Calling all Topamax users (for migraines)

[luvwinnie]

I made an appt. to see neuro on the 7th. At our last appt. over a year ago he suggested Topamax AGAIN and again I put it off. The potential side effects worry me, but I've used 18 Relpax in 2 months so it's definitely time I think to give a preventive med. a try. Please tell me what side effects you had, did they last long and how long it took for Topamax to help you. Thanks!

 

[Jennasis]

Well, IF Topamax works for you then it is worth the side effects. It did not work for me at all. The side effects I dealt with (and are extremely common with the drug) are:

1. I turned stupid. Literally. My brain was like mush. I couldn't concentrate, spell, count, take directions etc. The drug actually has the nickname "Dope-a-max".

2. My fingers and toes had that pins-and-needles feeling alot.

3. ALL carbonated beverages tasted like crap. For some reason, the drug affects your taste. Soda will taste absolutely AWFUL. As a loyal Diet Coke drinker, this was a deal breaker.

4. I lost some weight. Hmm..not a bad thing.

Knowing how debilitating migraines would be I would say try it, because if it works, it will be worth the side effects. What ultimately worked for me was a drug called Keppra. A MIRACLE drug IMHO.

 

[luvwinnie]

Thanks, I will look up Keppra. I cannot afford to be stupid and forgetful because of my job! That is the part that is most worrisome....and I don't want to lose any weight either.

 

[nicolemomof4cuties]

I have been on Topomax for over a year. My dosage is 200 mg. a day. I am a bit slower mentally then I used to be and quite forgetful but my migraines have decreased by about 75%. I also cannot drink carbonated beveages anymore. They kind of burn my mouth and taste acidic. Some other drinks and foods taste off, also. At first I had the " pins and needles" sensation that was described earlier but it disappeared after about a month. When I first began taking Topomax I weighed 145 lbs. I now weigh about 104 lbs. So there is some weight loss involved, usually. Or there was with me in any case. I hope that I helped.

Nicole

 

[luvwinnie]

I have been on Topomax for over a year. My dosage is 200 mg. a day. I am a bit slower mentally then I used to be and quite forgetful but my migraines have decreased by about 75%. I also cannot drink carbonated beveages anymore. They kind of burn my mouth and taste acidic. Some other drinks and foods taste off, also. At first I had the " pins and needles" sensation that was described earlier but it disappeared after about a month. When I first began taking Topomax I weighed 145 lbs. I now weigh about 104 lbs. So there is some weight loss involved, usually. Or there was with me in any case. I hope that I helped.

Nicole

You lost FORTY POUNDS???? Wow. A bit scary to me.

 

[tmarquez]

I tried Topamax for my migraines and the side effects were awful...especially the mental ones. I quit after a week. Work was very difficult and I made tons of mistakes that I found after coming off of the stuff. At home...well...I tried to do the laundry and couldn't figure out which clothes went where. Plus I still got a headache that week I was on it.

I lost 5lbs in the week I took it because food tasted so blah and it kind of made me "not care"...so I didn't bother to eat. Of course not eating led to a headache.

That's alot fo Relpax in 2 months though. Does the Relpax work for you? Do you take 1 or 2?

As far as preventatives, I also tried Inderal, but it made me fall asleep at work?! I think they are just not for me.

 

[WDWVillain]

it does not work for me or my daughter

 

[KariC]

Well, IF Topamax works for you then it is worth the side effects. It did not work for me at all. The side effects I dealt with (and are extremely common with the drug) are:

1. I turned stupid. Literally. My brain was like mush. I couldn't concentrate, spell, count, take directions etc. The drug actually has the nickname "Dope-a-max".

2. My fingers and toes had that pins-and-needles feeling alot.

3. ALL carbonated beverages tasted like crap. For some reason, the drug affects your taste. Soda will taste absolutely AWFUL. As a loyal Diet Coke drinker, this was a deal breaker.

4. I lost some weight. Hmm..not a bad thing.

What she said, only replace with Diet Pepsi.

I called it my dummy drug. I showed up to a neighborhood party 24 hours early (hello, embarrassing! ). I forgot major things.....Probably should not have been trusted alone with my children...I DID lose all the weight that I had put on during my try with amitriptalyne (sp?)....in 2 weeks. That wasn't bad. I was also REALLY hyper.

