Migraine Headaches Support Group

I have been taking Topomax for several years for migraines. The doctor started me out on 25mg. and that is what I am still taking and I call it my miracle drug. I used to have migraines at least 2 - 3 times a month that would last for days and sometimes a week. This little pill has stopped my migraines almost completely. Only once in a blue moon will I get a headache.

I probably started at 50mg. too and went up to 200mg. It did nothing for me and I started losing so much weight I had to get off it anyway. But to be honest, it just wasn't working. Now it has been determined that I got kidney stones due to the Topomax.

I tried it two different times for about 9 months each.

I would be interested to know how long it would take to work if it is going to work.

Topamax is ALWAYS started low (at 25 or 50mg) and then slowly increased until it is effective. Some people find it is effective at reducing migraines at just the 25mg dosage, which is great. The highest FDA approved dosage for migraine prevention is 200mg/day but some doctors do go higher than that. When and if the drug is stopped, it also must be decreased slowly (if you aren't on a very low dose).

I was started at 25mg about a year and half ago, now I am up to 300mg. And, that is the dosage it took to work for me.
Just be aware of the side effects, but don't let people freak you out about them. You will get used to the side effects (in time), and they go away. The best one for me was weight loss!! I was a size 10, and now I'm a size 4!

Anyway, good luck to you.

I am on Topamax started out on 50mg was increased to 100mg 2x a day every day it does help my migraines most day some days it jsut doesnt and I have something else if Needed if it gets really that bad,I was increased to 200mg 2x a day but did not find a difference at all. So I tae the 100mg in the morning and 100mg at night, wish I could say it made me lose weight I need to,feels like I gained each person is different thou.

I started at 50mg/day. Quickly moved up to 100mg/day which is my current dose. I am thinking of asking my doc to increase my dosage. I stopped taking it for awhile and my frequency of migraines definitely increased a lot. Went back on it. Still have them though but not as many and lately they have increased in frequency again so I am thinking I will ask him to increase my dosage to see if that helps. Good luck!

I took Topamax for a couple of months in 2007, but had to stop due to side effects. However, it did work, and I was reluctant to go off of it, but in the end the side effects that I was getting, mainly the elevated body temperature, won out.

I am actually giving it another try now. Took my first new dose last night. The physician that wrote the prescription for me is actually the weight loss coordinator I have to see in order to get my insurance to cover (hopefully, fingers crossed) bariatric surgery in the fall. I had to go to an appointment with her yesterday while I had a raging migraine and she offered to help me until I can get to my general practitioner. I have spent the last two weeks suffering from migraines frequently, with the past week having them daily. So, I am more than willing to give the Topamax a shot.

Just noticed this thread is about a month old, how did it work out for you, Yolanda?

I know this drug has helped many but I am called to tell my story:

I was put on Topamax back in January and was on 25 mg for about 6 months.

During that time frame I didn't have many headaches (and only 2 seizures because I have migralepsy) but the side effects were driving me nuts.

I couldn't find the right words to say and my once amazing memory seemed to have disappeared.

One day I woke up with a terrible migraine and started having seizures again. Very violent ones.

My neurologist upped me to 50 mg.

For the next 2 weeks....I didn't even know who I was.

I had 4 days on 50 mg and on one of the days (when I finally realized something was terribly wrong) I started repeating myself for six hours straight according to my boyfriend and his roommate. They didn't even know what to think so my Dr. ordered me to stop the drug immediately.

He never mentioned withdrawal or anything and as stated before, for 2 weeks I didn't even know who I was and couldn't remember one day to the next.

When I finally got my memory back the pain from the withdrawal is something I'll never forget.

I have never done an illegal substance in my life and I had people accusing me of being addicted to drugs like heroin or even meth because of the symptoms I had.

That was 2 months ago....and I'm still struggling to pick my life up. I did terrible things because of Topamax and from it's withdrawal...I had an officer called on me one night and I also did the worst thing I've ever done in my life and that was hit my own mother.

I don't have many friends left...a lot of my family still won't believe it was the drug even though my Dr. backed up all the side effects and said "sometimes just a little bit is too much for people". The scarier thing is that some friends did come forward after the fact and say that they knew I was different even when I was on 25 mg and they just figured I was going through a lot.

I'm the most positive person I know and during the withdrawal period I had symptoms of depression that were so confusing to me because I felt so helpless and unlike myself.

I also have a kidney disease, and one of the warnings of Topamax is that it can make you stop sweating so those with kidney diseases should not take it. And also, it causes kidney stones which are always a problem for me. No one told me....

So yes....I urge you to research the side effects and look at all possibilities and try your hardest to pay attention to how the drug is making you feel...because it can impair your judgment so much you may not even know it.

Since this incident I have met at least a dozen people with the same story. "Just 25 mg...that's all I got upped...and then BLAM..my brain was scrambled" is just one example of a story I heard.

Also, do not EVER mess with the dosage of this drug before consulting your doctor whether it be upping or lowering the dosage.

A lot like the weight loss but that is not a healthy way to lose weight.....I was 125 and am now 104....I look pretty emaciated if you ask me

This isn't a warning to freak anyone out...it's merely a sharing of my story....I was told over and over again to "get used to the side effects" But what about when the side effects are way worse and more aggravating than your condition itself?

Shouldn't that be a sign to yourself?

Anywho, good luck to all and if the drug is working for you, PLEASE share your story because everyone's chemical makeup is different and doctors have no clue how a patient is going to react to medications.

Just be aware of all possibilities before you make a decision and try to be mindful of the fact that migraines are an incurable disorder and that the only thing neurologists can really do is try different meds that may treat your symptoms.

I know what it's like to be at my wit's end....and it was an important lesson I had to learn: don't just jump at the first pill that pops into your hand without doing your research first.

Thank you so much for telling us about your experiences! I think it's a very important and relevant story. My sister had bad, dark depression with Topamax and cannot take it. As this morning has worn on and the side effects are rearing their ugly heads, I'm remembering all too well why I stopped in the first place. I'm still willing to give it a try, but oh how I wish I were one of the lucky ones that not only does Topamax help them, but they are free from side effects!

Again, like Jenn said, everyone is different so yes please do share your story.

Thats a very low dose. Mine was 100 2x a day. I had to stop taking it because it clouded my thinking bad. But....I did loose 60lbs on it. Yea, 60lbs. Although since I went off Ive gained 40 back. Sucks!