October 27th
2008
3:13 PM
Hi all...I've been taking 25mg. of Topamax at night for 5 days now. Unlike most of you I have not experienced the tingling in the extremities or the weird taste in the mouth or even much tiredness at all other than what has happened as a result of my weird side effect. I was prescribed Topamax by my neurologist for my migraines. I've had them since I was 12 years old. I'm 49 years old. The got worse during peri-menopause which is kinda normal given the hormonal fluctuations, but was told by my neurologist that they would very likely subside significantly when I became menopausal. Well folks, I've been menopausal for 5 years and for the past 2 years my migraines have been the most horrific of my life. I have approx. 15 to 18 migraine days a month, some of the headaches lasting 3 bloody days. So it comes to this...Topamax. In the past I have suffered some pretty rare side effects from some very benign medications so I guess I shouldn't really be surprised that this is happening to me now. The first night I took it I slept like a baby. The second night I was slightly 'hyper' but managed to get to sleep. But for the past 3 nights it's been hell. When I lie down in bed, my body feels as though there are electric currents shooting through it and coming out my right leg. I have to move my right leg or go completely bonkers. Fortunately my daughter is away at university and so I can sleep in her room. So I lie there...on my left side...with my right leg hanging over the side of the bed swinging and swinging and swinging as hard as I can just so that I don't scream. It's awful. Last night was the worst. I saw dawn this morning. I just got off the phone with my pharmacist and he told me that I had described a classic case of RLS - Restless Leg Syndrome. And guess what? Topamax is used to trest RLS!! For bleep's sake! So nice people I am suffering a completely opposite side effect to the one that seems to be the most common one...tiredness. Has anyone else heard of this? Experienced this? It seems to all focus down to my right hip and leg. I have to move it vigourously or go nuts. I am so tired today but that's because I got like 3 hours sleep. I fell asleep from sheer exhaustion after my husband left for work at 7:30am.
A side note...I also take 75mg of Effexor for panic disorder and my neurologist told me that this is a very good mix of meds for migraine prevention. My top dosage for the Topamax will be 75mg taken at night.
I'd really appreciate any feedback on my side effect. Thanks in advance.
D.
-- By luna13darke | Reply | (3) replies | Private Message me
October 25th
2008
9:27 PM
I'm a 24 year old female, the doctor put me on topamax about a year ago for my migraines, since they stopped making midrin. It made me sleepy beyond anything. Food and drinks started to taste odd, I stopped taking when I lost insurance because it was $170.00 a month. I had been wondering if I should take it again and now after reading this stuff, I am not going to be doing so, while the weight loss would be nice, I don't need to lose my memory at 24 when I have a 3 year old son to worry about, thanks to call that have posted. :D
-- By nicholie | Reply | Private Message me
October 20th
2008
5:40 PM
I've been on Topamax for 3 years for migraine and it works most of the time. I am currently having a hard time with the usual side effects of memory loss, hair loss, word recall problems, coldness, depression, no sex drive, and am developing a cough. BUT I had a side effect that has not been mentioned when I first started taking it (25 mg in am and pm -- I'm now on 50mg in am and pm).
For about 2 weeks, I would get in my car to go to work and miss my turns because they would cognitively come up too soon (this is after 15 years of going to work the same way everyday). I had to be extremely conscious of my surroundings when I drove or I'd miss all my normal turns. I got lost in my own neighborhood once going home. At work, I'd get up from my desk to go to a co-worker's desk and arrive there amazing fast to my mind. I was experiencing time/space/distance distortion. It became fascinating to me, but it passed.
September 28th
2008
8:46 AM
Topamax makes things taste yucky!! things like soda, beer, etc. And I've typed a whole report before or listed something on ebay and only looked back later and called myself a STUPIDAS# because of all the misspelled words- should of used spell check- which if you take Topamax make sure your spellcheck is on! Don't know why but the med will slurr your speech and brain. I do still get the occasional migraines while taking it so I'll stop it, plus tired of the spelling probs I have while on it. But my doc says I should be persistent with it, just like everything else out there... there's always a price to pay! Other than that, no side effects like stomach pain or weight loss like I've heard in others. Oh but it will make you tired..especially at first..very tired!
-- By 502heather74 | Reply | (1) replies | Private Message me
September 24th
2008
6:48 PM
I have been taking 300mg of Topamax BID for 4 years. I also am Taking 300mg of Lamictal BID. I have had all The same side effects that have been listed. I still get some numbness and tingling in my hands, feet or legs from time to time. The weight loss eventually leveled off for me. (My Dr. said that would happen). I lost 30lbs and gained 10lbs back. the confusion and memory loss was a big deal for me, but I had finally found a great combination of meds that controlled my seizures. I found B12 shots and no caffeine really helped keep my mind clear and gave me back my "verbal capacity" (you guys know what I mean).
Overall I think it's a great drug. It defiantly changed my life for the better.
I Tried 4 others before I tried Topamax.
Nothings gong to be perfect.
Jessica, Tampa,FL
September 19th
2008
9:42 PM
I was on topamax for about 2 years. I took it for frequent migraines caused by my sinus's. I had all the normal side affects but got used to it after awhile. The only one i didn't get used to was the hair loss. During this time I started allergy injections and now i'm up to my maintenance level. So i decided to ween myself slowly off the topamax. I have been off for about 2 months now and I have been fine on the headache side, but i have started to get other symptoms (i think withdrawal symptoms). They have progressively gotten higher in number as the days go by. First my hair loss has not stopped. I gained about 10-15lbs, I am edgy and climbing the walls all day. I have a really hard time relaxing. I recently developed horrible insomnia, and about a week ago i started having digestive problems including water retention, bloating, gas, irregular bowl movements, and acid reflux. And I've recently had bouts of tightness in my chest and throat which make it difficult to breath (lasts about an hour). I didn't have any of these symptoms while i was on the topamax (except the hair loss), nor did I have them before it.
