![[dr. bob]](/dr-bob-sm.gif)
Dr. Bob is Robert Hsiung, MD,
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Posted by Beck on January 3, 2004, at 20:14:25
In reply to Topamax Experiences?, posted by Kingfish on January 4, 2001, at 7:29:48
Does Topamax make anyone else really irritable and grouchy, kinda tightly wound up, like the littlest things are big dramas for me. Does anyone else get this or am I just special?
Posted by Dr. Bob on January 4, 2004, at 0:01:52
In reply to re: please be civil » Dr. Bob, posted by Karen_kay on January 2, 2004, at 17:13:40
Posted by Karen_kay on January 4, 2004, at 0:14:01
In reply to Re: Topamax Experiences?, posted by Beck on January 3, 2004, at 20:14:25
I wish I could attribute that lovely personality trait to topamax, but well, ummm I was that way before. I am fairly certain I've read that here before though. Have you posted this previously? If not, you may want to do a search on Dr Bob's page through topamax and irritabilty and see what pops up if there aren't many hits from your post. I'm sure that I have read that here before though... I personally haven't been any more grouchy or wound up. Actually quite the opposite, except recently, but with good reason..
Posted by headachequeen on January 4, 2004, at 13:08:13
In reply to Re: really worried about past selenium use » headachequeen, posted by Karen_kay on January 2, 2004, at 22:30:02
> I used to be the exact same way. I couldn't understand how someone could just sit and watch a movie without also reading a book or without getting up at least 12 times to do the laundry, walk the dog, paint your nails, ect.
To my mind it is wasting time to simply sit there watching the screen, unless I am doing something that I view as useful and productive with that time... watching hockey when the Canadiens are playing is productive, watching a sit-com is not; grooming a dog while watching same sit-com is productive, although I have to confess that there are few sit-coms I would watch or listen to even while grooming the dog. Come to think of it, other than to watch an occasional movie, I have not had the television on for over a year, almost two...
I do pop into the room where the other television is now and again to see how a game is going (as in how soon will it be over or to see a bit on antiques roadshow with my favourite expert, Harry Sinden (he and the star of Chef! another BBC export make television worth having and I confess to being able to sit and actually watch Chef! and Darling Buds of May reruns without feeling that I am wasting time...)
but I have to be using that time properly... perhaps some link to childhood and the presbyterian upbringing?? when one was not encouraged to waste time... creative play was encouraged, passive play using games and ideas created by someone else was not... and books were encouraged as opposed to television as they expanded the mind and imagination...I take Topomax to help control epileptic seizures... as has been mentioned before on this board, I am one of the redheads here... we are special... oh soooooooo special.. our blood does not clot properly, so we have a special risk of hemmorhage following surgery and have a hard time with bleeding following even a minor puncture wound...
redheads have severly compromised immune system as I have learned to my sorrow.. spend a lot of time on antibiotics and with an iv pump attached or with nurses coming to the house every eight hours to run iv with fluids and antibiotics...as I work in my fun time training dogs, and have a particular skill with dogs who need behaviour modification I run a particular risk there... it stands to reason that if Rover has a problem with people I may be the plat du jour as we work out the problem... and as I grow older I grow slower in my response time...
but even a sliver or mosquito bite can lead to a flare up of cellulitis and then the round the clock iv and antibiotics..
we are also more sensitive to pain ...
all that aside, following a major emotional breakdown.. the psychiatrist who treated me after my admission to hospital informed me in no uncertain terms that there is no such thing as a nervous breakdown and then went on to inform me that I did not need a psychiatrist as I was not depressed, although I had been being treated for depression for several years... something like fifteen or more...
he told me I had a personality disorder that needed treatment by a psychologist and that I am hypomanic depressive... totally confusing me...
adding that I would require five or six years of psychotherapy before I could overcome the incidents in my childhood that led to this state and that he expected to see me back in hospital in six months and have a good day...
I think mostly I am confused LOLI know that Dr. Bob wants us to be nice about these people in the medical profession and I am being polite when I say that this man became a psychiatrist because he had no bedside manner and could not become a regular doctor and based on the experience I have had with my psycholist would never have made it as a psycholist either...
and my psychologist is not terribly impressed either...
My greatest fear when I hit the periods when I hit the periods of depression such as I have been in recently and the psychologist and my doctor have agreed finally is actually depression that I have been hiding from them because of these fears, is having to go back there and be treated by him again
He is the head of the service and decides which psychiatrist has which patient...
