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Dr. Bob is Robert Hsiung, MD,
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Posted by Beck on December 11, 2003, at 20:52:45
In reply to Re: Topamax Experiences? » Beck, posted by headachequeen on December 11, 2003, at 20:36:58
> > Wow, when I look at all the horrendious possible side-effects of Topamax I have to look forward to, I find myself wondering why my neurologist asked me to try it. This medicine sounds like more trouble than its worth really. But anyway, thanks for educating me on the horrors/great things about Topamax!
>
> it may well depend upon the reason for trying it... there are other meds out there that do the same thing and have worse side effects.. I am trying to convince my doctor to take me off tegretol and put me on topomax exclusively because believe me, tegretol makes topomax look like a walk in the park on sunday afternoon... followed by a picnic while the band plays in the band stand and swans sail majestically down the river...
> I am still enjoying the tingling in the hands and feet and now have the tingling in my face... and that is all thanks to Tegretol.. or maybe it is new symptoms of the epilepsy... who knows??? I can find out by stopping the meds entirely to see... and then go into seizures... what a lovely choice....
> katThe tingling in your hands and feet is from Tegretol? When my neurologist perscribed Topamax he said that that would probly happen, not looking forward to that! Luckily it hasnt began yet, but its only week 1, so I'll wait and see.
Posted by headachequeen on December 11, 2003, at 21:39:32
In reply to Re: Topamax Experiences?, posted by Beck on December 11, 2003, at 20:52:45
> The tingling in your hands and feet is from Tegretol? When my neurologist perscribed Topamax he said that that would probly happen, not looking forward to that! Luckily it hasnt began yet, but its only week 1, so I'll wait and see.
There is some tingling with the Topomax I am told but there is a lot of tingling ... tingling??? it is as if someone cut off the circulation to my hands and feet and then let it start again... extreme pins and needles... with the tegretol... has been going on ever since I started taking the stuff...
yes there are side effects to Topomax... no pretending otherwise... but I have come to think and experience that the side effects are less and easier to live with from Topomax...
just my experience and opinion I realise... and I have also found that there is more help available for the side effects from Topomax and dealing with them... and that is here...
I take 400 mg a day of Topomax and while at times I found it scary because of what I read and what I scared myself into believing... the experience has not been as bad as the Tegretol one... and the control over the seizures has been much greater since the Topomax entered the picture... again my opinion and experience...
and I am still working on getting the Tegretol out of the picture... or on getting onto less Tegretol and replacing it with Topomax...
kat
Posted by mags on December 12, 2003, at 8:54:35
In reply to Re: Topamax Experiences?, posted by Beck on December 11, 2003, at 20:52:45
I got tingling in face, arms, hands and feet. It usually was at its worst after each increase in dose..it was annoying but I could live with it. It was like pins and needels when your foot goes asleep when you lay on it. THe worst for me was my face..especailly when I ate... my lips would tingle!! Really weird!! But it has pretty well all gone away!! Titrate slowly and you will be fine.
Good Luck.Maggie
Posted by cyndie on December 12, 2003, at 12:04:15
In reply to Re: Topamax-bipolar and weight loss? » Beck, posted by headachequeen on December 11, 2003, at 20:00:56
Whoa...what is this about a change in your voice?!?!?!?!
Posted by jtevers on December 12, 2003, at 14:27:01
In reply to Re: Topamax Experiences? » Beck, posted by mags on December 12, 2003, at 8:54:35
> I got tingling in face, arms, hands and feet. It usually was at its worst after each increase in dose..it was annoying but I could live with it. It was like pins and needels when your foot goes asleep when you lay on it. THe worst for me was my face..especailly when I ate... my lips would tingle!! Really weird!! But it has pretty well all gone away!! Titrate slowly and you will be fine.
Maggie, et. al.,
i have read seldomly that ingesting moderate (amount?) doses of a complex vitamin B helps quell the tingling sensation, any experience?
am i understanding correctly that the tingling that occurred in response to dose increases in your topamax also abated with time ... until the next increase? and may be avoided with slow titration?