I am seeing an endocrinologist in a few weeks to make sure nothing on that front is causing any of this, but i really feel it's from taking and going off the topamax. If you can find other ways to deal with your migraines, DO!
September 3th
2008
7:00 AM
At 50mg a day, Topamax, taken at night, makes me feel very heavy, tired and numb all day. I have been on it for 3 months so far. I also have other side effects mentioned in previous posts. I hate feeling tingly in hands and legs (from the knee down) and sometimes in my face. It is supposed to go away - soon? I get a bad case of my legs falling asleep in almost any position I sit in other than total upright (which is not comfortable). My lifr-long instiable appetite is hardly affected. I'd say maybe a little bit. I do notice taste difference in drinks and food, sometimes more than other times. I need this medicine for Migraines, it has help relieve my symptoms, but I think I need to continue to increase the dose because I still get Migraines and feel pressure in my head a lot.
-- By lin06 | Reply | (1) replies | Private Message me
August 29th
2008
1:14 AM
well, i guess i am not alone. this is the second time i have been on it. i weighed the pros and cons and figured that the migraines were worse than the depression, mood swings, and the inability to compute simple math. well, i feel differently now, and i think i am going back off of it again. my sex drive is also gone, but i have had a problem with that and the depression for years, just not this bad. i feel i have yelled at my children way too much lately, cuz it is making me so crabby, and i don't think that it is worth it. after reading some of your posts, it has helped me make the decision to go off of topomax for good. i could deal with tingling, bad taste, and weight loss (the only good side effect), but not the other horrible effects.
-- By myjanedoe | Reply | Private Message me
August 27th
2008
9:51 PM
I've been on Topamax for a year and a half now. I started with 50 mg. and am now up to 100 mg. I did have the usual side effects of the tingly fingers, feet and arms the first six weeks and then that went away. Food and soft drinks tasted funny for a while, but that too went back to normal. I did lose 15 pounds and I didn't really have it to lose in the first place, so I upped my workouts with weights to compensate. My migraines have gone from five a week to one, so it's helped me BIG time being on this medication. My eyesight, however, has suffered. I used to have 20/20 vision. I now need reading glasses. I'm sure it's because of this medication, but to be honest, I'll take the glasses over being in that severe pain five times a week.
-- By jcrinc | Reply | (1) replies | Private Message me
August 22th
2008
3:09 AM
I was thrilled to lose about 15 pounds so fast, but lately I have noticed so much hair in my brush that I could make a wig. I am not willing to lose my hair or eyesight. Working in pharmacy, when this first came out I put myself on it b/c I heard about the weight loss. I also have had a few seizures and an MD prescribed it, but I know what caused those seizures, some bad behavior, and I know im not epileptic. thought they told me once you have one you're prone to them. As long as I stay a 'good girl' i have had no seizures. It sucks thinking about gaining back this weight though. Willpower and the gym I must, i must.
-- By ughhhh | Reply | Private Message me
July 29th
2008
9:54 PM
My psychiatrist started me on Topamax 2 yrs ago for depression from being 75 lbs overweight. Started at 25 mg/day up to 50/day for 2 yrs. Lost 70 lbs and kept off with only minor side effects. Also took 150/day Wellbutrin during this time. (For being kind of a neat freak and washing my hands a lot.- didn't affect my social or work life much) Have slowly started gaining the weight back (+12 lbs). Seem to have built up an immune to the 50/day dosage over the 2 yrs. So he added 25 in the am in addition to the 50 I've been taking in the evening. (1 mo. ago) Having some strange reactions. My memory seems to be taking a real hit. I am a CPA (passed these exams 15 yrs ago) and now I'm studying for the Cert.'d Internal Auditor exams. I am having a great deal of trouble trying to memorize for these 12 hour long tests! I feel fatigued every day. My blurred vision (that requires reading glasses) has gone crazy. I can't read the song book at church at all. And I'm only 47!. I've had acne like bumps all around my nose and face. How could such a slight increase cause so much change? Also sometimes my heart feels like it is going to beat out of my chest. And I'm losing patience w/my 13 yr old son who's pushing my buttons to see how much he can get away with. He seems to sense that I'm not at my best. But if I go off this Topamax and gain back my 70 plds I know I will plunge into a DEEP depression. Has any one talked to their doctor about the possibility of these side effects going away after time? My tingling hands and feet did and my slight hair loss did. And my weight loss is trying to go away but I don't want that. I'm majorly concerned about the memory loss and blurred vision eventually going away. DALIAL
-- By manerva | Reply | (1) replies | Private Message me
July 22th
2008
8:51 PM
Hi I've been on topamax for 4 years . Had all the side effects...weight loss,tingling in hands and feet,no memory and speech problems! I was taking 600mgs a day! I take it for epilepsy! I was on the highest dose. my doc then weened me from top. to zonegran 600mgs. It's very similar to topamax. For me it is not helping me as much as the topamax. I think it's a great drug!!!! I did not loose hair, no constipation, no rapid heartbeat for me! I am going back on it . Yes sometimes I would get in a hostel mood and can't spell shit , but for me it's all GOOD !
