Topamax..anyone taken it?

[ohiomom28]

I start taking it tomorrow. Just wondering if the side effects are really as bad as they say they are and if its really worth it?

 

[daughtersrus]

My DD took it for a few years for seizures but we had to take her off of it because of the side effects once her dose needed to be raised. She was little at the time and became very lethargic to the point that she couldn't even sit up in a shopping cart seat anymore. She also had problems gaining weight and they were considering putting in a feeding tube. From my understanding, Topamax is now being used for weight loss.

I should say that this is the third drug that she was on. She was VERY allergic to the first one(Tegretol) when she weaned up to the full dose and had to quit cold turkey. From there, we went to Neurontin. Again, the side effects got bad and she was still having seizures. Topamax was third and now she's been on Keppra for several years without any side effects.

All of that said, every person is different. I'm not sure what your situation is and only you and your doctor can decide if the risk of side effects is worth the benefit of the drug.

Wishing you the best!

 

[Tinker'n'Fun]

I've taken it for sleep. It makes me extremely dizzy but it does put me to sleep. If I take it and have things to do and push through the dizzy time, I am wide awake and it does not work. I can not take it constantly as it was affecting my stomach and causing enough discomfort that I only take the med as needed to really get sleep. It also causes dry mouth for me.

Good Luck.

 

[ohiomom28]

I guess I should have said I am taking it for migraines. The doctor called in 50mg but from what I am reading online its taken twice a day? This was a last resort after trying several other meds.

 

[WDWBarb]

DD was on Topamax for about 3 weeks before I realized that her sudden, massive hair loss was a known side effect of the drug. She lost a lot of hair (we had to call a plumber!). Her neuro said that it was a very rare side effect and he'd prescribed it hundreds of times with nothing similar happening to his other patients.

Her hair is quickly growing back (thank goodness!!).

He did tell her to expect to lose weight while on the drug, but she didn't.

 

[Jennasis]

Took it...hated it...didn't work. AND the side effects were horrid. Here's what I experienced on it:

1. Made carbonated beverages taste like boiled dirt. It's actually a known side effect of it. Sinci I LIVE on Diet Coke, this was a problem.

2. Made me forgetful. I forgot names, dates places. If I was driving somewhere, I'd forget where I was going, WHY I was going, or how to get there...or worse, HOW I had gotten to where I was.

3. Made me stupid (hence the nickname "Dope-amax"). Drop ten pennies on the floor and it would take me an HOUR to count them. I spelled things wrong, including my own name. Like living in a fog.

 

[stm61]

guess I'm the lucky one then. I took it and didn't have any of the side effects others have mentioned. All I got was some tingling in my finger tips. My dr also said it helped with weight loss and I didn't lose anything either.

 

[WDWBarb]

I guess I should have said I am taking it for migraines. The doctor called in 50mg but from what I am reading online its taken twice a day? This was a last resort after trying several other meds.

DD (15) was also prescribed Topamax for migraines. For what it's worth, her migraines did get worse when she stopped taking it (but they were also worse than before she took it, which was weird).

She's been through at least 6 different meds since December and so far, nothing has helped.

Sorry to be such a downer!!

 

[ohiomom28]

I just finished taking Corgard and Elavil and they actually got rid of my daily headaches but I was soooooooo tired. I was falling asleep at my desk at work, and barely made it until 6:30 before I was ready for bed.

 

[Jennasis]

If anyone is interested, I had SUPER success with the drug KEPPRA. I tried almost everything else on the market and this was the only thing my neurologist could find to help me.

 

[crz4mm2]

Took it...hated it...didn't work. AND the side effects were horrid. Here's what I experienced on it:

1. Made carbonated beverages taste like boiled dirt. It's actually a known side effect of it. Sinci I LIVE on Diet Coke, this was a problem.

2. Made me forgetful. I forgot names, dates places. If I was driving somewhere, I'd forget where I was going, WHY I was going, or how to get there...or worse, HOW I had gotten to where I was.

3. Made me stupid (hence the nickname "Dope-amax"). Drop ten pennies on the floor and it would take me an HOUR to count them. I spelled things wrong, including my own name. Like living in a fog.

Me too. Dopamax was the worst side effect. Couldn't remember SIMPLE things!

 

[dislaney]

Took it...hated it...didn't work. AND the side effects were horrid. Here's what I experienced on it:

1. Made carbonated beverages taste like boiled dirt. It's actually a known side effect of it. Sinci I LIVE on Diet Coke, this was a problem.

