| Key to ratings for topamax: 5-Very Satisfied: this medicine cured me or helped me a great deal. 4-Satisfied: this medicine helped. 3-Somewhat Satisfied: this medicine helped somewhat. 2-Not Satisfied: this medicine did not work to my satisfaction. 1-Dissatisfied: I would not recommend taking this medicine. |
| Rating | Reason | Side Effects | Comments | Sex | Age | Time Taken | Date Added | |
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| 1 | Migraines | I'm positive it's Topamax that causes the twitching because I was on higher doses, then lowered down to 25mg 2X a day and the twitching stopped. Recently I was upped back to 50mg 2X a day when my migraines returned since I have now completed a migraine study that I was on for a year. Just WAIT until the new drug Levadex is released to the public! I was one of the LUCKY people on the study for a year. It's an inhaled drug like an asthma inhaler with the only side effects that it tastes funny and you just rinse your mouth out after you inhale the puffer. Get this, it kicked 99% of my headaches and migraines in about 10 to 15 minutes! Yup, I am NOT kidding! I am DYING now that I can't have the inhaler until the FDA releases the medicine to the public. It's been about a month now. Give it about two years for it to hit the pharmacy at least. I have tried EVERY drug out there and there is nothing like this! NOTHING short of a shot, and torodol shots don't work as well as this inha | I say feed this drug to the dirty pigeons! | F | 47 | 5 years | 2/5/2010 | 4 | migraines | My headaches were worse at first--but i stuck with it and then they improved significantly; tingling in hands/face/heel that is painful at times (this has improved since my doctor recommended taking vitamin B and B12); hair loss (this still hasn't improved...); fatigue in first two weeks only (it wears off significantly); loss of words in the first month (that wears off); eyes burning and dry, especially when I am in the sun all day; reduced sex drive; I now hate the taste of soda; dry mouth; slight loss of appetite | Most of the side effects truly wear off, just be patient!!!! Also, this medicine has really evened out my moods. It makes me feel a lot better all the time. I have heard this is the opposite for some people (they feel angry on it). You may feel your headaches get worse at first. Just wait--they will improve. Take vitamin B with vitamin B12 if you have bad tingling. This helped me a lot to reduce the tingling. It isn't completely gone--but it has helped. Others recommend bananas. | F | 25 | 2 months | 2/3/2010 | 4 | Migraines | Tingling in hands, feet, and face; depth perception; ten percent loss in body weight - which is typical with this drug | I started having migraines about 7 months ago and after many test the diagnosed them as genetic migraines. Being a very young teenager, my neurologist was weary to put me on this drug. My mother is a pharmacist and agreed to help me titrate up on the drug. I started losing my appetite while on 25 mg and titrated up 25 mg per week. I did not experience any help with the migraines (which were an everyday thing) until about a month of taking the medicine, which I got to 100 mg a day. It still did not get rid of them completely so we decided to bump up my dose to 150 mg a day. This is when I started experiencing the tingling and numbness in my hands, feet, and face. We went down to 125 mg a day and after continuing to be on this medicine it has helped me tremendously. If suggested, I would give this medicine at least two months to work. Like any other drug, it might not be for you, but it has given me my old life back - before the migraines. | F | 17 | 4 months | 1/31/2010 | 3 | Bipolarll BPD | weight loss .. which was great. Some tingling in feet that went away in time and lost words. I couldn't find what I was trying to say sometimes.. frustrating | Topamax worked ok for me, I liked the weight loss (finally a med that helps you lose weight!) I didn't like the fact I couldn't read (focus) on it tho.. that was frustrating, as was not being able to get thoughts out fast enough. I went up to 125mg a day. Would be willing to try it again tho. | F | 45 | 2 years | 1/31/2010 | 4 | Migraines | Tingling only when exercising or upping my dose. Possible abdominal pain, brain fog, lost words, weight loss, hair loss, ear ringing | I began to use Topamax close to a year ago for severe migraines that occured 2-3 times a week that last each lasted 1-3 days each. Imitrex was used to treat them, however it didn't always take care of them. I started out on 25 mg of Topamax, moving up 25mg about 4-6 wks out, once migraines would begin to reappear. It has dramatically changed my life migraine wise, however it has been an adjustment with the loss of words, and the slower brain. I am naturally a small person 5'2" and have struggled to maintain a healthy weight as I was a healthy weight before, I lost about 8 lbs. I have tinnititis from previous ear damage, so the additional ringing can get annoying, when it is quiet in my house, sometimes it feels like I can hear Cicadas outside in the trees all day long!! I think the one thing that has bothered me the most is the hair loss. I had a thick head of hair, and this past winter due to snow storms I had to up my dose twice in a short period of time due to the pressures. Everytime I wash my hair (everyother day), I lose about a handfull of hair. I do not have any "baby" hairs growing, and my hair is just getting thinner and thinner. I feel like I am getting really down this winter, and worry about depression, which seems to be a common theme on this blog. This drug has been a lifesaver, and you have to weigh the good against the bad, I cannot bear living with these migraines again knowing how I feel now, but looking at the other options out th | F | 41 | 10 months | 1/30/2010 | 3 | migraines | In the beginning, lost some weight, major loss of words, tingling in fingers and face, got sick easily, lethargic, frequent heartburn, nothing tasted good, eye twitching, and major impact on sex drive and function. I think the weight loss experienced from this drug is because it alters your sense of taste, but it comes back at least somewhat over time. Just eating a banana every day was enough to resolve the tingling for me. | After trying about everything else commonly prescribed, I was desperate to try something else for migraines, which I was getting several times a week. In the beginning this drug was helping me. I slowly worked up to 100mg, then when that stopped working briefly went to 200mg (too much for me - I couldn't function at work) then quickly back down to 100mg. But now I am getting migraines about as frequently as when I began taking this drug. I refuse to increase the dose - this stuff is toxic. I have decided (with my Dr.) to try to wean myself off of. I want my brain, sex drive and taste buds back. I am down to 75mg/day for a few weeks then will go to 50, 25 then be done with it. I can't wait to be off this stuff completely. | F | 39 | 3 years | 1/27/2010 | 1 | migraines | permanent depression | When Topamax was relatively new I was prescribed it at the age of 14 for migraines. At first I was fine with the medication and it worked well to help prevent my migraines from occurring as frequently. About 6 months later out of the blue I attempted suicide. I at the time had no history of depression and depression does not run in my family. After the attempt I continued to have severe problems with depression despite being taken off Topamax. I have talked to my psychiatrist and she mentioned that a few of her other patients had mentioned the same problem. I am now 24 and still plagued with major depression that requires medication just for me to function. I would be very leary of this medication. | F | 24 | 6 months | 1/24/2010 | 5 | Cluster Headaches | Tingling in hands and feet, Weight loss, slight memory loss | Please don't let the horror stories scare you away from trying this drug if it's suggested. All meds have side effects. If it's not right for you, then you can always try something else. I have always had hormonal headaches and miagraines but this past Sep I started having almost daily on/off severe pain that could make a person crazy. This went on for 3 months. After lab work, CT scans, and a MRI I was diagnosed with cluster headaches. After starting this medication I have had 2 headaches that I was able to treat with advil. I don't know how I could have kept going without it, my life had come to a standstill. If the side effects are just bothersome try a lower dose. It's a powerful drug, but it can give you your life back. | F | 32 | 5 weeks | 1/21/2010 | 3 | Bipolar | Loss of appetite, tingling tongue and feet, tight stomach, gas | It appears I am one of the few males taking this med and of the few who are taking for mood disorder. The med is very new for me. I am now on 50 mg, nightly. My mood has been swinging up and down since I started the med (not good), so cannot give it a 4 yet. It could be because I am titrating down from a high dose of Risperidal and Lamictal. I can feel why this is a med you have to go up slowly on. The side effects hit you pretty quick. The loss of appetite started by day three and I was only on 25 mg. I do appreciate a medication that has taken away the zombie sugar cravings! Now seeing a box of Cap'n Crunch turns my stomach! :) I am taking a multi-vitamin, and B-complex hoping to ameliorate the cognitive disruption (however as I write this I am using the spell check. LOL). Email me if you want to know more. I have a lot of hope in this med. It would be nice to be in control of my body AND my mind, at the same time, (it has been a long time since). | M | 45 | 3 weeks | 1/21/2010 | 5 | Bipolar II | tingling in nose and lips, loss of appitite, weight loss, diarreah, stomach cramps, shortened menstrual period, trouble spelling | i've only been on topamax a little over a week, but have noticed that i am no longer a "human garbage disposal," and only eat when i am truely hungry. i've lost nearly five pounds already. my mood swings are fairly stable, with a tendency towards light mania if they swing at all. the diarreah is annoying, and i now fear passing gas in public in case of an accident. the stomach cramps are lighter than asscociatiated with normal diarreah. i have had only one period so far on the topamax, but it was very light and lasted only 3 days. usually it is heavy and lasts 7. it was also five days late, causeing a lot of concern and two negitive pregnancy tests before showing up. [by the way, topamax does cause the pill to be less effective, consider other