Psycho-Babble Medication Thread 50878

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Re: Topamax Experiences?

Posted by maribeth on January 24, 2001, at 6:34:33

In reply to Re: Topamax Experiences?, posted by Lexie on January 24, 2001, at 4:41:22

> > > > > >
> > > >
> > > > Lexie:
> > > >
> >
> > I'm glad to hear it is working out for you! By the way... where is your area, anyway?
>
> I live in Orlando, Florida. If you live in the area I will give you the name of my Pdoc. He is really the best. Lexie

To all you fellow Topomax folks,
I'm really glad to have gotten involved with this thread. Saw my pdoc yesterday. He seems interested in this group also
He originally started me on the Topomax to see if it would promote some weight loss.
As I have said in prior postings I am not supposed to be bi-polar, my moods have certainly changed! They Seem to have "smoothed out". No more quick witted
sarcastic retorts". No, more "too sensitive" hurt feelings or crying at the drop of a hat. I am now able to sit in a group without having
to make a comment. And, as for the cognitive stuff -- this may be a bit of a silly measure of that, but my husband and I are "Jeopardy Freaks"
and at first (when I was on 50 to 200 mgs per day I was a bit slow and cloudy and I almost gave the Topomax up. However, Im now on300mgm
and working up to 500mgm and all side effects (including the congnitive stuff) seem to have dissappeared. However, I am fifty-seven years
old,so who knows!! Thanks for your support and do hang in there all of you. Blessings--Maribeth

 

Re: Topamax Experiences? » maribeth

Posted by Vince on January 24, 2001, at 10:28:58

In reply to Re: Topamax Experiences?, posted by maribeth on January 24, 2001, at 6:34:33

> > > > > > >
> > > > >
> > > > > Lexie:
> > > > >
> > >
> > > I'm glad to hear it is working out for you! By the way... where is your area, anyway?
> >
> > I live in Orlando, Florida. If you live in the area I will give you the name of my Pdoc. He is really the best. Lexie
>
> To all you fellow Topomax folks,
> I'm really glad to have gotten involved with this thread. Saw my pdoc yesterday. He seems interested in this group also
> He originally started me on the Topomax to see if it would promote some weight loss.
> As I have said in prior postings I am not supposed to be bi-polar, my moods have certainly changed! They Seem to have "smoothed out". No more quick witted
> sarcastic retorts". No, more "too sensitive" hurt feelings or crying at the drop of a hat. I am now able to sit in a group without having
> to make a comment. And, as for the cognitive stuff -- this may be a bit of a silly measure of that, but my husband and I are "Jeopardy Freaks"
> and at first (when I was on 50 to 200 mgs per day I was a bit slow and cloudy and I almost gave the Topomax up. However, Im now on300mgm
> and working up to 500mgm and all side effects (including the congnitive stuff) seem to have dissappeared. However, I am fifty-seven years
> old,so who knows!! Thanks for your support and do hang in there all of you. Blessings--Maribeth


Maribeth,

Glad to hear it has helped with your moods. Have you had any weight loss? How long have you been on it?

When you said, "No more quick witted sarcastic remarks, No, more too sensitive hurt feelings", I immediatly thought of my sister. She is on Paxil now for depression. I think that she could use Topomax but I don't know how to suggest it too her without getting hit with a sarcastic quick witted retort or hurting her feelings.

I've been feeling around for a mood stablizer. I've been on nuerontin because of an article that I read on Ivan Goldberg's web site, but I had my psychiatrist switch me to Topamax yesterday because the nuerontin didn't seem to be doing anything and because I was hoping Topamax would help me lose some weight.

Vince

 

Re: Topamax Experiences? Â

Posted by sherry gomez on January 24, 2001, at 18:21:32

In reply to Re: Topamax Experiences? » maribeth, posted by Vince on January 24, 2001, at 10:28:58

Hi I am new to this... I take topamax for bipolar. Does anyone get sores on their tongues from it. I take 300mg. Along with prozac. I do like it because with depakote I had problems with weight gain.