2. Made me forgetful. I forgot names, dates places. If I was driving somewhere, I'd forget where I was going, WHY I was going, or how to get there...or worse, HOW I had gotten to where I was.

3. Made me stupid (hence the nickname "Dope-amax"). Drop ten pennies on the floor and it would take me an HOUR to count them. I spelled things wrong, including my own name. Like living in a fog.

I had the same side effects. The worst for me was the forgetting things. I can see why they call it Dope-amax. I did take it for awhile and it did help my migraines but I eventually stopped taking it because I couldn't stand walking around in a fog all the time.

 

[chisnpeke]

I took it a long time ago. Hated it. My eyes constantly twitched.

I was on it for migraines.

 

[hellokitty86]

I had all the horrible side affects too and it didn't help my migraines. I would be at the grocery store having to pay and I couldn't even count my money. If you would have asked me what 2 + 2 was I wouldn't even know. It also gave me very bad back & stomach pain. I had to go off of it after a very short time.

Hope you have better success with it OP.

 

[crazelion]

I was fine on mine. I don't migrines very often.

 

[ginna74]

Took it...hated it...didn't work. AND the side effects were horrid. Here's what I experienced on it:

1. Made carbonated beverages taste like boiled dirt. It's actually a known side effect of it. Sinci I LIVE on Diet Coke, this was a problem.

2. Made me forgetful. I forgot names, dates places. If I was driving somewhere, I'd forget where I was going, WHY I was going, or how to get there...or worse, HOW I had gotten to where I was.

3. Made me stupid (hence the nickname "Dope-amax"). Drop ten pennies on the floor and it would take me an HOUR to count them. I spelled things wrong, including my own name. Like living in a fog.

I took it and had all the above side effects. I actually took it for weight loss and it couldn't overpower the bad side effect serequel which is to gain weight. And when my lithium levels were being messed with they had to take me off of it. It made my lithium level go toxic and I had a very angry doctor when I left my cell in the car!!! I did hate all the forgetfulness... The metalic taste of the soda was a good thing cause I wouldn't drink it then

 

[emer95]

I've been on it since April and I call it my miracle drug! I cannot imagine my life without it. I started out at 25mg which wasn't high enough, so I take 50 now. Life without migraines is well worth some pesky side effects which wear off after a while.
My migraines were severe and I remember laying in bed suffering and crying, wishing I was dead because the pain was so bad.

I definitely lost weight, to the point where I needed to buy new clothes.

Pop tastes AWFUL to me. I used to love it and I cannot tolerate even a sip now. That's ok with me, though. Pop is terrible for you!

I was foggy/forgetful initially but that wore off.

Don't let the horror stories scare you. It might work for you! Give it a try and if it doesn't work, try something else. I tried many different meds before Topamax and I'm so thankful to finally have the right one. It has changed my life. I am migraine FREE!!!

 

[Lassie Lynne]

I took it too, for quite a while. It did help my migraines, but now, actually, I went off of it, and using other meds, my whole migraine issue is just as good with not taking it.

The worst was when I went to the eye doctor and burst out crying when I couldn't remember my address. The eye doctor was so nice, he even knew that I was taking it before I said anything, just from the way I was acting. A day on topamax was like a brand new day, every day....the same Wendy's I drove by, I kept wondering when they built it....I learned so many new ways to go home (yep, you got it....the SAME way)....and let's not even contemplate going to the grocery store, even for one item, without a note. I also had huge hair loss and what hair I had left was in very bad shape.

So, for some people it works, but for anyone thinking about going on it....look into it and keep lists, your address (I am not kidding about this one actually) phone numbers, etc. in a place you know you can get to it just in case they slip your mind - - especially those first few days and anytime you increase your dosage.

 

[kydisneyfans]

Wife started at 25, then worked slowly up to 75 per day. She lost a ton of weight. The problem is that she lost her job from all the mistakes she was making as she could not think clearly while taking it. Her doctor insists that she needs it, she has weaned herself off of it and the weight is coming back.

She was taking it for migraines.

 

[ohiomom28]

I took my 1st dose last night. Starting at 25mg for a week then moving up to 50mg. I woke up after 2 hours and I felt almost drunk. This morning my fingers were tingly. I was ok after that but I have been in a sleepy daze since about 2pm. The sleepiness happens with all of my preventative meds for the 1st week or so, hope it goes away with this tone too...Gonna go take a nap and hope I can stay awake longer than 9pm tonight.