or additional forms of birth control.] the tingling was quite annoying at first, but i hardly notice it any more. my spelling was poor to begin with, but now it is terrible. | F | 24 | 1 weeks | 1/20/2010 | 5 | Migraines | Some cognitive delays early in treatment. Sleepy early in treatment. Possible loose stools due to drug. | Is anyone else having loose stools due to topamax? I am wondering if this is a common side effect I am on 250mgs a day and they seem to be getting worse. Has cured my migraines. I really cannot complain. I have noticed that as of late with a dose increase I have had some stomach issues. I had some beofre, but they are getting worse with a 50mg dose increase. | F | 30 | 1.5 years | 1/19/2010 | 5 | Seizures | When I first started taking it I had sharp tingles in fingers/toes and numbness around my lips, early on I also had strong memory loss, word recall issues, severe weight loss, and weird pains and hair loss. I started it in 1997 at 450mg/day- slow increase. I now have no side effects due to taking potassium supplements, vitamins and also drinking a lot of water. Even my memory and word recall are back to 'nearly' pre-topamax levels. I had to work at that though through brain activities. | Topamax was started after failing mutiple anti-seizure medications. It was the first drug to stop my grand-mal seizures so I found it to be a miracle drug despite its numerous side effects. I found that I could get rid of the side effects with some research-- potassium supplements, increased vitamins, ensure shakes for weight, lots of water, brain exercises for memory and word-recall... I'm happy to say that along with my other seizure medications I've remained (almost) seizure free and nearly side-effect free also for a long time. Topamax has kept me entirely grand mal free since 1997. I only have partials now which I'm still trying other medications to get under control. | F | 31 | 12 years | 1/15/2010 | 5 | weight loss, pain | extreme weight loss, cognitive issues, blurry vision, low libido. | I love this drug! I have to say it was a Godsend. I know all of the problems people have with it-I did not not have them. However, I did have and still have some cognitive problems. I actually approached "nirvana" with topomax. I'm not crazy. I'm an engineer, an executive. It helped me see things more clearly than ever in my life. I lost over 100 lbs and more importantly it helped me think clearly, with clarity. However, I agree that I was also cloudy at times which is really bothersome and scary. But I must say the good definitely outweighs the bad. I have an excitement for life that I have not had for a long time. I take 100mg twice a day (topamirate). | M | 49 | 2 years | 1/14/2010 | 5 | headaches and twitching eyelids | weight loss impaired speech in the beginning | This has been a wonderful med for me. My headaches are gone. I have actually experienced clearer vision, and better sleep. Yes, soda tastes awful, but I needed to cut back anyway. The delayed thinking and speech went away after about a month. I take 25mg in the morning and 50mg at night that helps with daytime fogginess. | F | 42 | 9 days | 1/14/2010 | 3 | Migraines | Skin itching at first, some tingling that has decreased over time, trouble finding words, takes 5 minutes for brain to get into concentration mode, takes longer getting ready in morning. These side effects would be extremely worse if I didn't just take the medication at night. I highly recommend only taking this medicine right before you go to sleep. This greatly minimizes the brain slowing effects. | Topomax has not helped with my migraines, but I have found it to be very helpful on other things. I used to have a couple of alcoholic beverages each night and now only have a couple a week, I lost the 10 pounds I have been wanting to lose for the past several years in 4 monthts without even trying because of Topomax relieving my crazy food cravings, and it has helped me have a calmer/more content demeanor about me accorinding to my husband and family. So I am going to continue taking topomax as a supplement to my bipolar medication. I found the maximum benefits for this purpose with the least side effects to be at 75mg. I highly recommend only taking this medicine right before you go to sleep. This greatly minimizes the brain slowing effects. | F | 31 | 4 months | 1/14/2010 | 4 | migraines | initial weight loss, eventually levels, tingling of the hands | different generics had completely different results. had to go on brand. mylan generic didn't work at all , | F | 40 | 6 months | 1/13/2010 | 1 | Migraines | Oh boy, where do I start? Unable to eat, I was a zombie, zoned out, confused, brain blips-I would forget how to do simple things, leg cramps, generally unwell | I can't believe I stayed on this drug for so long! I thought initially that it sort of helped the intensity of my migraines, but after 2 1/2 years finally realized they were the same! I still took the same amount of Imitrex. I really think this drug made me so stupid that it just didn't dawn on me. I lost 10 pounds right away, and I didn't need to lose anything for sure! It was awful--I made myself eat some just to stay alive--how sad is that?! I love to cook and eat, and there was no enjoyment in that anymore. Not to mention sometimes while driving, I would totally forget how to drive! Not safe with two little kids in the car! I couldn't exercise anymore, and I'm a runner! I hated that. After being off it for a while, I was able to run again and finished my first marathon this year. Take that, Topamax!!! The side effects of Topamax are extreme, and unless it's helping you in an extreme way, I would not advise this drug. You also have no libido--not good. Also, I would hate for any children to be on this--you cannot possibly do well in school on this. I couldn't even read a book--no concentration or ability to focus. I'm sure there are times when the benefits of this drug outweigh the side effects, but that's definitely not true for me. Also, I don't like being on a drug that makes me physically dependant. You could have seizures if you stop it cold turkey. I wouldn't take this drug again for a million dollars! | F | 37 | 2.5 years | 1/12/2010 | 3 | Epilepsy | Cognitive motor slowing, trouble finding words, trouble thinking, memory problems, pins and needle feeling, initial weight-loss, but you will regain this back. | Topamax is an effective anti-convulsant. However, it's hard to function normally while on this drug. The good thing is that it is mostly secreted by urine. As for it preventing migraines... HA! That's a joke... | F | 25 | 4 years | 1/11/2010 | 1 | Weight Loss | tingling in feet, hair loss, leg pain, migraines | My dr prescribed topamax to help me shed some weight gained from my antidepressant. I've not lost any weight (it has decreased my appetite, but that's not where the weight gain was coming from) and I have continued to gain weight. I'm now taking 100 mg 2x daily. I have tingling in my feet all day long (mostly in my heels) some hair loss, and I've actually started to have migraines, which I never had before. In addition, I also have knee pain at night (for example, if you asked me to bend my legs at all at night, I probably wouldn't be able to do it), and most nights my legs feel like sausages that have been overstuffed (that's the best way I can think of to describe it.) They aren't swollen but they feel as if they are. I'm scheduled to see another dr to take me off this and the original antidepressant because I just can't take all these side effects any more. I wish I had researched it more before she ratcheted up my dose so high. | F | 29 | 10 months | 1/10/2010 | 4 | Cluster headaches | Tingling in fingers, toes, heels of feet; weight loss; loss of appetite; ability to ignore cravings; constipation; extreme thirst; blurry vision; difficulty concentration; difficulty spelling at times; difficulty recalling words at times | Topamax completely took care of my cluster headaches, which were ruining my life. I started at 25 mg daily and tapered up to 100 mg over 4 weeks. However, my headaches are seasonal so I only get them in the fall and spring, so now that it is winter I am going to taper off of this drug because of the side effects. The weight loss worked for me- I lost 15 lbs (10% of my initial weight) in 4 weeks without trying. I was mildly overweight so the loss was good. Food tasted the same and I got hungry at mealtimes but I filled up VERY quickly. I am extremely thirsty on this drug, so I have been drinking up to 80 oz. water per day, which could contribute to my filling up quickly. I also noticed a decrease in cravings. I still get them sometimes but it is much easier to tell myself no. In the last couple of weeks my appetite has come back somewhat, and I've been losing more slowly. I still get tingles in my fingers and toes and my vision is blurry, especially at night, which worries me. I am a college student and the cognitive problems are making my life difficult. I can do calculus but I have a lot of trouble adding up easy numbers in my head. I take notes and look at them later and many words are misspelled. I have to read things several times to understand what's said. I have never had these kinds of problems before. Because my headaches are seasonal, dealing with the side effects for a couple of months is worth it, but I'd be careful about taking this stuff for long term migraines. | F | 21 | 6 weeks | 1/9/2010 | 1 | Bipolar 1/Weight Stability | the fact that this drug did nothing for me? | Topamax was prescribed to me when my other medications for my Bipolar and Gen. Anxiety disorder were making me balloon. I was told that this drug would help my medications find a happy balance as well as kill the constant eating and weight gain. For the first 3 weeks or so it worked and then I went right back to a large appetite. Even worse, I constantly asked my dr. to take me off of it since I didn't feel it was working for me, and he refused. Luckily I'm seeing a new dr. and he said the same thing I said, "Why are you STILL on topamax?". yup. | F | 19 | 3 months | 1/9/2010 | 1 | Migraines from dysautonomia | My 11-year-old daughter developed PARANOIA on Topamax. It was horrible to see her be afraid of her brother. She hid it from us for six months. We are together around the clock since she is unable to go to school. I saw her getting agitated, but did not see the paranoia until she had an emotional explosion one night. We got her off of it as quickly as possible. She was on 75mg. per day. She is thankfully recovering from the paranoia with the help of therapy. Her sweet disposition is