Topomax

for me: i had a dull headache for the first few weeks. Nothing compared to my normal migraines but don't let it discourage you.

Working a lot better than Inderal :)

might have to play with the dose though, I was doing well at 100 for awhile but then my migraines starting coming back, I'm up to 150 now and will probably jump up higher soon... just be patient.

-philski-

I started on Topamax about 3 months ago. I got up to 75 mgs and had to stop. The side effects to me were worse than the migraines (course I didnt have a migraine at the time, so that was easy to say) When I do have one, I'd just as soon chop my head off and be done with it! ANYWAY,,, Do some googling on Topamax and watch for the side effects. I got really bad sores in my mouth and couldn't eat. (which is one of the few pleasures I enjoy in life!) It will also make soda taste like crap so if you are a big soda drinker that will stop. I quit taking it about a month an a half ago and still don't drink soda. (which is a good thing)

There are many side effects to Topamax but if you can handle them it is supposed to work wonders. Just don't increase too fast. I had trouble talking in complete sentences, couldn't focus and felt like I was in a fog most of the time. I also had joint pain and nausea....

Sorry, not trying to scare you... just do some research on it and if the side effects get too bad, call your neurolorgist asap. They will have you cut back a little and try again.

Tracy

Nicky,

i just decided that not drinking soda was good for me and didn't look for any substitutes.  I did switch to tea though..... just as bad for the caffeine!

Tracy

Most meds. that the Dr. has had me tried has had alot of side effects. It really doesnt matter what the name of the med is it will have side effects it is just the matter of after the side effects will it be worth it or not? So far my experience with the Topamax it has been, cuz now I can function again & do things with my family again. Don't increase them too fast or it will be too imbarable. I wait 2 weeks before I up my doses, longer if I feel the need.

Thank you Rabbit... It's funny you should mention tingling.. last night I had tingling and numbness in my lips... kind of freaked me out but then figured maybe it was the topamax. thanks again!

Sarah

i have been on topamax for 4 weeks and have only had one bad migrane.  I am up to 100 mg.  I have tingling and feel doped up alot of the time but thie side effects are gettig better.  The problem I am having is with my mood I am having the worst bout of depression I have ever experienced in my life.  I am also experiencing uncontrollable anxiety.  My ativan does nothing.  I see my doc in two days.   Has any one else had this?

TOPOMAX INFORMATION!

I HAVE BEEN ON IT FOR NOW 4 MONTHS I HAD LOADS OF SIDE EFFECTS ON THE TOPOMAX TABLETS AROUND 50-75MG PER DAY UNTIL I VERY CLEVERLY TRIED THE SRPINKLE FORM CAPSULES AND ALL SIDE EFFECTS HAVE NOW DISAPEARED FOR OVER 3 MONTHS! !

SPINKLE CAPSULES ARE THE WAY FOR TOPAMAX, NO IDEA WHY BUT NO SIDE EFFECTS!

100% !!!

I have been on Topamax, this is the 3rd time now... the only reason I have been off of it is loss of insurance...I am up to 400mg. I love it, it is the ONLY thing that has managed my migraines.

I would sell everything I own (except my dog) to stay on it to keep everything in check. As far as side effects, I occasionally have "pins and needles" and a small twitch in my left cheek...but in exchange for debilitating migraines,...I would gladly trade them in any day.

For those who don't like it, FINE...we are all entitled to our own opinion and I know everything doesn't work for everyone....I just want to share with those who are interested:

I think that there are combinations of things that work differently and mine was Topamax, Wellbutrin and Inderal....and it took forever to make this work (as far as dosage and combination)....but the right doctor, the right medications and educating yourself is the best way to get there....

Now, I still struggle and have bad spells. Right now I am trying to get back to "good" since I haven't had insurance for 3 months and trying to get back on track...

Any questions...feel free to ask!