 

Re: Topamax Experiences? Â » sherry gomez

Posted by maribeth on January 25, 2001, at 7:37:38

In reply to Re: Topamax Experiences? Â, posted by sherry gomez on January 24, 2001, at 18:21:32

> Hi I am new to this... I take topamax for bipolar. Does anyone get sores on their tongues from it. I take 300mg. Along with prozac. I do like it because with depakote I had problems with weight gain.

Sherry,
Yes, I had terrible mouth sorer for about the first week that I was
on Topamax. I used one of the over the counter agents to numb my mouth
then had my doc order some Xylocaine2%. The sores went away and haven't
come back, Maribeth

 

Re: Topamax Experiences?-Sedation ?

Posted by Kingfish on January 25, 2001, at 16:30:37

In reply to Re: Topamax Experiences? Â » sherry gomez, posted by maribeth on January 25, 2001, at 7:37:38

I still can't believe all the wonderful info being gathered here about this med. Thanks!

I have a ? re: sedation - I can't seem to get above 100mg a day, even if I take it all at night. It is helping, as I've mentioned, even at that low dose, but my psych. and I would like to get it higher. I've tried three times now at 125 mg. for up to a week at a time and I sleep at least 3-4 hours a day and feel horrible.

Has anyone else had this problem? Is there something to take to counteract it (though I really don't want to get into more meds if possible). :(

Thanks!

 

Re: Topamax Experiences?

Posted by KarenK on January 25, 2001, at 18:02:35

In reply to Re: Topamax Experiences?, posted by Bob on January 23, 2001, at 21:32:35

< Topamax helped me mostly with the anger and acting out highs >

Folks,

I put the topamax to the test today. I drove in NYC midtown traffic. Now when I was on the depakote, I really didn't feel the need to honk my horn and definitely did not yell at cab drivers no matter how stupid their driving was. I just stopped the depakote this week and I'm on 125mg of topamax. I see my pdoc tomorrow. Is the anger control dose dependent?

KarenK

 

Re: Topamax Experiences?

Posted by KarenK on January 25, 2001, at 18:11:27

In reply to Re: Topamax Experiences?, posted by maribeth on January 24, 2001, at 6:34:33

Maribeth,

I started on Topamax for the same reason as you, to lose weight. I'm not supposed to be bipolar, but I am moody and your comments about sarcastic remarks fits me to a tee. I was on prozac, depakote, and topamax. Now that the depakote is out, my sarcasm is back. I don't have to make a comment like I used to, but then I don't have to. I have one of those very expressive faces. I have to talk to my pdoc about this. Maybe an increase in dose will help. I'm glad it's working for you. It gives me hope.

Love,
KarenK

>
> To all you fellow Topomax folks,
> I'm really glad to have gotten involved with this thread. Saw my pdoc yesterday. He seems interested in this group also
> He originally started me on the Topomax to see if it would promote some weight loss.
> As I have said in prior postings I am not supposed to be bi-polar, my moods have certainly changed! They Seem to have "smoothed out". No more quick witted
> sarcastic retorts". No, more "too sensitive" hurt feelings or crying at the drop of a hat. I am now able to sit in a group without having
> to make a comment. And, as for the cognitive stuff -- this may be a bit of a silly measure of that, but my husband and I are "Jeopardy Freaks"
> and at first (when I was on 50 to 200 mgs per day I was a bit slow and cloudy and I almost gave the Topomax up. However, Im now on300mgm
> and working up to 500mgm and all side effects (including the congnitive stuff) seem to have dissappeared. However, I am fifty-seven years
> old,so who knows!! Thanks for your support and do hang in there all of you. Blessings--Maribeth

 

Re: Topamax Experiences? Â

Posted by KarenK on January 25, 2001, at 18:13:39

In reply to Re: Topamax Experiences? Â, posted by sherry gomez on January 24, 2001, at 18:21:32

Sherry,

No, but my gums sure are sore. I'm on prozac too and I got off depakote for the same reason as you.