I do not want to go back at all and I certainly would not want him for a doctor... the psychologist and my own doctors have both reassured me that they think I can stay out with no problem but that if ever I need to go back I can refuse to have him as a shrink and ask for the one who admitted me...
my doctor says he would even refer me to her and see that she was my prime caregiver in such an instance...
and that helps immensely...
although I still have no wish to be in hospital...
or on antidepressants if I can help it....
I want it all... and gift-wrapped LOL
kat
Posted by Beck on January 5, 2004, at 16:05:11
In reply to Re: Topamax Experiences? » Beck, posted by Karen_kay on January 4, 2004, at 0:14:01
> I wish I could attribute that lovely personality trait to topamax, but well, ummm I was that way before. I am fairly certain I've read that here before though. Have you posted this previously? If not, you may want to do a search on Dr Bob's page through topamax and irritabilty and see what pops up if there aren't many hits from your post. I'm sure that I have read that here before though... I personally haven't been any more grouchy or wound up. Actually quite the opposite, except recently, but with good reason..
No I haven't posted that previously. Oh my, you know its bad when your grouchyness begins to annoy you! I do not know how people live with me! There must be another medicine I can take istead...
Posted by cyimda1 on January 8, 2004, at 8:49:27
In reply to Re: Topamax Experiences?, posted by Beck on January 5, 2004, at 16:05:11
I'm taking Topamax for Migraines....started at 15mg then to 30, now at 45 and will be up to 75 within a week or so. I have experienced MAJOR weight loss--and have never had that problem before--always been a little on the chunky side. I just have zero appetite. Nothing appeals to me. Is that happening to anyone else?? Also--I have just started to experience the tingling sensation and what did the rash look like? I got two very strange spots under my arms that almost looked like "rug burns" like you get when you're a kid tussling around on the carpet. My husband said they looked like bruises, but they didn't hurt at all, they're just starting to fade though. I didn't even think about the Topamax, but now I'm thinking they could have had something to do with the meds because I couldn't figure out where they came from.....
Posted by headachequeen on January 8, 2004, at 11:22:56
In reply to Re: Topamax Experiences?, posted by cyimda1 on January 8, 2004, at 8:49:27
> I'm taking Topamax for Migraines....started at 15mg then to 30, now at 45 and will be up to 75 within a week or so. I have experienced MAJOR weight loss--and have never had that problem before--always been a little on the chunky side. I just have zero appetite. Nothing appeals to me. Is that happening to anyone else?? Also--I have just started to experience the tingling sensation and what did the rash look like? I got two very strange spots under my arms that almost looked like "rug burns" like you get when you're a kid tussling around on the carpet. My husband said they looked like bruises, but they didn't hurt at all, they're just starting to fade though. I didn't even think about the Topamax, but now I'm thinking they could have had something to do with the meds because I couldn't figure out where they came from.....
While one of the reasons I was put on Topomax was to curb the migraine problem, I am primarily using it as a secondary med for epileptic seizures...apparently it cannot be used on its own for migraines... sigh... I had high hopes of being able to kick loose of the tegritol
At the beginning, I started on 25 mg in the evening increasing in increments of 25 mg every 2 weeks until I reached 200 mg then starting at 25 mg in the morning on the same schedule until I reached 200 mg in the mornings as well, I had no appetite...
the appetite has returned to some level now...
I am not as ravenously hungry as I used to be and I do not have the same cravings for food that I used to have ...
chocolate is said to be a trigger for migraine and I used to be unable to resist it... now I have little if any interest in it.. not even cocoa on a cold winter evening.. so that is no longer a problem ... and I have been a year without a migraine... it is official as of last evening...I don't know about the bruising and topomax...
I bruise at the drop of a hat in the next county as it is... but have seen no increase with Topomax...
someone else may be able to tell you whether that is a Topomax side effect...
but the appetite suppressant effect seems to level off at some point...
I do know that I lost sixty-plus pounds that I could well afford to lose in the time since I started taking it and am now wearing size ten jeans and skirts and quite pleased about it...
with work and self-control may get back to my original size... but not to the anorexic size... never that...
kat
Posted by cyimda1 on January 8, 2004, at 12:53:51
In reply to Re: really worried about past selenium use » cyimda1, posted by headachequeen on January 8, 2004, at 11:22:56
Kat--
Wow--that makes me feel better. The migraines do seem to be slowing slightly. Down to a size 10?? Sixty pounds wow!! What kind of time frame are we talking about? I -- stupidly enough...didn't weigh myself when I started on Topamax at the beginning of November. But this was the first holiday season that I didn't binge. I also used to be a choc-aholic. No desire now, and I know they are a trigger for migraines as well as coca-cola and other caffeine products. Since all carbonated beverages taste much like "battery acid" now, I've gone almost exclusively to water so I'm sure that's helping the weight loss as well. How long did it take before you leveled off, and how quickly did the weight drop? Did you ever feel really weak because of it?
