Topamax and confusion

I started Topamax over a year ago and titrated up slowly, 25 mg a week until I got to 125 mg a day, split dosing. I was started for migraine prophylaxis. Once it kicked in, it did an amazing job of keeping my headaches away. But, here is something really important: if you are going to have surgery, there are contraindications with Topamax and anesthesia. No one either knew this or told me this and I only found out weeks after I went through a really lousy experience. What I believe happened is that the combination threw my body's pH balance off. I felt like my insides were burning and it was only at that point that I started to experience the severe diarrhea and weight loss, fatigue, and general malaise. It lasted for weeks. All I could figure at the time was that it was just taking me a really long time to recover from my surgery (ovarian cyst removal and unilateral oophorectomy), but that didn't make sense. I felt like I had a horrible flu for weeks. I kept seeing my doctor saying something was wrong with the way I was healing (ie, i had an infection or something). Anyway, this eventually stabilized as I back off the Topamax. I was so weak that I didn't even realize the memory issues or word finding problems, but when I started to feel better physically, I did notice those. That REALLY bugged me. I like to be sharp. So, I tapered off. About 1.5 months later, my headaches started coming back. I decided to try Topamax again feeling that now I understood it much better and could watch it more closely. Maybe this time I could ride out the side effects. Well, this time several months passed at the same dose. My headaches were still there and I had no side effects. We upped the dosage. Still having headaches, but no diarrhea, no weight loss (in fact, weight gain of 15 pounds over the last 9 months since last Topamax round), no real problem with word finding, etc. Up to about 200 mg daily by this time. It has been about 6 months and I have started tapering down and about to give up, down to 150 mg daily right now. NOW, here is something interesting: I just have another surgery, but no anesthesia. It was oral surgery. I did, however, have to take a round of antibiotics. It seems that this round of antibiotics has kicked the cycle into gear because I started having gastric problems, perhaps because of the antibiotics (although in the past, I have not had problems with antibiotics before, ALTHOUGH I did have to take them last year with my in-hospital surgery), I don't know, but I have finished the round of antibiotics and I am still having diarrhea. My appetite is suppressed, and I have lost 5 pounds in this last week. Many people say you cannot lose weight if you stop Topamax and restart it later. That is an interesting. I wonder why that is. Topamax is such a strange drug. Why did it not work for me the second time I took it, or at least for 9 months? Is it just now kicking in with its side effects as the result of upsetting my gastric system? Will it start working now for my headaches, too? I think I will continue to taper off or maybe see if I can prevent headaches on a very low dose. Oh, another interesting thing: I found the first time I took Topamax, it made me feel energized. I found that this time, it made me feel the opposite. I sleep a lot more and feel more sleepy during the day.

I am a female in my mid-to-late 30's. I was on Topamax for about a year. The memory, vocabulary, concentration, focus, loss of words and 'confusion' got so bad it became a real problem at work and the rest of my life. When I started forgetting how to get home, the neuro doctor took me off of it. Those problems decreased a bit, but never entirely disappeared. After weening off the medicine, the full-blown headaches/migraines returned (Topamax only moderately relieved pain). So now in addition to the pain in my head, I have the lingering sides-effects to deal with. It cost me my job. I've been off Topamax for over a year and still have not regained control of my own thought processes. Among other things, it's embarrassing because I feel stupid. I no longer understand about half of what I read, have trouble following (and remembering) conversations, habitually forget what I'm supposed to do/have done/am doing. Forget being able to follow a series of directions. I am afraid Topamax has caused permanent damage to my cognitive brain functions and I have no idea what to do about it. Has anyone else experienced this problem?

I have had pins and needles feeling in my fingers and toes, pretty strong too, I've been on Topamax before so I knew what to expect, I've had the loss of appetite and the soda tasting flat, as well. Some confusion with words, not being able to put together a complete sentence, like you know what you are trying to say but it's not coming out correctly. There may be times where you are somewhat staring off into space. My neurologist explained all of the side effects to me before prescribing me drug but also gave it to me as sor of like a ladder, to where I could build up to it so the side effects are not as bad, I went from 25 mg 4 night to 50mg at night for 4 night, then 75mg for 4 nights now I'm on 100 mg at night, so I've gotten used to it again, I still get the pins and needles and the confusion but if someone is considering taking Topamax, ask your doctor about trying to build up to it first by doing 25, 50,75 then 100.

I'm almost 21 years old. I have been taking 100 mg of Topamax before bed since I was 17 for migraines. I did not have the weight loss that a lot of you had. I did have the tingling in the hands and feet for about the first two years. I have also had a lot of memory loss and a change in personality. I have become depressed and aggressive. I have also had extremely realistic nightmares while on Topamax that I did not have before I was on the drug. However, I don't think that I could go off the drug because I ran out of it once, and I know that you aren't supposed to stop cold turkey, but I had terrible headaches and could not go to work. I ended up in the ER because I had such a bad headache.

We learned about this drug in my Educational Psychology class. If you start taking it when you are younger and stay on it for an extended period of time, it can prevent your brain from developing. This would explain the memory loss, at least for me and other people that started taking it when they were young, but the memory loss and confusion is worth it to be able to keep a job and get good grades in college.