KarenK

> Hi I am new to this... I take topamax for bipolar. Does anyone get sores on their tongues from it. I take 300mg. Along with prozac. I do like it because with depakote I had problems with weight gain.

 

Re: Topamax Experiences/Sherry

Posted by KarenK on January 25, 2001, at 18:39:48

In reply to Re: Topamax Experiences? Â, posted by KarenK on January 25, 2001, at 18:13:39

> Sherry,
>
I was reading your other post about topamax not having the same calming effect as lithium and depakote. I totally agree. Does anyone find topamax to have a calming effect on them?

KarenK

 

Re: Topamax Experiences? » KarenK

Posted by Lexie on January 25, 2001, at 19:43:28

In reply to Re: Topamax Experiences?, posted by KarenK on January 25, 2001, at 18:02:35

> < Topamax helped me mostly with the anger and acting out highs >
>
> Folks,
>
> I put the topamax to the test today. I drove in NYC midtown traffic. Now when I was on the depakote, I really didn't feel the need to honk my horn and definitely did not yell at cab drivers no matter how stupid their driving was. I just stopped the depakote this week and I'm on 125mg of topamax. I see my pdoc tomorrow. Is the anger control dose dependent?
>
> KarenK

KarenK

I was the one that made the above comment and for me it was dose dependent the anger control and acting out was not under control until I was at about the 200 level. Keep in mind it is not a magic bullet it took at least 2 weeks to build the tolerance to control these tendences. I hope this works as well for you as the depakote. I am sure it doesn't work for everyone. The advantage of Topamax is not having to go for the blood testing. Good luck and remember it is important to do what works for you. Lexie

 

Re: Topamax - Anger/Highs, Sedation, Sores

Posted by phillybob on January 25, 2001, at 23:21:16

In reply to Re: Topamax Experiences? » KarenK, posted by Lexie on January 25, 2001, at 19:43:28

Anger/Highs: I'd say I feel a bit more "engaging" with topiramate than without it (though I can not compare it to it having been on either Depakote or Lithium because I had not been on either one of those for any significant period of time). I do seem to get angry and do seem to get high but not in an unhealthy way. I most certainly do not seem numb or desensitized to such sensations. They are in no way out of control.

Sedation (to Kingfish, in particular): I knew exactly what you were talking about. If you you re-read my earlier posts, you shall see. I was fortunate to have the liesure to increase the dosage at a fairly quick pace with not much daily obligation pressures so sleeping/napping was not a huge problem for me. However, once the dosage surpassed the 150 mg (I think)/day mark, the daytime sedation seem to begin to dissipate. Perhaps, if you can find some way to find the freedom of time to experiment in increasing the dosage and sustaining/maintaining it at such higher levels, you might find the same ... ?

Sores: I do now recall mouth sores, now that you mention it, but no longer evident.

P.S. Still tootin' along just fine. Went bowling tonight with pals (of course, none of us are bowlers :)

 

Re: Topamax - Anger/Highs, Sedation, Sores » phillybob

Posted by Kingfish on January 30, 2001, at 5:30:31

In reply to Re: Topamax - Anger/Highs, Sedation, Sores, posted by phillybob on January 25, 2001, at 23:21:16

phillybob:

thank you for the suggestion re: dosage and sedation. I am at a larger dose now (150) and the sedation does seem to be better. I appreciate the advice!

 

Re: Topamax - Anger/Highs, Sedation, Sores

Posted by maribeth on January 30, 2001, at 7:56:05

In reply to Re: Topamax - Anger/Highs, Sedation, Sores » phillybob, posted by Kingfish on January 30, 2001, at 5:30:31

> phillybob:
>
> thank you for the suggestion re: dosage and sedation. I am at a larger dose now (150) and the sedation does seem to be better. I appreciate the advice!

