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Dr. Bob is Robert Hsiung, MD,
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Posted by helenag on May 31, 2004, at 23:25:20
In reply to Re: thanks » Kazzy, posted by headachequeen on May 31, 2004, at 21:28:43
Am glad to see this post. Have been on Topamax for over a year, 300mg final dose. Have lost weight. Now I have other questions. At first, the side effects did not bother me much, but now I notice they are stronger, especially the cognitive effects. I search for words more often, my eyes get dry a lot, and my blood glucose tested 56 last week.
Am attributing this to the weight loss? Less of me and more of the drug (too high of a dose?) I have stopped drinking (maybe no interference?)
Do people regain the weight they lost once they go off Topamax? I don't want to have three closets of clothes in varying sizes due to drugs.
Would appreciate any feedback.
PS: Am on the med for mood stabiliZation and it has worked for me very well.
Posted by headachequeen on June 1, 2004, at 14:50:10
In reply to Re: Topamax, » headachequeen, posted by helenag on May 31, 2004, at 23:25:20
> Am glad to see this post. Have been on Topamax for over a year, 300mg final dose. Have lost weight. Now I have other questions. At first, the side effects did not bother me much, but now I notice they are stronger, especially the cognitive effects. I search for words more often, my eyes get dry a lot, and my blood glucose tested 56 last week.
>
> Am attributing this to the weight loss? Less of me and more of the drug (too high of a dose?) I have stopped drinking (maybe no interference?)
>
> Do people regain the weight they lost once they go off Topamax? I don't want to have three closets of clothes in varying sizes due to drugs.
>
> Would appreciate any feedback.
>
> PS: Am on the med for mood stabiliZation and it has worked for me very well.
I don't know the system for blood glucose levels in the US... here we have a different measurement system... for a while mine has been hovering in the area of 4.3 but is up to 5.1 .... a big change from the days of 17.1 !!!! when I was ecstatic to achieve ranges of 11 and then sevens...
on occasion I find myself in the threes and begin to worry... as I have had a tendency in the past to wander into the hypoglyceamic territory... can't seem to make up my mind whether I want to try that or diabetes... <s>
must admit that diabetes with its needles and insulin does not really appeal so the weight loss has definite appeal to me...as for the continued weight loss, my sister-in-law discontinued topomax three or four years ago and is still on her regimen of one meal a day and still holding the same weight. She never was overweight admittedly, was taking it to control tremors or seizures caused by a broken spine, but the results of the appetite suppression have continued.
In my own case the continued use is not an option. I do not want the migraines to start again and I do not want the break-through seizures to increase. My neurologist does not seem to think that he wants to change the tegretol to any of the other meds that control seizures, so we are at a stand-off...
and I do not want to consider re-gaining the weight either as that would introduce depression... and that I do not need.
I am now on 300 mg twice daily... and have no cognitive issues and at this point no hair loss issues... notice that I am knocking on wood <g> ...
when there is a cognitive problem it usually lasts for only a short time... then things return to normal
For the dry eyes which is not uncommon with a great number of medications I might add, try
either Genteal Gel or Refresh Endura Tears...
they are the only ones I know that do not have artificial preservatives in them, so do no harm to the eye... can you tell I have spen a lot of time with opthalmologists and opth. surgeons and the like of late LOL???
kat
Posted by kka on June 1, 2004, at 16:11:05
In reply to Re: Topamax, » helenag, posted by headachequeen on June 1, 2004, at 14:50:10
Kat,
Glad to hear you are doing well. In your post you mentioned no hair loss "at this point" I started Topamax in Oct. at 25 mgs and then by March I was up to 175 mgs twice a day. in March I started having severe hair loss so I stopped taking topamax, then tried again in late April even at the low dose of 50mgs the hair loss started again. Did this happen to you and did the hair loss just stop?? I was taking vitamins, biotin, vitamins - E and B vitamins folic acid, seleninum, zinc, and a prenatal pill. Should I have just stuck it out, would the hair loss eventually stop? I am really wanting to give it another try but cannot lose the hair again. I was taking for migraines and weight loss and had much success without ANY of the side effects other than hair loss...any advice on trying the topamax again and avoiding hair loss. Any imput would be great! Thanks KKA> > Am glad to see this post. Have been on Topamax for over a year, 300mg final dose. Have lost weight. Now I have other questions. At first, the side effects did not bother me much, but now I notice they are stronger, especially the cognitive effects. I search for words more often, my eyes get dry a lot, and my blood glucose tested 56 last week.
> >
> > Am attributing this to the weight loss? Less of me and more of the drug (too high of a dose?) I have stopped drinking (maybe no interference?)
