![[dr. bob]](/dr-bob-sm.gif)
Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.orgShown: posts 58 to 82 of 1085. Go back in thread:
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.
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.
Posted by Bob on March 19, 2001, at 23:08:13
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.o2manyfish:
Could you please elaborate on how exactly the Topomax damaged your kidneys and the bone in your jaw for those of of who are taking comparable levels of the med? Needless to say, you have scared the you know what out of me! There is no evidence I have seen in the literature that Topirimate causes lasting permanent kidney damage, and you did not get specific about what happened to you.
Bob.
Posted by phillybob on March 20, 2001, at 0:34:43
In reply to Re: Topamax Experiences: Long Term Use, posted by o2manyfish on March 18, 2001, at 2:17:05
Hey, Bob! It looks like you can click on 02manyfish's name and email him directly (if it's a valid address). I'd be curious to know, too. When I was takin' it, I always drank LOTS of water (well, truth be told, I do that anyway).
Hope you are well. I meant to post sooner to say that your posts have been much more fluid which, to me, means you are feeling a bit better (than when I first recall your posts on this thread).
Regards, phillybob (formerly Topabob, currently Lamictabob)
Posted by Janice1 on March 20, 2001, at 18:19:06
In reply to Re: Topamax Experiences: Long Term Use, posted by o2manyfish on March 18, 2001, at 2:17:05
> I was very interested to hear your experience about your dry mouth and severe peridontal damage on the jaw bone underneath the gum line.
>
Since being on 100 mg of Topamax for about a year, I had 11 cavities at a dental check-up. I am awaiting my next check-up to see whether or not I will remain on the Topamax. I'm not willing to accept more than 1 or 2 cavities a year, at most. It's been great otherwise.Sorry for your experience,
Janice
Posted by Bob on March 20, 2001, at 19:33:48
In reply to Re: Topamax Experiences: Long Term Use, posted by phillybob on March 20, 2001, at 0:34:43
> Hey, Bob! It looks like you can click on 02manyfish's name and email him directly (if it's a valid address). I'd be curious to know, too. When I was takin' it, I always drank LOTS of water (well, truth be told, I do that anyway).
>
> Hope you are well. I meant to post sooner to say that your posts have been much more fluid which, to me, means you are feeling a bit better (than when I first recall your posts on this thread).
>
> Regards, phillybob (formerly Topabob, currently Lamictabob)Hey phillybob:
Yeah, I just may do that. This kidney damage thing has me worried.
So you're on Lamictal now? I tried that, but the rash stopped me. Between the dental problems and kidney problems though, I just may try a return to lamictal. The Topomax may be too hard to stay with. The cognitive dysfunction is getting on my nerves too. I'm tired of feeling dumb.
Refresh my memory... why did you finally quit the Topo?
Bob.
Posted by phillybob on March 20, 2001, at 20:02:52
In reply to Re: Topamax Experiences: Long Term Use, posted by Bob on March 20, 2001, at 19:33:48
> Refresh my memory... why did you finally quit the Topo?
Well, Bob, here's a cut and paste job for you:
"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."
I was on 225 mg/day (with an accidental increase to 275 mg for the week preceding my problems) and I guess it was just too much for my body. It was nice, though, while it lasted.
Also, you might recall, I drank tons of water to help with the kidney issues (never had any) and took a B Complex "Stress" vitamin which helped greatly with the tingling AND the cognitive difficulties. I would revisit Topamax in the future, though at a lower dosage, if the Lamictal doesn't pan out. So far, so good; I'm takin' it much slower than the Topamax. I learned my lesson. Patience.
Posted by Bob on March 20, 2001, at 21:07:56
In reply to Re: Topamax Experiences: Long Term Use, posted by phillybob on March 20, 2001, at 20:02:52
> > Refresh my memory... why did you finally quit the Topo?
>
> Well, Bob, here's a cut and paste job for you:
>
> "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."
>
> I was on 225 mg/day (with an accidental increase to 275 mg for the week preceding my problems) and I guess it was just too much for my body. It was nice, though, while it lasted.
