Topamax and hard time

I've been on Topamax for 3 years for migraine and it works most of the time. I am currently having a hard time with the usual side effects of memory loss, hair loss, word recall problems, coldness, depression, no sex drive, and am developing a cough. BUT I had a side effect that has not been mentioned when I first started taking it (25 mg in am and pm -- I'm now on 50mg in am and pm).
For about 2 weeks, I would get in my car to go to work and miss my turns because they would cognitively come up too soon (this is after 15 years of going to work the same way everyday). I had to be extremely conscious of my surroundings when I drove or I'd miss all my normal turns. I got lost in my own neighborhood once going home. At work, I'd get up from my desk to go to a co-worker's desk and arrive there amazing fast to my mind. I was experiencing time/space/distance distortion. It became fascinating to me, but it passed.

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!

My doctor put me on topamax for daily chronic headaches. I worked my way up to 200mg and had all the symptoms, tingling in my hands and toes, short term memory loss, hard time putting sentences together, etc. I backed myself down to 100mg. and the side effects lessoned up significantly. I stayed on 100mg for almost a year (lost 10 lbs.) One day I decided that I was going to ween myself off and started going down 25mg every week until I stopped altogether. Since I have stopped, I do get headaches, usually 1 or 2 per week, nothing like when I started out on the topamax. I have gained 20lbs since stopping the topamax but no longer have a memory problem or putting together a complete sentence. In my opinion, you should try to take the lowest dose possible that gives you the greatest relieve from your pain.

I'm a 26 year old female and I've been on Topamax since March 2007. It has completely gotten rid of the debilitating headaches I experienced 3-6 times a week. It also got rid of my anxiety. I got my life back, my antidepressant kicked in at the same time. I experienced all the usual side-effects, tingling hands and feet, forgetting words, memory problems, loss of appetite, but was COMPLETELY pain-free. I still am. However, I never remember anything now, forget whether or not I did something, paid my bills, etc, lose things constantly, and I have lost about 20 lbs. Not good. I look anorexic. I have bones sticking out. Eating is hard. I forget to eat and drink all day and food is just unappealing. I feel fuzzy and stupid and slow. Not sharp like I used to be. It has killed my confidence and self-esteem. But I was wondering if any women out there got yeast infections while they were on Topamax. I've had one monthly since I started it, and my doc said it's a rare side effect. Oh yeah, I've had mild hair loss and mild to moderate acne now. This drug, it is such a 50-50. Living with chronic pain, those headaches were awful. But doubting yourself is awful too. Anyone have similar experiences?

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????

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.

I was on Topamax for 3 months to try to loose weight. I had severe anger on the drug and suicial instincts. I blacked out often and was very forgetful. I would have a hard time remembering things. One day I couldn't remember where my children had been. It was very scary. I ended up gaining weight on the drug. It all came to an end for me when I called my husband at work and told him that I was going to kill myself and I had no recolection of the converstation when he rushed home to help me.

I have been taking Topamax for approx. 16 months. I began with 25 mg at bedtime and have just a week ago worked up to 100 mg at bedtime. My Dr. was good to prepare me for some of the side effects so that I wouldn't freak out and want to discontinue the medication. I was having about 3-5 migraines a week. It was scary how much Imitrex/Phenergan I was taking just to be able to get through a day only to face another headache. When my Dr. offered me Topamax for "migraine prevention" and told me of possible side effects, he also told me that if I would work through them it would be worth it. He was right! I had tingling in my hands and feet at first that only lasted a few days. I had subtle hair loss after about 2 wks. The most noticable side effect that I've had has been how it has affected my concentration and memory. For the first month or two, I had a very hard time getting out the words I was trying to think of in a conversation and I would forget to do ordinary things. This has gotten back to normal!!!! I encourage you to hold on! The side effects aren't as bad as the headaches - at least not for me! My Dr. also told me that it was VERY important to drink LOTS OF WATER! I even noticed that when I would wake up in the morning and feel the tingling in my hands and feet - if I would drink a glass of water the tingling would get better. The higher the dosage of medicine the more the water; especially in hotter weather. I think my body doesn't sweat as much as it used to unless I drink plenty of WATER!
Just hang on - if you can - and know that you can decrease your dosage and take it easy until your body completely adjusts to that dosage and stay there a while (months) then increase a little more until you get to the goal dosage. That's what my Dr. and I have done. It has worked!!!!!!!!!!