-- By deedee103174 | Reply | (1) replies | Private Message me
July 14th
2008
11:02 PM
I've been on Topamax for a few months now........this is the second time. The first time was in 2002-2004. I was up to 400mg for migraines & depression. It was supposed to do double duty. Well, I was stupid, to put it briefly. I couldn't remember anything. I would stop mid sentence because I couldn't think of the word I wanted to use. I lost a lot of weight, too much. I had needed to lose a little....baby weight. But I looked anorexic. So out to buy a new wardrobe. $$$ I lost a ton of hair!!!! So off it I went. The weight came back very fast....too fast I think. My friend says the same thing of her experience. THIS time I'm on 250mg.....no more than that, as per me. I was stupid for a little while, but it seems to have gone away for the most part. My hair is still falling out, so not much longer on this one for me. The reason I went back on it was for the weight loss ( and it does help the migraines). I was on some migraine meds that made me gain 40lbs over a 2 yr period(Abilify,Cymbalta). NOTHING could get off the weight. Not exercise, not diet. I've lost 21 so far, but my progress has slowed because of Wellbutrin...it makes me crave sweets. And my willpower is nil. lol So off the Wellbutrin I go. I also learned my nastiness could be from Topamax. I snap at the kids. Who knows which drug it's from! I also take Singulair. That's a story in itself. That one's gonna go too.
-- By robin43 | Reply | Private Message me
June 25th
2008
2:33 AM
I have been on Topamax for 2 1/2 years at 250mg for migraines and have decided to get off because of side effects. I have had all mentioned: mood swings, dehydration, not sweating,tingling, dizziness, loss for words, short term memory loss,numbness, fatigue, GI problems, anorexic weight loss,rage... And this all began from the starting 25mg dose!
The migraines decreased from 24 a month to 12, at best down to 6 or 7, but I seemed to hit a plateau then back to 15.
I saw three different doctors and all wanted to simply increase the Topamax or add another med (Depakote, beta blocker, etc.)
Finally, I found that a problem with my neck may be causing the headaches and treating that has reduced them enough for me to try and get off the Topamax. I still rely on the Relpax to get me through the bad days, but I'm hoping I can get free of the Topamax for good!
I just encourage anyone thinking of starting Topamax to investigate all possible migraine causes before starting!! Topamax doesn't cure the migraine, it only blocks the pain! And the side effects are not worth it if you can find another way to alleviate the problem!
June 7th
2008
4:25 PM
I've been taking Topamax now for about 6 weeks, and my headaches are still just as bad as ever, except now I have headaches with the thrill of numb fingers, confusion, weight loss, memory loss, an absolute horrid taste in my mouth, and now the latest.... my hands feel dirty all the time. Has anyone experienced this?? I just feel like my hands are dirty. I wash them, and a half hour later, it almost feels like there's a film on them, and I have to wash them again. Almost ocd-ish. So 6 weeks in.... Anyone have any advise on how much longer I should give this topamax before I give up on it & try something else? My doc said it should have worked by now if it was gonna - but I have read on here, that it sometimes can take months...? I just don't know if I can take these side effects, AND the headaches for much longer without going NUTS! {grin}
Any advise?
June 3th
2008
10:04 PM
I have been taking Topamax, 25 mg. for one week. Today was the first day I took 2. My doctor prescribed it for migraines, which I was having several times a month. The past few times I thought I was having a heart attack! I read about the side effects before I began the medicine so I have been waiting on everything to begin. So far the only thing I have noticed is I have a weird sensation in my mouth and sometimes in my throat. The only way I can describe it is if I have been breathing something caustic, such as smog or smoke, or a lot of dust. One thing I am going to try is a mouthwash called Biotene or Biotene. It is for dry mouth. Maybe it will help. Has anyone else experienced this and/or tried Biotene?
I read with interest what everyone has written. I drink soda all day and will be integrating more water because of one of the posts. So far though, my cokes taste the same. Is it only Dr. Pepper that tastes differently? I have also been getting winded easily and thought it was just me. The one side effect I am READY for is the weight loss. I gained 20 pounds in a year after I quit smoking. Anything to help with that is welcome.
So far though I have not had any migraines and I always have one with PMS. No increased anxiety but I have been on Zoloft for several years for depression. Maybe the Zoloft will offset the Topamax in that respect. I can be somewhat scatterbrained at times and as an assistant principal, I have to stay focused all day. Now that it is summer I will be able to relax a bit and it's ok if I am more absent minded than usual. Except that I have to work on a research project. But hey, does anyone really read that stuff??
Thanks everyone for sharing and I will check back in if anything changes. I am curious to see how things will go.
May 28th
2008
9:19 AM
I began reading all of the blogs about Topamax and was surprised. I have been taking Topamax as a mood stabilizer since February 2007 at 200 mg at bed time (I probably sleep off the fatigue). The only side effect I am concerned about is the weight loss. Short term memory is not an issue. As a matter of fact, I am attend college and am managing a 3.85 gpa. I wish all of you the best of luck and hope you find something that works for you.
-- By angiepangie44 | Reply | (2) replies | Private Message me
May 23th
2008
12:23 PM
I started taking topamax in 2005, for bad headaches due to my antidepressant zoloft it is now 2008. I am 5'7 and weighed around 140, I now fluctuate from 115-125, no more no less. From taking the pill I suffered a great deal of weight loss and disorders. I now am unable to gain weight even when i eat cause my body is not the same. I mean its great if i needed to loose weight but at 5'7 weighing 120 soaking wet its not.
-- By blondiebaby14 | Reply | Private Message me
May 5th
2008
12:31 AM
Currently on and will be calling the doctor tomorrow to stop after reading everything tonight. I have the migraines still, I have the tingles in all the weird places, everything taste like pooh, which is wonderful, seeing that I myself am overweight and do need to lose the weight. I am not through my 1st full script,but up to my 100mg per day(50 in the morning and 50 at night). I have lost those first 20lbs. and Wow, how nasty those DP's taste now! I was up to 4 Zomig per day before the doc put me on Top and he thought it would help with the weight loss too, but the depression is uncontrollable. Can't sleep at all even while taking sleeping meds and very tired. Everything hurts.