Posted by headachequeen on January 8, 2004, at 16:06:38
In reply to Topamax and migraines, posted by cyimda1 on January 8, 2004, at 12:53:51
> Kat--
>
> Wow--that makes me feel better. The migraines do seem to be slowing slightly. Down to a size 10?? Sixty pounds wow!! What kind of time frame are we talking about? I -- stupidly enough...didn't weigh myself when I started on Topamax at the beginning of November. But this was the first holiday season that I didn't binge. I also used to be a choc-aholic. No desire now, and I know they are a trigger for migraines as well as coca-cola and other caffeine products. Since all carbonated beverages taste much like "battery acid" now, I've gone almost exclusively to water so I'm sure that's helping the weight loss as well. How long did it take before you leveled off, and how quickly did the weight drop? Did you ever feel really weak because of it?Funny but I hadn't thought about carbonated beverages... I just don't feel like drinking them any more... good thing too as the laryngo whatsis told me they are no longer to be on my list of what I am to drink anyway LOL along with alcoholic beverages (no great hardship there as far as I am concerned either)..
I used to drink a couple of cans of pop a day and not think about it.. and now if I do pour a glass of pop it sits there with perhaps a sip out of it until someone pours it down the drain... so that is probably another effect of the Topomax (Dr Jones would be so pleased to know that <G>)The weight loss started almost immediately... three pounds in the first week and that was such a boost to my morale I must say as the antidepressants I had been on had increased my weight as well as my personal reaction to depression (eat like there may never be food again) and to think that I used to be a whole 96 or 97 pounds... sigh... those were the days...
by the end of the summer none of the clothes I owned including clothes I had bought to accommodate the change in size fit me... at the moment I have a guest room buried in clothes that I have tossed here and there as I tried to find things to wear over the Christmas period... and then by the end of September I was searching for slacks and skirts and jeans that were a size ten... from sixteen or so to a ten...
and then when I went on course in late October it seemed to level off.. or because I was so incredibly active... climbing, scrambling, crawling, etc... I was eating more in a day than I had eaten in a week or more prior to then...
I was still eating my yoghurt for breakfast and lunch with olives and cashews, about an ounce of each for snacks... but for dinner would have meat and a baked potato and a vegetable and sometimes even a dessert... a piece of pie or a couple of cookies...
now things are normal again, the Topomax normal that is.. I am not really interested in food during the day, although last night I ate a grilled chop and peas and tried to eat a baked potato... forget that one.. did eat the skin though, the best part LOL...
I seem to crave protein again and I know I have asked about that before on this board and no one seems to find that particular craving accompanying the medication but I have never had it before...
the levelling phase seems to have come to an end...
I find that while the size ten jeans and pants fit basically, the waists are too loose, loose enough to look sloppy and I have lost a couple more pounds again... and that is with the Christmas food chaos thrown in...
turkey and dressing and cranberries and potatoes and gravy and all that...
and gravy is something I have to have...
although I had no wish for seconds of anything... even mashed potatoes and gravy which last Christmas as other years has been an absolute obsession... and that despite the heavy depression that moved in to live with me this year...
So if I can lose a couple of pounds and an inch or so around the waist despite depression and still not crave chocolate...this stuff must really be effective...
I also find that I am not as interested in coffee now... and that is something to which I admit an addiction...
cannot finish the first cup in the morning...
I know, more than two cups causes dehydration,have heard it so often, but I drink it by the gallon as a rule, especially when I am writing or working... but lately, it is only when we are out that I finish a cup...
and that first cup sits there ignored... unheard of...
maybe I should quit taking this stuff LOL
I would be happy to lose another ten pounds...
very happy... but then I think I might worry????
of course I do not want the migraines back...
and I do not want to gain the weight back...
and I do not want the food cravings/binges back...
and I DO NOT WANT the seizures...
and I do not trust the other medication at all as far as the seizures are concerned..
saw my doctor today and his reaction was that the seizure was probably caused by stress...
and he fluffed it off... now that reaction causes stress... does he not realise how terrifying these things can be????
next appointment could be a real knock down drag out war if he continues with that casual approach...
I don't think that is what the neuro meant by management of treatment... surely????
kat
Posted by cyimda1 on January 8, 2004, at 22:53:31
In reply to Re: really worried about past selenium use » cyimda1, posted by headachequeen on January 8, 2004, at 16:06:38
Funny but I hadn't thought about carbonated beverages... I just don't feel like drinking them any more... good thing too as the laryngo whatsis told me they are no longer to be on my list of what I am to drink anyway LOL along with alcoholic beverages (no great hardship there as far as I am concerned either)..