Hi y'all
I pretty much agree with all of you. I seem to have the most calming "smoothed out" effect around 200mgm However,
my pdoc wants to take me up to 300 or 400mgm as at 200 the effect is not well sustained and the weightloss/appetite
supression is not working. Right now I have the luxury of being able to be at home or where i can "titrate" the dose.
(monitor dose/effect) and my pdoc is very good about this. Hang in there you all. Sorry I can't relate to the Depakote
etc, but this is the first "mood stabalizer" I have ever been on. (I did the mouth sore bit though; Xylocaine 2% from
the family doc worked well-also stay away from toothpastes with sodium (something)laureate.
Blessings Maribeth

 

Re: Topamax - Anger/Highs, Sedation, Sores » maribeth

Posted by sherry gomez on January 30, 2001, at 14:59:42

In reply to Re: Topamax - Anger/Highs, Sedation, Sores, posted by maribeth on January 30, 2001, at 7:56:05

> > phillybob:
> >
> > thank you for the suggestion re: dosage and sedation. I am at a larger dose now (150) and the sedation does seem to be better. I appreciate the advice!
>
> Hi y'all
> I pretty much agree with all of you. I seem to have the most calming "smoothed out" effect around 200mgm However,
> my pdoc wants to take me up to 300 or 400mgm as at 200 the effect is not well sustained and the weightloss/appetite
> supression is not working. Right now I have the luxury of being able to be at home or where i can "titrate" the dose.
> (monitor dose/effect) and my pdoc is very good about this. Hang in there you all. Sorry I can't relate to the Depakote
> etc, but this is the first "mood stabalizer" I have ever been on. (I did the mouth sore bit though; Xylocaine 2% from
> the family doc worked well-also stay away from toothpastes with sodium (something)laureate.
> Blessings Maribeth
hi, I am
seeing the doctor this friday, am on 300mg of topamax, I really want to say on it, but I dont think my husband wants me to stay on it as by moods are still roller coastering, if fact he is taking the day off on friday to take to to the doctor. I wish I could get rid of these sores on my tongue..I am so afraid they are going to put me back on depakote. Anyway I lost nearly 40 pounds!! I am down to 103pnds.

 

Re: Topamax - How's this for a side Effect...

Posted by Janice1 on January 30, 2001, at 17:48:04

In reply to Re: Topamax - Anger/Highs, Sedation, Sores » maribeth, posted by sherry gomez on January 30, 2001, at 14:59:42

11 cavities in one year!!!! I thought it was 6 cavities in a previous thread, but I have 11 cavities. From the dry mouth created by the Topamax. I called topiramates head office who informed me this is an uncommon but known possible side effect of the medication.

Also I am stupider (see!!! not even a word).

But I am pretty happy and stable.

Janice
100 mg Topamax
750 mg Lithium
150 mg Wellbutrin

 

Re: Topamax - How's this for a side Effect...

Posted by phillybob on January 30, 2001, at 20:43:18

In reply to Re: Topamax - How's this for a side Effect..., posted by Janice1 on January 30, 2001, at 17:48:04

Dry Mouth: drink lots of water, perhaps? this will also help prevent the dreaded kidney stones.

Dumbeding (heh, heh) and Mouth Sores: I think both of these are actually helped significantly by the addition of a B Complex vitamin supplement (at least, I have found this to be so)

Rollercoastering (for sherry gomez): I don't really know much about your situation or what your complete medication "picture" is (nor am I even a doctor for that matter), but it seems like you are having some benefits from the topamax. Perhaps, you might be able to remain on the topamax as an "adjunct" to a traditional mood stabilizer like depakote or lithium. Thus, you'd be on two mood stabilizers. (Though, I am preferring to refer to topiramate/topamax as a "neuromodulatory" drug these days).

 

Re: Topamax - How's this for a side Effect...