Posted by Beck on December 13, 2003, at 0:19:57
In reply to Re: Topamax tingling and vitamin B ?, posted by jtevers on December 12, 2003, at 14:27:01
> > I got tingling in face, arms, hands and feet. It usually was at its worst after each increase in dose..it was annoying but I could live with it. It was like pins and needels when your foot goes asleep when you lay on it. THe worst for me was my face..especailly when I ate... my lips would tingle!! Really weird!! But it has pretty well all gone away!! Titrate slowly and you will be fine.
>
> Maggie, et. al.,
>
> i have read seldomly that ingesting moderate (amount?) doses of a complex vitamin B helps quell the tingling sensation, any experience?
>
> am i understanding correctly that the tingling that occurred in response to dose increases in your topamax also abated with time ... until the next increase? and may be avoided with slow titration?
>
>Whats titration? and is complex vitamin b different than just vitamin b?
Posted by jtevers on December 13, 2003, at 12:23:48
In reply to Re: Topamax tingling and vitamin B ?, posted by Beck on December 13, 2003, at 0:19:57
> > Maggie, et. al.,
> >
> > i have read seldomly that ingesting moderate (amount?) doses of a complex vitamin B helps quell the tingling sensation, any experience?
> >
> > am i understanding correctly that the tingling that occurred in response to dose increases in your topamax also abated with time ... until the next increase? and may be avoided with slow titration?
> >
> >
>
> Whats titration? and is complex vitamin b different than just vitamin b?answer: titration is the process of gradually increasing the dose you ingest, ie. to titrate slowly step by step.
and i don't know why or how but b-complex is a different vitamin than plain old B.
Posted by Beck on December 14, 2003, at 22:04:39
In reply to Topamax Experiences?, posted by Kingfish on January 4, 2001, at 7:29:48
So its only been a week since I started taking 1/2 of a 25mg topamax once a day and I'm so incredibley tired! I sleep 11 hours a night and it kills me to get up even then. this is okay now because I'm on break, but when school begins again I cant do this. Has anyone experienced this sleepiness and does it go away or get worse as I increase dose?
Posted by jhlsgirl on December 15, 2003, at 9:30:16
In reply to Re: Topamax Experiences?, posted by Beck on December 14, 2003, at 22:04:39
I too just started 1/2 of 25 mg. It's so weird how this drug effects people differently. I am a little tired during the day and maybe a little foggy. I have slept better then I have in a long time. but really sleepy I am not. In fact I have to say I am a little less sleepy then before I started. I was prescribed topamax as a mood stablizer and to correct my sleep I have sleep apnea as well. I started on 1/2 25 mg because of this board..thank you all so much..i hope the teeny improvment I feel gets alot bigger!!
Posted by Sooshi on December 15, 2003, at 9:33:15
In reply to Re: Topamax Experiences?, posted by Beck on December 14, 2003, at 22:04:39
Hi Beck,
My experience was the same...extreme tiredness for the first two weeks (I started with 25mgs at night). I literally couldn't function. But, it DID go away, and now I don't have any tiredness at all. I actually have a LOT of energy. With every increase in dosage though, expect another few days/week of fatigue and tiredness. Hang in there...it takes a while to build up to your therapeutic dosage, so you'll need a lot of patience!
Posted by headachequeen on December 15, 2003, at 11:29:19
In reply to Re: Topamax tingling and vitamin B ?, posted by jtevers on December 12, 2003, at 14:27:01
>
> am i understanding correctly that the tingling that occurred in response to dose increases in your topamax also abated with time ... until the next increase? and may be avoided with slow titration?
>
>Arrgghhh there are days when one should either sleep until the next day or not turn on the computer or something....
<g>Tegretol, another of the anti-seizure medications causes the tingling...tingling, now there is a nice euphemism... we live in a cold climate... they do not call it NORTHERN Ontario for no reason, believe me... and I never know if my hands and feed are telling me that they are about to file for separate maintenance because of impending frostbite or about to fall off because they are frozen or if it is just another Tegretol reaction...
the tingling side effect from the Tegretol never goes away...
at least not in my experience...it made it fun trying to sort out the Topomax experience .... :)
and before the Topomax introduction, which was done at 25 mg increments over a period of months.. and at my discretion, I could increase the dosage every two weeeks or go slower if I wished... the 'tingling' was so extreme at times that my doctor thought it might be a symptom of something else...