returning, and she says her brother is nice again. | Please be EXTREMELY cautious if taking this drug. Side effects built subtly. She is a calm and good natured child. She was agitated, hypersensitive, aggressive and paranoid. I thought her illness was getting worse. It was the drug that was making her worse. She urinated constantly. Don't let this drug ruin relationships. Get off of it if you notice any changes in yourself. | F | 11 | 7 months | 1/6/2010 | 4 | migraine | Vertigo nausea possible rash taste change tingle weight loss | No matter the side effects. So far the benefit is better than giving it up. I also have TMJ and my apparatus in my mouth aggrvates my migraines more. Topamax helps give continual medication. I also use Amerge for pain | F | 57 | 5 years | 1/5/2010 | 2 | migraine headaches | tingling hands and feet, any amount of caffeine causes my face to tingle and/or go numb | It took me a good 6 months or so to determine that it was topamax+caffeine that caused my face to go numb. For a long time, I thought it was topamax alone. I have been able to virtually eliminate the problem by eliminating caffeine. | F | 30 | 1 years | 1/2/2010 | 1 | Migraines | Frequent 'presque vu', disturbed sleep because of pins and needles in feet, extreme weight loss, eventually debilitating paranoia | My first stint w/ Topamax lasted six months and I lost 50+lbs which fueled my eating disordered behaviors. I found myself addicted to the appetite suppressing effect of the drug and put myself back on it but it became unbearable quickly due to the intense paranoia it would cause. Symptoms were especially difficult to manage during any change in dose. I did have fewer migraines while on the drug... | F | 19 | 1 years | 1/2/2010 | 5 | migraines | dizziness,tired,weight loss | Topamax has for the most part made migraines disappear. I do have occasional stress headaches and use OTC migraine medication. It also stabilizes my weight which is an additional bonus. | F | 35 | 6 years | 12/31/2009 | 3 | Migraines and Weight Loss | Soda tastes flat, a little forgetful, tired after taking pills. Nothing bad. | I haven't experienced any side effects that are so bad that it would cause me to quit taking the Topamax. I'm looking forward to increasing my dosage (I'm currently on 25 mg twice a day for a week) on Saturday so that I can lose the close to 40 pounds I've gained over the last 2 years due to fibromyalgia meds. | F | 41 | 8 days | 12/29/2009 | 2 | Mood stabilizer/bulimia/binging | I experienced no side effects because this medicine did nothing for me. | I have been taking 100 milligrams of Topamax twice a day for 2 months now, and absolutely nothing has happened. There have been no effects, either good or bad. This drug just doesn't do anything - it must be a sugar pill. I was hoping for weight loss even if it made me dumb and made soda taste bad, but it just did nothing. Oh well. | M | 27 | 2 months | 12/29/2009 | 1 | Daily Headaches after Accutane | Crying episodes, Mood swings, spacing out - staring at things in front of me without a thought in my mind, depressed feeling, unexcited about life, still have headaches, lethargic, eyes feel swollen and sight is blurry at times, mentally not all here. | So, I have only been on the meds briefly for 3/4 nights @ 15 MG a night, but have already started feeling as if this medication is affecting my life. I honestly am not getting any work done at work, I feel lethargic, stupid, and I can't concentrate on what is in front of me. This is not typical of my personality at all. I am usually a go-getter and a perfectionist. I am mentally unstable at times. I cry and just want to curl up into a ball. I don't have any urge to want to make other around me happy (not typical) and very drained and lethargic around 2:00 in the afternoon. I just stare at the screen in front of me...waiting for the time to go by. My sight is blurry, not double (I don't think) and they appear as if I have allergies, which I do not. I am going to stop taking the meds in hopes that the headaches subside naturally...like most things in this world SHOULD and DO if you give them time. | F | 27 | 4 days | 12/18/2009 | 1 | Daily headaches and migraines | dizziness, tingling in fingers and toes, confusion, constantly thirsty, soda tastes bitter and gross | Topamax was awful! I started off taking 50 mg/day. I didn't feel a difference. The doctor upped my dosage to 100 mg/day. It made my headaches worse. It also made me constantly thirsty. I couldn't feel my fingers and toes when I would wake up in the morning. Coke, my favorite drink, tasted nasty. (I eventually gave it up, which is probably better anyway.) I just didn't feel like myself. I don't recommend this medication. | F | 25 | 4 months | 12/11/2009 | 5 | Bipolar II (rapid cycling) | Nausea all day but could also be due to Yasmin that I started taking at the same time; anxiety in the first two weeks; difficulty with word retrieval; stumbling over my words; silly typos; a bit emotional (could be Yasmin); weight loss; stopped craving sugar and carbs; | I think Topamax is wonderful! I was on Epilim (sodium valproate) for 15 months and although it helped stabilize my moods to a certain extent, I gained 40 pounds and experienced severe fatigue and brain fog. I have never felt so stupid in my life! I experience only about 10% of this brain fog on Topamax which I can cope with plus I have lost 11 pounds in just 6 weeks. It is wonderful to be freed from the binge eating and shopping sprees that I was prone to before. I feel like the real me has emerged from bipolar hell - a calm, in control, happy person who is in touch with the world. It took me 28 years to get the right diagnosis for my condition and 2 years to find the right drug... what a miracle! I am so grateful! | F | 44 | 6 weeks | 12/10/2009 | 1 | Epilepsy | This medicine controlled my seizures but caused permanent brain damage. while I was on it, I felt my mental capacity deteriorate, I had problems finding words, I would start a sentence and I would forget what I was talking about. I had this numbing sensation, double vision, saw trails, insomnia, anxiety. Simply awful. | THIS IS THE MOST HORRIBLE DRUG I HAVE EVER TAKEN! It controlled my seizures for the time I was on it but caused permanent brain damage and dumbed me down to the point that i never fully recovered. | F | 43 | 1.5 years | 12/2/2009 | 3 | Bulimia/weight loss/mood stabilizer | In contrast to most views of Topomax on here, I have had little to no side effects. I take 100 mgs twice a day. It makes me drowsy, but that effect is wearing off. From what I've read, the main reason I don't have side effects such as tingling sensations, numbness, hair loss, and mental difficulties is that I happen to take vitamin supplements already that Topamax seems to deplete or require more of in the body. These supplements are: Multivitamin, Vitamin-B Complex, Vitamin-D3, and Flax-seed Oil capsules (Omega-3's). For some reason some or all of these supplements prevent most of the unpleasant side effects associated with Topamax. | I am pretty excited about Topamax, especially because it just went generic as topirimate so now it's really cheap. I am really, really hoping this drug will give me some relief from my binge eating disorder which makes my life kind of stressful. Losing a significant amount of weight would definitely be nice, but it would be even nicer if Topamax could ease the struggle about binging/purging in my MIND. I'm hoping this won't just be a band-aid, but will be a multifaceted component to my emotional recovery. | M | 27 | 2 weeks | 12/1/2009 | 1 | Migraines | INCREASED MIGRAINES, constant migraine, dizziness, nausea, blurred vision, speech problems, memory problems, mood swings, weight loss, loss of appetite, twitchy limbs, ringing in ears. | I have lost 10 pounds in the last week, but I have had a severe migraine since the morning after I started taking it. Seriously, straight through for 7 days, even right now. My eyes were blurry and while I was at work yesterday I just forgot how to talk. I was shaky, nauseous, almost incoherent and felt like passing out. I ended up in the ER not to much later, my neurologist told the ER to tell me to stop taking it. Before this episode yesterday I noticed I was always on edge and moody. I couldn't concentrate, it could be due to the constant migraine or this medication. Either way, as great as the weight loss is, I can not continue to take this medication. | F | 24 | 1 weeks | 11/29/2009 | 4 | epilepsy - partial complex seizures | weight loss, inablity to spell and read. confusion | The topamax did stop the seizures and I lost the 40 pounds I gained when I was on depakote but it impaired my ability to comprehend words. I was no longer able to spell and I would forget words when speaking and writing. It also eliminated my appetite which I didn’t mind but I wasn't eating a healthy diet because I wasn't eating much at all. I no longer take it and am now on lamictal and keppra. | F | 43 | 3 years | 11/28/2009 | 5 | Rapid-cycling Bipolar--NO HCTZ!!!!! | HUGE CAUTIONARY WARNING NEEDS TO GO TO ALL USERS ASAP NO HCTZ!!I WAS PRESCRIBED HYDROCHLOROTHIAZIDE FOR MY BLOOD PRESSURE MED.CAUSED CHRONIC VERTIGO! 4 DR.'S 2 ENR SPECIALISTS LATER,ICONSULTED A PHARMACIST) REGARDING MY CONCERN THAT THE SERIOUS VERTIGO SITUATION WAS BEING CAUSED BY A CHANGE IN MY BP MEDS.