Posted by KarenK on January 31, 2001, at 11:09:26

In reply to Re: Topamax - How's this for a side Effect..., posted by Janice1 on January 30, 2001, at 17:48:04

> 11 cavities in one year!!!! I thought it was 6 cavities in a previous thread, but I have 11 cavities. From the dry mouth created by the Topamax. I called topiramates head office who informed me this is an uncommon but known possible side effect of the medication.
>
> Also I am stupider (see!!! not even a word).
>
> But I am pretty happy and stable.
>
> Janice
> 100 mg Topamax
> 750 mg Lithium
> 150 mg Wellbutrin

Janice,

I just went to the dentist last nite and I asked him about the topamax dry mouth. He told me to get three things: 1) Biotene gel or chiclets, 2)enamelon toothpaste, and 3) gel cam fluoride gel. The first one is to increase saliva. The last 2 are to keep you from getting cavities. He said a lot of meds do this to you even cardiac meds. Anyway I lucked out with no cavities and the dental tech told me that medically speaking she didn't think I had dry mouth. WebRX carries Biotene products. I haven't gone to the drug store yet so I haven't tried any of these yet. I agree it is irritating so I thought I would pass the info on.

KarenK

 

Topamax Experiences? (a.k.a. the longest thread)

Posted by phillybob on February 3, 2001, at 7:37:13

In reply to Re: Topamax - How's this for a side Effect..., posted by KarenK on January 31, 2001, at 11:09:26

Six weeks does not a full and complete recovery make, but I am doing very nicely with the 125 mg in the am and 100 mg in the pm plus a super B-complex stress vitamin tab in the evening as my monotherapy.

Just thought I'd post as encouragement for others and ... therapy for me ... thanks for listening.

As I hopefully will continue to do the same (well), I'll post less frequently on my success (but still update at intervals) and respond to questions within this thread (I'm notified) or to direct emails. Thanks for hearing me out. :)

 

Re: Topamax Experiences?

Posted by phillybob on February 20, 2001, at 22:05:34

In reply to Topamax Experiences? (a.k.a. the longest thread), posted by phillybob on February 3, 2001, at 7:37:13

Okay, was coastin' along just fine but got my Rx filled and thought I was takin' 237.5 mg (137.5 plus 100) but was really takin' 275 mg total (!, exclamation, because I'm hypersensitive to meds) cause I never looked at the small pill bottle and ended up havin' some untoward effects. Since then I've tapered back down to 200 mg/day total.

But, I've got that sore throat again, which I believe is actually bein' caused by bleeding from my gums irritating my throat ... a known, though infrequent, side effect per my doctor. Now, I am also paranoid about Janice's comment about cavities because of this whole "mouth ordeal." Hmmmm. Things had been goin' fairly well (and still really are but for my mouth).

I am gonna' be addin' 10mg of Prozac (an AD which I was actually on and was still in my system when I first started Topamax) though because ... uh ... er ... let's just say ... the topiramate is helping me (a male) complete the sexual act just a tad too fast and the Prozac's been a good one to counteract that for me.

 

Re: Topamax Experiences?

Posted by Bob on February 20, 2001, at 22:53:00

In reply to Re: Topamax Experiences? , posted by phillybob on February 20, 2001, at 22:05:34

> Okay, was coastin' along just fine but got my Rx filled and thought I was takin' 237.5 mg (137.5 plus 100) but was really takin' 275 mg total (!, exclamation, because I'm hypersensitive to meds) cause I never looked at the small pill bottle and ended up havin' some untoward effects. Since then I've tapered back down to 200 mg/day total.
>
> But, I've got that sore throat again, which I believe is actually bein' caused by bleeding from my gums irritating my throat ... a known, though infrequent, side effect per my doctor. Now, I am also paranoid about Janice's comment about cavities because of this whole "mouth ordeal." Hmmmm. Things had been goin' fairly well (and still really are but for my mouth).
>
> I am gonna' be addin' 10mg of Prozac (an AD which I was actually on and was still in my system when I first started Topamax) though because ... uh ... er ... let's just say ... the topiramate is helping me (a male) complete the sexual act just a tad too fast and the Prozac's been a good one to counteract that for me.

I've had frequent sore throats on topo also.

Bob

 

Re: Topamax Experiences?