> I used to drink a couple of cans of pop a day and not think about it.. and now if I do pour a glass of pop it sits there with perhaps a sip out of it until someone pours it down the drain... so that is probably another effect of the Topomax (Dr Jones would be so pleased to know that <G>)
>
> The weight loss started almost immediately... three pounds in the first week and that was such a boost to my morale I must say as the antidepressants I had been on had increased my weight as well as my personal reaction to depression (eat like there may never be food again) and to think that I used to be a whole 96 or 97 pounds... sigh... those were the days...
>
> by the end of the summer none of the clothes I owned including clothes I had bought to accommodate the change in size fit me... at the moment I have a guest room buried in clothes that I have tossed here and there as I tried to find things to wear over the Christmas period... and then by the end of September I was searching for slacks and skirts and jeans that were a size ten... from sixteen or so to a ten...
> and then when I went on course in late October it seemed to level off.. or because I was so incredibly active... climbing, scrambling, crawling, etc... I was eating more in a day than I had eaten in a week or more prior to then...
> I was still eating my yoghurt for breakfast and lunch with olives and cashews, about an ounce of each for snacks... but for dinner would have meat and a baked potato and a vegetable and sometimes even a dessert... a piece of pie or a couple of cookies...
> now things are normal again, the Topomax normal that is.. I am not really interested in food during the day, although last night I ate a grilled chop and peas and tried to eat a baked potato... forget that one.. did eat the skin though, the best part LOL...
> I seem to crave protein again and I know I have asked about that before on this board and no one seems to find that particular craving accompanying the medication but I have never had it before...
> the levelling phase seems to have come to an end...
> I find that while the size ten jeans and pants fit basically, the waists are too loose, loose enough to look sloppy and I have lost a couple more pounds again... and that is with the Christmas food chaos thrown in...
> turkey and dressing and cranberries and potatoes and gravy and all that...
> and gravy is something I have to have...
> although I had no wish for seconds of anything... even mashed potatoes and gravy which last Christmas as other years has been an absolute obsession... and that despite the heavy depression that moved in to live with me this year...
> So if I can lose a couple of pounds and an inch or so around the waist despite depression and still not crave chocolate...this stuff must really be effective...
> I also find that I am not as interested in coffee now... and that is something to which I admit an addiction...
> cannot finish the first cup in the morning...
> I know, more than two cups causes dehydration,have heard it so often, but I drink it by the gallon as a rule, especially when I am writing or working... but lately, it is only when we are out that I finish a cup...
> and that first cup sits there ignored... unheard of...
> maybe I should quit taking this stuff LOL
> I would be happy to lose another ten pounds...
> very happy... but then I think I might worry????
> of course I do not want the migraines back...
> and I do not want to gain the weight back...
> and I do not want the food cravings/binges back...
> and I DO NOT WANT the seizures...
> and I do not trust the other medication at all as far as the seizures are concerned..
> saw my doctor today and his reaction was that the seizure was probably caused by stress...
> and he fluffed it off... now that reaction causes stress... does he not realise how terrifying these things can be????
> next appointment could be a real knock down drag out war if he continues with that casual approach...
> I don't think that is what the neuro meant by management of treatment... surely????
> kat
>Now I really wish I had been on the ball and weighed myself--wish I had known about the effect AHEAD of time. I'm definitely fitting into clothes I haven't worn in a REALLY long time--so that's a plus...and I was amazed that I lost weight through Thanksgiving and Christmas BOTH. Oh sure--I like sweets--but I'm a CARB girl. Love bread..and now it just sits on my plate. As a matter of fact everything just sort of sits on my plate. Before I had the food down my throat in record time--now it just sits there until it looks even more unappetizing. What exactly is that all about??
Carbonated beverages were a complete surprise, but the first time I tried one after the Topamax--I thought I just got a bad can out of the machine. Finally I sat down with my husband and 4 or 5 bottles of different brands and made him try them with me.
I also lost all craving for coffee, hot cocoa, etc. No desire at all. I'm just wondering -- since I lost so much weight already at such a small dosage, now that my dosage is being 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. MIND YOU I'M NOWHERE NEAR THAT NOW. I started this venture in the neighborhood of a 14/16. I think I'm in a 12 now--though I'm only trying on old clothes nothing new.. time for a shopping spree (whee hoo). By the way--noticing the same thing with the waist. I think I'm gonna try to hit the gym to at least tone somewhat so that as I lose it looks "normal"?? But if I'm in a 12 from a 16 with 30mg, and I've only been on it two months, and he's boosting me to 75mg...am I going to shrink away? Boy wouldn't that be great?? Ha!
