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Dr. Bob is Robert Hsiung, MD,
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Posted by headachequeen on January 16, 2004, at 10:39:51
In reply to Re: Starting on Topomax for Migraines. Advice anyone? » inky, posted by migraine sufferer on January 14, 2004, at 0:38:51
> Hi.
> I realize this is a 2004 response to a 2001 question but....I was searching under "topomax" and found this site. a lot of knowledgeable-been there done-that people. I too was recently prescribed topomax for migraine prevention. Even at the low dose I'm scared to take a third dose. --Scared to death to close my eyes--and every heartbeat feels like my heart is going to jump out of my chest. Should I keep taking this?
> I am on no other prescription drugs right now.
> Thanks for any advice on this!
>There are so many easy ways to combat the side effects...
dehydration? drink lots of water... one is supposed to anyway to maintain a healthy balance regardless of medications... I have been on topomax for a year now... I have epilepsy and was on Tegretol; the neuro was about to increase it when I mentioned migraine... dumb, it never occurred to me to mention the things to a neurologist of all people until I noticed the posters all over his walls -- this after several visits, ev-un!!! -- he tore up the increase for Tegretol, thank the heavens!!! and wrote one for Topomax, saying it had some success with migraine, but that it did cause weight loss, well I could do with that... he did not mention the other side effects... but then nothing can compare to those that come with Tegretol so why bother I guess...
There are people here who will help guide you through the side effects and help you cope..
cognitive problems? well I found they came for a short time with the higher doses and nothing like the Tegretol, so I laughed them off and once I discovered it was not Alzheimer's, so what??? and by the way, as with Tegretol, it settles down and goes away... unlike Tegretol, it is of short duration... my husband is a wonder, he has come to recognise my Tegretol spasms as we call them, and fills in the missing spaces in my sentences as if they never happened. People think we have always talked in tandem...
If you increase too rapidly and most neuros suggest two weeks between increases and tell you to choose your own pace actually, suggesting that if you are not ready at two weeks to wait a bit, then go up a dose, then the blurred vision can happen... so set your own pace...
and on it goes...
I have not had a migraine for a year...oh blessed relief...
seizures and migraines.... too much excitement for one person believe me...
with the Topomax moderating the seizures dropped in frequence too...
greatly!!! at times I was having two and three a week. sometimes every night, once or twice there were two a night...
with the Topomax it dropped to once a week, to months in between to four and five and six montbs to the point I thought it was going to be never...
but my system told me that it was not going to be totally cowed by this stuff... I had not had a seizure in six months when I had one Christmas night.. the stuff is not totally powerful.. but darned close... better than the other stuff but it is not classed as other than an adjunctive...
it is manageable and it does work and there is help here...
kat
>
Posted by Sooshi on January 16, 2004, at 10:52:47
In reply to Re: Starting on Topomax for Migraines. Advice anyone?, posted by miggis on January 14, 2004, at 6:12:54
Miggis and Ren,
I don't take Topamax for migraines, but I thought I could answer some of your questions about the side effects. I take 200mg/twice a day. Almost all the se's you are experiencing will fade the longer you are on the medication, except when you titrate up on your dosage, in which they will come back for a while.The tingling face, fingers, feet, etc. will still come and go but not nearly as much...for me, it's mostly that my feet just fall asleep a lot faster than usual and tingle a lot more when waking up!
The sleepiness went away once I adjusted to and settled on my dosage after about a month or so. I also take an anti-depressant though, so this may help with the grogginess, so take that into consideration.
The cognitive se's ("stupids") have now virtually gone, but were quite bothersome at first. I was unable to recall even the simplest of names and such, but now, all in all, I seem to have simply adjusted to the medication well and any cognitive problems I was having have gone away.
You must drink tons of water to prevent dry mouth, eyes, skin, hair, and kidney stones! I had very bad eye pain when I first started Topa, because I became dehydrated....now I have no "dryness" issues at all. I have not experienced any hair loss, but apparently this is a problem with some Topa users.