Posted by maribeth on February 21, 2001, at 7:04:36

In reply to Re: Topamax Experiences? , posted by phillybob on February 20, 2001, at 22:05:34

> Okay, was coastin' along just fine but got my Rx filled and thought I was takin' 237.5 mg (137.5 plus 100) but was really takin' 275 mg total (!, exclamation, because I'm hypersensitive to meds) cause I never looked at the small pill bottle and ended up havin' some untoward effects. Since then I've tapered back down to 200 mg/day total.
>
> But, I've got that sore throat again, which I believe is actually bein' caused by bleeding from my gums irritating my throat ... a known, though infrequent, side effect per my doctor. Now, I am also paranoid about Janice's comment about cavities because of this whole "mouth ordeal." Hmmmm. Things had been goin' fairly well (and still really are but for my mouth).
>
> I am gonna' be addin' 10mg of Prozac (an AD which I was actually on and was still in my system when I first started Topamax) though because ... uh ... er ... let's just say ... the topiramate is helping me (a male) complete the sexual act just a tad too fast and the Prozac's been a good one to counteract that for me.

I am back in the thread again having been travling for several weeks. I am currently on 450mgm/day of Topamax and my
pdoc has me working up in increments of 50mgm/week to 600mgm. so far so good. The only side effects were the mouth sores
at 200mgm that lasted one week and some cognitive scrambling around that time also.
I occasionally experience some MINOR word retrieval problems but, Phillybob, I'm back to my old form in Jeopardy! Maribeth

 

Re: BAD Topamax Experiences?

Posted by phillybob on March 4, 2001, at 23:27:39

In reply to Re: Topamax Experiences? , posted by maribeth on February 21, 2001, at 7:04:36

I feel like I was playin' a pinball game and now the "Game Over" is flashing.

I had to discontinue the topiramate due to aforementioned bleeding gums which, it turns out, was actually a horrific recession of the gums! My teeth were killing me, I believe, due to the lower caninal parts, which heretofore had not "seen" the light of day, being exposed to the elements!

And, the bleeding of the gums did not help the persistent sore throat.

It was time to taper down and off, alas. Sigh. Sigh.

The sighs are because, after so many trials, I actually felt right ... even learned the word euthymic to rap the lingo with the pdoc!

My downfall may have been the accidental dosage increase mentioned above, but I'm not so sure. I had had a sore throat early on in my trial, but that went away when I was taking medication (antibiotic/antiviral) for something else.

I am very sensitive to meds, unfortunately. My conclusion is that one should just monitor this drug closely (as it is a drug). I myself would even consider re-visiting topamax in the future because it seemed to work so well as monotherapy for me, but for now, I am looking into lamictal or possibly adderal as my next monotherapy trial.

P.S. During the tapering off of topiramate, I once again experienced most of the cognitive difficulties that I had had titrating up! But now, they've all gone away as I am drug free and loving (NOT) it.

Best wishes to you all. Regards, phillybob.

 

Re: BAD Topamax Experiences?

Posted by Bob on March 5, 2001, at 1:56:48

In reply to Re: BAD Topamax Experiences? , posted by phillybob on March 4, 2001, at 23:27:39

> I feel like I was playin' a pinball game and now the "Game Over" is flashing.
>
> I had to discontinue the topiramate due to aforementioned bleeding gums which, it turns out, was actually a horrific recession of the gums! My teeth were killing me, I believe, due to the lower caninal parts, which heretofore had not "seen" the light of day, being exposed to the elements!
>
> And, the bleeding of the gums did not help the persistent sore throat.
>
> It was time to taper down and off, alas. Sigh. Sigh.
>
> The sighs are because, after so many trials, I actually felt right ... even learned the word euthymic to rap the lingo with the pdoc!
>
> My downfall may have been the accidental dosage increase mentioned above, but I'm not so sure. I had had a sore throat early on in my trial, but that went away when I was taking medication (antibiotic/antiviral) for something else.
>
> I am very sensitive to meds, unfortunately. My conclusion is that one should just monitor this drug closely (as it is a drug). I myself would even consider re-visiting topamax in the future because it seemed to work so well as monotherapy for me, but for now, I am looking into lamictal or possibly adderal as my next monotherapy trial.
>
> P.S. During the tapering off of topiramate, I once again experienced most of the cognitive difficulties that I had had titrating up! But now, they've all gone away as I am drug free and loving (NOT) it.
>
> Best wishes to you all. Regards, phillybob.

