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Dr. Bob is Robert Hsiung, MD,
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Posted by headachequeen on May 23, 2004, at 16:13:54
In reply to Re: low dose topamax » headachequeen, posted by theo on May 23, 2004, at 7:43:22
>
> So you mainly take Topamax for what it is prescribed for, seizures, then off label for migraines. I'm mainly taking it for anxiety and occasional migraines. My main hope of course is it's effect on calming my rapid fire anxiety. Has it helped calm you in respect to use for anxiety? It doesn't sound like anxiety is an issue with you but could you see Topamax being effective for anxiety?
>
> I know everyone reacts different but am hoping to receive some positive results from Topamax after total disappointment from Neurontin. The main reason I've heard people never feel results from Topamax is because they get impatient and bail out to soon before the med gets a chance to work. So far I've not had any side effects at all, maybe a little agitation but just the first few days.
>
> Did you experience initial side effects every two weeks when you increased dose?I think that you are right about the early bail-out reactions... people seem to quit withing days of starting the protocol and often because they hear of side effect potentials... great reason to stop of course... well, the mailman's aunt's cousin's hairstylist knows someone who said that .... so I am quitting...
and others increase the dosage too fast and then quit because of side effects....I did have early side effects... but it was my own fault...
the neurologist gave me a sheet of instructions which I read and then forgot to read again...
the directions were explicit: I was to start the 25 mg in the evenings and not to increase the dosage for at least two weeks... still in the evenings...
for some reason I started taking the stuff in the mornings... and oh the nausea and dizziness that came with starting it in the morning...
I went back and read the information he had given me because I wanted to know what else was said about possible side effects and there it was in bold-faced type: evenings... and it was to be taken with food...
so the brain did a little somersault and I switched to evenings and I take it with yoghurt and I have not had a problem that way...
I did have a constant thirst but simply added more water to my daily plan of doing things and that seems to help...
for that matter the doctor that I can never remember but he deals with vocal cords tells me to drink more anyway... so he is happy too... although he says no ice and he has banned soft drinks from my life, so if the soft drinks have changed in appeal I don't really know although I must admit that one I had recently tasted odd... found out the other day that the restaurant I was at serves only diet pop though.... yech... no flavour there anyway and they always have an aftertaste so I cannot blame the topomax... LOLthere was a brief cognitive confusion time too but it was for only a week or two...
I don't know if the topomax has helped with anxiety or not... for a while I was doing things more slowly -- no longer going in over drive so to speak; of late I have hit that speeding up -- speech, walking, everything again... maybe the topomax will help there... who knows...
it has certainly helped with the migraines and with weight loss... and those are two bonuses indeed...
I know that when the neurologist said that it had a side effect, I braced myself for all the horrors that come with tegretol and he mentioned only the weight loss (he had already mentioned the migraine control) and I had to think for about five seconds before I agreed to try it <g>
kat
that is a great help indeed...
Posted by theo on May 23, 2004, at 16:55:32
In reply to Re: low dose topamax » theo, posted by headachequeen on May 23, 2004, at 16:13:54
You mentioned one side effect I don't need, weight loss. Is weight loss because of appetite suppression or does it actually cause you to metabolize things faster? My doc said it's due to suppression and at low doses I shouldn't worry, and at 25mg my appetite has not decreased at all. When did you notice a weight loss effect with Topamax, at what dose?
Posted by imlaurie on May 23, 2004, at 21:08:24
In reply to Re: low dose topamax » headachequeen, posted by theo on May 23, 2004, at 16:55:32
I was taking 100 mgs daily and I soon cut it down to 50 daily. I lost a lot of weight in a short period of time, 50 lbs. in a couple of months.I think it is part due a loss of appetite and part due to the medication itself somehow causing weight loss.
Posted by headachequeen on May 23, 2004, at 21:51:43
In reply to Re: low dose topamax » headachequeen, posted by theo on May 23, 2004, at 16:55:32
> You mentioned one side effect I don't need, weight loss. Is weight loss because of appetite suppression or does it actually cause you to metabolize things faster? My doc said it's due to suppression and at low doses I shouldn't worry, and at 25mg my appetite has not decreased at all. When did you notice a weight loss effect with Topamax, at what dose?
I began to notice a the effect at 25 mg
lsot three pounds the first week and then moderate amounts over a period of time...the weight loss comes from appetite suppression and not from a change of metabolism ... I still have the same exercise and activity level I had before... still do the same things and still have the same energy level...
still do agility and tracking and obedience
still walk a lot
and now that my eye has been opened LOL I am able to use my cameras again (the right eye is my dominant eye for photography and target shooting another hobby of mine) and I plan to spend the next few months scrambling around photographing anything that catches my eye no pun intended, good or otherwise...
I have missed being able to use my cameras believe me...
the weight loss has occurred over a period of time, a long period of time and is I think continuing, although the past day or so is no indication of that as today I have an attack of the munchies...
I do not know what I want to eat, I just feel like eating...
so far I have not identified the subject of that need to eat but when I do, world look out !!!this does happen to me on occasion...
however, I still have no wish to drink pop or juice-type drinks...the weight loss was not a sudden and horrendously obvious thing...
but it has been a good thing from my point of view... I just don't want to return to the under 100 pound state...
kat
Posted by theo on May 24, 2004, at 11:34:01
In reply to Re: low dose topamax » theo, posted by headachequeen on May 23, 2004, at 21:51:43
Posted by theo on May 24, 2004, at 15:38:07
In reply to Re: low dose topamax » theo, posted by headachequeen on May 23, 2004, at 21:51:43
Do you take an SSRI or other antideppressant with your Topamax?