-- By seven777 | Reply | Private Message me
April 26th
2008
2:11 AM
I dont know if it has anything to do with Topamax but i think i may be doing some weird stuff in my sleep or not sleeping as much as i think i am. i would call it cat napping. other than that, the first 2 months were horrible. i had the numbness in the hands and feet and i could never find what i wanted to say and i would stutter and feel like a dope. the doctor told me to wait it out for awhile and sure enough, the worst of the side effects went away. I still have problems finding things to say and im a bit more spacier but my seizures and my headaches and everything that was wrong is gone. Overall. its all good. I would just like to know what the heck im doing in my sleep and if its ever happened to anyone else. Maybe i should call my doctor. hah.
-- By blahblah1223 | Reply | (1) replies | Private Message me
April 24th
2008
5:44 PM
headaches,nausea,fatigue,irritability,blurred vision,terrible loss of memory,inability to eat,depression,diarrhea
-- By nellesweetnessnectar | Reply | (1) replies | Private Message me
April 10th
2008
11:10 PM
I began Topamax in August after 6 months of ongoing severe migraines. They stopped immediately. My DR had warned me of weight loss but I thought who cares? I weighed 130 at the time. I have had a fatigue problem for years so I really can't attribute that to Topamax. I did become very sick (exhaustion-couldn't get out of bed) after Christmas and had my DR take my ANA which was 1280 (high). I have also experienced hair loss but I did not find that on the "side effects". I called the hot line to see if there were other reports of affected the ANA count and they had no data on this. Has anyone else had this experience? Meanwhile, it is 8 months later, I am down to 96 lbs and worried, have lost all fat & muscle - no migraines!
-- By triciakaren | Reply | (4) replies | Private Message me
March 25th
2008
9:24 PM
Here is the link to the information about vitamin deficiency and medications. You can search different types of meds so I hope it is helpful...this is where I was able to go through and figure out which vitamins would be useful for me to take to help with the side effects. Now this is good because these are vitamins that Topamax is absorbing ouot of your body so all you are doing is replenishing it into your body to help prevent the side effects. The only side effects that I couldn't really find a vitamin for was the eye strain (and after asking the pharmacist she said that is a nerve thing so there wouldn't be anything) if you are having that, and the weight loss. Hope this is helpful. I have been searching since my first post hoping I could find the link...
****
-- By blessed08 | Reply | Private Message me
March 19th
2008
2:26 PM
I've been on Topamax since Sept 2007 and the only side effects I have had were at the beginning were the tingling in the hands and feet when I was brining my dosage up. Soda tastes awful but I no longer drink it and that is a godsend after being a heavy drinker of it for years. I do find there are time when I can't find the right word to say, or I forget what I was doing, but I deal with it. I have lost 20 pounds since being on the medication. After being on it for 6 months the tingling is gone, I usually counteracted it by drinking plenty of water in the morning, that got rid of it. The drug has taken away the migraines, and regular headaches I have suffered from for years. It has also stabilized my moods and taken away my anxiety issues. I'm 36 and have never felt better. Topamax is definitely not for everyone. For those that are suffering, please do contact your doctors and try to get off the medication.
-- By capricorn2oo8 | Reply | (5) replies | Private Message me
March 18th
2008
9:15 PM
I take 200mg a day (100mg in the morning and 100mg at night) for seizures. It has been my miracle drug. Granted the side effects were awful. But I did my research before starting it again. I had taken it previously for migraines and couldn't tolerate it. If you take the appropriate vitamins while taking it you can help to alleviate a lot of the side effects that you may have. Topomax can absorb some critical vitamins out of your body which causes some of the side effects. The vitamins that I take are: a high dosage of a Super B Complex (tingling, numbness, fatigue, speech). L-Carnitine (memory loss), Biotin (hair and skin). There is another website with postings similar to this which is where I discovered other patients taking Topomax that had discovered using the vitamins helped. Once I got on a good regimen of vitamins it made a big difference. I still experienced and am experiencing weight loss (but I just had a baby) so I am not really upset about that. LOL Anyways, I hope that information helps someone out there. It sure did help me. If I can find the research link that had the vitamin listing that it depreciates I will post it.
-- By blessed08 | Reply | (1) replies | Private Message me
March 1th
2008
11:00 PM
2 yrs ago I was diagnosed with peripheral neuropathy. I have been on Topamax since, because of the severe pain it causes. I have never experienced weight loss and I was on up to 400mg a night. I am now on 200mg a night. My tastes are fine and my drinking sodas were never like metal. But for the fatigue of the disease I also take Provigil in the morning. I have noticed my eyes have changed. Never gave it a thought to be Topamax. Plus I just got new glasses again 3 months ago and am seeing a change in my sight again. Also there is a noise in my ears,not ringing,but sounds like crickets. Never had that before. I was on 2 other meds but I took myself off of them because I really don't like taking so many. The others had worse side effects. Until they find a cure for this disease it looks like I'm stuck with Topamax. This is one pain I will not and can not live with.
-- By javajo | Reply | (2) replies | Private Message me
February 26th
2008
1:14 PM
I have been on TOPAMAX for over a year and until recently I didn't realize I was suffering from any side effects. It helps the content headaches and the weight loss is great. In the past six months I have been suffering from severe chest pains, you would think that it was a heart attack. The doctors can't seem to figure it out. After the help of my family doing research, we've found that TOPAMAX DOES NOT mix with METFORMIN for diabetics or LAMICTAL for bi-polar or seizures. Why don't the doctors or the pharmacist warn you about this kind of stuff. I have went from a fairly healthy energetic person, to someone that can even get up and go to work. I have 2 to 3 attacks a day and each one drains me more and more. It is not good for my mental well-being, and I am uncertain if it will have any long term effects or damages on me. It has not been proven that this is the cause of my pains after specialist to specialist and many more to come, but I am positive it has a lot to do with it. I just don't want to hurt any more.