I have been on 100 mg of topamax twice a day now for over three years. Most of the early side effects have worn off like soda tasting bad and the memory loss. I never had any hair loss. Also the weight loss has stopped and I did gain it back which really stinks. Anyway, the reason I was looking, was that in the last several weeks, I have been suffering horrible body aches and joint pain. My hands and knees hurt very badly. I am 39 years old and hate to think that arthritis has set in so quickly. And I know that I can't have the flu with no other symptoms and so often. Does anyone else have these symptoms? Also I wonder why these could have started after so many years of taking it.I have tried to wean myself off in the past and the migrains came back full force.

Really hope I'm not stepping on anyone's toe's here, but... the big thing that everyone here is worried about is the effect that topamax is slowing down their sex life, along with train of thought.
Not everyone must have migraines as bad as mine, or as often! Mine are everyday , and bad enough that well it's hard to say how bad they are. Anyway mine bother me enough that they effect my thought's, what I can remember (or not), And I feel like a somby with the migraines! Oh and well let's see, sex? hmmm I wake up in pain and go to bed in pain, do I feel like sex? NO ! Thank God my husband is worried about me felling better more than sex.
We own a small business, I try to do the phone and running part of the work. With the migraines as bad as they get, I have a hard time remembering who I was talking to on the phone when I got off. I have to take note's (bad one's at that) just to remember what went on in the blurr of the day. And I have had these for many year's off and on, till the last 4 to 5 months then it's become a everyday non-stop thing. I can NOT live with the migraines. My girl's help me as much as they can and my husband also, but it's hard. Each day we all just pray for help and that I can reclame my life again.
All being said, I have only started the topamax for 9 day's now and am startting to see a tiny little help. But would like to ask those here that are upset about the lack of sex and train of thought, was it better with the pain of migraines? And if so then my thought's are that maybe the topamax is too strong for you, and you should see another doctor for a 2nd outlook on your type of migraines. Beacuse there are so many types, and mild to strong.
Like I said in the start, I'm sorry if I did step on your toe's, but just not undrestanding. Don't mean to hurt feeling's at all, just my feeling's.

I started on Topamax a month ago and the first five days were wonderful. I bounced out of bed in the morning after a good night's sleep and felt wonderful all day. I take fifty mg. at night. On the sixth day I noticed I ached in my head and legs. My head felt like it was stuffed full of cotton and after a few more days I was having a hard time thinking and my sleep patterns started getting messed up. Two weeks into this pill and my legs were stiff and my feet burned while my arms ached and my hands and fingers tingled and twitched. I'm a newly wed and love my husband but you'd never know it if you were in our bedroom the past couple of weeks. He keeps asking what is wrong and all I can say is I think it's the topamax. After I snarled at him Saturday he looked at me and said...you have to get off that crap, it's doing you no good whatsoever. I agree with him and am making an appt. with my doctor today. I only hope she listens to me.

I had to laugh reading some of these.

I have been on Topamax for about a year @250mg daily. I have actually gained weight over this last year. I think it might have to do with other medication I am on, and the birth control pills. And The Memory Thing, oh my goodness... I swear I became more stupid. I have forgotten basic math and I have a degree in Finance. I have a hard time remembering basic times tables!!

And oh I hate not finding the right words. It is irritating, when you know what you want to say, it is like right there on the tip of your tounge and you just plain cannot get your brain to get the mouth to say it.

I do have a question for those who have been on it a long time? Anytime the medication level was changed I have notice an increse in sympotms and then they would taper off. It does not matter if the meds were being increased or decreased, there would always be more speech and memory problems. Anyone else have more issues when the dosage is changed? Also, has anyone else had weight gain?