And, it didn't help with my migraines. However, we did discover that my migraines were caused by a tumor in my sphenoid sinus (benign...don't gasp). Before we discovered it tho, I had taken more than 24 triptans (different ones...relpax and zomigs were/are my faves) in a 30 day period...8 days of which were at WDW with 2 3 year olds.

Good luck. There are actually on-line support groups for people taking topomax for migraines. (That should give you a clue about the uckiness of the drug.)

 

[luvwinnie]

I tried Topamax for my migraines and the side effects were awful...especially the mental ones. I quit after a week. Work was very difficult and I made tons of mistakes that I found after coming off of the stuff. At home...well...I tried to do the laundry and couldn't figure out which clothes went where. Plus I still got a headache that week I was on it.

I lost 5lbs in the week I took it because food tasted so blah and it kind of made me "not care"...so I didn't bother to eat. Of course not eating led to a headache.

That's alot fo Relpax in 2 months though. Does the Relpax work for you? Do you take 1 or 2?

As far as preventatives, I also tried Inderal, but it made me fall asleep at work?! I think they are just not for me.

Yes, the relpax does work for now at least. I"ve also been on Imitrex shots and pills and Zomig (I think that was it), but they stopped working. I need only one per migraine.

 

[AprilShowers]

Give the Topamax a shot. Some of the side effects kind of wear off. I had some weight loss/ appetite loss, but unfortunately for me THAT side effect has worn off. (the one I WANT to stay around wears off! )

Memory loss is a problem, but I have found ways to cope with it. The tingling sensation has gone away.
It has all but taken the headaches away! Even if I do get one, I can barely feel it, then I take a Relpax and in 20 minutes I'm as good as new!

Topamax has changed my life!!!!
Oh, but the soda pop thing never went away. That was kind of a bummer. But pop isn't good for me anyway.

 

[luvwinnie]

Give the Topamax a shot. Some of the side effects kind of wear off. I had some weight loss/ appetite loss, but unfortunately for me THAT side effect has worn off. (the one I WANT to stay around wears off! )

Memory loss is a problem, but I have found ways to cope with it. The tingling sensation has gone away.
It has all but taken the headaches away! Even if I do get one, I can barely feel it, then I take a Relpax and in 20 minutes I'm as good as new!

Topamax has changed my life!!!!
Oh, but the soda pop thing never went away. That was kind of a bummer. But pop isn't good for me anyway.

Thank you. Wondering if I should wait until the crazy busy time at work is over.

 

[mousermerf]

I was on topamax for a while.

What type of headaches do you really have?

Are they really "migraines" or are they something else?

After being treated for ages for migraines, i suddenly took a turn for the worse. Turns out i suffered from cluster headaches. For anyone not familiar, find a sharp pointy object and suddenly jab it into your face below your eye and to the side of your nose.

That's roughly what a cluster headache feels like. Be sure to twist every 15 seconds for a nice added painful sensation. It's caused by a defective nerve that runs along that area.

I became unable to function, sometimes hysterical because of the pain, and pretty much everything in my life stopped. I couldn't goto work or school (college student) and my family didn't know what to do.

I went to the Dr often, getting new pills and new things to try. Turned out that anything in pill form took too long to work - even if i took it at the start of the pain, like the first twinge. Turns out that's one of the indicators of clusters versus migraine - migraines shouldn't come THAT quickly.

I ended up on injectable Imitrex using the statdose system. I was using like 1 shot per day, if not more. It helped a lot, but it was hard on my body, and i didnt like getting stabbed in the arm every day. I was looking like a drug user and running out of injection sites.

I got put on a combo of things from one doctor - but what seemed to help was the Topamax. I had to go on A LOT of it. For a few weeks i dealt with seeing things (like, inanimate object like walls would ripple, keys on a keyboard would shift) and other such problem - all of the mentioned above - but it was worth it to stop the pain at the time.

After the initil super dosage to get the headaches to stop, i went on a regular but high dose. It made me really cranky and irratable after the stupid/tingly effects wore off. Nothing ever tasted good, but i did become functional. The stupidness gets very mellow, and the tingling does go away.

I went on with life, always carried a statdose of imitrex just incase, and too my pills religiously.