>
> Also, you might recall, I drank tons of water to help with the kidney issues (never had any) and took a B Complex "Stress" vitamin which helped greatly with the tingling AND the cognitive difficulties. I would revisit Topamax in the future, though at a lower dosage, if the Lamictal doesn't pan out. So far, so good; I'm takin' it much slower than the Topamax. I learned my lesson. Patience.**************
Yes... patience is the key, although it's one of the things I'm short on, along with feelings of well-being. Any changes in dosage of the Topamax seem to be quite brutal for me - as in cold hands, tingling, anxiety, numbness, manic behavior, etc. It seems that more than one person on this list has experience kidney stones as well as gum/tooth and bone problems (even possible cavities with long term Topo use. I'm not so sure about this med any more. I'm thinking more and more about trying Lamictal again with a VERY slow titration rate. What kind of titration rate did you undertake out of curiosity? Did you get any sort of rash as you ramped up?
Posted by phillybob on March 20, 2001, at 22:21:39
In reply to Re: Topamax Experiences: Long Term Use, posted by Bob on March 20, 2001, at 21:07:56
> > What kind of titration rate did you undertake out of curiosity? Did you get any sort of rash as you ramped up?
I've barely titrated thus far with Lamictal which I'm trialing as monotherapy. 12.5 mg/day for about 10 days, now on 25 mg/day for almost a week. Tomorrow, gonna see the pdoc and probably move to 37.5 mg/day. I want to go real slow because I think I may have shot past my therapeutic dose with topiramate and, oh yeah, I'm weary of the rash. You can follow my trials (and Jah's too) here: http://www.dr-bob.org/babble/20010319/msgs/56941.html
Best wishes. As I posted in this thread, comin' off of topamax gave me most of the side effects I had in titrating up on the stuff. I liked the med, though. I was sayin' "euthymic." Now, I'm breathin'. I say there is a huge difference, but I think Lamictal has some promise for me (though, I'll say what I said early on with the Topamax: I might need to add something as an adjunct).
Posted by SLS on March 21, 2001, at 7:02:05
In reply to Re: Topamax Experiences: Long Term Use, posted by phillybob on March 20, 2001, at 20:02:52
Perhaps you can look into Gabitril (tiagabine). It is a relatively new anticonvulsant that I don't think I have seen anyone here try. It was mentioned as something to try by a doctor with whom I consulted last year. I suffer from bipolar depression. I have certainly placed it on my list, although I have not researched it enough to be comfortable to take it sight unseen.
- Scott
> Also, you might recall, I drank tons of water to help with the kidney issues (never had any) and took a B Complex "Stress" vitamin which helped greatly with the tingling AND the cognitive difficulties. I would revisit Topamax in the future, though at a lower dosage, if the Lamictal doesn't pan out. So far, so good; I'm takin' it much slower than the Topamax. I learned my lesson. Patience.
Posted by SLS on March 21, 2001, at 7:25:41
In reply to Re: Topamax Experiences: Long Term Use, posted by phillybob on March 20, 2001, at 22:21:39
Lamictal (lamotrigine) titration schedule for depression and bipolar disorder:
25mg x 2 weeks
50mg x 2 weeks
* (75 x 1 weeks)
100mg x 2 weeks
+50 x 1 week
Average dosage = 200mg
Range = 50mg - 300mg
(50mg does not usually provide the maximum relief)I have seen a few people taking 400mg, which is actually the average dosage for Lamictal when used in epilepsy.
I used a twice a day schedule.
e.g. 25mg = 12.5mg at breakfast and dinner.This is the schedule recommended to me when Lamictal is not being added to any other anticonvulsant. It is somewhat slower than that which is recommended in the PDR, because the PDR assumes that one is adding it to another anticonvulsant. The EXCEPTION is DEPAKOTE (valproate). The dosage of Lamictal MUST be reduced by 50%, and the titration schedule twice as slow.
* I stuck this in there for the hell of it. I guess if someone feels that they are particularly sensitive to Lamictal, it might make sense. Whenever I increased the dosage, I would feel some itching in my eyes that would disappear in one or two days. Without any data supporting the idea, I took this to be an indicator of my having a sensitivity to Lamictal, and that it gave evidence that the slower titration schedule chosen by my doctor was justified.
