Topamax for Migraine Prevention? Any other chronic migraine sufferers?

[Tigger&Belle]

Are any of you on Topamax for migraine prevention? I was briefly on it last spring, but it seemed to cause cold sores so I came off it. I'm back on it again and hoping the cold sores were only a fluke. Did it help your migraines? How about the side effects?

For those of you not on Topamax, are you on another preventative medication? How often are you getting migraines?

I've been getting migraines about every week or so (the full fledged ones that I have to take maxalt for--I get headaches that I'm able to ignore somewhat, too).

I've been under the care of a neuro dr for a few months and my internist before that.

 

[Chrissi Pooh]

I have been taking Topomax for about 6 months now and in the beginning it was a life saver but the longer I am on it it seems to not work as well so I have been doubling my dose, I only take 25mg in the morning and at night so I upped it to 50mg at night. My doctor originally told me I could keep going to about 125mg but I hate taking something if I don't need it. Anyway i really haven't had any side effects from the medicine itself, I do however get dizzy every now and again really bad and it last for a day or so. I go back in about a month for a check up and I am hoping things go well.

Good luck to you this time, I think it can be good stuff if it agrees with your body and situation!!

 

[Rex Rules]

I had a very strange side effect from topomax. When I take it my tongue gets numb and I can't taste things properly. It is a very odd feeling.

 

[LMC]

I've been on Topamax for a few yrs now. It took at least a month before I saw any benefits from it. I took myself off of it after the first year since "I was better" but it didn't take me long to realize that I needed to stay on it. I am back down to having a few headaches per week instead of daily. I take the Maxalt too when I get the bad ones. I can only take 25 mg of Topamax, if I go any higher, it wipes me out and I can't get out of bed for a couple of days. I've never tried the a.m. and p.m. dosing. I'll need to check on that to see if it will reduce even more headaches.

 

[Poohgirl]

I have been on Topamax for a Migraines for a couple years now. It has done very well. I usually only get 1 a month now down from 5 2-3 day-ers a month. Nothing else I have taken has worked before. Im on 100mg once a day. It took a while (about a month or so) before the initial side affects wore off for me. very thirsty, tingly fingers,toes, tongue, lips. still get that a bit. Sugar tastes funny, I can no longer drink soda - Coke it tastes gross. I was a little dizzy, groggy the first two weeks but that subsides quickly. I have a hard time regulating my temp. in the cold but not in the heat. I have heard other have a problem with heat. If I can answer any other question for you, let me know.

 

[CathrynRose]

Never tried topomax - but Ill be honest with you...

Ive used so many med's - and a lot will work but will have funky side effects, or will work so darn good - and then poop out on me.

I adore Vicodin - Ive been able to get relief when necessary, for years... and it still works. I cant say that about anything else. Plus, I dont feel weird, or worry my heart is going to jump out my chest, or that my blood pressure will sky rocket.

I prefer the old fashioned narcotic drugs, myself. And with so many "issues" with Vicodin (i.e. addiction) it's like pulling teeth trying to get an RX for it...

 

[agotta]

Nothing worked for me until I was put on Atenelol (blood-pressure medicine). I was having horrible migraines above my sinuses 3 times a week easy. Now I very rarely have any pain and if I do, excedrin takes care of it.

 

[jryno28]

I took topomax for about a year for migraines, worked beautifully!! I had a lot of the same symptoms as already mentioned, couldn't drink fizzy drinks, lost 20 pds, fuzzy feeling once in awhile. I took 125mg at bedtime every day. I had to stop because it gave me kidney stones! Make sure you drink lots of water with it, kidney stones can be a bad side effect of the medication!!

 

[Tigger&Belle]

I'm the queen of strange side effects, so if they are out there I will get them. I'm hoping that I can get the decreased appetite--how lucky would that be?

CathrynRose, the Topamax isn't for the actual pain.

I tried Atenolol, but it didn't work for me--trying to remember why. I think it lowered my blood pressure too much and I was dizzy. All the medications start to blend together after awhile.

I sure hope that something works. I'm getting so tired of these headaches. Even when I watch what I eat (MSG, chocolate, etc), when I eat (don't get too hungry, etc), what I drink (alcohol, nutrisweet, etc), how much sleep, how much sun (light seems to trigger and also getting overheated triggers), stress (big one).... and I still get one a week. Sometimes I just want to curl up, especially when I'm extra PMSy like now. It's fun, isn't it?

 

[Tigger&Belle]

I had to stop because it gave me kidney stones! Make sure you drink lots of water with it, kidney stones can be a bad side effect of the medication!!

I read today about the kidney stones and I hope that isn't an issue with me. Pretty sure I had them when pregnant with my last baby, but they couldn't diagnose for sure since I was pregnant. I will up the water--thanks for the heads up!