(THAT WAS AN UNBELIEVABLE 7 MONTH NIGHTMARE EXPERIENCE).I'VE BEEN REFERRED TO NEUROTOLOGY FOR FURTHER TREATMENT JAN/10?).ALL REVIEWED MY RECORDS (INCLUDING TOPAMAX (AKA TOPIMIRATE) PRESC))& SAID NOT SOURCE.I FINALLY DEMANDED NEW BP MED 76 HRS AGO FROM GP;WHAT A DIFFERENCE! DO NOT TAKE HCTZ W/TOPAMAX!!!! I AM NOT 100% BETTER...BUT I FOUND THE SOURCE (100% SURE) | NO HCTZ!! MAY CAUSE SEVERE CHRONIC VERTIGO ISSUES NOT REGOGNIZD BY HEALTH CARE PROVIDERS OR PHARMACISTS AS ISSUE. | F | 49 | 6 years | 11/27/2009 | 1 | Bipolar I episode | Suicidal thoughts, dizziness, precipitatesd drop in mood, uncontrollable blues and feeling that my entire being had been torn away and stored into a freezer. I had racing thoughts about all sorts of things to end it. I wasn't depressed, just EMPTY. Like in your deepest hole. | It's a drug too new and I don't like being a guinea pig for a drug that my doctor can't really tell me the side effects except a bunch of MAYBES. After that, I'm never trying a super new new new new drug. Without counting the other possible side effects I read about it. The worst thing ever. | F | 25 | 1 weeks | 11/24/2009 | 4 | Migraines AND seizures | tiredness, lethargy, drowsiness I am on 200mg a day and can't beleive anyone gets any relief from 25mg. The only thing I don't like about Topamax is that the migraines it doesn't prevent are 10x worse than migraines off, but I have 10x less frequent headaches, it's as if my head just stores up the pain. | I am blind and accidentally mixed-up my medicines overdosing on Topamax, and other than the lethargy and drowsiness this was the only time I had any side effects | F | 27 | 2 years | 11/22/2009 | 4 | depression/alcoholism | sleepiness, loss of appetite | I've only been on this for 4 days. But already alcohol is starting to loose it appeal and I feel optimism that this drug is really going to help me kick bad habits. I feel a little tired, but my doctor said that will go away in a few days. I'll update as time goes on... | F | 34 | 4 days | 11/22/2009 | 4 | Bipolar | Weight Loss, Confusion & Sleepy all the time | I have to say that I really like this medicine. I take it with Effexor XR. I actually feel calm. I'm not compulsive, and running around like crazy. I can sit still. I'm also not eating the entire house anymore. I always use to be small and skinny. So it will be nice to loose this extra 15 lbs I stacked up in the last 2 years. | F | 24 | 5 days | 11/22/2009 | 4 | Chronic Migraines | Tingling in fingers, mood swings, forget some words (not too bad), spaced out feeling, lack of motivation, weight loss. | Had migraines all day every day, complete with debilitating nausea, for 3 years. Was put on low dose of topamax (25mg) and reacted badly: after three days, I spent one day completely spaced out, not really sure what was going on, awful mood swings. The doctor lowered the dose by half and I was fine. The spaciness was gone, and all the other side effects went away after the first couple of weeks. After two months I was starting to get migranes at night, so he upped it back to 25mg, but this time with half taken in the morning and half at night. As long as I take it EXACTLY 12 hours apart, I just have some finger tingling, weight loss, forgetting a few words (not too bad, and I'm a writer), and a general lack of motivation / lethargy (which is annoying). But, I'm expecting that to go away in a few weeks like it did last time. I can actually go to work all day and work out at the gym and live a life without horrible migraines and nausea, so these side effects are really nothing compared to what I was living with before. I really do have to be careful about the timing of the medicine, though, because one day I took one dose a couple hours late, and the next day I was unusually aggressive until the combo dose wore off -- or at least that's what I kinda remember, because that whole day is a little fuzzy. This is definitely a strong drug and direction have to be followed exactly. | F | 28 | 3 months | 11/21/2009 | 2 | MIgraines | Initially nausea, loss of appetite; Then: excessive weight loss, exhaustion, cloudy thinking, poor coordination; and most recently: Paranoia, hallucinations, aggressive behavior, angry outbursts, placed in mental health facility. | I am married to the man who took this medication. From my perspective: The past month has just been hell on the whole family. When my husband began hearing and seeing things that were not there I feared it was another medication, the fentenal patch, because he had been taking topomax for some time. His symptoms got worse quickly. He was not eating, sleeping, became angry at times and at other times was a sweet-heart. He would be hot, then cold and shiver. He became paranoid, thinking people were coming to hurt us. He even called the police telling them there were several men sneaking around the yard (we live out in the country)swearing he could here them talking on walky-talkies. The mood swings were terrible- everyone was walking on egg shells not knowing what to expect next. It got to the point where he was shoving one of our kids out of the way to "get" whatever he thought he saw. He also became physically combative with me when I tried to stop him from going after "them". I finally had to trick him into going to a hospital where they sent him to a "mental facility." Once there he was immediately sent up to ICU, for 3 days, as directed by the psychologist. He weighed in at 125 pounds-well below normal weight for a man that is 5'11". During his stay at the hospital, he was taken off both fentenal patch and Topamax. After returning home he began taking the Topamax again and within two days he started talking to people that aren't | M | 35 | 1 years | 11/21/2009 | 2 | fibro pain | turned into a moron. Really. Can't think straight. Can't talk right. Movement takes thought, like bringing a spoon to my mouth I have to think about first. Really REALLY tired. Basically I feel fall down drunk. I'm also getting dizzy and tinges in my face and fingers, but I can deal with that. | Only taking it 2 days so far, but I'm worried I'm going to lose my job if I don't stop taking it. I can't work! It's too much with the memory and not being able to think. | F | 32 | 2 days | 11/20/2009 | 1 | bipolar 2 | Worsened my depression considerably. Increased irritability, angry outbursts, negative obsessive thoughts. | It took less than 2 weeks for my symptoms to get really awful. I tried to stick it out for 2 more, and only made it 1 before I threw the bottle away. | F | 32 | 3 weeks | 11/19/2009 | 5 | Chronic Daily Headaches | Weight Loss, limb tingling, loss of short term memory, felt stupid, "phantom bladder infections", achy legs | Topamax worked great for my daily headaches 100mg a day, I lost 20 pounds which was also great! BUT the side effects made me give it up. I could handle the tingling and the aching. But the stupidiness was unbeleivable, I would forget the simpilest things and at the worst time. And then the phantom bladder infections started after 3 months, symptoms would last 2 - 3 days and then go away, this would happen 2 -3 times a month. This was the final straw for me even though my doctor could not say it was because of the topamax, I knew it was. Sure enough I weaned off the topamax and have not had a "bladder" infection since.It has been 8 months. | F | 44 | 6 months | 11/18/2009 | 1 | Update from my 9/30/2009 post | Update from 9/30/2009 post about my daughter. | When I posted on 9/30/2009 my daughter was being weaned from Topamax- she has been completely off of it for three weeks now.What a difference!! It took 6 days at 1/2 the dose for us to begin to see a change from there it continued to get better and better. Her happy fun personality is back. You can reason with her. She is not a stressed out mess.She is not quick to anger. She is starting to have some realization of how she behaved while on Topamax- and that weighs extremely heavy on her mind and heart. I daily berate my self for not contacting professional help earlier. I look forward to the day when I turn on the TV and this poision has been removed from the market. If you take any thing away from this, let it be this; research any and all medications your family and friends are prescribed- research before they take it and research everytime a prescription is filled. The good news is it was finally figured out she is off of Topamax and she is moving on with her life......her husband well thank goodness he stuck around too! | F | 41 | 3 years | 11/15/2009 | 5 | Seizures | Cognitive Effects | I don't have seizures, but if I miss a couple doses, I will have seizures. So, I have to make sure I take it as prescribed. The cognitive effects don't seem as bad anymore, or maybe I'm just used to them...I have been taking it for a long time. That's kind of scary, though, if I'm just used to the cognitive effects. I haven't had a migraine for a long time and I noticed that this medication is used for migraine prevention. That might explain my lack of migraines, which means it's effective (for me at least) in preventing migraines. That's a nice plus. | F | 37 | 8 years | 11/8/2009 | 1 | sciatica/nerve pain | i was on this drug for about 6 mos.I lost word finding skills,was so dizzy I walked with a cane,or was helped by my children.I lost 30lbs,still have hair loss! I have been off it for a month and a half,and still have difficulty finding words,and some dizziness remains.While on it,I couldn't eat..would gag or throw up when I tried!My blood pressure dropped very low also,and I had eye pain and vision problems.I am seeing a retina specialist this month,I pray it didn't do any permanent damage.My Dr. only told me about the weight loss..NO other s/e's! I think this drug should be taken off the market! I now see why others call it dopomax! I was stupid all the time I was taking it!It leaves you in a fog...Thank God I'm now off it! I no longer see the neuro that prescribed it,it was my family Dr. that caught it!My advice to any who think of taking it...RESEARCH IT FIRST! | It may be good for some...but do your research! | F | 66 | 6 months | 11/8/2009 | 5 | Migraines | Tingling, Weight loss, Memory loss, Fatigue, Slurred speech, Hair loss | I started Topapax 6 weeks ago after I was taking Imitrex almost daily and experiencing rebound migraines. I started at 25 mg. and moved up to 100 mg. over 4 weeks. Immediately I noticed my appetite was gone and I was in a fog. My weight dropped 7lbs. in a week which was a good thing. I'm a Director for a major corporation so I researched the side effects for a few months prior to taking the medicine on the advice from my neurologist. The fact was either I was going to miss work for migraines or deal with short term side effects and not suffer from the migraines. The hair loss was short term, over the first four weeks and it seemed to stop.At the six week point my appetite is back more, not completely but I do get hungry more than I did initially. I am still losing weight, my fatigue is gone and my memory is completely back to normal. My doctor told me there is a "hump" to get over with the side effects and I feel great. I had one migraine in the past six weeks when I went from 75 mg up to 100mg and one Excedrin migraine took care of it. I assumed it was a side effect of moving up in milligrams. Normally I would have 3 per week without Topamax. Good luck to everyone and stick with it.I plan on continuing with the Topamax, I can't take the pain of having migraines multiple times per week and Imitrex would spike my blood pressure which is normally low. Scary. | F | 30 | 6 weeks | 11/7/2009 | 1 | daily migraines | weight loss, memory loss, mood swings, agitation, insomnia, "moving" lights | I was put on topomax when i was a sophmore in high school and was on it only for a few months before my neurologist decided to try a different medication. during this time i lost my appetite and