September 6th
2008
3:21 PM
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.
-- By aleancol | Reply | (4) replies | Send Private Mail
August 19th
2008
12:19 AM
oh my God I wish I had read this sooner I thought I was going crazy! it seems like the doctors just don't know about the side effects of a lot of these drugs, because I have had ALL of those symptoms- the tingling, the muscle pain, the aches, the feeling of bugs crawling, the itching, the one I have the most now is pain in my arms and legs now to the point where today I cannot lift my arms past the front of my chest or over my head. So I barely stand the shower and barely get ready for work. When I told my doctor this last week, he said, hmmm, I don't know, lets just give it a few more weeks and see. I've been on Topomax for 5 weeks. I started at 25 mgs and worked my way up to 100 mgs slowly. Each time I add more mgs I have more EXTREME fatigue, and spaciness, dizziness, etc. My legs and arm and back pain did not start until the past 2 weeks. THIS SUCKS. But having migraines sucks too. I have lost weight. But I just don't know that I can live like this. The migraines are new for me, as a result of an accident I was in on January 26th. The side effects of the Topamax outweigh the pain from my accident. I might have reconsider taking this. Although I must say, this drug is the kind of medicine that definitely takes a while to understand how it will work for you. A lot of the effects will wear off. A lot of my spaciness or "Paula Abdul" moments as I like to call them, are getting so much better. I'm sitting at 100 mgs and really don't want to raise the dosage at all. I will talk to the doctor and see what he says. That's the other thing... doctors tend to give people too much or dont know how much to prescribe. Starting people off at 50 mg is too much. I take mine around dinner time as it tends to kick in around sleepy time and if I increase I ALWAYS increase on a Friday so I can regulate over the weekend. PS. I also have blood clots in my legs so being on Coumadin doesn't help things either!
GOOD TIMES!
I'm just so glad I'm not alone!!!
Caroline
August 2th
2008
10:16 PM
I'm 20 years old and take Topamax for migraines. It works miracles as far as reducing the number of migraines i get. I went from 4 to 5 debilitating migraines every week- to maybe 1 or none. I'm supposed to be taking 75 mg a day but sometimes i only take 50 b/c the lack of concentration holds me back from doing every day things. Instead of feeling awake during the day, i feel like i'm walking through a dream. The dizziness is bad too. Sometimes when i go to stand up i get so dizzy i will actually fall into a wall or all the way to the ground. The scariest thing is when i'm driving and forget that i'm supposed to be driving. It only happens for maybe 30 seconds at a time but it's sort of like falling asleep with your eyes open and very scary --and very dangerous. At first i had all the numbness and tingling and weight loss as well but TRUST ME, that is NOT what you will care about. The worst side effects are d/t to memory loss, lack of concentration and dizziness.
Try a very low dose of this drug at first and continue with that for a while-maybe even months to see if it helps. I think anything over 50 mg seems to produce side effects that are too dangerous and not worth it!
-- By vaughth | Reply | Send Private Mail
June 25th
2008
2:33 AM
I have been on Topamax for 2 1/2 years at 250mg for migraines and have decided to get off because of side effects. I have had all mentioned: mood swings, dehydration, not sweating,tingling, dizziness, loss for words, short term memory loss,numbness, fatigue, GI problems, anorexic weight loss,rage... And this all began from the starting 25mg dose!
The migraines decreased from 24 a month to 12, at best down to 6 or 7, but I seemed to hit a plateau then back to 15.
I saw three different doctors and all wanted to simply increase the Topamax or add another med (Depakote, beta blocker, etc.)
Finally, I found that a problem with my neck may be causing the headaches and treating that has reduced them enough for me to try and get off the Topamax. I still rely on the Relpax to get me through the bad days, but I'm hoping I can get free of the Topamax for good!
I just encourage anyone thinking of starting Topamax to investigate all possible migraine causes before starting!! Topamax doesn't cure the migraine, it only blocks the pain! And the side effects are not worth it if you can find another way to alleviate the problem!
April 2th
2008
2:21 AM
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?
-- By pandab | Reply | (1) replies | Send Private Mail
February 20th
2008
12:15 PM
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.
-- By ogieoglethorpe | Reply | (2) replies | Send Private Mail
November 29th
2007
10:34 PM
I have been taking Topamax (25mg twice a day) for about 2 years now and it has greatly improved the frequency and intensity of my migraines. (I used to have a minimum of 4 migraines per week, and though medications such as Immitrex and Zomig often work, it's still hard to function properly when you have so many headaches. The Topamax has brought that number down to about 1 per week.) The side effects are not too bad, but I am freezing all the time and very tired - complete lack of energy. I almost feel like my head is in a cotton ball, like everything is just slightly fuzzy and I'm a bit disconnected. I wouldn't call it feeling stupid though... I am still able to do my job well; perhaps a slight lack of concentration. Some dizziness, but nothing serious. I have recently started experiencing weight gain, rather than weight loss (not sure if this is related to the Topamax). When I first started taking the medication, I also had that horrible numbness in the tips of my fingers, but that went away.
