changes. I've
tried many times over the last two years to get off, but it's here for good
:-(

Michelle

"Jeff Folloder" <jeff@folloder.com> wrote in message
news:118rpcbt8ehtdb6@corp.supernews.com...
> friendlytxtech wrote:
>
> Michelle,
> I had the same gastric issues after my little dance with Topamax. Doctor
> gave me a 2 week course of Protonix and that seemed to take care of the
> whole esophagus thing. Worth a try!
>
> --
>
> Jeff Folloder
>
> Jeff's Ashtray-
> http://www.folloder.com/jeffsashtray/
> Non-Sequitur Blog-
> http://blog.folloder.com
>

~Sage

2005-05-21, 8:50 am

Michelle, my Dr gave me samples of Aciphex to try and I keep putting it off.
That acid and stricture problem was really acting up when I talked to him
about it and wouldn't you know it quit again right after I told him! Just
like going to the dentist with the toothache that stops as you walk through
the door, LOL! It seemed the worst side effect mentioned was headache, have
you noticed anything with that since you've been on it? I wonder if it
could give me a migraine as opposed to a *regular headache* (whatever that
is, don't think I remember anymore), since I'm prone to migraine?

~Sage
"friendlytxtech" <friendlytxtech@yahoo.com> wrote in message
news:0PydnZi-fL9zOxPfRVn-rw@comcast.com...
> Thanks, Jeff, but I've been on Aciphex since then. I did start with
> Protonix. Since my recent bout with bronchitis, which started with me
> trying to get off of my Aciphex, my doctors have since told me I will be
on
> it for the rest of my days...or until something drastically changes. I've
> tried many times over the last two years to get off, but it's here for
good
> :-(
>
> Michelle
>
> "Jeff Folloder" <jeff@folloder.com> wrote in message
> news:118rpcbt8ehtdb6@corp.supernews.com...
lives.[vbcol=seagreen]
later.[vbcol=seagreen]
drug.[vbcol=seagreen]
like[vbcol=seagreen]
>
>

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friendlytxtech

2005-05-21, 5:51 pm

Actually, I have had bouts with Aciphex and Protonix and migraines, but I
tend to associate that with medictions I'm taking and their interactions. I
actually respond well to both of those medications. Now Prilosec...a whole
different ballgame. I get nasty migraines with that medication. Since
that's now OTC, no big deal. I like Aciphex since I am prone to every side
effect they typically list, I'm glad I have not responded badly with this
one. I've been on it for several years.

It does take a few days to work...and when someone comes off, it can take a
good couple of weeks for the reflux to act up with a vengeance. But as we
all say here YMMV is definitely appropriate with any reflux issues.

When I got off of topomax, I had developed a lump in my throat...couldn't
get that diagnosed for a long time until I found a good ENT. He told me it
was the sphinter closing up related to the reflux. I raised my bed a good
3-4 inches on the head and did some other things, no problems with it
anymore.

Give it a shot, Sage, if you need it. After my last respiratory bout, I'll
never play with my reflux again. I promised my doctor :-)

Michelle

"~Sage" <sagelechat@my-deja.com> wrote in message
news:428eb7bd$1_1@spool9-west.superfeed.net...
> Michelle, my Dr gave me samples of Aciphex to try and I keep putting it
> off.
> That acid and stricture problem was really acting up when I talked to him
> about it and wouldn't you know it quit again right after I told him! Just
> like going to the dentist with the toothache that stops as you walk
> through
> the door, LOL! It seemed the worst side effect mentioned was headache,
> have
> you noticed anything with that since you've been on it? I wonder if it
> could give me a migraine as opposed to a *regular headache* (whatever that
> is, don't think I remember anymore), since I'm prone to migraine?
>
> ~Sage
> "friendlytxtech" <friendlytxtech@yahoo.com> wrote in message
> news:0PydnZi-fL9zOxPfRVn-rw@comcast.com...
> on
> good
> lives.
> later.
> drug.
> like
>
>
>
> ----== Posted via webservertalk.com - Unlimited-Uncensored-Secure Usenet
> News==----
> http://www.webservertalk.com The #1 Newsgroup Service in the World! 120,000+
> Newsgroups
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friendlytxtech

2005-05-22, 10:51 pm

Amazing isn't it...I hated that lump. I have a cat at my head and my feet,
so I'm really scrunched ;-)

I feel good again too now that I'm back on meds regularly.

