I'm setting up a Dr.'s appointment and I think I'm getting back on Topamax. I've been off of it for two years, but my migraines are getting worse and worse. I've had them at least once a week (sometimes every single day for months.) for about four years now, and a three years ago I was diagnosed and put on a cocktail of relpax and topamax(towards the end I think around 450 mgs?). I was losing about 5 lbs a week pretty steadily for a few months, and then I kept losing the odd pound here or there after that...I got pretty sickly. It also made me dizzy...actually, sort of like how you feel when an attack is over. I hated it and quit taking it after a year.

But lately my migraines have been worse. More painful, the bipolar is getting worse, and I've started getting chest pains and numbness in my arms and legs. when I have a really bad migraine there is absolutely no way I can drive. I tried the 5 mile drive to class a couple of days ago...the migraine was about 5 hours old, so I figured I could sit through a class and I took a couple of Excedrin Migraines. I ended up driving 40 miles before I realized I'd missed my exit. I was concentrating so hard on seeing out the windshield and not running off the road that I didn't see any of the road signs. I've missed dates, class, family gatherings, I can't sleep...ect., because of this crap, and I'm sick of it. The worst part of it is that my family doesn't seem to believe me or care....they think I'm blowing everything out of proportion. This could be partially because I rarely tell them when I have a migraine. I usually shut myself in my room when an especially bad one hits, or if it's not quite as bad I try to function like normal...but I missed class and had to explain why. And my mother said that I was making excuses and that most people get headaches once in a while...just to take an aleve and get over it. Even after I've been diagnosed, even after all of the tests, after everything...I guess I'm just sick of being in pain all the freaking time and not getting any kind of understanding from anybody around me. There are two not so negative effeects...I'm making better art than ever, and I have a funny little speech impediment for a few hours to a few days after an episode(so maybe that's not positive, but it's funny as ****!)

I'm sorry this ended up being so long...I guess I really needed to vent. What I originally intended with this thread was to say that I'm probably going back on that particular drug (it's so very vogue right now) and it'll most likely have weight loss side effects and positive effects on my bipolar disorder (which I've been told is closely related to my migraines, and Topamax is now being used to treat bipolar as well...). Hopefully since I'm an adult now the weight loss won't be as extreme as last time. As long as it's not a scary drop, I'm all for this particular side effect!

And I wanted to know your thoughts on this...anybody have any experience with Topamax? I know it's being used for bipolar and some depression now...My past experience was bad, but imho I don't think that a 15 year old kid should have ever been that doped up with the stuff. Opinions?

I was on Topamax for 5 days and it was a nightmare. It was like having a lobotomy. I couldn't remember how to start my car, forgot to feed the dogs, and couldn't sleep a wink. Food and water made me nauseous, and I didn't eat for almost 72 hours.

Having said THAT, I hope it works for you -- meds affect different people in different ways, so you never know. My only advice is to start it at a time when you have a few days off and aren't expected to be anywhere.

Good luck .

Yeah, 5 days is totally not long enough to get any kind of positive effect. You kind of have to slowly wean yourself onto this drug. You work it into your system 25 mgs at a time...and for a month or so (if not longer) you'll forget things, things will be completely different...your perception is off and your memory is total bosh. I thought for a while that people were sneaking into my room and moving things (I'm talking FURNITURE! Like my bed.) when in reality I'd just forgotten where it was originally.

It's funny to the people around you, but it's actually terrifying! I thought I was going insane.

Hopefully these things won't affect me for quite as long this time.

My 14 yr old son is on Topamax for migraines and it has been great! He was up to 200 mg daily, but is back down to 100mg after having sinus surgery this summer. The only side effect he seems to have is tingling after a dose increase. He may be coming off of it at his November appt though as he does not have headaches often as long as he gets caffeine every day.

Oh boy... that was one of the bigger medical disasters I've personally lived through. I have, miraculously, outgrown my migraines. Used to have them as a very young kid, they started to taper off in high school, and then I had a flare-up in college. I was prescribed Topamax and it made me 1) violently ill, 2) overwhelmingly paranoid, 3) cry for no particular reason, and 4) forget my own birthday.