> >
> > Do people regain the weight they lost once they go off Topamax? I don't want to have three closets of clothes in varying sizes due to drugs.
> >
> > Would appreciate any feedback.
> >
> > PS: Am on the med for mood stabiliZation and it has worked for me very well.
>
>
> I don't know the system for blood glucose levels in the US... here we have a different measurement system... for a while mine has been hovering in the area of 4.3 but is up to 5.1 .... a big change from the days of 17.1 !!!! when I was ecstatic to achieve ranges of 11 and then sevens...
> on occasion I find myself in the threes and begin to worry... as I have had a tendency in the past to wander into the hypoglyceamic territory... can't seem to make up my mind whether I want to try that or diabetes... <s>
> must admit that diabetes with its needles and insulin does not really appeal so the weight loss has definite appeal to me...
>
> as for the continued weight loss, my sister-in-law discontinued topomax three or four years ago and is still on her regimen of one meal a day and still holding the same weight. She never was overweight admittedly, was taking it to control tremors or seizures caused by a broken spine, but the results of the appetite suppression have continued.
> In my own case the continued use is not an option. I do not want the migraines to start again and I do not want the break-through seizures to increase. My neurologist does not seem to think that he wants to change the tegretol to any of the other meds that control seizures, so we are at a stand-off...
> and I do not want to consider re-gaining the weight either as that would introduce depression... and that I do not need.
> I am now on 300 mg twice daily... and have no cognitive issues and at this point no hair loss issues... notice that I am knocking on wood <g> ...
> when there is a cognitive problem it usually lasts for only a short time... then things return to normal
> For the dry eyes which is not uncommon with a great number of medications I might add, try
> either Genteal Gel or Refresh Endura Tears...
> they are the only ones I know that do not have artificial preservatives in them, so do no harm to the eye... can you tell I have spen a lot of time with opthalmologists and opth. surgeons and the like of late LOL???
> kat
>
Posted by headachequeen on June 1, 2004, at 16:26:08
In reply to Re: Topamax, » headachequeen, posted by kka on June 1, 2004, at 16:11:05
> Kat,
> Glad to hear you are doing well. In your post you mentioned no hair loss "at this point" I started Topamax in Oct. at 25 mgs and then by March I was up to 175 mgs twice a day. in March I started having severe hair loss so I stopped taking topamax, then tried again in late April even at the low dose of 50mgs the hair loss started again. Did this happen to you and did the hair loss just stop?? I was taking vitamins, biotin, vitamins - E and B vitamins folic acid, seleninum, zinc, and a prenatal pill. Should I have just stuck it out, would the hair loss eventually stop? I am really wanting to give it another try but cannot lose the hair again. I was taking for migraines and weight loss and had much success without ANY of the side effects other than hair loss...any advice on trying the topamax again and avoiding hair loss. Any imput would be great! Thanks KKA
>I lost hair with tegretol... scads of it... and panicked but could not... dared not stop taking it...
when murph mentioned the biotin I felt like a fool as we give it to our Chows for hair problems along with megadoses of vitamin C... and 400 to 800 IU of vitamin E with zinc ...
and of course virgin coldpressed olive oil... and a few other vitamins and mineral supplements to ensure they get the right stuff for their skin and hair, but especially the C... so why did I not think of it for myself??????
where was the logic that the human was supposed to have to go with the opposable thumb????I have not had any more hair loss than was the norm since...
I do find that my hair is dry at times but since I stopped using the wax in it that has changed...I really cannot claim any side effects other than the excessive thirst... but then I was always running around playing camel crossing desert even before the topomax....
LOL
kat
Posted by redscarlet on June 1, 2004, at 16:37:01
In reply to Re: Topamax, » headachequeen, posted by kka on June 1, 2004, at 16:11:05
I was on Topamax for close to two years and I had VERY, VERY bad hair loss during the whole time I took it. I was like you and took mega amounts of vitamins but that didn't help. I'm now on Zonegran and that is working great and NO hair loss. My hair is growing back in and I give it a little help by staying on the vitamins. The hair loss was the only bad side effect that I had from the Topamax.
HTH
Posted by kka on June 1, 2004, at 19:42:48
In reply to Re: Topamax, » kka, posted by headachequeen on June 1, 2004, at 16:26:08
Okay, it looks like I have missed the mega doses of the Vitamin c! I am and was using a multi-vitamin and the pre-natal ones but maybe I'll try adding the mega dose of vitamin C...I really want to get back on it. Thanks so much for your help!!