No one has ever told me that the Tegretol Tingles will go away...
they also affect the face... and it seems to be more on a whenever they feel like it basis...
indeed it is time to convince Someone... ANYONE that Tegretol needs to be replaced with more Topomax... maybe I am the only lunatic here? I don't know but I am convinced with all that I read that there is less risk from it than from Tegretol.... fewer side effects...
and less discomfort...
kat
Posted by jhlsgirl on December 15, 2003, at 12:30:34
In reply to Re: Topamax Experiences? » Beck, posted by jhlsgirl on December 15, 2003, at 9:30:16
how many of us have started with 1/2 of 25 mg? I have heard the slower the better. I have been on this for 4 days now and I really do feel a slight improvement..IM SLEEPING! does anyone else have fibromyalgia? my pdoc says this is also a help for that. Sounds all to good to be true when you factor in the weight loss that he also says will happen. What is the lowest dose that anyone has lost weight on? I swear I feel a small glimmer of happiness creeping in if i still remember what that feels like.
Posted by Cybele on December 15, 2003, at 13:05:12
In reply to Re: slow tritration, posted by jhlsgirl on December 15, 2003, at 12:30:34
> Sounds all to good to be true when you factor in the weight loss that he also says will happen. What is the lowest dose that anyone has lost weight on? I swear I feel a small glimmer of happiness creeping in if i still remember what that feels like.
Now this is purely anecdotal, but I took 25mg of Topamax daily for 3 weeks after being on Wellbutrin for 6 weeks (I am continuing on Wellbutrin). The Wellbutrin helped me stay on WW, but I think that effect fades after 4-6 weeks. So I was already losing weight and not stress eating when I started Topamax. A week ago or so I stopped taking Topamax because the hair loss was freaking me out. Within a few days I was struggling to stay on WW and for the last two days it was simply impossible. I was back to my gourmet/gourmand ways. Last night we had blue camembert cheese, tarragon chicken salad, french bread, Pinot Grigio, and dark chocolate for dinner--definitely NOT on WW in the volume I ate of these treats. So, last night I started back on Topamax. I don't know if it is a placebo effect (i.e., all in my head), but as I thought the Wellbutrin was helping me to stay with my eating plan I did not expect this low dose of Topamax to also help with this, and hence did not *expect* going off of it to cause a problem. Hope this makes sense.
Posted by jhlsgirl on December 15, 2003, at 13:39:12
In reply to Re: slow tritration » jhlsgirl, posted by Cybele on December 15, 2003, at 13:05:12
Hair Loss huh? well I guess I'll wait that one out. I actually lost 60 lbs on WW last year but have gained back 30 how sad is that? My Pdoc says its because I'm bi polar Im waiting that one out too. Im beginning to think that all my problems are from a sleep disorder.The topamax does make me sleep. this is all so confusing, its so hard to trust doctors. I dont know if im doing the right thing or not. with me weight gain leads to depression cant sleep because of fibromyalgia and who knows what else?
Posted by Beck on December 15, 2003, at 18:29:54
In reply to Re: slow tritration » Cybele, posted by jhlsgirl on December 15, 2003, at 13:39:12
i am not to happy to be sleeping all the time. People make Topamax sound like some wonder drug. Well I don't think its so wonderous. it causes hairloss, I've already escaped that sentance once in life, thats enough. It causes wightloss, I already lost 20 pounds (yay slimfast!) and cant realy afford to loose more. I read somewhere were theres a high rate of kidney stones in patients on topamax, that scares me. And also I read Topamax could be used as a mood stabilizer, so I was thinking hey cool, eventhough I dont need it. Well my mood certainly is not stable now! and mee and my depression were just peachy with 45mg of Remron before Topamax came along. Some wonder drrug! However I'm notorious for not taking meds the neurologist prescribes me so I guess I will stick with topamax for atleast 2 months. I hope the sleepieness goes away quickly!