Phillybob:

I am very sorry to see that you have had to stop the Topomax, despite the fact that it was giving you some good results. I too am getting some good results, along with some annoying ones. I am experiencing a frequent recurrence of sore throat, and a persistent skin problems - rash, and very dry sensitive skin. If I alter the dose of the medecine at all, such as taking it significantly early or late, or skip one altogether, then these effects become quite pronounced.

Anyway, trying Lamictal sounds like a good idea, but it can't be stressed enough that ramping up slowly is of paramount importance to avoid all chance of a rash. I think that they establishment is really on to something here with these new generation anti-seizure meds - they seem to be better in some ways than the SSRIs for some conditions.


Bob

 

Re: Topamax Experiences: Long Term Use

Posted by o2manyfish on March 18, 2001, at 2:17:05

In reply to Topamax Experiences? (a.k.a. the longest thread), posted by phillybob on February 3, 2001, at 7:37:13

Hi There, I thought I would add some insight. I have been on Topamax for almost a year at 200mg a day. I was prescribed the Topamax to handle seizures and other problems created as a result of Encephalitis in the brain.

I had my first bout of Kidney stones after about 3 months on the Topamax. Then starting in September of last year the kidney stone occurrence became every 2 weeks. The Topamax has now damaged my kidneys.

Also as a result of the dry mouth I have ended up with severe peridontal damage on the jaw bone underneath the gum line.

I am now weaning myself off the Topamax and am trying to find a new anti-seizure medicine to supplement it. I can't continue treatment for any of my other issues until I am off the Topomax.

Other side effects I had with the Topomax included the inability to sleep regularly (2 hrs a night) until exhaustion set in, taste issues - I lost the ability to taste textures -- All sodas taste flat for example.

I am now down to 100mg of topamax everyother day and it barely maintains me on the edge of functionality and seizures.

 

Re: Topamax Experiences: Long Term Use

Posted by Bob on March 18, 2001, at 9:34:30

In reply to Re: Topamax Experiences: Long Term Use, posted by o2manyfish on March 18, 2001, at 2:17:05

> Hi There, I thought I would add some insight. I have been on Topamax for almost a year at 200mg a day. I was prescribed the Topamax to handle seizures and other problems created as a result of Encephalitis in the brain.
>
> I had my first bout of Kidney stones after about 3 months on the Topamax. Then starting in September of last year the kidney stone occurrence became every 2 weeks. The Topamax has now damaged my kidneys.
>
> Also as a result of the dry mouth I have ended up with severe peridontal damage on the jaw bone underneath the gum line.
>
> I am now weaning myself off the Topamax and am trying to find a new anti-seizure medicine to supplement it. I can't continue treatment for any of my other issues until I am off the Topomax.
>
> Other side effects I had with the Topomax included the inability to sleep regularly (2 hrs a night) until exhaustion set in, taste issues - I lost the ability to taste textures -- All sodas taste flat for example.
>
> I am now down to 100mg of topamax everyother day and it barely maintains me on the edge of functionality and seizures.

It's sounds like you've had a very hard time, and I'm sorry to hear that. What is the damage that is caused to your kidneys?

What side-effects do you experience as you taper down?

How severe are the kidney stones, is there any warning before their onset, and do they typically occur at the same time of day?

I've been on 200mg of Topomax for about 1.5 months now for depression. It seems to control my mood somewhat, some of the time. I gives me dry mouth, dry skin, tingling extremities, hypomanic episodes with increased doses, anger bouts with increased episodes, emotional lability, and God knows what else that I can't think of right now. The one major complaint I have with this med is that I have a moderate level of anxiety/raw nerves and seems to be missing a strong sense of relaxation of well-being. If I had to taper off of this though, I'd be going back on SSRI's, and there just not better than this so far.

Again, I'm sorry to hear about your situation.


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[dr. bob] Dr. Bob is Robert Hsiung, MD, bob@dr-bob.org

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