A breif reenactment:
Topamax to brain: *middle finger* "Take THIS! And THAT!" *kicks, punches, slaps mother*
Me: *lies quietly on floor and wishes for death*

Maybe Sean is one of a few lucky ones??? He seems like a totally different kid now, In a good way! He was having 2-3 migraines a week and now he has only one in a blue moon, is in his first year of high school and loves being in the marching band! He's doing great! He's been on it for about 1.5 years now, since he busted blood vessels in his eyes from vomiting so violently with a migraine. I said no more, that's enough, he needs some relief. Topomax daily and imitrex as needed has done it for him.

LOL, I started at 25 mgs (possibly less). I couldn't stand another day on it, so who knows, maybe everything would have smoother out later. I just couldn't handle it. I'm glad it works for some folks, tho. It's such a nightmare trying to find just the right mix of meds sometimes.

It is a nightmare. Makes you feel like you've gone out of your skull...And you're right, it's tough to find the right perscription for you. I think with something as strong as Topamax, you either love it or you hate it. There are no middle grounds I guess.

ThinWithin, I'm very glad to hear about your son. That has to be the biggest relief..it's like a new lease on life for him, I'd imagine. And you guys, not having to watch your child go through that kind of pain. Although I'm surprised they put somebody his age on it. Did they use the Topamax sprinkle with him? (I think that's what they use for kids...if they don't flat out refuse it.) Also, I hope that the sinus surgery and caffiene work out for him. It would be great if he could get off because...no matter what, even if there aren't any noticeable side effects I don't think it's quite possible to be 100% yourself on that drug. I know I wasn't myself. Just remember, wean him off. Although I'm sure you know that and I'm sure your doctor will tell you. I quit 450 mgs a day cold turkey. I didn't have anything worse than really bad withdrawls (I WACKED OUT!), but I found out later on from my doctor that I put myself at extremely high risk for Grand Mal! Even though I've never had a seizure in my life.

I'm going to try and get an appt. on Monday...I've taken a week off of work starting Friday (I have tests in some of my classes this week.), and I think I'm going to take the first dose after class on Friday. I'm kind of nervous about this...although, ThinWithin, your comments were encouraging.

Kella: Heh, sounds a little worse than my first experience with it, but not too far off! I felt like I was high constantly. I never wished for death, but I wanted off of the drugs.

Unfortunately my migraines are getting so bad more and more frequently...I think it's a fair trade-off. Being uncomfortable on Topamax or being unable to function off of it?

Eee, I get butterflies in my stomach just thinking about it.

I've been taking topomax on and off for two years now for fibromyalgia pain. I started on 25 mg. and slowly raised it to 75mg. At 75mgs, I was walking into walls, had garbled speech, hot flashes, and muscle fatigue. I also had odd thoughts- NOT suicidal, but dumb- like: I wonder if my car would float if I drove off the bridge? I had NO INTENTION of suicide, but thoughts like this occured frequently. Thankfully, I knew they were stupid. But no pain Unfortunately, other than general anaethesia, nothing makes me naseous.

I dropped my dose down to 50mgs and almost all the side effects went away. I had a great year and a half, until my salivary glands and tear ducts stopped working. Topomax can lead to severe dry mouth and dry eye. After 3 months off, I'm back on 25 mgs- a pretty minimal dose. It has a slight dry mouth effect and a moderate painkilling effect, and no weightloss effect. DARN!

Mel

Yeah, after quitting Topamax and getting back on it the weight loss effects are nonexistant.

I'm going to hunt for an opening at a dr.'s office tomorrow morning. I'm new here, so I have no idea who's good or not.

I've been having a constant headache for three days (nothing serious. It's to the point where I can't ignore that I'm in pain, but it's not affecting too much of what I'm doing.) and then today it kicked up a notch. I'm about ready to shoot myself in the head. I'm actually looking forward to being medicated, and that's saying a lot...I've got a big phobia of drugs and doctors.

ow ow ow!

