Topamax and headache

I was on topamax for about 2 years. I took it for frequent migraines caused by my sinus's. I had all the normal side affects but got used to it after awhile. The only one i didn't get used to was the hair loss. During this time I started allergy injections and now i'm up to my maintenance level. So i decided to ween myself slowly off the topamax. I have been off for about 2 months now and I have been fine on the headache side, but i have started to get other symptoms (i think withdrawal symptoms). They have progressively gotten higher in number as the days go by. First my hair loss has not stopped. I gained about 10-15lbs, I am edgy and climbing the walls all day. I have a really hard time relaxing. I recently developed horrible insomnia, and about a week ago i started having digestive problems including water retention, bloating, gas, irregular bowl movements, and acid reflux. And I've recently had bouts of tightness in my chest and throat which make it difficult to breath (lasts about an hour). I didn't have any of these symptoms while i was on the topamax (except the hair loss), nor did I have them before it.
I am seeing an endocrinologist in a few weeks to make sure nothing on that front is causing any of this, but i really feel it's from taking and going off the topamax. If you can find other ways to deal with your migraines, DO!

In August I started taking Topamax and every week i am to up the dosage now I am taking 50mg in the morning and and 50 mg at night because my headaches was so bad that I had to quit my job because I couldn't serve food and vomit at the same time. Now that my headaches have gone from everyday to about every other day I have noticed the indigestion. Because I had because sick so long the doctor suggested I had a reflux and it would correct itself.I started looking at all the medication I was on and the list from the pharmacy never indicated indigestion on as a side effect for Topamax.My appetite is non.Weight lost about 20 lbs but I could afford that and then some. I try not to use the upstairs of my home if no one is there because of the dizziness.And simple chores around the house go undone.I have bounce $130 in bank fees this month and can't figure out how and gave the finances over to my husband to keep up with and I am a math major in college this semester.This is how bad things have gotten some simple words i can't recall how to spell . I have to use the dictionary. It's bad.

After daily pounding migraines for ten months, the side effects of the tingling fingers, tongue, lips and toes; the inability to find words, the weird way certain foods taste, are all very do-able. What does worry me is the way I can get incredibly depressed, but the anti-depressant (Wellbutrin) I've been taking for more than ten years just suddenly started making me worse. I just keep telling myself that at least I don't have a headache. It definitely makes it worth it. The headaches were so bad, and thanks to the topamax, they're gone.

This is tough. I was on Topamax for about two years. But then I wanted to detox my body from all meds. Topamax helped with my chronic headaches. I had headaches 23-24 days out of the month. Topamax helped me quite a bit. But the side effects were horrible. Once my body got used to it, it was not too bad, not great but somewhat bearable. But after getting off of it again after a year, I got the worse headache ever, I blacked out. It felt as if someone was shoving an icepick through my eye. This started to happen more than once. My doc suggested I go back on because it helped me before. So here I go again. I lost 12 pounds in seven days. I forget what I am going to say. I have poor concentration. I am hyper-aware. And I cry quite a bit. This is NOT ME. But I try to keep walking along and doing my best, because neither the medication nor the headaches are going to get the best of me!!!!!

I started taking Topamax 3 weeks ago. My Neurologist started me on the 25mg dose and gradually moved me up to the 75mg dose. I've had several different side effects. I don't like this medication at all. I want to stop it but I'm afraid because all the web sites say when you stop it you can have seizure's. I have suffered the last 3 years with everyday headache's and would do anything to have relief but cant stand the way this medicine is making me feel. I have felt nausea's for day's. My 3year old has ate more than me. I cry over anything. I'm tired! I've had a headache everyday while on the med's. I have a nasty taste in my mouth. My vision is impaired. I definitely will not stay on this medicine. I would rather deal with my Migraines, then to deal with Migraines and side effects!!!

I am feeling HORRIBLE! I can't taste anything normally either. My mind is mush, I cant go to the bathroom without breathing like I ran a marathon, I lost 20 pds in less than 2 weeks ( which puts me at 110). I slur, I have cotton mouth, can't sleep, I stare into space endlesly, my stomach and back ache, my mouth aches and I feel so tired. Everyone says I am acting abnormally. I am misirable and so is my husband, I am scared and feel so alone. To top it off, I still have a headache......