lost weight, and i already only weighed about 95 lbs. my memory loss was so bad that i couldnt remember the simplest things, making every day frustrating and making school nearly impossible to do well in. my mood swings and easily agitated personality caused my friendships to struggle, as they thought that i was using the medicine as an excuse to get out of things if i said that i couldnt/didnt remember about it. i had problems sleeping every night and often didnt get to sleep until 2-4am, had problems staying asleep, then had to get up at 6am to get ready for school all over again. i stopped opening my eyes at night due to the swirling lights that i saw whenever i looked at a window that had a light on inside, a stop light, a street light, a reflection of some sort of light on something... they lights felt like i was hallucinating and they caused dizziness. i am now a freshman in college and i'm still having memory problems, from what i believe is a long term side effect of the topamax. in addition to all of this, the topamax only slightly helped my migraines. | F | 18 | 7 months | 11/4/2009 | 5 | Hormonal Migraines | Tingling (Potassium Fluctuation), "Topamax Moments" (knowing I want to say a word, but not being able to pull it out of the file of my brain), and at higher levels - trails of light periodically along with a loss of appetite. | This medicine works. It's been a God-send for me in terms of controlling the length of time my body will entertain a migraine, along with the severity. I have been using it for over five years. Each person is different and each drug has side effects. What I can say, is I've been at 400 Mg and 50 Mg - back and forth - and 100Mg seems to be the perfect place for me. I can keep my appetite. When I'm having a "Topamax Moment", and muddle a word - I know why and I openly share it with whomever I'm amusing. It sure beats four days of not being able to converse at all. If you are coming here looking to see if you should give this drug a shot, I personally recommend having a heart to heart with your MD about it. The way I see it is - if you take this daily and allow yourself a good 14 weeks to let it settle in, you may be able to get on with your life in a way that's not possible when you are migraining. | F | 33 | 5 years | 11/3/2009 | 4 | Migraines | Nausea, acne, prolonged mentrual cycle, tingling sometimes in my fingers, cannot taste carbonated drinks, some taste flat while others taste tangy, in the beginning i definitely had the metallic taste in my mouth but that went away pretty quickly, hair loss, memory loss, floaty/spacey feeling, very irritable. | i have to say, this drug really has grown on me, only because i went from 3 to 4 migraines a week to about 1 every 2 weeks now. the doctors goal was to bring them down to about 1 or 2 a month hopefully less. i started out at 50mg, in the beginning it really messed up my menstrual cycle it was like i constantly had my period for at least a month and a half. ive been extremely irritable and moody, which you definitely need to watch out for because it really comes and goes but it can be pretty intense. in the beginning i had the metallic taste in my mouth bad that went away pretty quickly, and over the first few weeks was really hard because thats when you are starting to get used to the spacey feeling. it can be extremely frustrating, especially depending on what you do for a living, it can be a nuissance. the main thing that has really been hard for me but ive been trying hard to deal with is the nausea. most days are ok but for the most part i constantly feel sick to my stomach and its really hard for me to eat, or i forget to eat just because i feel sick. i guess id rather feel this way instead of the excruciating migraines but its a give or take relationship with the topamax. obviously this s/e is what is leading to the weight loss for me. started out at 150, im down to 134 after 2 mos and its mainly bc i cant eat w/o feeling sick to my stomach, i never vomit, though. the other thing is the hair loss, i can deal bc i had a lot of hair but it really does start to | F | 25 | 3 months | 11/3/2009 | 2 | Migraines | full body numbness, tingling in hands/feet, light sensitivity, loss of appetite, ringing in ears, moodiness, memory loss, feeling like an idiot all the time | 50 mg. It's probably not directly responsible for the moodiness; that may merely be a result of feeling like an idiot all the time, which is caused by the memory loss. I struggle to remember the most basic words, dropping off in the middle of a conversation and sounding like a complete moron when I can't remember my own phone number. There are random days when I almost feel like I'm stoned, really out of it and completely confused by everything. I can no longer drive/open my eyes at night, as the contrast of bright lights with darkness completely blinds me; there also seem to be rippling lines coming off lights, completely blurring my vision. I weigh 100 pounds at 5'7", no longer require numbing medication at the dentist, and can barely hear conversations over the ringing in my ears. Drinking alcohol makes all of this ten times worse... and to top it off, my head still hurts. Thanks, topamax. | F | 17 | 6 months | 11/1/2009 | 4 | Migraines | Weight Loss, Slight memory loss, especially in terms of vocabulary, Mood swings | I was suffering from multiple daily migraines, and was prescribed this by a neurologist, as well as imitrex. After the first couple of weeks I immediately noticed the memory loss as well as the weight loss, though that was a small price to pay for living a pain free life. The pain was beyond description, so it comes down to how bad you want relief. Im very grateful to have been prescribed this, even if I do sound rather uneducated at times when I blank out during a conversation. Another thing i noticed was the first couple of weeks i started taking this, I would have mood swings where i would be depressed for no reason. I know it was a side effect of the medication because im not an emotional person, and its unlike me to be depressed like that. It went away though. Good luck. | M | 24 | 6 months | 10/26/2009 | 3 | daily chronic migraines | vision is messed up, brain is scrambled, i weigh 110 lbs,eye twitches,still have migraines although not "as bad".words are hard to find,feet tingle(thats SOOOO annoying!!!)i think maybe i should carry a picture book with me so when i forget things i have pix(it can be funny at times..you really have to laugh at yourself). | I started taking this about 8 or 9 years ago at the time when they were just starting to discover that it worked for migraines(before they used it as a fad diet pill). I went from 100 mg to what i am now at 400mg a day.I would have thought that i wouldn't be getting any side effects now having been on it for so long, but in reading everyones comments here i can see that maybe that is not true! For the last 1 1/2 yrs, my left eye has been twitching and i could never figure out why(dr blew it off). I have had migraines ever since i was 9 after my bike and i had a run in with the back end of a sports car head first.I still eat imitrex to help "tone' it down.It kept the migs at a point i could tolerate and when they were past that the imitrex took over. Would i rec? Prob not. | F | 49 | 9 years | 10/23/2009 | 5 | Seizures | I have been on this medication for so long now I barely notice the side effects anymore. The main side effects I had were not being able to come up with words I was thinking of and being distracted. I've gotten used to that by now though. I switched from Depakote to Topamax and lost about 50 lbs in a very short amount of time. I had gained a lot from Depakote,but foods def taste different on topamax. | I am very happy with this medication. I have been seizure free for almost 10 years and will continue on this until my dr feels ok taking me off. | F | 27 | 8 years | 10/21/2009 | 4 | Daily Migraine Headaches | So far,not many side effects, starting out very slowly. I am up to 50mgs and have experienced tingling in feet at night. Noticed a little bit of agitation when I first increased, so I went back down for a couple more days. This helped. I think increasing slowly is key!! | I have already noticed a decrease in the intensity of my headaches. It is odd, I will get that first initial stab of pain and then all of sudden it lessens when before it would be time for bed. I am holding out hope for this drug. After reading all of these poor reviews, I did not want to go on it, I fought it, but I also know after trying almost everything else, I had no choice. If your headaches are controlling your life like mine are, sometimes you have no choice. If already I am seeing a difference on 50 mgs I am hopefull I will not have to increase too much. I will post again after more time. Everyone is different. You may handle this medicine just fine and you may not. | F | 36 | 4 weeks | 10/9/2009 | 1 | Mood stabilizer/depression | metallic taste. I felt like a zombie and was totally disassociated from the world. I was on it for 2 years which are actually lost to me because I can't really remember them. | It did help stabilize my mood if being a zombie and being totally unaffected by anything is what you are going for as a result of a prescribed medication. The withdrawal symptoms when I quit taking it were unbelievable I felt like a heroin addict. Sweating, shaking, dizziness. I could have curled up into a ball and died. | F | 40 | 2 years | 10/8/2009 | 3 | Migraines | I was on Topamax on and off for a span of ten years. In the last bout of it, I noticed that I was losing my short term memory. I couldn't remember to do the simple daily things in life, i.e. shutting off my car before I got out.. losing my keys, ect. Since then, I have been prescribed ZONEGRAN in place of Topamax. It has been a life saver. There have been NO side effects whatsoever. | While Topamax did the job- there was a price to pay. Extreme tingling in the arms and legs, memory loss, slurring of the words, terrible word retrieval. | F | 24 | 10 years | 10/7/2009 | 1 | Chronic daily migraine | Extreme insomnia, lack of appetite despite intense hunger, some manic symptoms, increased sex drive. | I could not wait to get off of this drug. It ruined my sleep, which was good before (while taking Depakote). I have been off it for two weeks but still need sleeping pills to sleep even 5 hours (even after switching to taking it during the day). I lost 5 lbs., but only weighed 100 to begin with. It only helped somewhat for headaches. I was up to 75 mg., went down to 50 but had same symptoms. My pharmacist said it has a five-day