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Avatar universal

Topamax

I could easily get a prescription for Topamax as I have migraines and my doc and I talked about it at our last visit.  I would also LOVE the weight loss side effect.  Anyone that has or is taking Topamax - does it make you feel nervous?  Does it make your heart beat faster and/or palpitations?  I have anxiety so I can't use it if it will make me more nervous.  Anybody have bad side effects from Topamax?
81 Responses
Avatar universal
Nervous doesn't really begin to explain it. To me, it has just made me what I call scatterbrained. I used to have a very good memory. At my highest dose of Topamax, especially when I first went on it, there were times I couldn't remember my phone number! It did get some better,and they lowered my dose which helped even more, but I still can't trust my memory and its very frustrating. It also affects my speech slightly to where every once in a while I can't say a word or phrase I'm trying to think of or my speech will be slurred or garbled.


I have heard of others, though, who have had severe anxiety and even full blown panic attacks until they got off the topamax and then they were fine again. I would definitely consult with my doc again about it if I were you. It is a serious drug with very serious side effects.
Avatar universal
My wife tried topamax for headaches, she could not tolerate it.  She felt as if she was dazed.  She felt like for lack of a better way to say it, like a ghost...like everything was passing her by and she wasn't really present.  She stopped it because she could not function on it.
2 Comments
I had terrible heart palpitations with Topamax and had to be taken off because of it. The weight loss is temporary and once you plateau your weight returns to normal. Good Luck finding relief... I spent years trying to get adequate relief and after having to change physicians due to Obama Care, I haven't had relief since.
P.S.  The shaking and tremors never have subsidied even after being off Topamax for years now.  And, my migraines are more frequent and more intense then they were before using Topamax.
Avatar universal
the drug almost caused my brother in-law to get a divorce.  His wife was a zombie.  couldnt finish a sentance.  If she started a conversation, people would walk away because they didnt have the time to wait for her to find the words................the house was a mess and the days would just go by with out her.

It has to be dangerous to drive on this stuff.  The short time I took it, I couldnt remember the drive from point A to point B.
I know I did it, but couldnt remember a thing about it. Then I started to have panic attacks because I felt a "not in control feeling".....I was glad after one day of stopping the drug, I was back to normal.

Its my opinion that doctors do not take the side affects of this drug serious enough.  I know it can be a life saver for migrain sufferers.  I live a much to active and social life style to have topomax take a way full days. Let alone the hair it took away from me. Fell out in hand fulls.  
I will admit, I tried it for weight loss and I admit it was a stupid thing for ME to do. Others have good experiance, but not me.
Avatar universal
Thanks, everyone.  Maybe I will just try something else for weight loss.  I want to lose 25 lb. and be a size 4 again so bad.  I just had a baby and feel so bad about myself I'd almost try anything.  I do diet and exercise but the weight isn't coming off fast enough.  I don't like the idea of my hair falling out, which I had heard was a side effect of Topamax.
1 Comments
my hair is falling out and I have horrid kidney flank pain unless I pound a gallon of water a day. it's not worth it
164559 tn?1233708018
Are you nursing?  That took all my baby weight off very quickly.  Don't put too much pressure on yourself to be a size 4 again.  The reality is that child pregnancy and childbirth make your rib cage and your hips wider.  I was a size 3 before I had kids.  Now, even when I am very lean I am a 5-7.  My bones structure is bigger.  

Right now I am a 9 am working out, weight is slowly coming off.  Much harder at 40!!!

Anyhow, I read it takes 2 years for the body to completely recover from child birth.  Take good care of yorself, get exercise, eat well and the weight will come off.  I wouldn't take meds for weight loss unless you were morbidly obese, which you obviously aren't.

Good luck with your wee one.  Don't be discouraged.
Avatar universal
hey, I didn't mean to discourage you TOO much; if your migraines are really bad the topamax might still be what you need. You can work with your doctor to find the best dosage for the most effective results with the least side effects. A lot of people think its great and done wonders for them, and everyone experiences the side effects differently. I just wanted you to be aware of them. There is a site called Topamax.com. There are also other meds available. Ihope you get what you need.