I've been taking Topamax for a couple of months now to help with my lifelong (I'm 47) migraines. I had been taking at least 10 Axerts each month, using Amyltriptyline about twice a month, and had completed one lifetime's supply of Aleve (my belly revolted so it's only Tylenol for me from now on). I'm on 100mg and have very mild tingling, which I tell myself is a message that I don't have a migraine (hooray!). For me, this is a wonder drug - it nearly completely prevents my suffering. The problem is that I have absolutely raging diarrhea. I've spent weeks on the BRATTY diet & using probiotics to no avail so I've begun dropping my dosage to 75 mg to see if that helps. I would do nearly anything to continue taking Topamax.

Interestingly, I had more fuzzy brain problems taking excess Axert & Amiylriptyline than I do now on Topamax. I feel much less like I have ADD now. Amazing how differently meds affect different people.

I started Topamax a month ago. My neurologist told me to start out taking 50mg in the morning and evening. I am a nurse and have read that this med needs to be started out on small doses and slowly increase every few days. When I questioned him about it, I was told that I should be fine. Although I did not follow his directions and start out small and increase it every 3 days. After about a week I was on the full dose of 100mg daily. All carbonated drinks tasted flat, I was having a funny taste in my mouth, and I was sleeping more. Within the past week, I have been having numbness in my hands and feet to the point that my hands go completely numb. The tighter I tried to grip something, the worse it got. I also am having severe dizziness. I am unable to stand and walk without feeling like I'm going to get sick and fall. Forget trying to drive. I work 45 mins away and have no other option on getting to work. During the time that I have started to have the dizziness, I have also noticed a drop in my blood pressure. I do not even have to be standing or moving to have the vertigo start, I can be laying down. When I called the Dr, I was told to abruptly stop the med. No weaning. Everything I can pretty much deal with but, my main concern is the severe vertigo (dizziness) and low blood pressure. Is anyone else having this issue?

I have been taking this for about two weeks and have just ramped up to 50 mg. I had a closed head injury last November and have been suffering from balance, headache and memory issues since. Doctor put me on Topamax for headaches and I have had the eye checks after experiencing eye pain but I was fine. Have had slight tingling in my feet and my right eye has been red off and on since starting. My right eye has also been constantly hard to focus.

I have read over and over that the side effects usually go away after about 8 weeks, so I'll see how it does till then. I'm still waiting to see if it helps my headaches, it hasn't yet.

It seems to have made my balance issues worse, and I am constantly dizzy now, although in Topamax's defense, I have been having more dizziness since my injury.

The spinny thingies that used to be there when I close my eyes are gone now, at least they have been since I started at 50 mg.

I'd say the most disconcerting issue I'm having is a feeling of being doped up and becoming more afraid of doing things, like driving a car.

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!

I was on Topamax for 10 days with a few minor side effects but nothing serious enough to quit it. My husband and I went to the library about 6pm. I am 46 and never wore corrective lenses but was noticing that the shelves farther away were blurry, I didn't worry too much since I had been having ongoing thyroid problems and figured my eyes were swelling (though that normally happened only in the mornings). By the time we got home and were sitting down to dinner I noticed that when standing in the kitchen the people in the other room were completely blurry. By 11 pm I could only see clearly within 18 inches of my face.

I awoke at 2 am with a severe headache and almost complete blurriness, I had to hold the pill bottle very close to my eye to be sure it was correct and even then could not be sure. My husband gave me the meds and I went back to sleep. I didn't wake up until 1pm!!! When I awoke all light was painfully bright and I could see NOTHING clearly! I was rushed to the hospital and was diagnosed with acute angle-closure glaucoma caused by TOPAMAX!!!

Thankfully the docs were able to reverse the symptoms but said one more day I would have been permanently blind. My eyesight has never returned fully, though I can function just fine and do not feel depressed about it.

Please, be very careful on Topamax. The stuff is dangerous to many people though a life-saver for so many others. Also, may I suggest to those with the tingling that you get your calcium levels checked as this is a classic symptom of low calcium. I just wonder how Topamax affects the other body systems, such as the adrenal and parathyroids.