One day i decided i was sick of being moody and having to take pills - so i got tapered off topamax.

Turns out i'm like normal now. I could definately tell that i could focus better and my comprehension of things was back at the normal level as i went off it. Plus, i was happy. On topamax i was always cranky and irritable. Like i had a short fuse.

But - it's over now! it's like 6 months and i've not taken a topamax and i'v not used an injectable. Before the events that lead to me going on imitrex statdose and topamax, even in my mild months, i had atleast 1 bad headache every week or so. Right now? Nadda. Nothing, Zilch.

I like to think that the topamax, while i endured it, stopped the electrical activity from that disfunctional nerve. Eventually, it either healed or died or who knows what - i know they can do surgery to snip it and kill it.

But i'm free! Whoo hoo! So, atleast for folks who feel trapped in the headaches - it can end. I thought i was doomed and nothing would fix anything, but i did get mine to end. I still have imitrex statdose (it lasts for like years) that i carry around and travel with just incase - but that's no worse then knowing you're allergic to bees, ya know?

So, chin up Give the topamax a try for a good period - it takes like a month to really get into your system at the right levels. Give yourself like 3-6 months of being sorta dumbed down and cranky, and then try tapering off. If it doesn't start to work, like lowering the number of headaches and eventually stopping them, of course dont bother staying on it.

Just know that it can work.

 

[nicolemomof4cuties]

Have you decided what to do? I know that it is discouraging when you are in pain. I just had to go in and have a cat scan done. yay rah.....

 

[Forevryoung]

I tried topamax for a week and realized that my grad student life was incompatible with topamax.

I'm about to start Depakote to see if I can get rid of the migraines... I get 1-2 per week. I had one on Saturday night, when my DBF's dog barked I collapsed on the floor and burst into tears from the pain.

They are getting worse and worse and longer and longer. The only thing that helps a bit is the imitrex nasal spray and sleep. It feels like someone is squeezing my brain and stabing at the back of my eyes. Even the backlight from my alarm clock is too much light.

I wish you all the best... migraines are horrible.

 

[mousermerf]

I tried topamax for a week and realized that my grad student life was incompatible with topamax.

I'm about to start Depakote to see if I can get rid of the migraines... I get 1-2 per week. I had one on Saturday night, when my DBF's dog barked I collapsed on the floor and burst into tears from the pain.

They are getting worse and worse and longer and longer. The only thing that helps a bit is the imitrex nasal spray and sleep. It feels like someone is squeezing my brain and stabing at the back of my eyes. Even the backlight from my alarm clock is too much light.

I wish you all the best... migraines are horrible.

If you're using Imitrex nasal spray, ask your Dr about the Imitrex Statdose/Injectable. It works faster and more effectively - you just have to get used to the idea of self-injecting (it really hurts less then being hit with a rubber band).

The nasal spray made me a little better, but still in lots of pain. The Statdose got me back to normal in under 10mins.

 

[luvwinnie]

Have you decided what to do? I know that it is discouraging when you are in pain. I just had to go in and have a cat scan done. yay rah.....

Not yet. I see my neuro on the 7th. Will discuss all options with him. He may want another MRI because for the last year I also get what I call "atypical" migraines...the pain if more on TOP of my head than the side, but the Relpax does work on them.

 

[mousermerf]

Well, the good news is that you're seeing a neuro.

 

[Tigger&Belle]

I'm about to start Depakote to see if I can get rid of the migraines... I get 1-2 per week. I had one on Saturday night, when my DBF's dog barked I collapsed on the floor and burst into tears from the pain.

I went on Depakote recently as a migraine preventative and it makes me SO sleepy. I tapered onto it gradually, but every time I want to increase my dose per the neurologist's recommendation, I have to lower the dose because I can't stay awake. This morning I had to take a 2 hour nap and that's on the lower dose. I think I'll need to come back off of it all together.

 

[GoofieRuthie]

Goes to show that you should always reread the title before posting. I was wondering how Tampax helped with migraines.

 

[luvwinnie]

Started it on Saturday...so far so good. Read the list of the possible side effects online and I had to laugh...sounded like someone sat down and tried to list EVERY POSSIBLE side effect a drug could cause. Constipation, diarrhea, dry mouth, excessive saliva, extrema fatigue, inability to sleep...come on!!!