half-life, so give yourself time when you quit. It will still be in your system for a week or two. | F | 56 | 2 months | 10/5/2009 | 5 | Reflex sympathetic dystrophy | memory loss, hair loss, weight loss, attention span loss I seem to slur @ a high dosage, not be able to find what I want to say or be able to find the right word. | This medicine was not a cured but does manage my pain during the winter months. The highest dosage I've ever been on was 1600mg and I weighed in @ 150 lbs and droped to 98lbs. I use it during the fall, winter and spring and come off it during about the end of April and go back on it @ a low dosage starting in September and go up to 200 mg twice a day. If I have a flair up the dosage increases! I come off of it because my mind needs a rest and my hair seems to get week. | F | 22 | 6 years | 10/4/2009 | 1 | migraine prevention | Severe mood swings, agiation, mental impairment | My now 20 year old daughter began taking Topamax a little over 3 years ago. She would take 50mg 2x a day- In June of this year-with her migraines coming more frequently and more painful she was put on 100mg 2x a day. Her moods became uncontrolable.She was married on July 18,2009-her husband was telling us that she would flip her switch-we blamed the stress of -college-job-newlywed-until we finally noticed how bad it had gotten and thought maybe she had some kind of mental issue-maybe a bipolar disorder-I called our insurance Health advocate-I did not know where to begin to get help-one of his first questions was what medications she was on-When I said Topamax- he said that is a mood elevator-lets start with that-me and her father were stunned-we look back and over the past 3 years and had failed to notice the gradual change in our daughter blaming many other things-highschool-boyfriends-adolesence, but were forced to when she started taking 200mg a day. Our daughter is 5'3'' and 104lbs-she was being overdosed. If we would have read the pamphlet and least one time- we would have seen the warnings right on the pamphlet/Mood Swings/Mental Impairment/Agitation/Possible Suicide..Suicide- Thank-God suicide did not happen. She is being weaned from it right now. It will be a 2 week weaning process and I don't know how long before this poision is out of her system. We look forward to seeing our daughter and her old self return. | F | 41 | 3 days | 9/30/2009 | 3 | Migraines | Tingly in my arms and legs. Twitching in right eye. SEVERE joint and muscle PAIN. | In the beginning it did help the headache. But then I too have felt "Stupid" as some call it. Can't remember simple things or names or words to finish a sentence. And for two years I have had muscle and joint pain, had x-rays and tests, they say go home your fine and now read that one of the side effects is joint and musce pain. Called my Neurologist today and he said no one has told him that before!?!? I am now going off the drug and unless your life is unbearable due to the headache I would not recommend this drug. Please email if you like I know more of you have had the same symtoms. So I did give the drug time after 5 years but now can't deal with it anymore. The PAIN is to great. | F | 53 | 5 years | 9/29/2009 | 2 | chronic migraines | confusion, trouble with word usage, weight loss, metalic taste in mouth, diarrhea, twitching in eye & cheek, hair loss, memory loss, fatigue, problems with comprehension & attention | I was prescribed 50 mg of Topamax 2x daily with the goal of increasing to 100 mg, 2x daily. I have suffered from migraines since the age of 6, and was placed on Topamax as a "last resort" since my migraines had increased in frequency (daily migraines.) The Topamax DID stop the migraines. That part was wonderful. The weight loss was also nice. However, I experienced almost every possible side effect of the drug. I am a college professor and found that I could not recall words during lectures, could not respond to students' questions (they had to repeat their questions 2 or 3 times before I comprehended), and essentially felt like a zombie walking through life. I also experienced extreme fatigue, twitching in my left eye and cheek, hair loss, diarrhea, and of course memory loss. I am a big soda drinker, but found all sodas (and other liquids in general) to taste like metal. I had no interest in food, and found all foods to be tasteless. It was rather scary to be in a confused "cloud" at all times, so I decided to stop taking Topamax and treat the migraines daily instead. I have taken many, many drugs over the years to treat my migraines, and have found Relpax to be the most helpful. (I take 40-80mg. when a migraine sets in.) Although Topamax worked beautifully to control my migraines, I simply could not function in my life or profession without my full cognitive abilities. It was worth the try! | F | 32 | 3 weeks | 9/27/2009 | 2 | Migraines | Nervousness, Anxiety, Abdominal Pain, Weight Loss, Insomnia | Did not work for me | F | 24 | 6 months | 9/26/2009 | 3 | Hemiplegic Migraines - severe | Speech difficulties (wrong words), confusion, weight loss, tingling in hands/feet, visual "tracers", inability to taste or smell, hair loss, spasms in my chest that affect breathing, sleep disorders. | I started taking Topamax (75 mg) six months ago after being diagnosed with complex migraine disorder (hemiplegic migraines with one-sided facial numbness/paralysis and cluster headaches).If you absolutely HAVE to take medication for a migraine disorder like I do, this is the best I have found. My neuro helped me to address some of them with the following tips...Take the medication at night with VITAMINS to minimize the hair loss and nutritional issues. I stopped the vitamins and I can tell you that the side effects came back full force. Multi-vit, folic acid and potassium were suggested by my neuro and pharmacist. Try taking the medication in the pm versus the am. If your side effects are more severe right after taking the meds (like mine are) you will sleep through the worst of it and preserve your job/friends/family life. I started to sleep walk/talk, slur my speech, etc. That doesn't work well at the office. If your hands/feet tingle don't mow the lawn. Don't drink Diet Coke, eat apples or purple jelly beans. Trust me on this. They are the only things that I can taste at all and they taste horrific now. About the weight loss? Tremendous. I shop in the teen section now - at the age of 40 (I'm at a size 2 and dropping). I eat, but it's difficult when everything tastes like...nothing. Maybe the cat and I will share a can of her Purina Pro Plan. Maybe not. | F | 40 | 6 months | 9/24/2009 | 5 | Migraines | right now not many | Here is my WARNING! I have been on Topamax for 2 years when I first started I had the normal tingles but i had those before soem memory lose but I had those with the Migraines, blurry vision had that to with the headaches BUT! in 2/09 I filled my script and when I got it home my pills looked wrong I called the pharmacy and was told that they filled it with a genric, which never told them to but it was cheaper I was told same formula big deal... the doctor had changed my dosage so when I started to have issue's I thought it was because of that. it was not everytime I took this generic drug I was in fact making myself sick. I had intense pain,stomach spasms, severe blurry vision, migraines got worse,my heart would race to the point I thought it was going to jump out of my chest, my hands started to swell, the last straw came when i passed out and had to have 6 stitches in my knee. I talked to my doctor again and this time I told him I was not taking topamax anymore unless he wrote me another prescrition and made sure that it was not filled with generic.. I happened to be in that small percentage of people that can not take generic drugs. Generic drugs are not all the same. so please before you give up on Topamax look at it and make sure it is not generic. | F | 42 | 2 years | 9/23/2009 | 5 | Tingling in my fingers for first few weeks. Loss of Weight. Eye Twitching. Diarrhoea. | Was on 150mg and migraines began to come back so increased to 175mg which I stayed on for about 6 months till the migraines appeared agan so I went to 200mg but this was when I began to experience severe eye twitching and diarrhoea. As soon as I lowered the doseage back to 175mg, the eye twitching stopped and so did the eye twitching and my migraines are very few and far between. I think it is important therefore that a Doctor makes sure to prescribe this according to the weight of the patient as obviously 200mg was enough for a person much heavier than I was. Although I have experienced side affects, I would not stop taking Topamax as it has changed my life. I used to get Migraines at least once a week and swallow numerous pain killers and now I might get a migraine about once every 9 months. | F | 3 years | 9/18/2009 | 3 | Migraines | tingling,numbness in fingers, visual disturbances, bizarre spelling issues, weight loss (10 pounds) | The tingling was weird but tolerable. The visual disturbances were troublesome at night (I no longer could tolerate any glare while driving). Didn't mind the weight loss. Didn't tell doc this bizzarre thing, cause I thought she'd think I was nuts, but was always double typing/writing words in emails, or letters. In other words I would would write this! I thought I was nuts, but swear its from the med, once I stopped, it went away. It did help with my migraines though, suffered for many years with them. Was up to 100mg daily. | F | 33 | 2 years | 9/16/2009 | 3 | Migraines | ....... | Im taking topamax right now and have been for about over 5 months maybe more i cant even remember. They previously upped my dosage to about 100mg and want me to go up to 150...if im comfortable there. Because my migraines werent going away...