-- By bybeegirl1971 | Reply | (1) replies | Private Message me
February 23th
2008
11:30 AM
I have been on Topamax for 3 or 4 months now for migraine headaches. I love it. I use to get cluster headaches everyday for a while now not at all. I get the tingling in the hands and sometimes in the feet. But only in the morning and not all the time. The weight loss waiting for it. I'm on 100mg at night. I think when you take it at night it is better. I don't have any confusion at all. So I think it works for some people and not others.
-- By dphoto | Reply | Private Message me
February 21th
2008
9:45 AM
I am also experiencing hair loss and have been on Topamax about 2 months. I had no idea this was a side effect. I initially lost weight which was wonderful, but then my weight dipped so low my family and friends thought I was anorexic. I was finally wearing a size 3 pants. I normally am in size 8's. I am on it for bi-polar and to help with binge-eating. But I cannot deal with the hair loss. I don't think that being skinny is worth losing my hair for. No other meds have helped my depressive moods without making me gain weight and at this point I just don't want to take any drugs. I would rather try some therapy...that has become less common. The doctors just want to give you a pill now-a-days.
-- By cc1170 | Reply | (1) replies | Private Message me
February 16th
2008
9:00 PM
I have been on Topamax for four months for epilepsy and I love it. I do experience some of the above mentioned side effects but my seizures were not grand mal seizures they were absence seizures. so the memory loss thing is a non issue for me, as far as depression, didn't get that one, weight loss; glad to have it, tingling; not that bad; the coldness; really only bothersome at bedtime so I take a bath at night, a really hot bath. Confusion, I was confused a lot because of the seizures so, again don't know which is worse. For me I feel this is a miracle drug. I'm not sure about the abdominal issues that is my only concern right now, that is what I am dealing with constipation and maybe some menstrual issues??
-- By teach532 | Reply | Private Message me
February 2th
2008
5:43 PM
I started Topamax two years ago for migraines. It caused many side effects...depression..I would forget, tingling (that we away after about 4-5 months), weight loss (I looked bad -- I was thin before)...but I stayed with it because I was pain free and before had daily headaches with debilitating one to three times a week. I went off the Topamax in November. Slowly I got my life back and was happy...now the headaches are coming back faster than they left. I just started back to Topamax day before yesterday. Today the tingling started....guess you have to weigh the results.
-- By srgerhart | Reply | Private Message me
January 27th
2008
9:32 PM
I'm a 26 year old female and I've been on Topamax since March 2007. It has completely gotten rid of the debilitating headaches I experienced 3-6 times a week. It also got rid of my anxiety. I got my life back, my antidepressant kicked in at the same time. I experienced all the usual side-effects, tingling hands and feet, forgetting words, memory problems, loss of appetite, but was COMPLETELY pain-free. I still am. However, I never remember anything now, forget whether or not I did something, paid my bills, etc, lose things constantly, and I have lost about 20 lbs. Not good. I look anorexic. I have bones sticking out. Eating is hard. I forget to eat and drink all day and food is just unappealing. I feel fuzzy and stupid and slow. Not sharp like I used to be. It has killed my confidence and self-esteem. But I was wondering if any women out there got yeast infections while they were on Topamax. I've had one monthly since I started it, and my doc said it's a rare side effect. Oh yeah, I've had mild hair loss and mild to moderate acne now. This drug, it is such a 50-50. Living with chronic pain, those headaches were awful. But doubting yourself is awful too. Anyone have similar experiences?
-- By medgirl | Reply | (6) replies | Private Message me
January 21th
2008
9:35 PM
I have been on Topamax for a little over a year. I've had most of the side effects; tingling, numbness in the fingers, dry mouth, forgetfulness, and weight loss - love the weight loss. All the side effects have sort of slowed down as I've been on the medication longer. The weight loss has slowed and I've even began to get my appetite back- I'm afraid I'm going to start gaining weight now! I've lost about 40 pounds and I needed to lose it, so that was wonderful. I've had a very hard time losing weight all my life so this was wonderful.
I was addicted to Coca Cola and this med also helped me kick that habit because I lost my taste for the carbonation.
Does anyone know if the weight loss usually evens out after about a year or a year and a half? I need to lose about 30 more pounds and was hoping that I would continue losing weight!
Anyway, I was on the Topamax for headaches and it has completely helped that! It has truly been a God-send for me. Other than monthly hormone headaches, I don't get migraines hardly at all!
I am wondering about having my doc up my dosage for the weight loss aspect????
-- By mzcheryl | Reply | (16) replies | Private Message me
January 4th
2008
6:50 PM
Today is day 8 on Topamax. The only symptoms I've really had were the first few nights on it I woke up in the middle of the night but that has stopped. I had a few bad dreams but that has stopped. Drinks taste a little weird to me, but nothing like anyone else on here has described. I can still taste the carbonation at times. I just started taking 50mg today. I do 25mg in the am and I am going to take 25mg in the pm. For the previous 7 days I was only on 25mg per night. I have heard all this talk about weight loss on Topamax. That's part of the reason I am on it...to counteract the weight I have gained since I've been on Lamictal. Anyway, I haven't noticed a decrease in my appetite OR any weight loss at all so far. I was just wondering how long it took to start affecting you guys with the weight loss. Is there a certain mg you are on that it starts to affect your appetite/weight loss or a certain time frame or what? Any information would help. Thanks!