I've been having breathing issues since last Sunday (so for one week now) and ended up in the emergency room yesterday because I was hyperventilating so bad at work, I nearly fainted. My lips, hands and feet were tingling. On the way to the hospital my hands, feet and lips became numb. Then my muscles started to cramp and I lost the feeling in my hands (at this point, I was struggling to hold it together and not cry, so I was having some anxiety as well). At the hospital, I had my lungs x-rayed, blood work, urine tested, and an ekg---all normal. They gave me some Ativan and said it was probably anxiety. I still couldn't breathe. I was anxious because I haven't been able to breathe properly for a week and no one has an answer for me! When I talk, I get winded. If I have to move around and talk at the same time, I am gasping for air. If you read the information sheet on Topamax, it can cause something called "metabolic acidosis" which can be quite dangerous. My blood work came back normal. You can have the pH of your blood tested to see if this is the case. If your pH is too low, then the you may be experiencing this. Read your Topamax literature. For me, I decided to take myself down to 50 mg from 75mg anyway, just to be on the safe side and hopefully, I'll here from my headache doctor tomorrow and will follow up with my internist on my own. It's very scary. Please be careful. Good luck to everyone. Oh, yes, and if I forget that I wrote this, it's the Topamax! :)

I have been on Topamax for a little over a year. I've had most of the side effects; tingling, numbness in the fingers, dry mouth, forgetfulness, and weight loss - love the weight loss. All the side effects have sort of slowed down as I've been on the medication longer. The weight loss has slowed and I've even began to get my appetite back- I'm afraid I'm going to start gaining weight now! I've lost about 40 pounds and I needed to lose it, so that was wonderful. I've had a very hard time losing weight all my life so this was wonderful.

I was addicted to Coca Cola and this med also helped me kick that habit because I lost my taste for the carbonation.

Does anyone know if the weight loss usually evens out after about a year or a year and a half? I need to lose about 30 more pounds and was hoping that I would continue losing weight!

Anyway, I was on the Topamax for headaches and it has completely helped that! It has truly been a God-send for me. Other than monthly hormone headaches, I don't get migraines hardly at all!

I am wondering about having my doc up my dosage for the weight loss aspect????

Haven't seen anyone mention any sexual SE's but I know I'm not imagining this. It's not a lack of libido but, it's as if my wiring has been disconnected.
A lack of sensation. Major bummer. I can live without sodas but not this!
That was my major reason for getting off the Topamax. My doctor was very incredulous about this being a SE of the Topamax but he didn't argue with me. I came across this site just looking to see if anyone else had experienced this. After getting here I can not believe all the things I have been brushing aside as due to something else. Stomach pain and diarrhea, severe GERD, depression and morbid thinking, oh and my gosh the trouble searching for words and connecting thoughts--I thought I was loosing it, shortness of breath and weakness that I was attributing to weight gain! I have only been on 25 mg a day for 6 months. The migraines did improve and the paresthesia in my hands subsided over time. But all this other crap that has slipped in and I have been passing off as aging or just wondering what else was up with my body and mind. Sheese! Thank goodness for this site! I am tapering off this crap-- and I feel like crap. Weakness and fatigue and a weird pain in the side of my head that is not a headache exactly. I hope I'm back to normal soon, this is awful!

Hi! I was on I had chronic daily migraines for about seven years I am now thirty. I have tried everything in the book. I was on Elavil and became headache free for about five years and went off of it an was fine for about two. the cam back and nothing has worked since not even the Elavil. I took Topamax for about three weeks 25mg. a day and my husband thought I was insane!! I could not eat because my stomach was so nauseas and i developed severe depression. Al thought I was almost immediately headache free. But my husband and I could not handle it. Nothing worked for the next year so I am back on it. I have been on it for a month. I am relatively headache free. I am at 75mg twice a day. Lost weight not depressed but extremely nauseas so we will see. Good luck to those our there. I feel your pain and connection. If you have a similar experience and information on the Longevity of Topamax side effect that would me great. Happy holidays!

I have been on Topamax 4 weeks. I see why they call it Dopamax and Stupamax. Fortunately I work with some pretty stupid people so no one has noticed yet that I am not on top of my game. I am no longer practicing as a nurse, therefore I don't endanger people in my job, so its safe to be dumb and ride out these side effects. I have read lots of the experiences of others and have noticed over the past 4 weeks as I have increased my dose gradually from 25 mg to 100 mg that the side effects have A) changed in quality and intensity and B) been transient and some are wearing off altogether. At first, on 25mg, I couldn't hold my eyes open and I could barely make a sentence. At 50mg I had to call into work one day because I was so gorked. By the time I got to 75mg I was hyped up, charging around the house cleaning, just a little dingy and forgetful, but a powerhouse of energy and no headache at all. Something I didn't expect was the very pleasant side effect of it making me feel as if I had taken an antianxiety medication all the time. This is great because I have a high stress occupation. I overeat and am a little overweight, I need to lose about 40lbs. Now food looks larger and I don't want to clean my plate. I miss diet Pepsi but I am going to group therapy for that (j/k). Granted the dizziness, forgetfulness and word finding problems really stink, but I have seen such an improvement in the side effects in such a short period of time its worth it to me to stick it out. I was having severe, incapacitating migraines about twice a week and less severe ones the other five days of the week. I haven't had a headache in over 2 weeks. My experience over the past 4 weeks is that having patience with the side effects and depending on others to be understanding and supportive, swallowing my pride and being ok with looking a little or a lot goofy for a few weeks while this med has gotten into my system has really started to pay off!