- Scott
Posted by Bob on March 21, 2001, at 21:36:48
In reply to Re: Topamax Experiences: Long Term Use, posted by phillybob on March 20, 2001, at 22:21:39
> > > What kind of titration rate did you undertake out of curiosity? Did you get any sort of rash as you ramped up?
>
> I've barely titrated thus far with Lamictal which I'm trialing as monotherapy. 12.5 mg/day for about 10 days, now on 25 mg/day for almost a week. Tomorrow, gonna see the pdoc and probably move to 37.5 mg/day. I want to go real slow because I think I may have shot past my therapeutic dose with topiramate and, oh yeah, I'm weary of the rash. You can follow my trials (and Jah's too) here: http://www.dr-bob.org/babble/20010319/msgs/56941.html
>
> Best wishes. As I posted in this thread, comin' off of topamax gave me most of the side effects I had in titrating up on the stuff. I liked the med, though. I was sayin' "euthymic." Now, I'm breathin'. I say there is a huge difference, but I think Lamictal has some promise for me (though, I'll say what I said early on with the Topamax: I might need to add something as an adjunct).****************
I wouldn't be suprised if I end up having to augment these antiseizure drugs with something else also (say, an SSRI?) Keep me posted as to how your Lamictal thing goes. It is disappoint to me, but not suprising to hear that all the side effects are experienced coming off medecine, the same as going on! Thanks for the link to your progress about Lamictal.
Bob
Posted by Bob on March 21, 2001, at 21:38:33
In reply to Re: Topamax Experiences: Long Term Use, posted by SLS on March 21, 2001, at 7:02:05
> Perhaps you can look into Gabitril (tiagabine). It is a relatively new anticonvulsant that I don't think I have seen anyone here try. It was mentioned as something to try by a doctor with whom I consulted last year. I suffer from bipolar depression. I have certainly placed it on my list, although I have not researched it enough to be comfortable to take it sight unseen.
>
>
> - Scott
>
>
> > Also, you might recall, I drank tons of water to help with the kidney issues (never had any) and took a B Complex "Stress" vitamin which helped greatly with the tingling AND the cognitive difficulties. I would revisit Topamax in the future, though at a lower dosage, if the Lamictal doesn't pan out. So far, so good; I'm takin' it much slower than the Topamax. I learned my lesson. Patience.*******************
How much B-Vitamin Complex did you take to reduce the tingling and confusion problems?
Bob
Posted by Bob on March 21, 2001, at 21:43:51
In reply to Re: Topamax Experiences: Long Term Use, posted by SLS on March 21, 2001, at 7:25:41
> Lamictal (lamotrigine) titration schedule for depression and bipolar disorder:
>
>
> 25mg x 2 weeks
> 50mg x 2 weeks
> * (75 x 1 weeks)
> 100mg x 2 weeks
> +50 x 1 week
>
>
> Average dosage = 200mg
> Range = 50mg - 300mg
> (50mg does not usually provide the maximum relief)
>
> I have seen a few people taking 400mg, which is actually the average dosage for Lamictal when used in epilepsy.
>
>
> I used a twice a day schedule.
> e.g. 25mg = 12.5mg at breakfast and dinner.
>
> This is the schedule recommended to me when Lamictal is not being added to any other anticonvulsant. It is somewhat slower than that which is recommended in the PDR, because the PDR assumes that one is adding it to another anticonvulsant. The EXCEPTION is DEPAKOTE (valproate). The dosage of Lamictal MUST be reduced by 50%, and the titration schedule twice as slow.
>
> * I stuck this in there for the hell of it. I guess if someone feels that they are particularly sensitive to Lamictal, it might make sense. Whenever I increased the dosage, I would feel some itching in my eyes that would disappear in one or two days. Without any data supporting the idea, I took this to be an indicator of my having a sensitivity to Lamictal, and that it gave evidence that the slower titration schedule chosen by my doctor was justified.
>
>
> - Scott***********************
It's not a bad idea to go even slower then this schedule recommends, if you can afford the luxury. If I remember correctly (and it was a while ago so I may not be recalling correctly) I followed the schedule recommended in the package, got a rash, and my doctor asked me to stop; so I couldn't find out if Lamictal would help me. I am still thinking about trying the med again. I think the slower you can ramp up on the med, the better.