Posted by imlaurie on May 24, 2004, at 19:05:03
In reply to One more thing » headachequeen, posted by theo on May 24, 2004, at 15:38:07
I do, I take 20 mg. Lexapro
Laurie
Posted by shadows721 on May 24, 2004, at 22:07:16
In reply to Re: One more thing, posted by imlaurie on May 24, 2004, at 19:05:03
I had horrible headaches before my period and I noticed this month I didn't have that. It was wonderful. However, my period is longer and heavier. Anyone else experience this?
Posted by shadows721 on May 24, 2004, at 22:08:58
In reply to One more thing » headachequeen, posted by theo on May 24, 2004, at 15:38:07
Hi Theo,
I take 10 mg of Lexapro, 25 mg of seroquel, and 60 mg of buspar with topamax.
Posted by Kazzy on May 30, 2004, at 20:59:18
In reply to Re: female question and topamax, posted by shadows721 on May 24, 2004, at 22:07:16
Hi, I was just put on Topamax 1 week ago at 25mg a day for migranes. I am supposed to up to 50 mg a day today. What are all of the people here taking Topamax here for? I also take 20 mg Celexa a day for Anxiety attacks..with this help with that too!! That would be wonderful...
I have noticed amazing weight loss the first week...5 lbs..I needed it. But other than that no side effects. Will more side effects come?? I am interested in hearing anything!
Thanks
Posted by headachequeen on May 31, 2004, at 15:29:10
In reply to Re: female question and topamax, posted by Kazzy on May 30, 2004, at 20:59:18
> Hi, I was just put on Topamax 1 week ago at 25mg a day for migranes. I am supposed to up to 50 mg a day today. What are all of the people here taking Topamax here for? I also take 20 mg Celexa a day for Anxiety attacks..with this help with that too!! That would be wonderful...
> I have noticed amazing weight loss the first week...5 lbs..I needed it. But other than that no side effects. Will more side effects come?? I am interested in hearing anything!
> ThanksPeople here are taking Topomax for as many reasons as Topomax can be prescribed...
<g>
first, increasing the dosage after only a week will cause side effects to occur with greater intensity and frequency... many of us who have stayed the distance, so to speak, with topomax, have discovered that if we take it more slowly and follow the more standard dosage increments of *at least* two weeks between increases there is less risk of upsetting side effects...that said, I am taking Topomax as a back-up med for epileptic seizures because it also helps deal with migraine... have not had a migraine since I started taking Topomax and that is such a blessing... not a migraine since early January of 2003...
when he decided to prescribe Topomax instead of increasing Tegretol, my neurologist warned me that there was a weight loss side effect in some people... well I had to think for all of five seconds before agreeing to risk that...
in the first week I lost three pounds and found that really reassuring...
since then I have lost a significant amount of weight and notice today that the rings I had re-sized a few weeks ago are again significantly loose and turning on my fingers...
and clothes that fit a couple of weeks ago are now loose and some are actually sloppy...
I happen to like the weight loss side effect as other meds I have been put on over the past while have added to the weight gain that depression and to some degree a lack of self control have contributed to...
so now I am beginning to feel like a human being again...
although if one more person asks me if I don't think it is time to stop taking the medication I think I may scream or worse...
the Topomax not only helps stop the migraines.. helps??? it stops them in their tracks... and somehow curbs my appetite, it also boosts the Tegretol so that I have fewer break-through seizures... and that is really a bonus...
so why would I want to stop taking it???
so I can gain weight??? or so that I can have seizures weekly or nightly or sometimes two or three times a night? and maybe have a couple of migraines a week to make my life complete?
if the weight loss becomes a real problem then I will deal with it by eating foods that help me maintain a reasonable weight...for now I am happy being the size and weight that are healthier for me...
my blood sugars are those of a normal person... and the list goes on...
so why rock the boat???
I could not achieve these things on my own...
kat
Posted by Kazzy on May 31, 2004, at 18:17:10
In reply to Re: female question and topamax » Kazzy, posted by headachequeen on May 31, 2004, at 15:29:10
Thanks so much for the feedback!! How much weight have you lost so far?? How long have you been on it? I will stay at the 25 for one more week then. The migranes went away for the first week but they are back now. If I lose too much weight I will just enjoy eating for the fun of eating and not worrying...that would be nice for a change!!
Karen
Posted by headachequeen on May 31, 2004, at 21:28:43
In reply to thanks, posted by Kazzy on May 31, 2004, at 18:17:10
> Thanks so much for the feedback!! How much weight have you lost so far?? How long have you been on it? I will stay at the 25 for one more week then. The migranes went away for the first week but they are back now. If I lose too much weight I will just enjoy eating for the fun of eating and not worrying...that would be nice for a change!!
> Karen
I have been on Topomax since early January of 2003 and have lost over 60 pounds... when I weighed myself this morning the scale said 140 and at one time it would have read 209 according to the one in the doctor's office...
funny but I can remember when my husband would tell people that he married me out of pity.. someone had to take me home and feed me <g>...
kat
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!
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