-- By cmbandrwb | Reply | (3) replies | Private Message me
December 28th
2007
8:04 AM
I am going to begin taking 25 mg of Topamax at bedtime tonight. After reading all of these posts I am a scared. I was prescribed Topamax for bipolar disorder. I am currently taking Lamictal as well. I always gain weight on psychotropic drugs and need to lose about 15 lbs (all of which I have gained over the course of being on Lamictal). Any who-my psychiatrist said that this medication may help counteract the weight gain I have experienced. Although I do not consider my self an overeater now. I do hope that it helps me to not like the taste of sodas though. I am addicted to Mt. Dew and caffeine, which I wouldn't mind stopping. Anyway, I am supposed to increase my dosage by 25mg per week until I reach 75mg per day. I am also supposed to go back and see my doctor before I increase the dosage beyond 75mg. I just hope I do not have the horrible side effects I have read here. Some of them I know I can deal with especially if they are temporary but the anxiety/depression/shortness of breath/lack of energy/morbid thoughts are the main ones that concern me. My psychiatrist said that with this medication I should drink plenty of water. He said that it could cause headaches and other side effects if I'm not sure to drink plenty of fluids with this medication. So, I am planning on hydrating myself really well today before taking it this evening. I'll post back and let you know how the side effects are going. Is anyone else on a combination of Lamictal and Topamax or on it for bipolar disorder? I'd like to hear more of your experiences.
-- By cmbandrwb | Reply | (6) replies | Private Message me
December 19th
2007
11:04 AM
Hi All, I am a 37 year old mother of 4, with a history of severe Hemiplegic migraines (up to 14 a month). I've been on Verapamil and Topamax for 7-8 months with a gradual increase of the Topamax to 150 mg a day. Before I start writing this I have to preface it with two things: First, Before Topamax I was one of those women my friends refer to as a "Supermom", I home school my kids and used to love it, we normally have a lot of fun and I have a successful, happy marriage. Second, on Topamax, I went from 14 migraines a month to 0. It didn't happen over night, they went away as we ramped up the dosage, but for the last few months I have had no migraines, I can feel it occasionally when my head is fighting one off, but nothing an Advil won't stop, and for those of us who've lived with trying to care for kids while having migraines (especially Hemiplegic) you may understand why I initially put up with the following: I started out with the tingling in my hands and feet (that went away in a couple of months), word finding difficulties (which never really went away, I just learned to accept it),occasional blurred vision which never lasts very long but which has been an issue the entire time I've been on the med, and weight loss ...I am 5'4" and was only 118 lbs to start with, and have nearly "disappeared" into a size 0 and 105 lbs, and it doesn't matter how much I eat, I've been trying 3 meals, snacks, cookies, candy, you name it, I can't gain weight. I was never nauseous, no diarrhea, I just don't get hungry... I had to start wearing a watch at one point to remind myself to feed the kids, because if they didn't ask, they weren't getting lunch until 2:00 because I wasn't getting hungry! Soda does taste like metal (fortunately I don't drink it normally anyway), and you do get loopy with one glass of anything alcoholic.
Then to add to the lovely appearance of skin and bones, my hair is falling out. Before Topamax I worked out regularly, I am even on commercials for my gym (recorded a year ago), since Topamax, I was so tired, depressed, and so afraid of losing weight that I stopped working out. Now a woman who has always made it a goal to set a good example for my daughters that a fit body is the goal, not a thin body, has her mother in law telling her that she looks "bulimic"! In August I noticed I was crying a lot, then I thought well, maybe it's the Topamax, so I started drinking more water and it went away... so I've been very careful to drink A LOT of water and only decaf tea while on this med, but apparently that wasn't enough, because a few weeks ago my husband pointed out that I stopped showering every day. I have been crying at the drop of a hat for a couple of months again, and I have never been someone to cry in public, I have even started crying in front of my daughters friends' mothers and near tears in front of her teacher over the littlest things... then last weekend I found myself with four hours to myself in my house for the first time in months and I was thinking about how I might be able to use it for unspeakable things like running away, or worse... if those aren't signs of a pretty severe depression I don't know what are, fortunately I recognized them and put them together with the memory problems, etc. As for the memory loss, there have been problems with that for months as well, my daughter has been telling me I "have a bad rememberer" , This weekend everything culminated and other people were recognizing the memory issues that I had been keeping private until now (including my husband). Before that, I would be in the kitchen cooking and forget what I was doing, I went to drive to a party this weekend and forgot where I was going, so I called a friends husband and he had to tell me four times where to go before I could retain it (at first he thought I was joking) and then I still couldn't remember the name of the place, only the # and street, I haven't been able to remember routes to places I used to drive... I'll find myself sitting at a light not sure where to go, and making mistakes with our money because I forgot whether I did or didn't pay a bill (something I've never done, we have always had excellent credit). On Topamax I went from feeling like an attractive, successful, good mom,with a happy family... to constantly stressed, even by things I had previously enjoyed doing, and a completely depressed failure... but I had no migraines. I have now been weaning off the Topamax for a few days. I was playing phone tag with my neurologist... so due to the urgency of the problem I took myself down to 100 mg a day. I have since spoken with my neurologist and I am going off of it completely... by the way don't ever discontinue this med without ramping off of it, doing so can cause a seizure. I am unbelievably grateful that I put 2 and 2 together the weekend I had time to myself and got lost going to the party and I already feel more awake, less tearful and depressed... I know that things will be ok anyway. I hope that anyone reading this who is having memory or emotional issues on Topamax and just brushing them aside (because they don't want to risk going back to the migraines or whatever), will get off this med. Please realize that this med could have cost me, my kids and my husband a lot more than my migraines ever will. I have never experienced depression before Topamax, and I can't say that I'm completely back to myself yet, but I hope that when I am off this med I will find normal again, and I pray it will be without migraines, but I know that I wouldn't wish these past few months that I've put myself and my family through on anyone. Now, I need to go take a shower :) , then I'm going to my neurologist to pick up some 25 mg samples to continue ramping off! Good luck to you all!