> > Kat,
> > Glad to hear you are doing well. In your post you mentioned no hair loss "at this point" I started Topamax in Oct. at 25 mgs and then by March I was up to 175 mgs twice a day. in March I started having severe hair loss so I stopped taking topamax, then tried again in late April even at the low dose of 50mgs the hair loss started again. Did this happen to you and did the hair loss just stop?? I was taking vitamins, biotin, vitamins - E and B vitamins folic acid, seleninum, zinc, and a prenatal pill. Should I have just stuck it out, would the hair loss eventually stop? I am really wanting to give it another try but cannot lose the hair again. I was taking for migraines and weight loss and had much success without ANY of the side effects other than hair loss...any advice on trying the topamax again and avoiding hair loss. Any imput would be great! Thanks KKA
> >
>
> I lost hair with tegretol... scads of it... and panicked but could not... dared not stop taking it...
> when murph mentioned the biotin I felt like a fool as we give it to our Chows for hair problems along with megadoses of vitamin C... and 400 to 800 IU of vitamin E with zinc ...
> and of course virgin coldpressed olive oil... and a few other vitamins and mineral supplements to ensure they get the right stuff for their skin and hair, but especially the C... so why did I not think of it for myself??????
> where was the logic that the human was supposed to have to go with the opposable thumb????
>
> I have not had any more hair loss than was the norm since...
> I do find that my hair is dry at times but since I stopped using the wax in it that has changed...
>
> I really cannot claim any side effects other than the excessive thirst... but then I was always running around playing camel crossing desert even before the topomax....
> LOL
> kat
Posted by kka on June 1, 2004, at 19:44:38
In reply to Re: Topamax, » kka, posted by redscarlet on June 1, 2004, at 16:37:01
>
Thanks so much for your post! Did you lose any weight with the Zonegram???
KKAI was on Topamax for close to two years and I had VERY, VERY bad hair loss during the whole time I took it. I was like you and took mega amounts of vitamins but that didn't help. I'm now on Zonegran and that is working great and NO hair loss. My hair is growing back in and I give it a little help by staying on the vitamins. The hair loss was the only bad side effect that I had from the Topamax.
> HTH
>
Posted by redscarlet on June 1, 2004, at 20:12:15
In reply to Re: Topamax,, posted by kka on June 1, 2004, at 19:44:38
I haven't had any weight loss on the Zonegran but I'm 5'6" and weigh 105 so I really didn't have any weight to loss. I know that people do loss weight with the Zonegran much like the Topamax.
HTH... :-)
Posted by headachequeen on June 1, 2004, at 22:07:50
In reply to Re: Topamax, » headachequeen, posted by kka on June 1, 2004, at 19:42:48
> Okay, it looks like I have missed the mega doses of the Vitamin c! I am and was using a multi-vitamin and the pre-natal ones but maybe I'll try adding the mega dose of vitamin C...I really want to get back on it. Thanks so much for your help!!
the megadose means just that... as in LOTS and don't forget the E with zinc and the biotin... they all help to encourage the extra healthy scalp and hair...
but I am always so embarrassed when I think how much I work with my dogs to encourage healthy skin and coat... and never thought of any of it for myself...
of course, they also eat raw meaty bones and raw grated fruit and vegetables...not sure how far I want to go with this health stuff LOL
kat
Posted by Dr. Bob on June 1, 2004, at 23:13:14
In reply to Re: Topamax, » kka, posted by headachequeen on June 1, 2004, at 22:07:50
> the megadose means just that...
Sorry to interrupt, but I'd like to redirect follow-ups regarding vitamins to Psycho-Babble Alternative. Here's a link:
http://www.dr-bob.org/babble/alter/20040418/msgs/352889.html
Thanks,
Bob
Posted by sooshi on June 2, 2004, at 10:05:14
In reply to Re: Topamax,, posted by kka on June 1, 2004, at 19:44:38
I, too, took megadoses of vitamins for hair loss, which did no good at all....the only thing that worked was to stop the drug (which was Depakote for me).
I quit Topa because of the boatload of side effects when I found out about Zonegran, which I now take. No side effects at all, and am still losing weight...I'm actually losing it faster, because I feel so much BETTER that I can actually exercise!
Posted by kka on June 2, 2004, at 10:21:31
In reply to Re: Topamax, » kka, posted by sooshi on June 2, 2004, at 10:05:14
>
Thanks so much!! I am going to see if I can get on Zonegran...sounds great! I am very excited!
I, too, took megadoses of vitamins for hair loss, which did no good at all....the only thing that worked was to stop the drug (which was Depakote for me).