I first posted about 6 weeks ago when I began taking Topamax at 25mg a day. I'm now up to 100mg a day, 50mg am/pm and surprisingly it seems that most of my side effects have subsided. I have the tingling in my fingertips and feet now that I didn't have before, but it is rare and not something that keeps me from any normal activity. Sodas still taste flat but I've adjusted to that, beer is something that also tastes flat and that is rather disappointing. The only thing I've noticed is that I tend to have a slight headache most of the time that taking Advil will cure. I don't know if this is caused by the Topamax. When I do feel a migraine coming on, it seems to take days and never fully matriculates and I have to get a shot of Toradol. All in all, this is much better than the weekly migraines I was having.

Hello, everyone. I didn't know there was a page like this, but I'm glad there is. I've been on Topamax for 3 weeks because the medicine I was on for 2 years didn't do anything and the headaches weren't going away at all anymore; they were continuous. The first week at 25 mg I had the tingling for a day or two, the involuntary muscle twitches, the terrible mouth taste, and the chest pain. All but the terrible taste went away by the second week at 50 mg but I started getting wobbly legs and dropsy. I read an article somewhere where a person on Tomamax called the drug Stupamax or Dopamax and said anyone on it turned into a box of rocks. The box hit me at 3 weeks and 75 mg. I'm not wobbly anymore, I'm still irritatingly dropsy, and I am doing things that only a person with half a brain would do. Plus, my ears have been ringing for two days, and today I feel like I'm in a tunnel and everything is far away. I'm getting ready to call my doctor. On the OTHER hand, I haven't had a headache that lasted for more than a half hour in 3 weeks. So what's best? Going back to headaches or continue to evolve into a box of rocks?

I started taking 100 mg. per day of Topamax a month ago and have ok results, I still have a dull headache everyday but it doesn't turn to a migraine but I have no desire for food and carbonated drinks taste flat and it has changed my mood also. I would like to stop taking it.

I've been on Topamax for about a year. I think the worst thing that happen to me is I totally forgot my childs given name. We have called him a nick name all his life but I'm his mom!!! I was so upset I thought I was going crazy! I still get headaches daily but I know topamax has been the best meds I have been on so far. I have heard that if you combine Relpax with topamax it helps so if anyone has any information, let me know.

Guys this isn't a side effect it is a good option. Why the doctor put me on this is beyond me, but from reading the comments below this may help some of you it is worth looking into rather than poisoning your body with drugs. Google NUCCA chiropractic. It has to be NUCCA not regular chiropractic. Believe me I have been dealing with pain for years from a car accident and have done EVERYTHING to stop the pain. I had the headaches under control with NUCCA after many years until I broke a fusion plate in my neck. Still the chiropractor was able to keep them to a reasonable amount but every time my alignment went out I got a headache, go to the chiropractor, put me back and I was ok within hours. If I hadn't broken the plate, I would be good to go. So as I sit here sick as a dog after throwing the pills in the garbage I am wondering where a broken plate in your neck needs mind-altering medication. It is worth a try guys at least my chiropractor will turn you away if he can't help I ran into someone at my neurosurgeon's office who he turned away, he is credible not all of them are you have to judge their character and talk to the patients and see what they think. I HIGHLY recommend it over these side effects.

Just one question I have been on this stuff at the beginning dose for less than a week. My eyes hurt, my head is about to explode, I am sick as a dog, I lost 5 pounds, I can't eat, constipated, can't sleep, can't function, ringing in my ears, and the ADD is unbelievable. I am a medical transcriptionist I kind of need to be able to work, no work, no pay. Topamax is going bye-bye for sure but how long till the side effects go away?

I have been on topamax for 2 months, just up to 100 MG. I am loosing my hearing, have blurred vision, still have headaches and have been told that they might be permanent. Lets just say I am not impressed. Not to mention all the other BS side affect, nausea, stomach pains, loss of appetite, Mental changes, confusion, Giving me ADD and cutting my IQ from 145 to 80, aphasia, headache, depression, too many to mention. I hate the stuff and am tapering off now.