November 28th
2007
12:47 PM
I've been on Topamax (150mg/a day) for 4 years for migraines. At the start I had some of the common side effects: dropping things, memory loss, mood swings, weight loss. The weight loss evened out in the first year or so, and the other side effects went away in the first few months-mainly after my Dr. had me take it as one dose only at night, and increase the amt. of water I drink. I am still on it, and they just increased my does to 300mg/ a day for chronic pain. So far, no weird side effects, but I'll wait and see. I'm sure anything is possible. But after trying everything before for migraines, this was the only thing that worked, and was worth riding out a few months of side effects. I was honest with family and coworkers when I did dumb stuff, or had off the wall mood swings and got through it. Guess I may have to do the same thing again. Reading on her some many bad experiences, I hope some of the people starting it or thinking about, will give it a chance to work. I was desperate and so out of options, I am so glad that I did.
-- By carlaur | Reply | Private Message me
November 3th
2007
6:38 AM
I started Topamax October 12 my Neuro said start at 25 mg and work up to 50mg in the morning and 50 mg at night. The first week I was tired like most people have mentioned. Almost instantly Diet Coke tasted terrible. I was a little dizzy and light headed. DC still taste flat but the other symptoms have gone away. I have never experienced the tingle or weight loss. I am on a low does. No stomach problems for me. One thing is my cramps this month were 2x worse than normal . I am 45 and on Topamax for migraines mostly I think hormonal. I am going to give this a fair shot. I really have not felt more energy. I really wish it would help in that way. I am also taking wellbutrin and prozac for depression that runs in my family all the way from my Great Great Grandmother. I too have have a mild headache off and on when I would normally have a migraine and a advil took it away. I had to take an imitrex last night, and am hoping that is the end of this hormonal headache for the month!
-- By stephy45 | Reply | Private Message me
October 24th
2007
6:48 AM
Hello, everyone. I didn't know there was a page like this, but I'm glad there is. I've been on Topamax for 3 weeks because the medicine I was on for 2 years didn't do anything and the headaches weren't going away at all anymore; they were continuous. The first week at 25 mg I had the tingling for a day or two, the involuntary muscle twitches, the terrible mouth taste, and the chest pain. All but the terrible taste went away by the second week at 50 mg but I started getting wobbly legs and dropsy. I read an article somewhere where a person on Tomamax called the drug Stupamax or Dopamax and said anyone on it turned into a box of rocks. The box hit me at 3 weeks and 75 mg. I'm not wobbly anymore, I'm still irritatingly dropsy, and I am doing things that only a person with half a brain would do. Plus, my ears have been ringing for two days, and today I feel like I'm in a tunnel and everything is far away. I'm getting ready to call my doctor. On the OTHER hand, I haven't had a headache that lasted for more than a half hour in 3 weeks. So what's best? Going back to headaches or continue to evolve into a box of rocks?
-- By justforkhix | Reply | (2) replies | Private Message me
October 11th
2007
9:54 PM
I've been on Topamax since just Tuesday, 10/9/07. I find that I get very tired a couple hours after taking it and I have horrible nightmares and very dark thoughts, too. Diet coke tastes so HORRBILE which is bad because I loved my diet cokes, but then again I guess that's good b/c I need to stop drinking them anyway. My worst side effect is that I have horrible mood swings. Is this normal? Is this going to go away over time? Because if not, I'm going to stop taking it now. This is not like me and I am not going to subject my family to this - losing weight is not THAT important to me. Thanks for any help. :(
P. S. I'm taking 25 mg in the morning, afternoon and evening.
-- By mazzy0774 | Reply | (6) replies | Private Message me
October 7th
2007
9:26 PM
I have been on Topamax for about a month now. I take it b/c I have suffered from migraines since the age of three. I have not had a migraine since, and would normally have one five times a week. As for the side affects, the soda being flat was one that I noticed right away, and I had already done my research, so it was no surprise. Heartbreaking, yes, but expected. The tingling of the extremities is a big one for me, one of which I am slowly getting used to. I could stand to lose a few pounds, but have not seen if the weight loss thing really affects me; I think it really depends on the individual. Thankfully, I have not experienced any of the memory loss or blackouts. No major mood swings. My appetite has stayed the same. I have noticed that I seem to have some bumps on my lower leg that are not bug bites that I am going to ask the doctor about. I am a smoker, and wonder if this somehow could play a part with the Topamax and the bumps. Anyone? Overall, it's been a short time, but I have had amazing results for why I am taking it! I wish everyone well
-- By luvly7979 | Reply | Private Message me
September 30th
2007
6:37 PM
September 29th
2007
5:06 PM
I took Topamax about 6 years ago for migraines, and experienced no side effects. Just started it up again 3 days ago, and I feel like I am totally drugged and my head is spinning, can not drive, can barely hold a conversation, only started with 25mg, and can say that each day I feel a little better, but the only difference this time is that I am on Lexapro and my Dr. said the side effects could be worse till I get used to it..anyone else take this combination? And how long till I can function again?
-- By ka527 | Reply | (3) replies | Private Message me
September 28th
2007
11:36 AM
I just started taking Topamax about 2 1/2 months ago -- am up to 50 mg now, and had hit 75 when the side effects became so bad that I went online and discovered that my neurologists had been pretty lax with their advice. They told me that Top. was "a great drug for migraines" and that I might "lose a few pounds," and have "some memory issues at first" but that was it. I believed them and so didn't research further.