Topamax does have the unfortunate side effect of causing depression in some individuals, so you may want to keep an eye out for that (a poster named "Murphia" discusses this if you want to search the archives).
So basically, for me, I have adjusted to Topamax quite well, and am experiencing very little in the way of se's, after having experiencing quite a lot in the beginning....so hang in there!
Posted by headachequeen on January 16, 2004, at 11:58:24
In reply to Re: Starting on Topomax for Migraines. Advice anyone?, posted by Sooshi on January 16, 2004, at 10:52:47
>
> You must drink tons of water to prevent dry mouth, eyes, skin, hair,
I forgot to mention that if you take Biotin about 2500 mg a day as Murphia told us, it will prevent hair loss and dry hair... and I wish she had told me that when I started on Tegretin <s> as I am really a vanity nut about my hair ( a redhead)and topomax as she also told us destroys the vitamins and other minerals so get on a vitamin regimen...
actually it doesn't hurt non-Topomax users to follow a good vitamin regimen either...
so it has made a health person out of me
kat
Posted by whtdovepeace on January 16, 2004, at 16:30:51
In reply to Re: Starting on Topomax for Migraines. Advice anyone? » miggis, posted by ren on January 16, 2004, at 7:39:59
This is my first time here. I found this site today and read pages of posts from years ago that are so validating to how I'm feeling right now. I started talking Topamax last week. I began at 25mg and have increased by 25mg every 2 days. I'm on my way up to 200mg. I think I'm currently at 125mg. It's been a very fast titrate and I've been sick with symptoms as each day has passed. Some have gone away and others have come on......but it has been good to find you all (both past and present) and know that I am not as alone as I feel right now.
I look forward to getting to know some of you, for now I think I'm going to go take a nap before my son gets home from school.
blessings,
whtdove
Posted by redscarlet on January 16, 2004, at 18:14:06
In reply to Re: topomax » Sooshi, posted by headachequeen on January 16, 2004, at 11:58:24
The VERY BAD (lots of) hair loss did NOT stop in the 2+ years I was on it (and my hair is like straw too). The whole time I was on the Topamax I also took all the vitamins that were suppose to keep/stop the hair loss, but it didn't help at all. I took the vitamins anyway along with my other vitamins everyday, I guess I keep hoping it would help! The Topamax did work for me as a mood stabilizer for my bipolar that's way I stayed on it so long. However just this week, Monday in fact I was switched to Zonegran. I'm hoping I will not have the hair loss with this drug but I will continue to take the vitamins and wait to see what happens. All I know is that Zonegran is suppose to be a milder Topamax (less side effect) ! I don't know anyone else who is or has been on this med to get their option of it. Just a FYI - You can't take Zonegran if you are allergic to sulfonamides (sulfa drugs).
Posted by Sooshi on January 16, 2004, at 19:17:51
In reply to Started on Topamax last week, posted by whtdovepeace on January 16, 2004, at 16:30:51
Whtdove-that is a VERY fast titrate up! It's no wonder you need to go take a nap! You might consider slowing WAY DOWN, if you want to get a better grip on the side effects. It is usually recommended that one take 25mg for at least a week (even better 2 weeks) before titrating up another 25mg. But hey, maybe you have a great tolerance for this med? Good luck, and keep us posted!
Posted by Sooshi on January 16, 2004, at 19:29:54
In reply to Re: topomax » Sooshi, posted by headachequeen on January 16, 2004, at 11:58:24
Yea, I take all the required vitamins for the hair loss propensity and Topamax's leaching of vitamin's (especially the B's)! I lost at least 1/4 of my hair while on Depakote, so I've been through that, and am terrified it will happen again, but so far so good.....
Posted by Tierra on January 19, 2004, at 19:25:46
In reply to Topamax Experiences?, posted by Kingfish on January 4, 2001, at 7:29:48
Would you guys recommend taking topamax just for weight loss or are there to many side effects with it? My doctor just prescribed it to me and I've been reading about it. Thanks =)
Posted by ren on January 19, 2004, at 19:31:37
In reply to Just for weight loss, posted by Tierra on January 19, 2004, at 19:25:46
I would not touch this pill just for weight loss... the mood swings, metal taste in my mouth, fuzzy feeling, feet tingling, anxious energy, are just a few reasons not to take it unless you need it for a very serious reason. Oh I forgot to mention the slowing of your mental faculties.... good luck....