Went of of T 'cold turkey" after being on for 1 mo. I am left with ringing in the lt ear and now 2 wks. being off T am experiencing hot flushes throughout my body and up in my head with throbing headache.

I just began taking taking 25 mg of Topamax 3 times a day for about 1 week. I have the general side effects: loss of taste, tingling in feet and hands etc... however, my doctor insisted I would be much calmer (I am fairly hyper) and would be able to sleep better. I feel as though I am much more irritable with my young children ( less patience) and I am not sleeping all that great. Has anyone else had these side effects? As far as the headaches, at first, I actually was getting MORE migraines, butthey and the daily headaches seem to have subsided. However, I have not yet experienced the typical menstrual headache/migraines which are the worst for me.

I have been using topomax 100mg daily for 6 months now. I started at that dose immediately, as I was having occular migraines on a daily basis. I experienced terrible side effects of memory lapses, tingling in my face and hands, & speech issues for about 6 weeks. It was about that time that I also realized carbonated beverages were tasting like liquid tin. I also have decreased appetite, and have lost 35 lbs. The side effects were awful in the beginning, but I was told they would subside after my body adjusted to the medication. So, I kept telling myself the effects were due to the medication, and would eventually go away, and they did. I have to admit, those 6 weeks were awful. My kids, hubby and I would joke, because Mom just had a "loopy" topomax moment. As of today, the only side effects are the liquid tin taste of carbonated beverages and loss of appetite, and I am now experiencing difficulties sleeping, which could be caused by something else. For me, the 6 weeks of feeling like I was losing my mind were worth going through, as I am continuing to lose some needed poundage, and most importantly, I am headache free!

I have been on Topamax for approximately six weeks - 100 miligrams for migraine. I have to say that so far my side effects have been minimal and my results have been quite good. I am experiencing some parasthesia in my hands and feet - but it is transitory and mildly annoying at worst. I have found that a lot of foods don't taste very good - and I really only like highly flavorful things like fruits and vegetables. I don't enjoy anything fatty, starchy or sugary. I'd like to be able to complain about that - but let's get real - that's probably a good thing. I've lost about 20 pounds since I started on the Topamax, 20 pounds that I can easily afford to lose. I also find that I am quite thirsty. I was experiencing some tiredness, but by switching to dosing only at bedtime, I have minimized that side-effect. My appetite has diminshed a great deal. I am not noticing cognitive side effects. I have had two migraines since I started on the Topamax (I was having approxmitately 15-20 days a month of severe migraines before), but I was able to take 1/2 dose of Relpax, and the migraine was gone within a half an hour. Typically I woiuld have to take a whole dose, repeat the dose in 2 hours and still have a headache, and repeat for 3-5 days, so I am seeing a big difference in the incidence of my headaches. All-in-all I am feeling quite hopeful that the Topamax, for me, will be an excellent overall solution for something that has been quite debilitating.

I have been on Topamax foe about five months now and it has changed my life! my migraines were so terrible before that I could barley function and took migraine medicationsthree -five times a week. The Topamax has reduced my headaches by about 75% and now an over the counter medication can do the trick if I feel a headache coming on most of the time. Bonus, I lost 30 pounds that I had been hanging on to since my son was born three years ago. I take 100 mg. 2 times a day.

I have been on topamax foe about a year now for severe headaches, it works wonders. But i do have some severe side effectes too. I have a lot of sleepiness, a spasm around my left eye, and the worst of all my hair is falling out. If anyone has any ideas please let me know i don't want to go off of topamax, this is the first time I have been headache free in my life.

I have been on Topamax 50 mg at bedtime for 8 months. I have lost 17 pounds and only get headaches once a month. They last an hour or two and not 3 months. My feet tingle, my vision is a little worse. My stools are always loose. I never had that problem before. Never. I am very happy with the medicine though since I am a fulltime worker and mother and function while I wait for my Imitrex to work if I do get a headache. Great medicine concidering I have been on lots since I have been 10 yrs old and now have weaned off everything but Topomax. I am now 43 yrs old. and living.

I haven't seen the weight loss yet, but have had a decrease in my appetite, but I take imitrex for migraines and have to eat through the headache to feel better. I know weird. Very dry mouth and soda's taste weird, but my teeth are very, very sensitive. I expected the weird taste buds but are the sensitive teeth normal? Taking 75 mg at bedtime. I was on birth control pills until this week. too many headaches!