Michelle

"Liz Spindola" <lspindola@comcast.net> wrote in message
news:VZqdnUnAe9AQgAzfRVn-uQ@comcast.com...
> Michelle... I think we were separated at birth!! I lived with that "lump
> in my throat" for a year or two before I finally got a diagnosis of GERD.
> Tried the elevated bed thing a couple of times and ended up scrunched at
> the foot! I'm on Prevacid, 2x's a day and am symptom free (reflux, that
> is). Doc was really pleased with my last endoscopy... things are really
> under control!
>
> Liz
>
>
> "friendlytxtech" <friendlytxtech@yahoo.com> wrote in message
> news:nNmdnfdX5sPo8hLfRVn-qg@comcast.com...
>
>

Jeff Folloder

2005-05-23, 8:58 am

Liz Spindola

2005-05-23, 5:52 pm

Yeah.... I kept telling my primary care doc about that "lump" and after a
while she thought it was just anxiety. I just kept clearing my throat and
drinking (not alcohol...) to try and get rid of it. Gastro guy caught it
right away..... Every once in a while, if I forget my meds, it comes back to
remind me NOT to forget again!

Glad you're doing well with it too.

Liz

"friendlytxtech" <friendlytxtech@yahoo.com> wrote in message
news:qbKdnWOL4c5J0gzfRVn-pQ@comcast.com...
> Amazing isn't it...I hated that lump. I have a cat at my head and my
> feet, so I'm really scrunched ;-)
>
> I feel good again too now that I'm back on meds regularly.
>
> Michelle
>
> "Liz Spindola" <lspindola@comcast.net> wrote in message
> news:VZqdnUnAe9AQgAzfRVn-uQ@comcast.com...
>
>

friendlytxtech

2005-05-24, 10:53 pm

I used to choke on food now and then. Yuk! I know...people thought I was
crazy. My gastro guy didn't have a clue. I came across my ENT using the
internet. He knew what it was right away...even showed me on some pictures
how it worked.

I don't get the lump back, but after my bout with bronchitis and all that
asthma stuff, I realize how life threatening it is to blow off the meds. No
more.

Michelle

"Liz Spindola" <lspindola@comcast.net> wrote in message
news:h4KdnWRmKI9Urw_fRVn-sQ@comcast.com...
> Yeah.... I kept telling my primary care doc about that "lump" and after a
> while she thought it was just anxiety. I just kept clearing my throat and
> drinking (not alcohol...) to try and get rid of it. Gastro guy caught it
> right away..... Every once in a while, if I forget my meds, it comes back
> to remind me NOT to forget again!
>
> Glad you're doing well with it too.
>
> Liz
>
>
> "friendlytxtech" <friendlytxtech@yahoo.com> wrote in message
> news:qbKdnWOL4c5J0gzfRVn-pQ@comcast.com...
>
>

friendlytxtech

2005-05-25, 8:54 am

friendlytxtech

2005-05-27, 5:53 pm

Kristy

2005-05-28, 8:53 am

Thank god I was only on it a month but it's taken over 6 months and I still
occasionally just cannot get the right word to come out of my mouth and I
have to kind of do a charades kind of thing where I act out/explain what
word I'm trying to say.

"RM" <myersra@hotmail.com> wrote in message
news:1116521023.774572.98170@f14g2000cwb.googlegroups.com...
> Hi all,
>
> I can't tell if I'm being paranoid or not, but I went off Topamax about
> a month ago since the cognitive side-effects were so overwhelming. I
> wasn't even on a high dose (at its max, 100mg a day).
>
> Now, weeks later, I'm drug-free but still have trouble with finding
> words, and I make very very stupid spelling mistakes -- behavior that I
> NEVER had before trying the drug. It's not as bad as when I was taking
> the pills, but it's worrisome.
>
> Has anyone else discovered this? I know there isn't much research about
> the long-term effects of Topamax.
>
> Thanks,
> Rebecca
>

Liz Spindola

2005-05-28, 10:53 pm