Bob
Posted by phillybob on March 21, 2001, at 23:11:26
In reply to Re: Topamax Experiences: Long Term Use, posted by Bob on March 21, 2001, at 21:38:33
> How much B-Vitamin Complex did you take to reduce the tingling and confusion problems?
I am taking Twinlab's "Stress B-Complex Caps." The bottle recommends to take 2 of them, but I only take one. Just divide these numbers in half (got it from their website):
"Two hard gelatin capsules supply:
Vitamin C 1000 mg
Vitamin B-1 (thiamine) 50 mg
Vitamin B-2 (riboflavin) 50 mg
Vitamin B-6 (pyridoxine) 50 mg
Niacinamide 100 mg
Pantothenic Acid (d-calcium
pantothenate) 250 mg
Vitamin B-12 (cobalamin concentrate) 250 mcg
Biotin 100 mcg
PABA (para-aminobenzoic acid) 50 mg
Folic Acid 400 mcg
Choline Bitartrate 100 mg
Inositol 100 mg"The way I was lead to believe, the B's kind of work in conjunction with each other. You can likely find another brand with similar stuff. An excellent site on vitamin info is http://healthwell.com/
Regards.
Posted by maribeth on March 24, 2001, at 8:08:56
In reply to Re: Topamax Experiences: Long Term Use, posted by phillybob on March 21, 2001, at 23:11:26
> > How much B-Vitamin Complex did you take to reduce the tingling and confusion problems?
>
> I am taking Twinlab's "Stress B-Complex Caps." The bottle recommends to take 2 of them, but I only take one. Just divide these numbers in half (got it from their website):
>
> "Two hard gelatin capsules supply:
> Vitamin C 1000 mg
> Vitamin B-1 (thiamine) 50 mg
> Vitamin B-2 (riboflavin) 50 mg
> Vitamin B-6 (pyridoxine) 50 mg
> Niacinamide 100 mg
> Pantothenic Acid (d-calcium
> pantothenate) 250 mg
> Vitamin B-12 (cobalamin concentrate) 250 mcg
> Biotin 100 mcg
> PABA (para-aminobenzoic acid) 50 mg
> Folic Acid 400 mcg
> Choline Bitartrate 100 mg
> Inositol 100 mg"
>
> The way I was lead to believe, the B's kind of work in conjunction with each other. You can likely find another brand with similar stuff. An excellent site on vitamin info is http://healthwell.com/
>
> Regards.Hi ya'll
Long time no post. We seem to have drifted from Topamax to Lamictal, so I'll drift us back! Since I last postedI have been titrated
up to 450 mgm of Topamax and all of the aformentioned side effects have disappeared. No mouth problems, no kidney stones, ( I have
been drinking about two quarts of water a day all along) and my mood is quite even. I am not sure what the answer is here -- I'm
sorry that you all have had difficulty, but for me the higher dose seems to have worked. Maribeth
Posted by sherry gomez on March 24, 2001, at 10:27:54
In reply to Re: Topamax Experiences: Long Term Use, posted by maribeth on March 24, 2001, at 8:08:56
> > > How much B-Vitamin Complex did you take to reduce the tingling and confusion problems?
> >
> > I am taking Twinlab's "Stress B-Complex Caps." The bottle recommends to take 2 of them, but I only take one. Just divide these numbers in half (got it from their website):
> >
> > "Two hard gelatin capsules supply:
> > Vitamin C 1000 mg
> > Vitamin B-1 (thiamine) 50 mg
> > Vitamin B-2 (riboflavin) 50 mg
> > Vitamin B-6 (pyridoxine) 50 mg
> > Niacinamide 100 mg
> > Pantothenic Acid (d-calcium
> > pantothenate) 250 mg
> > Vitamin B-12 (cobalamin concentrate) 250 mcg
> > Biotin 100 mcg
> > PABA (para-aminobenzoic acid) 50 mg
> > Folic Acid 400 mcg
> > Choline Bitartrate 100 mg
> > Inositol 100 mg"
> >
> > The way I was lead to believe, the B's kind of work in conjunction with each other. You can likely find another brand with similar stuff. An excellent site on vitamin info is http://healthwell.com/
> >
> > Regards.