>
> I quit Topa because of the boatload of side effects when I found out about Zonegran, which I now take. No side effects at all, and am still losing weight...I'm actually losing it faster, because I feel so much BETTER that I can actually exercise!
Posted by sooshi on June 2, 2004, at 20:53:06
In reply to Re: Topamax, » sooshi, posted by kka on June 2, 2004, at 10:21:31
That's great! Good luck to you, and I hope you have as much success with Z as I have!
Posted by dazed on June 3, 2004, at 16:16:08
In reply to Re: Topamax, » kka, posted by redscarlet on June 1, 2004, at 16:37:01
Redscarlet--How many milligrams of Zonegran are you on now? (and how much topomax were you on?)
> I was on Topamax for close to two years and I had VERY, VERY bad hair loss during the whole time I took it. I was like you and took mega amounts of vitamins but that didn't help. I'm now on Zonegran and that is working great and NO hair loss. My hair is growing back in and I give it a little help by staying on the vitamins. The hair loss was the only bad side effect that I had from the Topamax.
> HTH
>
Posted by redscarlet on June 3, 2004, at 17:17:07
In reply to Re: Topamax,, posted by dazed on June 3, 2004, at 16:16:08
I'm on 200mg's of the Zonegran and I was on 200mg's of the Topamax.
HTH
Posted by imlaurie on June 3, 2004, at 19:28:46
In reply to Re: Topamax,, posted by dazed on June 3, 2004, at 16:16:08
> Redscarlet--How many milligrams of Zonegran are you on now? (and how much topomax were you on?)
>
> > I was on Topamax for close to two years and I had VERY, VERY bad hair loss during the whole time I took it. I was like you and took mega amounts of vitamins but that didn't help. I'm now on Zonegran and that is working great and NO hair loss. My hair is growing back in and I give it a little help by staying on the vitamins. The hair loss was the only bad side effect that I had from the Topamax.
> > HTH
> >
> Hair loss was my only side effect also. At least that was the only one I was aware of :) I quit taking it a couple of weeks ago and am now only on the Zonegran, 100 mgs. daily. I have already gained 5 pounds (yuck) but on the flip side my hair loss has stopped, just like that!! I guess you just can't have it all.
Has anyone on Topamax had trouble with excessive dry skin? I was so busy worrying about my hair that I wasn't paying attention to my skin. Now I notice that my feet are not very nice to look at anymore, cracked heels, etc. Also just dry skin in general.
By the way I notice no side effects with the Zonegran at all and I have been on it for about a month now.
>
Posted by kka on June 3, 2004, at 22:30:45
In reply to Re: Topamax,, posted by imlaurie on June 3, 2004, at 19:28:46
imlaurie,
Did you have to tirate up on Zonegram just like Topamax...will you be increasing from what you are on now...maybe then you will lose the weight you put on from going off Topamax...
> > Redscarlet--How many milligrams of Zonegran are you on now? (and how much topomax were you on?)
> >
> > > I was on Topamax for close to two years and I had VERY, VERY bad hair loss during the whole time I took it. I was like you and took mega amounts of vitamins but that didn't help. I'm now on Zonegran and that is working great and NO hair loss. My hair is growing back in and I give it a little help by staying on the vitamins. The hair loss was the only bad side effect that I had from the Topamax.
> > > HTH
> > >
> > Hair loss was my only side effect also. At least that was the only one I was aware of :) I quit taking it a couple of weeks ago and am now only on the Zonegran, 100 mgs. daily. I have already gained 5 pounds (yuck) but on the flip side my hair loss has stopped, just like that!! I guess you just can't have it all.
> Has anyone on Topamax had trouble with excessive dry skin? I was so busy worrying about my hair that I wasn't paying attention to my skin. Now I notice that my feet are not very nice to look at anymore, cracked heels, etc. Also just dry skin in general.
> By the way I notice no side effects with the Zonegran at all and I have been on it for about a month now.
> >
>
>
Posted by stacylouisabeus on June 4, 2004, at 6:35:38
In reply to Re: thanks » Kazzy, posted by headachequeen on May 31, 2004, at 21:28:43
omg I cannot believe you could stay married to a man that would verbally abuse you like that. That does more damage than than anything physical ever could. I would rather be beat physically than be ever spoken ill to. Neither is appropriate, but I feel I can protect myself better physically.
Posted by imlaurie on June 4, 2004, at 9:07:00
In reply to Re: Topamax, » imlaurie, posted by kka on June 3, 2004, at 22:30:45
No, this is the dose they started me on. They also had me on Topamax too when they started the Zonegran about a month ago. I quit the Topamax myself. When I go for my next appt. they may increase it when I let them know I am no longer taking Topamax.