Migraines seem to be slowing and the seizures which were relatively mild are all but gone, so I could stay on this stuff forever. The key is lots of water to avoid the potential for kidney stones though right??
Mic
Posted by headachequeen on January 8, 2004, at 23:02:19
In reply to Topamax in all it's glory., posted by cyimda1 on January 8, 2004, at 22:53:31
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
Posted by Sabeen on January 11, 2004, at 15:09:04
In reply to Re: Topamax Experiences? » Beck, posted by Karen_kay on January 4, 2004, at 0:14:01
Hey Beck, I too am having a real problem with the crankies! and I am pretty worried as I start a new job in customer service in a week... I currently find everything super annoying and have a very short attention span. I just started taking Topamax 2 days ago though so hoping it will pass soon...how are you doing now?
Posted by kka on January 11, 2004, at 19:54:25
In reply to Re: really worried about past selenium use » cyimda1, posted by headachequeen on January 8, 2004, at 23:02:19
> 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
Posted by Beck on January 11, 2004, at 21:57:04
In reply to Re: Topamax Experiences?, posted by Sabeen on January 11, 2004, at 15:09:04
> Hey Beck, I too am having a real problem with the crankies! and I am pretty worried as I start a new job in customer service in a week... I currently find everything super annoying and have a very short attention span. I just started taking Topamax 2 days ago though so hoping it will pass soon...how are you doing now?
Super annoying with a short attention span, I can totaly relate. I would say hang in there, it does pass. Mine did after the first two weeks, sort of,(not all the way gone but I think somthing else is going on there)anyway, yeah it should go away hopefuly. Hope it goes well with your job.
Posted by migraine sufferer on January 14, 2004, at 0:38:51
In reply to Starting on Topomax for Migraines. Advice anyone?, posted by inky on November 7, 2001, at 14:38:52
> Hi,
>
> I just started (last night first dose) on Topomax as a migraine prophylaxis.
>
> I don't have a history of any psychological disorders. just found this site through a Google search and you guys sound really knowledgeable.
>
> I've had migraines for most of my adult life and in the last few months they've become daily occurences. I've been taking Zomig and Ibuprofen to combat attacks -- have tried lots of other meds, too, both preventive and "abortive."
>
> My doctor, a headache specialist, recommended Topomax based on some very favorable results in his other patients.
>
> I'm a bit worried about side effects. They started me on 15 mg/day to increase by 15 mg each week until either the daily migraines go away or I reach 90 mg/day.
>
> I'm not taking any other neurological drugs.
>
> I'm a bit worried about the side effects. I do feel a bit groggy today but I don't know if it's from the Topomax. Is this commmon? Does it go away?
>
> My doctor mentioned tingling fingers, loss of mental acuity, depression, weight loss (not a negative in my opinion!) and dehydration.
>
> Has anyone experienced any of these? I'm particularly worried about the loss of mental acuity and grogginess since I need my brain power! I'm also worried about depression because I've seen what a horrible disease that can be.
>
> And I'd like to know if the side effects tend to go away with time. If so, how long does it take?
>
> If anyone has any advice, comments, experiences, etc. on taking Topomax for migraines, I'd appreciate it.
>
> Thanks!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!
Posted by miggis on January 14, 2004, at 6:12:54
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've been using Topamax for migraine for a month now and take 100mg/day.
The migraines continue, not every day though, as they used to.
Topamax causes me lots of side effects; sleepyness, dizzyness, hair loss, tingling feeling in feet and legs. I've been also feeling depressed, but I don't know if it's due to the medicine or the migraine itself.How long did you, migraine people, have to take Topamax before it started to help?
Thanks!
Posted by ren on January 16, 2004, at 7:39:59
In reply to Re: Starting on Topomax for Migraines. Advice anyone?, posted by miggis on January 14, 2004, at 6:12:54
Also interested in anyone with info on the help or lack of help of Topamax. I too have been on a 25 mg. dose for about 4 days. My migraines are already accompanied by dizziness and so far, I still feel alittle groggy, but no pain. The tingling in the feet is pretty painful, but doesn't seem to last all day, was wondering if this side effect goes away or gets worse as the dosage increases? Has anyone notice a funny taste in the back of the throat or mood swings... I feel pretty good one minute and can get pretty low the next... not sure how much the mind plays into it, since I am not one that has much faith in medication... would love to hear other's experiences. Best of luck to all who suffer...
Ren
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 =)
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