>
> Hi ya'll
> Long time no post. We seem to have drifted from Topamax to Lamictal, so I'll drift us back! Since I last postedI have been titrated
> up to 450 mgm of Topamax and all of the aformentioned side effects have disappeared. No mouth problems, no kidney stones, ( I have
> been drinking about two quarts of water a day all along) and my mood is quite even. I am not sure what the answer is here -- I'm
> sorry that you all have had difficulty, but for me the higher dose seems to have worked. Maribeth>I too am still taking Topamax and along with depakote, I no longer have the sores in my mouth.. but I drink alot of water too....
Posted by Bob on March 24, 2001, at 22:57:44
In reply to Re: Topamax Experiences: Long Term Use, posted by sherry gomez on March 24, 2001, at 10:27:54
> > > > How much B-Vitamin Complex did you take to reduce the tingling and confusion problems?
> > >
> > > I am taking Twinlab's "Stress B-Complex Caps." The bottle recommends to take 2 of them, but I only take one. Just divide these numbers in half (got it from their website):
> > >
> > > "Two hard gelatin capsules supply:
> > > Vitamin C 1000 mg
> > > Vitamin B-1 (thiamine) 50 mg
> > > Vitamin B-2 (riboflavin) 50 mg
> > > Vitamin B-6 (pyridoxine) 50 mg
> > > Niacinamide 100 mg
> > > Pantothenic Acid (d-calcium
> > > pantothenate) 250 mg
> > > Vitamin B-12 (cobalamin concentrate) 250 mcg
> > > Biotin 100 mcg
> > > PABA (para-aminobenzoic acid) 50 mg
> > > Folic Acid 400 mcg
> > > Choline Bitartrate 100 mg
> > > Inositol 100 mg"
> > >
> > > The way I was lead to believe, the B's kind of work in conjunction with each other. You can likely find another brand with similar stuff. An excellent site on vitamin info is http://healthwell.com/
> > >
> > > Regards.
> >
> > Hi ya'll
> > Long time no post. We seem to have drifted from Topamax to Lamictal, so I'll drift us back! Since I last postedI have been titrated
> > up to 450 mgm of Topamax and all of the aformentioned side effects have disappeared. No mouth problems, no kidney stones, ( I have
> > been drinking about two quarts of water a day all along) and my mood is quite even. I am not sure what the answer is here -- I'm
> > sorry that you all have had difficulty, but for me the higher dose seems to have worked. Maribeth
>
> >I too am still taking Topamax and along with depakote, I no longer have the sores in my mouth.. but I drink alot of water too....**********
It is excellent to hear that the higher doses of topomax are producing good results for some people. I am hanging in there with 225mg at the moment - I just upped the dose last week so am still experiencing side effects. I am still on the fence as to whether I will stick with it. There seems to be a contingent of people who have defected over to Lamictal, but I am not ready to give up on Topomax quite yet. It has given me my lighter weight body back. I am disheartened by the cognitive problems and lack of antidepressant effects though.
Bob
Posted by Lexie on March 25, 2001, at 8:27:21
In reply to Re: Topamax Experiences: Long Term Use, posted by Bob on March 24, 2001, at 22:57:44
> > > > > How much B-Vitamin Complex did you take to reduce the tingling and confusion problems?
> > > >
> > > > I am taking Twinlab's "Stress B-Complex Caps." The bottle recommends to take 2 of them, but I only take one. Just divide these numbers in half (got it from their website):
> > > >
> > > > "Two hard gelatin capsules supply:
> > > > Vitamin C 1000 mg
> > > > Vitamin B-1 (thiamine) 50 mg
> > > > Vitamin B-2 (riboflavin) 50 mg
> > > > Vitamin B-6 (pyridoxine) 50 mg
> > > > Niacinamide 100 mg
> > > > Pantothenic Acid (d-calcium
> > > > pantothenate) 250 mg
> > > > Vitamin B-12 (cobalamin concentrate) 250 mcg
> > > > Biotin 100 mcg
> > > > PABA (para-aminobenzoic acid) 50 mg
> > > > Folic Acid 400 mcg
> > > > Choline Bitartrate 100 mg
> > > > Inositol 100 mg"
> > > >
> > > > The way I was lead to believe, the B's kind of work in conjunction with each other. You can likely find another brand with similar stuff. An excellent site on vitamin info is http://healthwell.com/
> > > >
> > > > Regards.