I agree completely with the post that says don't go on meds for weight loss if you just have a little to lose and are able to lose it through natural means. But again just for your information, I will tell you what I am doing. Because I am definitely not in the "little to lose" category! I take a weekly injection at a clinic. It is a combo of B-12 and hcg. I also take an appetite suppressant called Bontril everyday. For some reason I never lost weight with the Topamax, but this program is working really well. I have lost almost 40 lbs since I started it in June. I eat a low calorie diet, drink a lot of water, and exercise regularly as well. It has helped me change my habits for a healthier lifestyle and I believe that I will keep the weight off permanently.

Again, I'm not recommending this unless you get to a point of feeling you've tried everything and its just not working. That's definitely where I was. I'm sure the other poster is right about it taking time to get your body back in shape after having a baby and you just need to eat really healthy and exercise. Let us know how you are doing. Good luck!
Avatar universal
Thanks for your replies, everyone!  I may still try the Topamax because my headaches are pretty bad.  I wear a size 8 right now but want to be a 4 again so bad!  I had a baby 3 months ago and no, I am not nursing.  As far as the injections go, I don't think that's for me - I'm wary about all kinds of medications and substances because if there is a bad side effect to be had from anything, I will have it.  My body is very sensitive to medications.  I guess I just will try not to be impatient and keep going with the diet and try to do it the natural way!
108944 tn?1222277478
you should look at some of the other post on this forum about the hair loss ! the migraine loss and weight is great but the hair loss is not! good luck !
Avatar universal
Hi I started Topamax a month ago for sezures. I have been thin a size 4 for quite a few years. Im 28 years old. I was pregnant in April and lost the baby and sadly gained 20 pounds so when I had to take Topamax I was glad it could help with weight loss. Im at 100 millagrams. I have weird sezures that wake me up at nite I feel like Im having a heart attack I get sweaty and very sick. They say I have a high heart rate but I think its from my sezures. Autonomic sezures. The Topamax causes me to see flashing lites. hearts palpitations, some memory loss, forget where Im driving to, forget normal schedules like .. when my son gets out of school, mood changes, flu like symptoms, nausea, loss of appetite, weird dreams, forget words, paranoya, .. I read all these things on these forums and thought nothing of them until I started the meds.. Im a full time working mom but Im on disability until my sezures stop , they just started a month ago hopefully the meds work in a few months.. Im bored at home I enjoy working.. I work at Lowes I sell appliances. I try to work out Its hard with a high heart rate and the topamax cause weird heart palpatations working out makes me feel sick but I try I need to loose these pounds.. Im a pretty girl who just feels just so ugly.... Please let me know if any one has lost weight on this drug.. And its not so bad if you get through the side effects they go away after a month or so.. -amy
Avatar universal
Hi Everyone I just started Tompax on Thanksgiving and I was really nervous about taking it because of the weight loss issue because I only weight 135 when I started and now I'm down to 132 but I've increased my food in take because it makes me not hungury.   The first week my taste bud made all my coke I drunk taste like flat cokes some still do but I've been feeling lighted a lot this week does anyone else have that problem?  Then somedays its makes me real hyper but today was the day i uped my dose to 50mg.. I've also been having headaches at bedtime this week. Can anyone relate to that?  thanks
1 Comments
I have never had any of these weird things happen to me. I have been on Topamax for five years. I have always been forgetful so I can't really blame it on the medication. I take Topamax for migraines and my doctor increased it lately for weight control and I just wanted to read on here to see if I should be worried. I haven't had any problems in the last two weeks that he increased it. My soda has tasted flat but it was worth it to get rid of the migraines and have my blood pressure go way down. Some food tastes funny. Sour cream has a weird taste and cheeses taste weird at times. Smells will bother you more the doctor told me as well. But I don't have the problems that people talk about on here. Wow!
Avatar universal