Posted by headachequeen on January 19, 2004, at 19:36:48
In reply to Started on Topamax last week, posted by whtdovepeace on January 16, 2004, at 16:30:51
> This is my first time here. I found this site today and read pages of posts from years ago that are so validating to how I'm feeling right now. I started talking Topamax last week. I began at 25mg and have increased by 25mg every 2 days. I'm on my way up to 200mg. I think I'm currently at 125mg. It's been a very fast titrate and I've been sick with symptoms as each day has passed. Some have gone away and others have come on......but it has been good to find you all (both past and present) and know that I am not as alone as I feel right now.
>
> I look forward to getting to know some of you, for now I think I'm going to go take a nap before my son gets home from school.
>
> blessings,
> whtdoveThis is an awfully fast increase schedule... a slower schedule usually ensures that the side effects are less drastically felt...
kat
Posted by headachequeen on January 19, 2004, at 19:40:15
In reply to Re: topomax...Hair loss!, posted by redscarlet on January 16, 2004, at 18:14:06
> The VERY BAD (lots of) hair loss did NOT stop in the 2+ years I was on it (and my hair is like straw too). The whole time I was on the Topamax I also took all the vitamins that were suppose to keep/stop the hair loss, but it didn't help at all.
I stopped taking the biotin because I ran out of it and kept forgetting to renew it... and me such a vain critter where me hair is concerned...
me hair began to return to the earlier straw-like consisitency of the tegretin attack ...
we are back on biotin with a vengeance and seeing an improvement...
it will take a while but there is an improvement...
kat
Posted by ren on January 19, 2004, at 20:09:41
In reply to Re: topomax » whtdovepeace, posted by headachequeen on January 19, 2004, at 19:36:48
I really think this is one medication that has to be started very slowly.... 25mg the first week was causing me trouble and even though the doctor wasn't convinced I was having so many side effects, she cut my dose back to every other day for now. The slower the better in my book. Everyone is different but you can't hurt anything by going slow.... good luck to all...Ren
Posted by redscarlet on January 19, 2004, at 23:25:54
In reply to Re: topomax » redscarlet, posted by headachequeen on January 19, 2004, at 19:40:15
I have decided to take more Botin. I read some place that some people need as much as 5000 mcg a day and I was only taking 2500 mcg a day. I'm hoping I will have some luck with this and hoping too that the Lonegran will not destroy the rest of what hair I have left!
Posted by sarita0001 on January 19, 2004, at 23:30:44
In reply to Just for weight loss, posted by Tierra on January 19, 2004, at 19:25:46
Hi,
I took Topamax and hated the side effects. When I started taking it, I was fed up with the weight gain from lithium. Try anything else first, diet, exercise, a different medication, lowering the dosage if possible. I would only recommend it if your weight is a risk to your health. I was 25 lbs overweight, which is a lot but at the time I was impatient and probably could have taken the weight off myself if I had just waited till I was less busy. Also, Topamax had been under clinical trials for weight loss and the trials usually didn't finish because people couldn't deal with the side effects. Some articles about it on www.qualitycounts.com.
Search under Topamax.Good luck
Sara
Posted by redscarlet on January 19, 2004, at 23:44:06
In reply to Just for weight loss, posted by Tierra on January 19, 2004, at 19:25:46
Not everyone losses weight on Topamax. So I don't think I would take it just for the possible chance I would loose weight, there are a LOT of side effects with this drug. I took it because I had to for Bipolar disorder. This is just my option, but you can decide if it's worth it or not.