> > >
> > > Hi ya'll
> > > Long time no post. We seem to have drifted from Topamax to Lamictal, so I'll drift us back! Since I last postedI have been titrated
> > > up to 450 mgm of Topamax and all of the aformentioned side effects have disappeared. No mouth problems, no kidney stones, ( I have
> > > been drinking about two quarts of water a day all along) and my mood is quite even. I am not sure what the answer is here -- I'm
> > > sorry that you all have had difficulty, but for me the higher dose seems to have worked. Maribeth
> >
> > >I too am still taking Topamax and along with depakote, I no longer have the sores in my mouth.. but I drink alot of water too....
>
> **********
>
> It is excellent to hear that the higher doses of topomax are producing good results for some people. I am hanging in there with 225mg at the moment - I just upped the dose last week so am still experiencing side effects. I am still on the fence as to whether I will stick with it. There seems to be a contingent of people who have defected over to Lamictal, but I am not ready to give up on Topomax quite yet. It has given me my lighter weight body back. I am disheartened by the cognitive problems and lack of antidepressant effects though.
>
> Bob>HI Bob
You sound like I did. The Topamax did nothing for an AD it helped me to lose the weight I had gained on the other meds. That is why my Pdoc added the Lamictal for it's AD quality. Did you consider both? I have done well with both of these drugs combined. As you will see by my post later on this page he is considering changing my meds to Geodon and Topamax then Geodon alone. I am not sure why. It could be that after one year I am continueing to lose weight and under my weight for my height. I hope you have been well. I have been going through a tough personal time. It is nice to come back and visit my friends here. Glad to see you and phillybob keeping the worlds longest post going. I HOPE you missed me. Smiles, Lexie
Posted by phillybob on March 25, 2001, at 17:20:23
In reply to Re: Topamax Experiences: Long Term Use, posted by Lexie on March 25, 2001, at 8:27:21
Hi, Lexie (a.k.a. Lamictal/Topamax Poster Child)!
It's good to hear back from you. I thought I read and feared that you took yourself off of all meds! Tsk, tsk for thinkin' of it (if that was you talkin' such nonsense). I know when I find something that works, I'm going to stay on it for at least 9 months before evaluating it, and even then, will likely just stay on it.
As you suggested for Bob, I might re-add a small dose of Topamax to my Lamictal mix at some point if I need to. But, for now, just monotherapy with the Lamictal. I can stand just tryin' one, so I will. I like the idea of keeping with the one drug until I get up to therapeutic doses, so I can evaluate it without clouding it with other drugs' effects. I am my own science lab. :) (aren't we all?)
Bob, I don't think the Topamax is supposed to have any AD effects. For me, though, when I was taking it, having energy back was enough to feel great again. I was probably generating my own AD effects at that point.
Cognitive difficulties were not an issue for me after a while (same thing for Jeapordy queen, Maribeth, I believe). Have you tried a Stress B Complex tab yet?