everything you said sounded completely normal except the headaches. I don't think I've had a single one of any kind since I've been on it and I don't think most other people do either. Since that is what it is prescribed for, if you are still having them you should talk to your doctor.
Avatar universal
I have had headaches and Ive been on it for a month. Take a few advils that will help. The hedaches will go once the medicine kicks in..that takes a month or two.... any one loosing weight??-Amy
Avatar universal
HI EVERYONE ITS ME AGAIN I'M UP TO 75 MG AND I'VE STARTED HAVING NUMBNESS AND TINGLING IN MY FACE ( NOT EVERY DAY) AND BLURRED VISION  ALONG WITH MY SPEECH SLURRING. AT WORK TODAY I STARTED HAVING NUMBESS AND TINGLING IN MY LEFT ARM AND MUSCLE SPAMS IN MY CHEST EVERYONE TELLS MY I'M HAVING SIGNS OF A STROKE SO I'M CALLING MY DOCTOR TOMORROW TO SEE WHAT HE SAYS BECAUSE I'M REALLY NERVOUS.  BUT I'VE HAD THE MUSCLE SPASMS ON AND OFF SENSE I'VE BEEN ON THE TOMPAX I'VE JUST BEEN TRYING TO LEFT NY BODY ADJUST LIKE EVRYONE SAYS ITS JUST NOW I'M SCARED. HAS ANYONE AHD ANY OF THIS HAPPEN TO THEM
Avatar universal
Tingling in hands and feet is normal but I don't know about face. I get slurred speech occasionally but not blurred vision, I don't recall hearing if its a side effect or not, or the spasms either. It all sounds like enough cause for concern to me. I would definitely call the doc if were me, ASAP.
Avatar universal
Its all normal dont drink caffine the topamax can mess with your heart drink lots of water. Dont drink energy drinks, or energy pills, diets pills, or any of that. Take potassium like bannanas or tomatoes that takes the tingling away./ I had all those symptoms and worse Ive seen cardiologist, neurologist, and 10 trips to the emergency room and 2 months into topamax and all those side affect are gone. just drink water... No caffine, or aphedra
Avatar universal
I have lost weight on the drug. I've been on this for over four months now and have lost over 25 lbs, without really trying. No excersing or anything. I was taking topomax for a mood stabalizer.
I take 150 mg a day, and yes it does come along with memory loss and numbness of feet or arms sometimes or even lips. Forgetting how to spell words or remembering them quicking, the taste of a coke, yes there are many side effects. But is it worth it for what your taking it for. Mine is.
Avatar universal
I have been on Topamax 200mg/day for about a year now and my side effects have included memory loss,studdering,slight body odor,weight loss (80lbs in a year),trouble finding words when talking, forget where I am going when I am driving, and crying VERY easily (being an emotional person) which I was NOT before! Oh and I also have trouble sleeping at nights too. The only other medicines I take are a water pill,adderall(I have ADD) and then Relpax as needed!
I am a healthy 31 female that has suffered from SEVERE migrains my ENTIRE life until TOPAMAX!!!!!!!
I hope this helps, to me the benefits out weigh the side effects but that is my opinion and ONLY MY OPINION!!!!!
Avatar universal
I've been on topamax for over 2 months, I take 150mg at night.  I have had NO weight loss and have such severe mood swings that my marriage is in trouble.  I suffer from the "stupidity" factor and the tingling and the "creepy crawling" feeling on my skin.  I also am dazed and confused A LOT.  I will say this, though.  The reason I continue to take it is because it has drastically reduced my migraines and to me these side affects are worth not having the head aches.  I recently went to my Dr and asked to be put on Wellbutrin to help stabalize my mood swings so we'll see if that helps.  I would have LOVED to had the weight loss, but I didn't, and still don't.  It never decreased my appetite.  I can't, however, drink soda because I can't seem to "taste" the carbonation...but I do keep hoping the side affect will subside.  I was wondering at what mg did you y'all see a decrease in appetite?
Avatar universal
I had a bad experience with Topamax. I took it for seizures. I had the tingling feeling in hands, feet, knees, arms, abdomen, and face. It got to the point where it was actually painful and it gradually got worse, but the tingling was not bad compared to the muscle spasms or twitches. Just under my eye, I had a muscle twitch for 2 months. During that time, I also had muscle twitches on my face, all over my cheeks, jaws and around my mouth. It would even paralyze my mouth for hours. I was on Topamax for 5 months. The muscle spasms and twitches gradually became worse and more often. The were in my abdomen and legs. All of the twitches that I had were visible.