20 pounds later (I HAD been on a diet, and thought I lost the weight myself) I started experiencing sore throat in the morning and stomach pain (acid from Topamax). I thought I had appendicitus. So I hit the boards. Weight loss was from theTopamax (and my diet coup goes out the window) Appendicitus --probably not. Oh, also I can't be relied on to remember words or sentences or thought structure; or how to move thoughts into words. And it's not like the words are on the tip of my tongue, etiher. They are gone, as if they never existed. The oddest thing! Professional hell. Hair has yet to fall out. I'm going to have to wean myself off, I suppose, and get ready to ream out the neurologists. If I can remember their names or where they practice....
-- By arilew | Reply | (1) replies | Private Message me
September 22th
2007
7:46 AM
I've been on Topomax for about 3-4 months now. I've had memory loss, slurred speech, decreased concentration (I have to re-read something several times to understand it) tingling in the hands and feet, depression, increased anger, loss of appetite, weight loss. I'm now at the point where I have a rash on my leg, severe nausea, and abnormal bleeding. I going to follow up with my neuro and PCP to see what's going on so we'll see. My migraines have decreased from 3-4 a week to maybe 1 a week, so it has been worth it so far so I can function for work and for my kids as a single mother. I've suffered from migraines for about 10 years and can't take the pain no more!!! If anyone has experienced the nausea, rashes or bleeding please reply.
-- By mratcl02 | Reply | (2) replies | Private Message me
September 16th
2007
9:13 PM
Hi. I was on Topamax for about a year for severe pain in my foot. I had nerve pain on the front outside part of my foot so bad I could not walk. I am also a sufferer of chronic migrains and have been hospitalized several times a year for them. I stopped having migrains - didn't realize until now that it was probably the Topamax. I didn't know why they stopped and didn't know that Topamax was used for that. I took it for just over a year. 100 mg a day at bedtime. I lost 40 lbs, the pain in my foot went away, and I haven't had a severe migrain since. I have been off of it for abou 1 1/2 years now, but want to go back on it because of the weight loss and some other nerve pain I am having with my ciatic (sp?) nerve. I did experience tingling in my leg and toes and soda was flat. I didn't know what the leg tingling was from until I read this blog. I can deal with soda being flat because I really don't need the sugar!! I love Topamax. It worked GREAT for me!! The pros far outweigh the cons for me. But everyone is different!!
-- By lisielove | Reply | (1) replies | Private Message me
September 16th
2007
7:55 PM
I have been taking Topamax since 2002 for migraines. I started out slow with 25mg at night for a week then 50, 75 then 100mg after one month. The following week I was suppose to start 25mg in the morning. I received headaches from that. I only stick with 100mg at night and have not suffered from a migraine since. Unless I am hung over. I did get the tingling in my hands and now I hate soda. Which to me is a good thing for all the sugar it has in it. However, when my script runs out and it takes me two or more days for a refill, I get extremely sick. Must be a withdrawel thing. So do not miss more than one day.
-- By jsorokach | Reply | (3) replies | Private Message me
August 28th
2007
1:38 PM
I have been happy with the pills because they have taken away my migraines! I began on Topamax this May 2007 at 100mg per day until this Aug when I starting to have migraines again and my doc increase my dosage to 150mg a day.However, I think the increase in dosage has caused me to have nose bleeds. I was awakened by nose bleeding on two nights this past week. I see my doctor tomorrow to see if there might be another reason for the nose bleeds. The sleepiness was only a problem in the beginning, until I got use to the pills. The weight loss side effect is one I could use. However I have only lost 1 pound since I have started taking Topamax. Tingling in toes and heels, thirsty, taste change, upset stomach (must take a anti-acid with pill). No hair loss that I have notice. I am a bit depressed and right now don't want to have much to do with hubby. But he has gotten us into some serious trouble with the IRS. Which would cause depression, weight loss, anger, & loss of sex drive all of the things mentioned as Topamax side effects. I'll wait to see if any of these things increase before I stop the Topamax. Good luck to all!
-- By careaboutit | Reply | Private Message me
August 28th
2007
2:08 AM
I have been taking Topamax for approx. 8 months now - 50mg in the morning and 50mg in the evening. Was found to have a Cevernous Haemangeoma
on the front left temporal lobe which caused me to have Epileptic symptoms however never has full fits - just stroke like syptoms.
I have tried Epilim and all the other drugs. After taking Topmax i felt good for some time then the weight loss kicked in, some hair loss, pains in the right knee, tingling in the hands and under the feet. I could live with these however
i have been really battling of late with my urinary system. It is always as if i have a bladder infection, pain in the lower abdomen etc. Done scans etc. to check for stones - zero. Have decided to wean off Topamax and see if these
effects go away. The drug did wonders for my brain problem but the side effects have just gotten too much.
November 4th
2008
12:18 PM
Topamax is off label for weight loss. I was put on it after gaining about 35lbs from Seroquel. It took the weight off like it was supposed to. My dose has recently been stepped down because I'm back at my normal weight of 135 (I'm 5'11").
When I first started taking Topamax diet soda and other sugary things tasted really strange, which my doctor says he's never experienced before. I also had a numbness and tingling in my face and hands for about an hour or so after taking the pill for a while.
One more thing that I noticed about this drug is that while on it my vision went from perfect to needing to be corrected by glasses. I have read a few things about vision problems associated with Topamax but I am not sure if it caused my nearsightedness or not.
Thanks for letting me share my thoughts.
-- By melissakennedy | Reply | (1) replies | Private Message meM.