First I want to say, after reading several posts, that it seems a lot of you are taking Topamax without food, which may be causing your "spaciness." My doctor suggested always taking it with food, even though it says with or without food, and I only experienced spaciness the few times I took it at bedtime without food. Once I started taking it with breakfast and dinner, that never happened again.

I am a 48 year old woman, prescribed Topamax in September of 08 for migraine associated vertigo without headaches, with facial numbness. The first thing I noticed was I immediately had headaches, which to me indicated it was dehydrating me as that is the only time I get a "normal" headache. So I knew I had to drink a lot of water. Soon after starting Topamax I developed a dry cough that lasted the entire time I was on the med. I did not relate it to the drug at the time, however. It never even occurred to me. After about two months on the drug I started having trouble breathing with extreme dryness in my airways. I was prescribed an albuterol inhaler which did not help. I was then prescribed a corticosteroid inhaler which also did not help. I thought the trouble breathing was from taking Nadolol which I was prescribed for occasional heart fluttering - the neurologist said this was a normal side effect of Topamax. I stopped taking the Nadolol but the trouble breathing continued. I also had more migraines with vertigo and facial numbness than before I started taking the drug. I hoped it would eventually stop and the drug would kick in to help the vertigo, so I stayed on the drug. I had very minor tingling in my feet, but it was tolerable. I became very stressed out, had trouble sleeping, depression, my face started breaking out in November (and still is), I lost interest in everything that I normally enjoy - reading, photography, following politics in the news (sort of an obsession of mine). In December I was so depressed that for the first time in my 11 year career I started canceling appointments and eventually took three weeks off from work to "re-group." In January the neurologist decided that we would increase the dose from 100 mg to 150 mg for one more month, and if it did not get rid of my migraines with vertigo, we would discontinue the drug. The first day on the increased dose I had a killer headache, and I drank 150 ounces of water before it went away. That night I did not have to go to the bathroom during the night, unheard of for me. That's a lot of water to drink and not have to pee. Within two days of increasing the dose, my cough became much worse, and within three days, the breathing became more difficult. Within five days, I was having trouble speaking because my airways felt so dry. I called the doctor the next morning and he said it was not the drug, but if I wanted to, stop taking it. So I went off it cold turkey, per his instructions. I had rebound migraines every day for a week or two and my heart was pounding, sometimes for three or four hours at a time. Eventually the cough and trouble breathing went away, however, I had to continue drinking lots of water or I would notice that I didn't have to urinate, sometimes not at all. Again, unheard of for me. I saw a cardiologist at the neurologist's urging and they said the heart pounding was just anxiety. I disagree, as did another doctor of mine. We both believe it was withdrawal. I have now found out (by getting copies of my medical records) that the neurologist is now attributing all of my side effects from the Topamax to "somatization." In other words, psychosomatic - not a side effect, but just a way of getting medical attention. I am seeing a few people on this board who have also experienced a dry cough and trouble breathing. Can I have the same side effects as other people and have them still be psychosomatic, even though I had no idea those side effects could occur? I don't think so.

I have a theory that Topamax interferes with hormones which causes a lot of the side effects like lack of concentration, memory loss, anxiety, depression, insomnia, acne, and hair loss - all symptoms of peri-menopause and menopause. Ask any woman in her 40's or 50's if she has these symptoms and most of them will say yes. My face has not been this broken out since high school! My hair is falling out at a rapid rate. I won't even bother mentioning these to the neurologist. He'll just say it's not the drug.

I'm very frustrated and not sure what to do at this point. The neurologist has me taking a supplement called Migrelief now, but I think it takes three months to kick in, so I have no relief at this point.

Has anyone else experienced the trouble breathing with dry cough? I don't believe for a moment that it was psychosomatic.

I have been on Topamax for about two years for migraines, and was very pleased that after the first month or two, most of the noticeable side effects (dizziness, flat-tasting soda, etc.) disappeared, and the Topamax has been very effective in cutting my migraines in half. However, I've recently begun to question whether other health problems I've been experiencing are actually Topamax side effects and I just didn't realize it.

The first is intermittent stomach troubles that have been ongoing for the last year. Starting last January, I started experiencing diarrhea, stomach pain, and other persistent gastrointestinal problems, and through online research, I decided that it was probably either a spastic colon or Irritable Bowel Syndrome. I lost 15-20 lbs. in the spring and summer, but the problems would always recede before I took them to my doctor, then resurface just long enough to irritate me before disappearing again. It never occurred to me until recently that these could be Topamax side effects.

The other possible side effect that I assumed was an unrelated problem is interruptions to my sleep pattern. I have been experiencing some occasional bouts of sleep paralysis, and which researching this, read that in normal sleep patterns, one is supposed to enter REM sleep (when dreaming occurs) after about 90 minutes. I frequently enter into dream sleep in as short as a 20-30 minute nap, which does not seem to be normal. Again, researching this, the only two explanations that came up were narcolepsy, which I obviously do not have, and that my normal sleep patterns are being interrupted "by medication." So I'm back to wondering if it's the Topamax. Has anyone experienced similar sleep symptoms?