Towards the end of my time on Topamax, whenever I would lay down my eyes would twitch and the back of my head would tingle. I went to my neurologist 3 times about these problems. He told me he had never heard of this and he did not think it was the Topamax. He did try 2 different muscle relaxers and they did not work. I did research and the symptoms I had were identical to Secondary Drug-Induced Dystonia. In the prescribing info for Topamax,  Dystonia was listed as a rare side effect. I finally convinced my neurologist that my problems were coming from the Topamax and he tapered me off and changed my medicine. As I took less Topamax my symptoms decreased and about 1 1/2 weeks after being completely off of it all symtoms were gone.

This was not a pleasant experience and I have recently found several websites like this where other people on Topamax have had muscle twitches especially in the face.
I felt better that I had not been alone.
Avatar universal
Hi everyone.. I have no been on topamx for 2 months and Im on 200 millagrams.. all my bad horrible nasty side effects are gone tingling once in a while ..take potassium drink gatorade it has potassium and it helps with hydrating you cus topamx drys you out.. drink a big bottle a day , carry one around with you 64 oz.. it helps alot.. memory with words still an issue but Im pretty much getting better.. the flu like symptoms are gone.. Im now up to 200 mill working up to 300 mill Ive olnly lost 4 pds in a month maybe ill loose more when I go to a higher dose.. I havnt eaten all month cus going to 200 mill grams made me sooo sick.. I thought I should have lost 10 pds at least.. My appetite is down a little still but almost back to normal.. The side effects go away after a month I think.. cus I was sick last month but Im good this month.. But I do feel edgy .. More anxious when I first came up to 200 mill.. Drink  gatorade.......... It takes the tingles away............And the dry mouth......... lol...
Avatar universal
HI EVERYONE I FINALLY GOT MY TOPAMAX STRAIGHTENED OUT MY  DOCTOR HAD TO STOP ME AT 50 MG BECAUSE MY BODY COULDN'T HANLDLE IT.  THE ONLY THING THATS BOTHERING ME NOW IS HAVE THE THE NUMBNESS ON MY NOSE AND  TIGHTNESS IN MY THROAT AND CHEST I'M CAUSING MY NOT TO BE ABLE TO BREATHE  HEAR LATELY SO I'M GOING TO CALL THE DOCTOR BACK MONDAY AND SEE IF ITS THE TOPAMAX OR SOMETHING ELSE BECAUSE I'VE BEEN HAVING ALOT OF HEADACHES TOO THIS WEEK.
Avatar universal
I USED THE TOPOMAX (I SUFFER MIGRANE SINCE MY FIRST PREGNANCY, 22 YEARS) FOR SOMETIME AND DECIDED THAT FEELING DUMB AND OUT OF CONTROL WAS NOT WORTH IT. FOR MY WEIGH LOSS I STARTED ON BONTRIL sR 105 AND IT REALLY HELPED ME. LOST 68 POUNDS IN 5 MONTHS. BUT WHAT REALLY BECAME A GREAT SOURCE WAS THE B12 SHOTS SOMEONE SUGGESTED IN THIS PAGE. ONES I STARTED THAT, WITH THE BONTRIL, GOOD WATER INTAKE AND EXTRA POTASSIUM (FOODS NO TABLETS) MY HEADACHES STARTED TO GO AWAY. BETTER SAID, LESS SEVERE AND MY WEIGHT WAS. NOW I AM A SIZE 5-6. FEEL GREAT. DO MY EXCERCISES AND EAT REGULAR FOOD BUT WITH CONTROL.

ABOUT WULBUTRIM... THAT WILL GET YOU TO STOP EATING AND EVEN SMOKING BUT IF YOUR MARRIAGE IS ON THE BAD SIDE... BE CAREFUL THE SEX APPETITE ALSO GOES AWAY... MY GINECOLOGIST POINTED THAT TO ME AND SAID THAT MOST PEOPLE DONT NO THAT. REMENBER HEALTHY MARRIAGES DEPEND ON ACTIVELY LIVING AND SHARING TOGETHER.