Posted by micro on January 20, 2004, at 0:06:21
In reply to Re: weight loss, posted by kka on January 11, 2004, at 19:54:25
> > I started Topamax to counteract weight gain with Anti-D's and aslo help my Migrains. I have finally worked my way up to 125-150 mgs a day in three months. Although I have not had hardly and side effects since I have slowly increased the dose, I have not seen ANY weight loss. The urge to binge or over-eat has dimished, any I definitely eat less, but I am very fustrated with the lack of weight loss. What dosage has anyone begun to see real weight loss? Any input would be great! Thanks
> > increased by more than 100% (from 30mg to 75) if I'm going to naturally plateau or if (HA HA -- this is joke-able) I would hit a point where I'd actually lose too much or not be able to control the loss of weight.
> >
> >
> > I worried about that too but it seems that I have reached a point that some sort of control has come into effect and I am eating some sort of sensible amount of food on my own.. something that I have been unable to do for a long time...
> > first the anorexia routine then came the depression when food seemed to provide comfort...
> > but during December and into the first few days of January when I was battling depression I did not gain any weight...
> > so things seem to be controlling themselves I know it is not me...
> > I am not ready for a size eight jean or slacks but the waist of the ten is much too loose... not sure what to do there... and hate to look sloppy...
> > how things change in our outlook LOL
> > kat
>
> Hello, Try not to be so hard on yourself at this time. I know that it is difficult to do, but it will all balance out in time.Try to push fluids especially water and try some moderate exercise if you can. If you like veggies, you can eat lots of them with some carb free dressing or dips. Go to Walden Farms.com.These dips and dressings are actually quite good. These are empty calories with high fiber and healthy rewards especially your green leafy veggies. Also, There is a book called Eating for your Blood type which may be beneficial.Don't forget some light aerobics, go slow and build up. You will love the results. Good Luck! Micro
Posted by msmelissa on January 20, 2004, at 10:25:37
In reply to Topamax Experiences?, posted by Kingfish on January 4, 2001, at 7:29:48
Yes, my hair has been coming out at the roots but it is growing back in. I have colored it twice because of the grays and the same amount comes out. I have very straight hair and have been considering a perm for a long time and wonder what it might do. So, just curious if anyone else has gotten one since they have been on Topamax and if it was a good or bad experience.
msmelissa
Posted by headachequeen on January 20, 2004, at 10:26:41
In reply to Re: topomax headachequeen, posted by redscarlet on January 19, 2004, at 23:25:54
> I have decided to take more Botin. I read some place that some people need as much as 5000 mcg a day and I was only taking 2500 mcg a day. I'm hoping I will have some luck with this and hoping too that the Lonegran will not destroy the rest of what hair I have left!
>
Try taking Vitamin E and a small amount of zinc so your system can process the E along with fish oil capsule it really helps the hair too... I learned so much about skin and hair from conditioning the dogs,,, then learned to apply it to my own hair from the Tegretol once Murph jogged my memory; now I take the same regimen my dogs follow LOL and it works,
remember that Topomax depletes the vitamins we have in our systems so we have to replenish them...
and for those who want to lose weight there are rumours about specific foods helping... apples, celery, low fat milk, salmon (the Omega 3 oils in it), spinach, grapefruit, strawberries,oh man there are three others and I can't remember them but they will come to me later ...
they are not rumour or old wives' tales.. they do help...
as do the cashews and pecans and so on...
oh peanut butter is one of them...
had some time to kill in the clinic yesterday waiting for the eye surgeon and read this information in one of the brochures he had there.. he has this thing about fad diets so he keeps information there for his patients.. I wrote down the info but it is downstairs and I am here... shall find it and post it later...
kat
Posted by helenag on January 20, 2004, at 16:24:33
In reply to Just for weight loss, posted by Tierra on January 19, 2004, at 19:25:46
There is no way I would recommend this drug for use as a weight loss aid only. Loss of appetite is a side effect of the drug, among other things such as: numbness and tingling in fingers and toes, tiredness, cognitive slowness (forgetting the names of people, for one).
The weight loss associated with topamax is not a reason to be on the drug, in my opinion. It is an excellent mood stabilizer for those who need it and for whom it has helped.
It is certainly not harmless or akin to Slim Fast or some other over the counter pill (which have their own side effects, I would imagine.)
In any event, I hope you consult a physician with all your questions and pay attention to the folks on this board who have shared their experiences with topamax.