I recently increased my dosage from 25 mg to 50 mg and noticed my hair has been falling out. I just feel tired all the time. I thought I was going crazy until I read this site! I will talk to my doctor very soon. I did not think there would be problems with a "low" dose.

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

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?

I am approaching 8 mos on Topamax. I take it for Epilepsy vice Migraines so my situation is less discretionary. Caffine is a definate no-no on Topamax, it makes you feel confused and crappy immediately after you drink / ingest it. That is the first lesson I learned. Drink plenty of water, that helps your kidneys work through the medicine. I take 75 mg in the morning around 7:30 and my heavy med time is around 11:30 (lunchtime) and then 50 mg at night so I am asleep during my evening heavy med time. Topamax is a miracle and has kept me seizure free for 8 mos. Side effects are light, I just plan accordingly. I would never take Topamax if I did not have to. I just take plenty of notes to overcome my high med times / confusion and seem to be doing pretty well. The big one is CUT OUT CAFFINE. Man, caffine will make you feel really bad.

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.

headaches,nausea,fatigue,irritability,blurred vision,terrible loss of memory,inability to eat,depression,diarrhea

I just started taking Topamax due to having headaches everyday. I have been experiencing tingling, zoning out, confusion and body odor. I noticed some of these on others posts, but am I the only one that is having a body odor problem?? Not only that but I am itching under my arms to the point that I am almost scratching them raw! Its terrible! I am not sweating, so I thought maybe that is why I am itching so bad, but I don't understand the body odor part!! I have never had a problem with this before! I really never even HAD to wear deodorant, I do, but I didn't have to... & yes, I do bathe everyday! =-]

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??

I have been taking Epilim on and off over a period of many years now, the main side effects I have experienced are the following,
loss of appetite, confusion with words, short term memory problems., difficultly recalling long term memory data, eg, ppls. names etc., lack of all emotions, difficulty concentrating, restlessness.

I was doing just fine taking 50 mg of Topamax but I was still having minor headaches. My doctor said to go to a neurologist because there may be a tumor to worry about. He doubled my morning dosage and added an evening dosage so now I am taking 200 mg. a day. I started the insanity on Friday. By Monday i went grocery shopping and couldn't remember what I was shopping for. Thank God i brought my husband with me...when I could remember that he was with me. And then when I remembered to ask him what we came for I needed to remember where it was. Upon returning home I offered to help my 7 year old grand daughter with her spelling homework. Do you how embarrassing it is to not remember how to spell first grade spelling words? Tuesday was Mardi Gras and we went to the movies so I was saved any further mind questions. Then along comes Wednesday and I returned to work. Well, I tried to get to work. I got lost. Here I was at Walgreen's trying to figure out what I was doing out at 6:00 in the morning. What day was it? The looks on other's faces when you ask them these question is not something funny. So, I get back in my car and aim in the direction I hope is work. Luckily, I remember where I habitually stop for breakfast. My memory comes back again and I make it to work. I am on time and all is well. Now, the day begins.

I haven't had a period since December. Here it is February. And no, I am NOT pregnant. I can't concentrate. I ate 2 chicken nuggets for lunch and am full (now that is a healthy lunch, huh?). I was addicted to Dr. Pepper and now can't even stand the smell of it. I can't walk and chew gum at the same time. I found a note that I wrote sometime yesterday that really scares me because I don't remember writing it. It says, " Headache @ 1:55 no known trigger jut sudden movement to pick up papers from bin over desk. Nausea as well. Need to go to sleep forever." Good feeling to have? Depression is kicking in.

I just called my doctor and he says decrease the medication down to 100 mg. Ummmm...How about I decrease it down to 0 mg and I take a Imitrex or 2 and a hot bath with a nap when I get home and live to see my grandchildren grow old! I think living with a migraine or 50 is far better than what I have been feeling this past week.

If anyone can tell me that it gets better in less than 2 weeks I will stay with it but 1 more week of this and I will be a patient in a mental hospital. I can't even play Nintendo with my grandson...NOW THAT IS DEPRESSING!

Ive been on Topamax for almost a year now. I'm currently taking 150 mg. I have the normal side effects. the bad metal taste all the time. confusion, foods taste bad, weight loss. I have recently have been getting very depressed. also in the past year I've been having stomach problems. everything I eat makes me sick. Doctors don't know what it is. I am starting to think its the Topamax.

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!

Hi My Topamax side effects for the past 4 months have been major confusion, I forget things, such as did I take my pills how many pills do I take this morning when I used to do 4am 3 at night it used to confuse the hell outta me. I am in grad school, I cannot remember a lot of things. I have to read a chapter over and over couple of times, the length of time it might take me to do a 10 page chapter is 4 hours. To get through one set of notes it takes me the whole day or half a day, I am so slow and fatigued from the medicine. My mind works so slow. I have a hard time forming words and sentences. I hate Topamax, decreasing the dose did nothing for me. My eyes burn when I read. Everyday I go on the same road from school to home, I don't drive, someone else takes me, I still don't know how to get from home to school. I know pieces of it. just like my school work, pieces. Everything is a blur.