Laurie
"Life May Not Be The Party We Hoped For But While We Are Here We Might As Well Dance" :)
Posted by headachequeen on June 6, 2004, at 16:34:16
In reply to Re: thanks » headachequeen, posted by stacylouisabeus on June 4, 2004, at 6:35:38
> omg I cannot believe you could stay married to a man that would verbally abuse you like that. That does more damage than than anything physical ever could. I would rather be beat physically than be ever spoken ill to. Neither is appropriate, but I feel I can protect myself better physically.
LOL he was not abusing me verbally at all...
he was making light of a situation that bothered him deeply...
rather than say that when he met me I was drastically underweight and had a frightfully low self esteem despite the fact or facts that I am and was then an extremely intelligent and talented young woman, not to overlook the attractive part, with a great deal to contribute, and a family of wealth and position that seemed to overlook the obvious and refuse to do anything to help.. he would joke about his reasons for becoming involved with me...
we are of Celtic background; those things that mean the most to us, those things that touch us most deeply we do not talk about openly other than with a joke... we do not wear our hearts on our sleeves so to speak...
I understant when says this...
what I do not understand is why he fed me so well that I gained all that weight!!!!
He is an incredible cook... sigh
and I have suffered the results of his talents in the kitchen...
cornsih game hens with shrimp and wild rice stuffing are not too bad but the majority of the dishes he comes up with are massively rich and fattening and they did not help when I began to put on weight...
now he does things with salmon and chicken that are wonderful...salmon with almonds and apricots that or walnuts and pears... and chicken breasts with pears.... it makes being thin something to yearn for <G>
he has been my greatest fan and my firmest critic over the years... never allowing me to put forth mediocre work but always standing there in support of my projects... but abusive? no not that...
I do thank you for caring though...
one of our shared projects has been to work with abused children and with abused parents; a fastening work and with abused women...
unreal...
kat
Posted by rockette on June 6, 2004, at 21:11:16
In reply to Re: Topamax, » kka, posted by headachequeen on June 1, 2004, at 22:07:50
And just when I thought I had the Topamax dosage set (50mg am, 50 pm) keeping headaches at a minimum and hairloss stable...Doc adds Zantac to the mix for lousy GERD stomach problem (already taking Protonix) and whammo---more hair down the drain! Just took my shower and sad to say, handfuls came out. Now I'm depressed (isn't that what the Wellbrutrin is for?--actually I've heard that adds to hairloss, too) I'm really getting tired of the cures being worse than the disease..... Too many pills!! I think it may be time to stop them all and start all over again. (Of course after the first 3 day migraine I'll be begging for mercy!!)
Sorry for the "whining"--can deal with the stomach acting up again but the hairloss deal sends me over the top!!!
Posted by shadows721 on June 6, 2004, at 21:26:25
In reply to Re: Topamax, Zantac and hair down the drain!!, posted by rockette on June 6, 2004, at 21:11:16
Can you reduce the med a bit and still get the benefit? I am hoping there will be a dosage that will give you the benefit of having no migraine without the hair loss. I feel this is going to be a delicate fine tuning process.
Posted by bruce_w6 on June 6, 2004, at 21:28:14
In reply to Re: Topamax, Zantac and hair down the drain!!, posted by rockette on June 6, 2004, at 21:11:16
I am on Lamictal (250 mg) & Lithium Ototatate (6x120). Bipolar II. I also take Gemifribazil & Niaspan for cholesterol ad triglycerides. My weight has crept up unmercifully fast. I started Topomax and went up at 25 mg a week to my currant dose of 150 mg. No side effects except for some forgetfulness. No weight loss yet. Pleases respond. When does the weight loss start? What can I do? I am really scared.
Posted by headachequeen on June 7, 2004, at 16:23:59
In reply to Re: Topamax, Zantac and hair down the drain!!, posted by rockette on June 6, 2004, at 21:11:16
Posted by kka on June 23, 2004, at 21:30:33
In reply to Re: Topamax to Zonegran, posted by TexasChic on November 19, 2003, at 11:07:18
>Texas Chic - How are you? Are you still on Zonegran for binge eating? How is it working? What dose are you on? I just started two weeks ago, Topamax made me lose too much hair. If you have time and are still on the boards I would love to hear how you (or anyone) is doing on this med.
Thans KKA
My doc switched me to Zonegran (for my binge eating) because of the problems I was having with the Topamax – mainly the interference with birth control, cognitive problems, and tiredness. From what I can tell, its about the same thing as Topamax except its not supposed to have those particular side effects. I'll let yall know how it works out
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