I wouldn't want to give up Topamax now, because I just can't go back to having that kind of pain and vomiting 4 to 5 times per week.
Good luck to everyone!
November 29th
2007
4:09 PM
I was on Topamax for 10 months at 100 mg twice a day. At first I experienced severe dizziness and actually passed out twice, so my doctor decreased the dose and had me increase it slowly, every two weeks instead of every week. The entire time I was taking Topamax, I was dizzy when standing, no matter how slowly I stood up, although I stopped passing out. I also experienced cognitive side effects such as memory loss, inability to 'find the right word' (I know everyone experiences this sometimes, but I was constantly having trouble speaking). I was in my first year of graduate school and had switched to Topamax, because I had been taking Depakote for over a year with little improvement in my migraines, and when I started my doctoral work I started having migraines daily. The Topamax did wonders for my migraines, reducing them to twice a month, but I had a severe decline in my academic performance due to its side effects. I had excellent grades as an undergraduate, but I had to take a leave of absence from grad school and switch to another medication and am now hoping that when I return to school I will be able to succeed. I actually considered changing my career choice and staying on the Topamax because it worked so well for my migraines, so if you aren't in school I would recommend you try it if nothing else has worked for you.
-- By ltsunshine | Reply | Send Private Mail
November 24th
2007
10:41 PM
I have been on Topamax for two years had most of the side effects I am used to them. The only thing is I am freezing all the time . Anyone have this?? I am cold all the time!!! I also experiance, in the summer, the no sweating thing, that makes me dizzy in the sun, I have to stay under an umbrella at the beach etc. I never had to do this , I was always a sun worshiper and could take it.
-- By reginajfk | Reply | (2) replies | Send Private Mail
November 2th
2007
1:34 AM
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!
-- By daphielass | Reply | Send Private Mail
July 12th
2007
2:12 PM
Taking Topamax for 2 years started out at 25 mgs 3 times a day for a mood stabalizer (bi-polar). Had tingling in hands and feet sometimes in face. Lost waight, pop tasts nasty, sleepy, short term memory loss, slurred speach. Now I take 100mg at bed time have no symptoms except I still am able to controll my eating (had a problem with over eating) no more road rage but I still felf a little depressed and did cry so I was not to stable until Citalopram 10mg at bedtime and Adderall XL 10mg in the morning was added. Now I finally feel like a totaly normal person. No more anxiety, mood swings, crying, paranoia,or any other weird stuff. I feel pretty good. Rarely I get pins and needles in my hands or feet or I forget where I put something.
-- By tac | Reply | (3) replies | Send Private Mail
June 6th
2007
7:23 AM
I have been taking topamax for 2 weeks and started having dizziness to the point of not being able to stand up. Has anyone else had this?
-- By lucyling | Reply | (3) replies | Send Private Mail
May 28th
2007
5:12 AM
Hi Everyone,
I have been taking Topamax 25 mg for 1 week. I can't stand it. Today I am to up my dosage to 50 mg.I am not sure if I want to do that. The side effects suck.. I think I would rather just deal with my migraines, at least I know how to do that since I have had them for over 25 years. I have tried everything and nothing has worked so the Dr. and I thought we would give this a try.
I am trying to keep my place of employment happy with trying to cut down on the migraines but nothing works.
Most days I just want to give up.
Hopefully we will be able to figure something out.
I can't stand the pickhands and feet, the stumbling like I am drunk( and I dont' drink) nothing tastes right anymore, I have the shakes and I ache.
And all it does is makes me sleepy and like I am in another world.
I went to work today and made it half an hour before I came home because I stumbled and almost fell over. And when the boss talked to me it was like I wasn't there. So I came home. I don't know but I don't like it at all.
May 1th
2007
4:00 AM
I have been on Topamax for 4 weeks and although I have had some side effects, the drug had done wonders for preventing migraines. I was getting 4-5 migraine headaches a week and now I get none or only 1 a week. The side effects I got mostly occured on the weeks I was increasing the dosage and were nausea, dizziness, fatique, lack of appetite and of course cognitive disruption. I could not remember the little things and of course that made you just a little nuts, but I read up on the drug before I started on it and knew all that could happen. I was so miserable with the migraines that I had to try it and hoped the side effects would not be terrible.
I do not regularly drink carbonated beverages so the terrible taste now due to the medication is no big deal. I will continue with the medication as long as it controls my migraines.
March 22th
2007
6:55 PM
Hi All,
I have been taking Topamax for about 3 years now for migraines, and it has been a godsend. I am taking 200mg a day, 100mg in the AM and 100mg in the PM. I experienced all the usual side effects, confusion, dizziness, bad taste, tingling, blurry vision, etc. but these do go away with time. Here are a few things that can be done for some of them. For the dizziness, your doctor can prescribe for you Antivert. For the tingling, your doctor can prescribe for you, I think it was called HZTC or something like that, it was a water pill, I am not sure of the name, but ask your doc, I am sure they will know the correct name when you ask them about it. All of the side effects will go away with time. I did not experience the hair loss, so I can't say if that will go away, but the others will. If you do decide that you want to stop taking Topamax, please do not go off it "Cold Turkey", I have read up on it, and you could put yourself at big risk by doing this, seizures, etc., remember, this was first a seizure med. Please wean yourself off.