Keep 'em coming, we may not be the longest thread yet, but I have faith we can get there, if we all work together on this, mates! :)~
Posted by grapebubblegum on March 25, 2001, at 20:54:39
In reply to Re: Topamax Experiences: Long Term Use, posted by phillybob on March 25, 2001, at 17:20:23
I guess this thread should have its own website, it is so long. Forgive me for not reading every post, but I was fascinated by the quote you posted, Phillybob (hey, I have a brother Bob in Philly but I don't think you are him) about differentiating between bipolar and plain old depression. To make it short (and to recap what I wrote in another thread):
My dad was a card-carrying bipolar for many years, hospitalized several times and treated last I heard with Tegretol among other meds. My mom has some sort of personality disorder involving controlling others and has had alcoholism problems. Now, I myself have been diagnosed with depression with or without panic disorder over the last 15 years (I'm 35, but the panic attacks started around age 10 or 12.) I have never felt "depressed" but I can see that a lot of symptoms of depression are there when I am not treated with SSRI's and the klonopin that I take as needed (rarely) for panic attacks. My son, though, who is only 5 has been recently diagnosed with bipolar disorder. His pdoc admits that he went in large part on family history in making that diagnosis. Zyprexa was started and it made great improvements in my son but the weight he put on in one month was alarming. He was switched to topomax and has done PHENOMENALLY well, like he is a new person and I couldn't be happier about that. My question: Although I fail out on the traditional "mania" tests, should I re-consider my usual ill-fitting "depression" diagnosis and see if maybe topomax might work for me? My very sharp pdoc suggested trying whatever works well on my son. We ruled out the zyprexa early because of the weight-gain effect. I am having trouble understanding the difference between depression and bipolar disorder. I understand the manic component should be there in bipolar... but is that a hard and fast rule? Does the depression in bipolar people differ from the "typical" depression symptoms? Mine has always been atypical anyway, e.g. oversleeping rather than insomnia.
Posted by phillybob on March 26, 2001, at 6:42:49
In reply to Re: Topamax Experiences: Long Term Use, posted by grapebubblegum on March 25, 2001, at 20:54:39
The best answer to your question, brother ... er ... I mean ... Grape Ape :) ... is to read many, many posts here and you will learn a lot about the various manifestations of the various illnesses variously sickening us.
That, I'm sure you're doing, but you may have missed this following post within this very same thread: http://www.dr-bob.org/babble/20001231/msgs/51384.html
The article linked and cut and pasted within is one of the favorites that I've come across. It puts the mania on hold as a diagnosis tool, in favor of a lessor sub-hypomanic criteria. It's interesting and makes a lot of sense to me.
How much Topamax is your son taking and how long has he been on it? It's great to hear of someone being treated so successfully at such an early age, before the illness wreaks havoc on one's life. Best wishes.
P.S. Doesn't sound like we are literally brothers to me, too.
Posted by grapebubblegum on March 26, 2001, at 15:37:04
In reply to Re: Topamax Experiences: Long Term Use, posted by phillybob on March 26, 2001, at 6:42:49
Thanks, PhillyBob. That cut-n-paste is exactly what piqued my interest. I bookmarked Dr. Hume's "How the World Works" reading list because it looks like interesting material and I'm also going to search for Dr. Ivan Goldberg's page. (Hey, does it qualify as sub-manic behavior to collect and hoard and relentlessly seek out new sources of reading material that I never get around to reading because I am too busy making sure I have found ALL the books I want to read but can't possibly read in a lifetime? j/k *I think*)
I don't think you are my brother but I KNOW I am DEFINITELY not your brother because females rarely achieve that status even in this day and age of equal opportunity. ;o)
Posted by grapebubblegum on March 26, 2001, at 15:46:25
In reply to Re: Topamax Experiences: Long Term Use, posted by grapebubblegum on March 26, 2001, at 15:37:04
Oops, I forgot to answer the question. My son is on 25 mg. every morning with instructions to add another 25 mg. in the afternoon if needed, but I haven't noticed the need yet. He has only been taking topomax for about two weeks but the improvement has been dramatic. I posted about in on the kidzpsychobabble board, and here's the link to that post: http://www.dr-bob.org/babble/child/20000813/msgs/135.html
Posted by phillybob on March 26, 2001, at 16:00:13
In reply to Re: Topamax Experiences: Long Term Use, posted by grapebubblegum on March 26, 2001, at 15:37:04
> (Hey, does it qualify as sub-manic behavior to collect and hoard and relentlessly seek out new sources of reading material that I never get around to reading because I am too busy making sure I have found ALL the books I want to read but can't possibly read in a lifetime? j/k *I think*)
Yep. :)
[at least I do it, but seriously don't think it's anything more than a little OCD type behavior in a personality sense of the diagnosis, not problematic unless it gets in the way of any other productivity ... mine is problematic, I do believe, but not worthy of any cure more than perhaps a time management course (know any good ones?) ... my "Favorites" list is, oh let's just say, fairly long ... but I know everything that's there!] :)
Okay, sis, I'm done.
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