Posted by mags on December 15, 2003, at 19:58:34
In reply to Re: slow tritration, posted by Beck on December 15, 2003, at 18:29:54
Hi all, Maggie hear....few notes to add,
re kidney stones, yes Topomax can be bad but not if you drink lots of water and that is also good for weight loss! I find it great for helping me sleep at night and it used to make me sleepy during day but not so much anymore. I am up to 75 mg and because I titrated(upped dose) slowly I don't have any more side effects. I feel next time I see doc I can start upping more quickly. I have not had any hair problems (keeping fingers crossed!)I am still finding I have good days and bad days mood wise but I think I am feeling more stable and happier moments are definately peaking through a lot!. My appetite has decreased but that could also be because I am on the Atkins diet.I started Atkins and Topomax at the same time, 8 weeks ago and I have lost 30 lbs.I am not complaining ;o)I haven't felt this good in a long time......
Maggie
Posted by mags on December 15, 2003, at 21:55:55
In reply to Re: Topamax tingling and vitamin B ?, posted by jtevers on December 12, 2003, at 14:27:01
I do take a Vtamin B complex 90 mg. I don't know if this helps or not 'cause I took this before I started Topamax and I sure still got tingling but my tingling has stopped. I think it is a S/E that is doseage dependant and if you titrate slowly won't be so bad...that worked for me anyway......
Maggie
Posted by jhlsgirl on December 16, 2003, at 8:29:21
In reply to Re: slow tritration, posted by mags on December 15, 2003, at 19:58:34
> Hi all, Maggie hear....few notes to add,
> re kidney stones, yes Topomax can be bad but not if you drink lots of water and that is also good for weight loss! I find it great for helping me sleep at night and it used to make me sleepy during day but not so much anymore. I am up to 75 mg and because I titrated(upped dose) slowly I don't have any more side effects. I feel next time I see doc I can start upping more quickly. I have not had any hair problems (keeping fingers crossed!)
>
> I am still finding I have good days and bad days mood wise but I think I am feeling more stable and happier moments are definately peaking through a lot!. My appetite has decreased but that could also be because I am on the Atkins diet.I started Atkins and Topomax at the same time, 8 weeks ago and I have lost 30 lbs.I am not complaining ;o)I haven't felt this good in a long time......
> Maggie
>
hi maggie I just started WW again with the Topamax even at 1/2 of 25mg I seem to be able to control my appitite better(maybe in my head but ill take it either way) at what dosage did you begin to lose? This drug is funny it seems that people either love it or hate it.
Posted by mags on December 16, 2003, at 10:38:39
In reply to Re: slow tritration, posted by jhlsgirl on December 16, 2003, at 8:29:21
I am not really sure because I started Atkins diet same time....but I definately don't have much of an appetite and I am at 75 mg...but most people say Atkins does that to them too...from what I hear most say you need to be at 200 mg of Topamax before the weight loss really kicks in...but then we do all differ....for me the big thing is I no longer crave the carby junk food.
Posted by jtevers on December 16, 2003, at 16:56:07
In reply to Re: slow tritration, posted by mags on December 16, 2003, at 10:38:39
> I am not really sure because I started Atkins diet same time....but I definately don't have much of an appetite and I am at 75 mg...but most people say Atkins does that to them too...from what I hear most say you need to be at 200 mg of Topamax before the weight loss really kicks in...but then we do all differ....for me the big thing is I no longer crave the carby junk food.
maggie and friends,
please remember to be careful while remaining on atkins diet (a hi protien diet) while taking topamax ... i have heard, sensibly, that this increases the risk of developing kidney stones...
i am doing the same routine (the diet and topamax) and hope, while i am only at 50mg., that once i do reach 100-200 mg. the weight i have gained due to antipsychotic treatment (i take a moderate dose of seroquel for bipolar) will reduce.
it seems that several of us are in the same boat...now on minimal doses looking forward to the weight-loss effect seen in higher doses, but weary of the dreadful effects that may come with it... hair loss ( i've heard to take biotin, zinc and selenium at moderate doses ), tingling (i've heard to take an "anti-stress" complex-B vitamin), eye and vision trouble that sound incombatable but may reduce with slow titration as may the cognitive "numbing".
i wonder whether the success of topamax at reducing my weight may be compromised because i am forced to remain on my original med. regimen (with a moderate propensity to cause weight gain) or whether the topamax may counter this propensity and NORMALIZE my weight? has anyone tried topa. while remaining on med., or have many with weight loss success also dropped the weight-offensive medication (ie. zyprexa, lithium, depakote, etc.)?