& they findout that apparantly it was working because i had accidently forgot to get the topamax from my mothers and missed taking it for 2 days and ended up with a 3 day migraine. NOTHING helped.Which apparently that meant my migraine needed the medicine from what she told me. Idk. I dont like blaming things but lately i have been Depressed, I dont have friends anymore, i havent had a normal bowel function (constipation),Major mood swings,and im always angry, Ive always been smart but now my class is getting harder for me, ive fallen behind. I probably wouldnt take this medicine without researching it and knowing EVERYTHING. If only my doctor mentioned all this...all she had to mention was weight loss which didnt happen till i was upped to 100mg and ive lost 10 pounds. Im thinking about gettin off this medicine...and yes i feel stupid.So RESEARCH first! | F | 18 | 5 months | 9/14/2009 | 3 | frequent migraines | short term memory loss, loss of sex drive, stuttering, weight loss | Although Topamax was wonderful for getting rid of my daily headaches and migraines I could not handle the side effects. I experienced short term memory loss, complete lack of a sex drive and I stuttered...quite a price to pay! The lack of headaches was very new for me. I have had headaches for weeks at a time since I was a small child. It was amazing to go without them for a while but I could not comprehend anything and had a difficult time speaking. I hope others are able to use it successfully! | F | 31 | 2 years | 9/7/2009 | 2 | Seizure disorder | Appetite loss and severe cognitive side effects including memory loss, inability to focus, find words, complete sentences, etc. | My neurologist suggested the switch from Depakote to Topomax for its appetite side effects. (I had gained lots of weight during my years on Depakote.) Unfortunately, I couldn't wait for the pounds to drop off because the stupidity set in so fast. After a week on Topamax, I had become so ineffective at my consulting job, I had to take a week off during my transition back to Depakote. I'll take overweight and sharp-minded any day. The good Topamax news: I didn't have a seizure during my two-week switch. | M | 50 | 2 weeks | 9/7/2009 | 3 | Bad Migraines | Loss of appetite, Anxiety attacks, lack of motivation and depression. | Initially Topamax helped stop the migraines which was a blessing in itself. However, I did have to cut down on the dosage that I was taking and even now I don't take it every night. Even though I haven't had a bad migraine in several months, I feel like I've lost nearly a year out of my life from all the side effects I've been experiencing. You take the medicine to help you have a better life per se.....not to withdraw into a shell and shut the world out. But again - Topamax did (does) prevent my migraines. | F | 37 | 1 years | 9/1/2009 | 1 | migraine prevention | STUPIDITY... couldn't speak right, couldn't find the right words, couldn't remember anything. And, it didn't go away when I stopped taking it! | I wouldn't take this drug again if someone paid me. I've been off of it for 3 years now and I never regained my cognitive losses. It was bad enough having frequent migraines. At least I used to be articulate and intelligent. Now I have frequent migraines and can hardly put a sentence together. | F | 44 | 2 months | 8/24/2009 | 5 | migraines | initial 2 weeks only-dizzy, nausea,...; after 5 yrs, noticing memory issues that isn't "cute" and way too young to be part of the aging process. | It's been awesome! Lost weight at first, but you can't depend on it as a diet drug; no side effects and used to have 1 migraine/wk to none; but recently noticed memory problems that isn't normal and realized it has to be the topamax; not sure what to do? | F | 41 | 5 years | 8/23/2009 | 1 | alcohol and cutting cravings | CHRONIC MUSCLE WEAKNESS (as in deconditioned muscles...) Terrible skin problems!! Palpitations and irregular heartbeat causing extreme anxiety and fatigue | This pill is evil. Coming off it is like something out of a horror movie -migraine lasted for 5 days; nausea; fever; lack of energy; dizziness and passing out; high pitched buzzing in ears... It's been two weeks off the pill and I'm still in bed. Feeling alot better, and happier though. Muscle weakness has improved, I can walk short distances without extreme pain; fever and migraine still comes and goes; still occasional dizziness with spot in front of eyes | F | 20 | 4 months | 8/20/2009 | 4 | depression/mood stabilization | severe tingling in feet, especially heels, when driving, sitting, and/or sleeping; decreased appetite; weight loss; difficulty retrieving names or previously known information (this is particularly devastating, as I am a teacher). | Despite the side effects, which have affected my quality of life, this drug lifted me out of my hopelessness and brought be back to feeling stable and able and eager to function in my life. | F | 24 | 3 weeks | 8/19/2009 | 1 | bi polar | my side effects were VERY severe. MAJOR tingling all over, felt really dizzy and nausea. had no taste for any food. I LOVE asian food and I could not eat anything but fruit because I felt sick if I had carbs. Strange. | I started taking because of bi polar. I ONLY took this for 2 days and i experienced major side effects. I am very active and I work out everyday. The second day I took topamax i had trouble breathing. I felt like i was going to die. Also, I stopped taking the day and having tingling sensations all over my body. It is constant and is not worth it. DO NOT take this drug if you get side effects easy!!!!! | F | 19 | 2 days | 8/18/2009 | 3 | Migraines | Mental stroke like symptoms; focus/concentration problems; fatigue; tiredness; speech problems | It helped my migraines go away but made me not be able to talk properly. I knew what I wanted to say but the words would not come out. The focus/concentration was off if there was more than one thing going on. I was tired all the time. I did sleep better at night though. I could not work. | F | 28 | 7 days | 8/17/2009 | 1 | seizure | aggressive/hostile behavior suicidal forgetfullness trouble finding words, word substitution leg cramps hair became course and curly/frizzy joint and muscle pain non-convulsive seizure with bizarre behavior(different type of seizure than what I was taking this for.) Fear and panic attacks | I stopped taking it 15 months ago, and some of the effects are still with me. I can't think like I used to; I'm not as sharp. I forget what I'm doing or what I'm saying. I can't find the right word. I will substitute words that have some of the same letters. I get disorganized. I can't remember things that people told me, or remember directions. I can't concentrate like I used to, and I have trouble following what people are saying- it doesn't seem to register for a few minutes. However, the following side effects have stopped: suicidal thoughts, aggressiveness, hair turned course and semi-curly, tingling pain in hands and feet, leg cramps, joint and muscle pain | F | 43 | 5 years | 8/16/2009 | 1 | Migrane | personality change | My wife was put on topamax about 3 onthes ago she completely changed in personallity selfish, mean, wanted me to support her while she runs awhile. she has cheated on me and requested a divorce. she refuse to get off medicine saying her migranes r now gone. my self, her mother and my kids hardly can see herself. i am not sure if it this drug but i would like to her to at least consider it. | M | 45 | 90 days | 8/16/2009 | 4 | migraines | Tingling of fingers and feet (mainly heels), weight loss, "word dropping", taste changes | After first trying Depakote and gaining 40 pounds my OB GYN was very worried and really wanted my neurologist to at least have me try the Topamax. I have been on it for 4 mos now and have lost 20 pounds (yay!) but I am a much pickier eater - but for the better. I do get tingling in my fingers and feet - it's worse when I go from cold to hot & my heels will sometimes bother me in the middle of the night & wake me up. I read that flax seed oil can help. I do sometimes forget things, like today in a cinversation I was having I couldn't remember the name of a band - but it always comes back to me. I used to get migraines every day and now I am not.I am so glad that I am not suffering the severe side effects that some people suffer with Topamax because the alternative migraine prevention medication, Depakote, almost always causes major weight gain and that isn't fun either. | F | 43 | 4 months | 8/9/2009 | 1 | migraines | almost constant headache, body aches, not feeling well,ringing in ears, hard to concentrate, not talking right | my migraines have been getting worse and I dislike taking so much excedrin and imitrex so I thought I would try this (at my Dr's suggestion). I started at 25mg a day for 7 days then 2 times a day for 7 days with a plan to go to 100mg a day. Day 11 my head still hurts, my body hurts. I already had a problem with my ears ringing and it is twice as bad. I could not concentrate at work and I could not talk straight. This is not a help it is just more problems. I had already decided to wean myself off this medicine and this web site just reinforces my suspicions of the medication and my reasons for not taking it. | F | 53 | 11 days | 8/9/2009 | 1 | Epilepsy (GrandMal) | Severe side effects across the board. Euphoria with inability to control myself. Panic attacks. Speed like feelings. Strange changes to taste. | On my first, and lowest possible dose, I flipped right out into a panic attack after 18 hours. The attack lasted for 6 hours and put me in the hospital. They call this one Dopamax for a reason, but despite feeling heavily doped, I also felt the other extreme... Speedy rushes and triggered flight responses. The panic attack was preceeded by my feeling urges to rush into the hallway and pace in my room despite having been trying to calm myself down and watching TV. Very unpleasant and frightening. A shame as I also have Migraines. Would have had two birds with one stone if I could have tolerated this drug. | M | 30 | 1 days | 8/7/2009 | 1 | Epilepsy | Major weight loss, loss of the ability to pretty much function at anything, loss of appetite, extreme fatigue. | This drug is just plain ridiculous and should not be prescribed to anyone. I lost 50 pounds in 3 months, I was overwieght so this wasn't a horrible side effect in my eyes but the weight loss was initially the reason I had to go off of it. I was never hungry so I would go a day or two without eating or eating very little and dropped down to 105 lbs and I am 5'8". I also loss the ability to function cognitively, I was an honors student in middle school with a 3.8 GPA and after about 6 months of being on the medication they referred me to a learning specialist because I was doing so poorly in school, my IQ tested at 70 which by definition is mental retardation. They took me off the medicine and I eventually regained my cognitive abilities and managed to make it through college with a 3.6 GPA. DO NOT TAKE THIS DRUG. | F | 24 | 2 years | 8/5/2009 | 5 | Fibromyalga | Weight Loss (30 lbs in 2 months) - Hair falling out (mine is very thick so I am good on that one) - Unable to focus on specific tasks | I started out with a low dose of Topamax 2 years ago and now take 100 mg in the AM and 100 at night. I feel much better. The weight loss is great, although the loss of appetite can be dangerous because I forget to eat all