Peace,
Posted by sarita0001 on January 21, 2004, at 19:31:20
In reply to Ladies, have you had a perm after starting Topamax, posted by msmelissa on January 20, 2004, at 10:25:37
Hi,
Some anticonvulsants can change hair texture temporarily( eg, smooth to coarse, curly to less curly. My hair is straight and every now and then has the tendency to become frizzy on top, this happened more on Tmax.
Sara
Posted by headachequeen on January 21, 2004, at 20:06:35
In reply to Re: Just for weight loss » Tierra, posted by helenag on January 20, 2004, at 16:24:33
>
> It is certainly not harmless or akin to Slim Fast or some other over the counter pill (which have their own side effects, I would imagine.)
Many of the over the counter pills and potions have truly frightening side effects
when one considers that they are not monitored by physicians of any sort they are even more frightening.. there have been deaths attributed to some of them btwIt is important to remember that Topomax has a link to weight loss but as a SIDE EFFECT of its primary intent...
kat
Posted by Beck on January 21, 2004, at 20:35:07
In reply to Topamax Experiences?, posted by Kingfish on January 4, 2001, at 7:29:48
Yipee!!!! no more topamax! My neurologist said I could just stop taking it. I REALY disliked that med! I admit, yeah sure if I had Bipolar or seizures or somthing more serious than migrains onece or twice a week, then maybe, just maybe, I could put up with the horrendous side-effects, but nope, this med isn't for me. I think 23 is to young to loose your hair, maybe I'm just vain though. Due to other problems I oonly get 60oz of water a day, I worry this is not enough to prevent kidney stones. i lost weight, then gained it bck, so that did nothing. Forgetting everything just does not work with me(I'm proud of my memory), and my fiancee is trying to be patient but I repeat myself, stutter, and do just plain dumb stuff, and somtimes he gets a bit irritated. So Bye Bye to this medicine! My question is, should i listen to my neurologist and just quit cold turkey? I take one 25mg. in the am, 1/2 of a 25mg in the pm.
Any help would be appriciated!
Posted by ren on January 22, 2004, at 6:55:47
In reply to Re: Topamax Experiences?, posted by Beck on January 21, 2004, at 20:35:07
Hi Beck.... I'm with you... I was also taking this for migraines. I have vertigo as well, which the nuero thinks is coming from the headaches, however on the Topamax I felt foggier than ever! Along with the other side effects, I was beside myself!! And that was at only 25mg, which I was suppose to increase weekly until I reached 100! We decided to cut back to 25 every other day to get started more slowly, but I swear I feel better on the days I don't take it... I don't think its the right med for me either and am deciding to stop it all together... I hope you find something that works, medications are soooo fustrating....
good luck...
Ren
Posted by Dr. Bob on January 24, 2004, at 13:21:11
In reply to Re: Tomamax for weight loss, posted by Magazine Reporter on November 25, 2003, at 8:46:38
> I am a reporter for a national women's magazine writing an article on drugs that people use for weight loss, and on people's real experiences with those drugs...
For those who are interested, the article's out:
One Pill Makes You Smaller?
by Eliza McCarthy
http://www.elle.com/article.asp?article_id=3828Bob
Posted by blueeye on January 26, 2004, at 22:55:04
In reply to Re: Just for weight loss » Tierra, posted by helenag on January 20, 2004, at 16:24:33
I have to laugh about all the weight loss stuff and topomax. I took Depakote for ten years, and have taken Topomax for just over a month and dropped the 20 pounds Depakote packed on. The hair loss is nothing like the clumps that fell out with Depakote. One thing-my pdoc said people on Topomax were "collapsing;" three to five people in my rural area-anyone heard of that? I TAKE it for bi-polar and seizure disorder, so for God's sake...
She switched me to trileptil and is ever so slowly bringing me back up on the topomax (25mg per 2 weeks) for the bi-polar treatment. Yes, it makes you feel like a walking drunken idiot for awhile, but THAT PASSES. It seems many forget that the side effects do actually PASS.
God Bless.
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