Posted by mags on December 16, 2003, at 19:45:25
In reply to Re: atkins, topamax ... stones and wt. loss?, posted by jtevers on December 16, 2003, at 16:56:07
I would really hope that the Topo would perhaps balance out those other bad weight gaining meds lithium, depo etc....I am lucky as I am not on them right now but still have their weight they gave me!!And I have lost weight....
Thanks for info re kidney stones..I am aware of Atkins and Topo propensity for it and am very careful to drink LOTS of water.
I also have been lucky with no hair loss but my multi vitamin has biotinin it and I do take a B stress complex as well..the tingling has stopped but was bad for awhile.....for me the S/E's have been worth it for me..I am really hoping Topo is the med for me.....I hope it can be for others...
Maggie
Posted by LBcats on December 16, 2003, at 20:44:03
In reply to Re: atkins, topamax ... stones and wt. loss?, posted by jtevers on December 16, 2003, at 16:56:07
I tried both topomax and depakote together and still lost weight. However, when I got to a high dose of topomax 300 mg and 1000 mg of depakote, the cognitive side effects were really bad. Even after reducing the depakote to 500mg a day, the cognitive side effects were bad. I found that depakote just worked better for me. Topomax really screwed up my affect. I had a very flat affect and had trouble expressing my thoughts and feelings. The weight issue however was great. I just didn't have a taste for food. Mostly I wanted fruits and yogurt. Anything else sounded horrible.
LB
Posted by cyndie on December 17, 2003, at 14:24:24
In reply to Topamax Experiences?, posted by Kingfish on January 4, 2001, at 7:29:48
VOICE CHANGES???? My husband says my voice sounds "different", but he doesn't elaborate...on a different thread I asked if anyone had any experience with this, and now it's happening to me! Insights???? Thanks, Cyndie
Posted by headachequeen on December 17, 2003, at 14:32:09
In reply to Re: Topamax Experiences?, posted by cyndie on December 17, 2003, at 14:24:24
> VOICE CHANGES???? My husband says my voice sounds "different", but he doesn't elaborate...on a different thread I asked if anyone had any experience with this, and now it's happening to me! Insights???? Thanks, Cyndie
Hmmm I have had a change in my voice over the past few years... during a single fibre something or other test the neurologist performing the torture asked if that were my normal speaking voice and when I said no, she told me that was a symptom... of what she did not say... I have asked my doctor to ask her of what it is a symptom but have not yet heard...
is this Topomax-related?
Is it neurologically-related?
it would be interesting to know if only because not knowing is consuming me with curiosity...have you any idea what is causing the changes in your voice patterns? and what are the changes, for that matter?
kat
Posted by jtevers on December 17, 2003, at 14:43:10
In reply to Re: atkins, topamax ... stones and wt. loss?, posted by LBcats on December 16, 2003, at 20:44:03
> I tried both topomax and depakote together and still lost weight. However, when I got to a high dose of topomax 300 mg and 1000 mg of depakote, the cognitive side effects were really bad. Even after reducing the depakote to 500mg a day, the cognitive side effects were bad. I found that depakote just worked better for me. Topomax really screwed up my affect. I had a very flat affect and had trouble expressing my thoughts and feelings. The weight issue however was great. I just didn't have a taste for food. Mostly I wanted fruits and yogurt. Anything else sounded horrible.
> LBLB,
do i understand correctly?
do you attribute the cognitive side-effects to the topamax, the depakote, or both?
had you introduced topamax to your med. regimen for mood stabilization, seizure control, or weight issues?and do you believe the weight loss you experienced was simply due to appetite suppression (being overall less hungry) or some greater effect topamax has on the body system(s)?
do people generally gain weight while on depakote? and do you believe topa. kept you from gaining that weight? have you, since dropping topa. from your med. regimen gained any weight back?
thanx for your insight...you have been to a place where i am going and your awareness is enlightening. is there anything i can help you with?
jtevers
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