day long sometimes. I am currently taking Klopnopin at night for sleep/ RLS , but my Dr just changed me to Amitriptyline which I decided I am not going to take after reading the stuff on here. I am starting my masters this month so i will probably get something to help with the focus issues if it continues. | F | 23 | 2 years | 8/3/2009 | 1 | Headaches/seizures | Nerve damage, eye damage, weakness,liver problems,toxic to my body would not recommend this drug to anyone! | F | 48 | 1 months | 8/2/2009 | 3 | Stress, weather/hormone-related | None yet | I haven't started taking Topamax yet, I have a doctor's appointment next Thursday and plan on asking for an RX for it, I'm doing my homework first to decide if it would even be worth it. I suffered from severe hormonal migraines when I was a pre-teen/teenager. In recent years I've begun getting SEVERE weather-related migraines(to the point I get tunneled vision and nausea),in one recent instance I even blacked-out briefly. I've also noticed a trend towards increased frequency of headaches/migraines during high stress periods. I admit, some of the side effects sound scary enough to the point I'm thinking of just "sucking it up" and living with the problem. However, Topamax has seemed to help an exordinate amount of people, and the weight loss is the most alluring plus about it (as I've gained 50lbs since going on birth control). Here are my questions: How bad is the cognitive dysfunction? I'm in the Veterinary Medicine field, incorrect spelling isn't much of an issue but not being able to calculate drug doses will be problematic. Do the mental side effects wane over time as the body becomes adjusted to the medication? Is the "flightiness" concentrated only on forgetfullness? I also have ADHD, so I'm already somewhat incapacitated with my attention span. How expensive is Topamax? I am uninsured,so I will be paying out-of-pocket. Thanks for y'alls time reading this ;-D | F | 29 | 0 times | 7/31/2009 | 1 | Migraines | forgetfullness, dopey feeling, MAJOR joint pain. | This only dropped my migraines to once a week, I was still not able to work, so the joint pain was just not worth it alone. I was literally UNABLE to get out of bed because it hurt my joints so bad! I forgot everything - what day it was, was I supposed to be picking up the kids for carpool, etc. | F | 41 | 4 months | 7/29/2009 | 3 | Migraines | Just started, nothing to report yet | M | 28 | 60 days | 7/28/2009 | 4 | frequent migraines / bipolar type 2 | weight loss, really bad short-term memory, trouble concentrating, diarrhea, bad balance, lightheadedness, irregular heart rate, fatigue, etc. | overall, it helped my headaches very well. but i found myself not being able to have a conversation without struggling for words. i went from 140 to 105 pounds. i'd forget to eat and not be able to find anythiing that appealed to me. i'd almost pass out upon standing. i don't know. it has it's pros and cons. | F | 18 | 1 years | 7/22/2009 | 1 | epilepsy | tingling in hands and feet to the point I could no longer feel my toes or fingertips, extreme anger and mood swings, complete loss of ability to concentrate, no longer able to drive (I would forget I was driving and start looking out the side window), reading was almost impossible (It would take me about 30 minutes per page to get a general idea of what I was reading), had trouble holding a conversation with anyone because I would forget what I was saying, or forget I was being spoken to and wander away (This one really annoyed my husband) | I was being switched off a med that worked well because my Dr. insisted the new ones were better. My husband almost immediately started telling me he thought I was having problems on this med and I would get mad at him about it. I kept insisting that he was the one having a problem. I was in college at the time and began failing ALL of my classes. My GPA was 3.8, so this was abnormal. That was when I recognized there was a problem. I tried to contact my doctor, but he was on a month long vacation. His partner told me to stay on topamax until my regular doctor was back, but add another med. I went back to dilantin against his orders. Side effects faded and I managed to pass all my classes. If I hadn't been so angry on the med I'd have probably gone off of it sooner, but I got really mad and stubbornly argued thet I was doing fine. However the day I nearly drove off the side of the highway because I forgot I was driving was the last day I drove while taking this, my husband drove me to my classes. Quality of life on this med was very low. When he got back my doctor wanted me to try it again, I found a new doctor. | F | 33 | 6 months | 7/22/2009 | 2 | Migraine Prevention | Soda tasted flat at first, tingling sensation(hands, feet, legs, & arms), changes in my menstrual cycle, off and on constipation, loss of appetite (Didn't mind this one. I lost about 10lbs), abdominal pain, and wierd body odor. | I have been on Topamax for about 3 months. I am currently on 125 mg a day(50mg in the morning and 75mg at bedtime). I was put on this medicine as a preventive med because I have Basilar Artery Migraines which causes me to go blind. I have no warning as to when this is going to happen so I feel the need to be on a preventive med. The medicine I was on before didn't seem to be working as well so I decided to try this one. Since being on it I have had more migraines then I can remember. I have also experienced quite a few of the listed side effects as well as others that are not listed on the web site. For some people this drug might be the only option and it might have worked very well for them, but for me I am getting off of it. I have decided the side effects are to severe for me. While I do like the weight loss it is not worth the constant migraines and I am still getting the vision changes. I have decided to go back on my old medicine which actually (now looking back)worked extremely well for my migraines. The medicine was CYPROHEPTADINE. It is a very old med that many doctors don't use anymore, but worked very well for migraines. Hopefully this will help someone out. Think twice before starting this medicine. | F | 21 | 3 months | 7/21/2009 | 3 | Migraines | Topamax is a miracle drug for migraine avoidance, but not worth the side effects. The funny tasting carbonation effect went away, but the memory loss and inability to focus and process information increased. I quit taking it a few weeks ago and hope that I regain some intelligence soon. | M | 33 | 3 years | 7/20/2009 | 1 | Migraines | HAIR LOSS! If your doctor is telling you that it is just stress, diet or age and you are taking Topamax get ready to lose your hair. | I've had migraines since age 7. Maxalt used upon the beginning of a migraine would make the headache go away and within an hour sometimes two I was feeling much better. My doctor suggested Topamax which is finally available as a generic. Amazingly the number of people who are reporting hair loss is incredible! A migraine lasts a few hours, your hair loss may last forever. Luckily I had a lot of hair, it has thinned considerably and I just hope that now that I am no longer taking the medication that this horrible side effect reverses. | F | 37 | 4 months | 7/18/2009 | 4 | cerebellar tremor and paresthesias | fatigue, aggressive and hostile behavior, loss of words, generalized malaise (just not feeling well), i am getting headaches when i wake up and in the evening, not migraine, is it related to the topamax? | I started on 12.5 mg at night and the effect on the paresthesias was amazing. I had been unable to sleep at for almost two weeks because of the intense burning pain and muscle cramps in my legs from loss of nerve innervation. The first night on 12.5 mg I could sleep and the next day my tremor was significantly reduced to the point that i could perform surgery. For me it was a miracle. | F | 55 | 14 days | 7/16/2009 | 4 | excruciating and frequent migraines | memory loss, confusion, loss of balance, loss of words when speaking, words don't come to me as quickly as they used to | Drug is a lifesaver if you can put up with the dopey side effects, being an elementary school teacher, it is hard sounding "stupid" in front of students for a while. But, it sure beat missing school for days due to debilitating migraines. I haven't had a migraine in three years when I would sometimes get them three times a week at one point. They were ruining my life. I had to plan my life around the possibility of getting a migraine. Having two kids and a job--that was difficult to do. This medicine was a Godsend and I am willing to sound stupid in turn for the fact that I know I should be free of migraines. I know it makes you dumber than a box of rocks, but I would rather than be dumb than in pain constantly and nauseous. I couldn't function or have a life before taking Topamax. Topamax may either make you lose weight or keep your weight stable if you weren't overweight to begin with. | F | 37 | 3 years | 7/15/2009 | 5 | Migraine | weight loss (forgetting to eat), tingling in fingers, fatigue then mild less need for sleep | Started at 25 mg once a day with severe fatigue, no real change in migraines. Upped dosage to 50 mg once a day and migraines have decreased from approximately 4 to 5 every week to 1 to 2 every month. Will take the side effects, as they are less debilitating than the migraines. As a side note, I am on the generic topiramate. | F | 39 | 2 months | 7/14/2009 | 1 | Bipolar I | Cognitive slowness and rapid mood cycling. | It did not even cause weight loss and had no therapeutic effect on my bipolar. Some psychiatrist refer to it as "Dopamax." I used it for one year in 2002. | F | 41 | 1 years | 7/3/2009 | 4 | migraine | memory loss, depression, ringing in my ears, lack of focus | I've been headache free but was just tested have have found that I have significant hearing loss in my right ear. The hum and ringing in my ears began about four months ago and seems to be getting worse and louder. I don't think I can live with this. I will be seeing an ENT specialist soon and see what he says, if there is no other reason for the hearing loss I may ask to reduce my Topamax or maybe try getting off of it and see what happens. Also, the memory and focus problems are becoming a problem at work... | F | 52 | 7 months | 7/1/2009 |
| Key to
ratings: 5-Very Satisfied: this medicine cured me or helped me a great deal. 4-Satisfied: this medicine helped. 3-Somewhat Satisfied: this medicine helped somewhat. 2-Not Satisfied: this medicine did not work to my satisfaction. 1-Dissatisfied: I would not recommend taking this medicine. |