-- By txsunlvr68 | Reply | Send Private Mail
March 7th
2007
12:38 PM
My daughter has been on Topamax for 5 weeks due chronic head pain from a fall she had a few years back. This had made her break out, she is already slender, and it has caused her to lose weight. Nightmares have flooded her sleep and causing her to wake up multipul times a night. She experiences rapid heart beat, plapatations if you will, and dizziness. We haven't even come close to what the doctor wants her to be on for her full dose, and quite frankly, I think this medications side effects are worse than the chronic pain she still suffers on top of the side effects.
-- By plake28211 | Reply | Send Private Mail
March 6th
2007
3:11 PM
I have been taking topomax 100mg twice a day for one year. I began taking it for seizures and headaches. I weaned myself off of it in December feeling that it was unnecessary being that I've always been on lamictal as a monotherapy treatment for my seizures and that the dizziness, memory problems and tingly feelings were not worth it. Now the ten pounds that I originally lost and kept off for all this time has came back on and all the while I have been exercising 1 1/2hrs a day (which is new to me) and it isn't helping. I am back at my normal weight of 123 whereas I was happy to be 113 while on the drug. I am going to begin taking it again to see what happens... I don't experience the symptoms I spoke of before-unless I take too much because my memory is bad.
-- By justlew | Reply | Send Private Mail
June 24th
2006
11:29 AM
I started taking Topomax about two months ago for NDPH, a form of daily migraine..I have been on a number of drugs, the latest being lyrica, which resulted in bloating, weight gain and lethargy but finally gave me some relief from headaches..The addition of topomax has helped relieve them further. At first the side effects were brutal! Dizziness, sleepiness, stupidity, slight paranoia ..dis-connect from reality...I almost passed out cold several times and friends said i turned white then yellow...not good...I had this wierd thing happen where I totally forgot what I told a couple of people and vociferously denied having promised to do something for them, only to remember a few days later that I actually HAD promised to do it for them..I called them with abject apologies, blaming the drug..but was not believed. So, I lost a few friends PERMANENTLY due to topomax..I have never had a blackout but it sounds like one, except that I later remembered the event..My eyes have been super dry and irritated. The only lasting physical side effect is a horrible one. I hate to be indelicate, but there is no way to describe this in a pleasant manner...Since the day I started topamax, I have not had a normal bowel movement..I have nothing but what i would call "explosive diarrhea" morning and night..I have to wear those awful shields to bed at night now to keep from soiling the sheets..I am hoping it will go away and don't know if I should see a doctor or what. It atarted when i started the drug so must be related..I hate to stop taking it as it has helped my migraines a lot, and also the bloating..I now take 75mg a day. Any one else experienced thisz?
-- By sheperd48 | Reply | Send Private Mail
February 10th
2006
8:30 PM
I am at the end of week 2 on Topamax for daily migraine relief. I am enjoying the low appetite side effect (-5lbs!) but am having a severe problem with my eye twitching. Was quite relieved to read through to see another had also experienced this annoyance. How long do the side effects last? My migraines are not as strong though they are still present on a daily basis. My main problem is dizziness - does anyone else have success with controlling dizzy spells? I was hoping the Topamax would help. Maybe when the dosage increases?
-- By mlarens | Reply | Send Private Mail
This registry is a place to share positive or negative side effects of using Topamax. If you directly experienced a side effect while using Topamax, then we encourage you to enter it here. Please note that entries here are the experiences of individual users, and in no way means that you or anyone else will experience the same side effect, since the same medication affects people in different ways. Please always contact your physician.
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September 19th
2008
9:42 PM
I was on topamax for about 2 years. I took it for frequent migraines caused by my sinus's. I had all the normal side affects but got used to it after awhile. The only one i didn't get used to was the hair loss. During this time I started allergy injections and now i'm up to my maintenance level. So i decided to ween myself slowly off the topamax. I have been off for about 2 months now and I have been fine on the headache side, but i have started to get other symptoms (i think withdrawal symptoms). They have progressively gotten higher in number as the days go by. First my hair loss has not stopped. I gained about 10-15lbs, I am edgy and climbing the walls all day. I have a really hard time relaxing. I recently developed horrible insomnia, and about a week ago i started having digestive problems including water retention, bloating, gas, irregular bowl movements, and acid reflux. And I've recently had bouts of tightness in my chest and throat which make it difficult to breath (lasts about an hour). I didn't have any of these symptoms while i was on the topamax (except the hair loss), nor did I have them before it.
-- By fornickels | Reply | (2) replies | Send Private MailI 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!