As for the dry eye, I wear contacts and carry saline with me at all times...hopefully that won't be a problem. If so, I have no qualms about switching back to glasses for a while.

Hi there....Ive been on topamax for weight loss since July and have had no negative side effects at all other than the metallic soda taste and slight toe tingling when I was titrating up in dosage. Im at 100mg 2x a day now and doing great in my "non-medical" opinion. I agree everyone will react differently but when it works I think it works well.

Good luck to you in finding something that works for you!

I've been on Topamax for a year now, as a "mood stabilizer" as my doctor puts it. And absolutely LOVE IT!!! 100mg dosage per day. At first, my side affects were pretty wierd for me - I couldn't remember the names of things and people, but that went away after I stabilized my dosage. Right now, the only side affects I have are tingly fingers and hands in the morning and anyting with carbonation in it tastes like nails (that metalic taste folks referred to earlier in this post). Beer, champagne, soda, even Zema - it all tastes really gross to me now. Oh well, it's not like I really needed it anyways. I've learned to just drink more water and appreciate the fine taste of a glass of wine once-in-a-while.

I, too, am a migrane sufferer and those have all but disappeared since I started Topamax - I've only had 1 in the past year!

After my past experiences with antidepressants (a nightmare, to put it mildly!), this has worked out really well for me. I'm also fortuante to have a doctor that listens to my concerns and found a suitable medication for me.

I was on Topamax for *counting* a year. Maybe a little more. It was really good for getting rid of my migranes (which i first started getting at the age of 7) but it did have some...interesting side effects. I couldnt remember anything! Looking back, it's hystarical. i didnt even realize that i acted weird. My poor friends and family. Ive never been drunk or high, but if id have to guess, it probably feels similar to how i always felt right after i took my topamax. i would take it and suddenly everything in life was wonderful and everything was funny! Anyway, i just thought id share my story. Topamax was great for me, and the side effects were getting less and less the longer i took it. If you know that you wont be dramatically effected by all the negative side effects then i say go ahead and go back on it. I know what its like to have a migrane (trust me, throwing up for hours. lol it wasnt funny then, but looking back, that is a really funny story sorry that was off topic. But yeah, migranes suck majorly. You are the only one who really knows how you feel when you are on it or when your off. Trust yourself, did you feel better on it or off? Anyway, good luck, i hope everything goes well.

Wow!!! I thought I was on a relatively low dose of Topamax for migraines, lol. I was on active duty in the Navy and sustained a head injury that makes me have massive migraines (as opposed to epilepsy- let me state I try not to complain, lol). If I didn't take antiseizure meds, I would have a migraine or multiple migraines that covered a collective minimum of 4 days per week. I have no tolerance for flourescent lights. I had to do a super slow taper from 25 mg to 300 mg to get a handle on the pain. The side effects from it, like any medication, were supposed to dissipate or become tolerable/not noticeable over 1 to 2 months. That soooo did not happen. After 1 year, my short term memory got so bad, my neurologist was going to take my driver's license away because I would forget where I was going, how to get somewhere, where I left my car, where I was, and how to get home from work. Not to mention all the little annoying things, like, did i remember to take my medicine? Better yet, did I remember to take my birth control!?!? My poor husband was carrying the load at home. Did I mention I was in the Navy and was expected to perform at my pre-head injury level? Yeah....... Right. So, these days, I am on Zonegran, which is only about 90% as effective as Topamax, but way less malignant and incidious. It was a pretty good trade off. As for the Navy, different story, lol. My doctor is filing a disability claim for me. I'd rather not have to take all this stuff at all, lol. But, back to you- try Zonegran if you haven't already, it's not as rough on trying to be a normal person. Also, I found out that taking BC pills that have any level of oral estrogen makes my migraines way worse and flair up 4 times more often. For women, estrogen is a huge culprit in migraine prophylaxis. Good luck!!!!