GOOD LUCK EVERYONE
Avatar universal
I have been on topamax for almost 4 years, for the treatment of bipolar disorder. In the beginning I believed this was a miracle drug. I did not have any side effects that I believed were that noticeable, or could not live with. I did after six months lose 40 lbs, and did not know it was the drug. I did not change anything. Gradually symptoms started to appear, headaches, my vision started going, my body started to ache all over, pain behind my right eye (I have been to an eye doctor) > Then I started losing the feeling in the left side of my body, along with the tingling, and the spider feelings that come during the day. I also developed divticulitis which I can not actually say is completely attributed to the topamax, however, it has caused severe stomache upset, and nausea. I have seen a nerve specialist, and he said their was no nerve damage, and I have been to a chiropractor (who seems to think it is the drug) Also what started 3 years ago, was what I call mild panic attacks in my sleep. They would come and go, and I would not know when they would hit. My depression, has become far worse,as to the fact I no longer have any drive to do the things I use to do. As a result of this I have been off work for 3 years.
In November I made a descion it come off the topamax gradually reducing it from 200mgs. I am now on 75mgs, and the panic attacks are more frequent, also the headaches, the backaches and the muscles aches in my entire body. I sleep 12 to 14 hours a day. I am on no other medication, except thyroid. I have been on all other medications with this drug...and it did nothing to improve..(ie. wellbutrin effexor, cellexa, respidrol,ativan, serequel, lithum..just to mention a few)
The interesting point here is, when I finally stop taking this med, my pysciatrist can no longer see me, because they have to prescribe a prescription drug, and can not use or over see natural sources.

I have run my time with the prescription drugs, and have not gotten any better. There is not quick fix I believe anymore, without severe problems in the future.

Topamax is changing something...and honestly..they have not got a clue what it is..until its too late.

Everyone wants to lose weight, mine was a bonus, I did not know it had that side effect, but when you really think about it...HOW can a drug do this..and what else is it doing...just like the drugs that make you put on the weight...what else are they doing?

Everyone has a story on a forum, from pain, to suffering, and it is difficult to get through. I have come to a point where I have to look at what I eat, and what nutrients I have been missing, and maybe that will help, instead of becoming sicker. The drugs have not been the answer in my case over 14 years.
Avatar universal
I would not recommend Topamax or any other drug for weight loss, particularly if the need is minimal.  I have been taking Topamax for two years for migraines.  I don't know if it helps or not.  I still get migraines.  I take Imitrex to stop them.  However, migraines are so complicated for most people and change so much over time that nothing works forever.  The problem for me was that I was on Paxil and estrogen (after a hysterectomy) to control the migraines.  I had been on an antidepressant before while I was taking birth control pills; that's when my migraines started.  At any rate, the Paxil and estrogen in small doses three times a day worked for about four years--of course we had to fight with the insurance company.  After two trips to the emergency room and a letter from me and the doctor one summer from hell, migraines nonstop day and night for eight weeks, the insurance company is more agreeable.

My point, eventually, (I've had an intractable migraine for 12 hours, and I'm up in the night just to stay in control of my wits.) is that added medications add layers of side effects, and they change. My other doctor who has been treating me for headaches for the past two years keeps adding medications without taking any away.  I talked about it with her a little, but she was reluctant to stop the Paxil.  Recently, over several months, I discovered through observation and elimination that both the Paxil and the estrogen (Cenestin) were starting to cause migraines every time I took one rather than preventing them as in past years.  As I reduced the Paxil, my doctor asked if I would like to try Cymbalta--I have much body pain.  It helped for a while but then the side effects suddenly became intolerable after two months; after three months I was gone.  Somehow I decided to quit that, too.  Now I am not taking an antidepressant; the withdrawal has been very hard and at times very scary.  However, my personality is back.  I have fewer migraines.

The nasty, untreatable migraines come when I take Ultram for my a back injury from last fall and when I take Fioricet for headaches--it happens if I take these medications for more than one day or for the full prescribed dose all day.

I'm still taking Topamax, but sometimes it seems like it causes migraines or at least regular headaches.  It also causes stupidity, which I find unnerving.  Sometimes I decide to go with the stupidity, but then it gets worse and I can't find the words I want; then I get headaches anyway.  I lost weight, but I had gained weight only because of the antidepressant in the first place.  I hurt all over; it hurts to press on my muscles. With my doctor's supervision, I have experimented with Topamax going from 25 mg to 50 to 75 and briefly to 100 mg.  Recently I have been going back and forth between 50 and 75--I want to stop, but I'm afraid; I'm also afraid not to stop.

Does anyone out there have any advice about Topamax and migraines and pain and stupidity?

Is there a doctor in the house?  
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