 

[tinkerrn]

Wow....I didn't know that they prescribe Topamax for migraines. I work in the mental health field. So many of my patients are on Topamax for mood disorders. So many Docs are now prescribing Topamax for weight loss. I have seen quite a few people loss weight with it. Everyone reacts differntly to medication, if you have problems call your MD.

 

[Poohgirl]

Wow....I didn't know that they prescribe Topamax for migraines. I work in the mental health field. So many of my patients are on Topamax for mood disorders. So many Docs are now prescribing Topamax for weight loss. I have seen quite a few people loss weight with it. Everyone reacts differntly to medication, if you have problems call your MD.

The one side effect I wouldn't mind....haven't seen so much

 

[UrsulasMyHero]

I too am on Topomax for migraine prevention. Does it work, yes. Are the side effects worth it? I'm not sure. I started on it back in October,and at the time I started getting a bit of a cough... it went away. In December I got my usual bronchitis. Normally it goes away quickly 2 weeks or so, especially once I;m put on an antibiotic... not so with Topomax. Tomamax tends to magnify the symptoms. It got so bad that I ended up with walking pneumonia and Am now on Leviquin. Ive cut myself back to 50 MG (from 200 ) a day and still am having fewer migraines (less than 2 a month vs daily) but we;ll see if the Breathing side effect goes away.

 

[Poohgirl]

I too am on Topomax for migraine prevention. Does it work, yes. Are the side effects worth it? I'm not sure. I started on it back in October,and at the time I started getting a bit of a cough... it went away. In December I got my usual bronchitis. Normally it goes away quickly 2 weeks or so, especially once I;m put on an antibiotic... not so with Topomax. Tomamax tends to magnify the symptoms. It got so bad that I ended up with walking pneumonia and Am now on Leviquin. Ive cut myself back to 50 MG (from 200 ) a day and still am having fewer migraines (less than 2 a month vs daily) but we;ll see if the Breathing side effect goes away.

Wow, so what exactly so you think its doing to make you sick? I know it does have a decreased effect on antibiotics as well. Im curious because I can't get rid of a small (but annoying) cough/cold I have had for almost the entire winter...

 

[Chrissi Pooh]

Wow now that I hear some of this other stuff....the tips of my toes tingle real bad sometimes even when I am just sitting still (no reason to tingle). very strange if you ask me. I would like to lose weight....how much of this stuff do you have to take???

 

[Tigger&Belle]

Wow....I didn't know that they prescribe Topamax for migraines. I work in the mental health field. So many of my patients are on Topamax for mood disorders. So many Docs are now prescribing Topamax for weight loss. I have seen quite a few people loss weight with it. Everyone reacts differntly to medication, if you have problems call your MD.

I hadn't heard about it for mood disorders, but knowing me it will make me moody. I tried nortryptiline (sp?), an anti-depressant, as a migraine preventative. The problem is it made me depressed.

Any idea what the dosage tends to be for weight loss? Not that I'm on it for that, but I could stand to lose 10 pounds...

 

[ohiomom28]

Never taken Topamax for migraines, but I have had Zomig and Maxalt. the Zomig cause my jaws, neck and tongue to cramp for like 4 hours after i took it. My headache went away within the hour, but if I yawned, I had an awful charley horse in my jaw. Ouch! The doctor switched it to Maxalt, which is similar. I found that I have to stay completely still for about an hour after I take it, no talking at all. Now, I am not on anything and I have a doozy now...

 

[Tigger&Belle]

I don't think that I've ever taken Zomig, but it's not a preventative, right? I had to take a Maxalt tonight. Mind you, I did have a beer with my pizza tonight (beer AND pizza are no-nos, so I figured what the heck). Sometimes I get so tired being good and watching what I eat, drink, etc. I seem to have so many triggers, which didn't used to be the case.

 

[Monte Cristo]

I am on topamx. I take 50mg before bed every night. I didn't have horrible migraines, just a constant bad headache that wouldn't go away. Not debilitatiing like migraines can be, but bad headaches..... Once I started taking it, I have felt much better and I have maybe one headache every other week.

The only side effect I have is that carbonated beverages now taste flat until I go to swallow, then there's the fizz in my mouth. It's pretty annoying to a beer lover like myself. It's like drinking flat beer. But, I rarely have headaches now. It's worth the trade off for me.

 

[crz4mm2]

I have been on Topamax for several months. It has been a lifesaver for me.
I take 25 mg in the am and in the pm. I did get a lot of tingling in my fingers and toes but it has decreased dramatically. I also felt rather 'stupid' at times. But that seems to have improved as well (I think!! LOL).
I get cold sores a lot. The Topamax had no effect on the frequency as far as I can tell.