Sara

hi there - i am at the 50mg dose and it seems to be working, my pcm said if i need to go higher because migraines seem to come through, higher than 100mg, he will send me to a neurologist, alrighty then.
so far i've experienced the tingling in my hands, feet and face, and constipation (lovely when you have ibs already). I had what i thought was going to become a migraine, took my zomig and 1 hydrocodone, slept for one hour and it was gone, never got rid of a migraine like that before.
not only that, but the last two weeks have been out of the ordinary. my f-i-l died suddenly of a massive heart attack and we got the news in the middle of the night and my hubby had to drive up to ny for his mom and then to PR for the funeral and such... it's been stressful to say the least. i thought the doc wouldn't want to see me in light of everything, but in light of everything that i wasn't down with a migraine is good, so i'll take that.
i think the mini migraine might have been one, or maybe needing my allergy meds, which i've begun again, tis the season, i'm just glad it went away.
i have terrible dry mouth, but that also comes with the lupus and stuff and the other meds i have to take, right now my med of choice is those vitamin c candies, they taste good and maybe they are helping and i am not swallowing yet another pill for which i am grateful.
i'll just go day by day with this and see how it goes, so far, i am thankful it seems to be working and at a low dose AND i am back to what i weighed before chirstmas THAT is nice!

I had tears fall from my eyes when I read these posts. I must thank all of you before I begin. So, thank you. I'm a 33 year old woman (obviously by my nick name) who has suffered with migraines my entire life. Well, most of what I can remeber of it. The first time I was treated for it was when I was 18 and had to go to the ER for a shot. I slept for 3 days.

I have been through the gammit of drugs, pain meds, shots, blood pressure pills, you name it, I have been on it. Unless they have JUST come out with it. I have tried it. Then, they put me on Topomax back in July. I still had migraines but they weren't as bad. Ok... cool. Then I got to where I only had them at "that time" of the month. Not a problem, my neuro treated me for that. So they weren't as bad. I have to mention, back then I was as randy as a stallion with a mare in heat. "I want some more" was all I ever said. Now... I'm a month a half away from my wedding date. And, well, I can't get it up, so-to-speak. When I do engage in premarital play... I cannot play to the utmost of my ability, whereas, previously I was blessed with the ability to play and play and play until the cows came home. I miss that. Desperately. So does my fiance.

Recently, The docs believe I had a stroke. I said "what?" We think you had a stroke". Although, there is no permanent damage and nothing shows up on the MRI, although there was something on the CAT scan. Why they did a spinal tap, I don't know. But, they had to do a blood patch to repair it. My neuro up'd my dosage of Topomax (which although I have to wear glasses now has been amazing) to 100 mg a day, Amitryptiline 50mg, Lyrica 50mg. I have Relpax for when I do get a break through migraine (those are amazing, but only if you take it with Ibuprofen 600mg and then follow in an hour with another Relpax), I try not to take any more narcotics or pain pills or what not.

I'm confused all the time now (just up'd the dosage), no sex drive, iritable, dizzy when I stand up. I stuttered really badly with the "stroke" episode thing... took over a week to come off from that. I have to concentrate on my words. They gave me tons of steroids in injections and by step down packs. I gained weight. I haven't really changed my eating habits. It's incredibly depressing. But, I see a bit of light at the end of the tunnel reading these posts. I'm not alone. Thank you. This too shall pass. Maybe it will all straighten out by the time I'm to slip into my wedding dress. And I better SLIP into it and not have to be POURED into it.

I should also mention that I have a HUGE list of foods that are triggers for migraine sufferers and found that it is pretty accurate.

PoniiGurl

Thank you for the congrats. Topomax is working so far at the 100 mg dosage but it is causing me to go myopic quickly (within 7 days my eyesight changes drastically) I've changed prescriptions 3 times in four months because of the medication. I finally am "sucking it up" as my ten year old says and waiting until we get the "right" combination for me, and then I will go back in and get new lenses. I didn't wear glasses before November when I went from 50 mg a day to 100. The neuro tried to back me down because of the eyesight change, but well... the dark horse rose up and threatened to take me with him. (Which is a little odd cuz I'm getting a dark horse for my wedding present.. heehee) For me, I chose to take the side effects. I just didn't realize that some of the other things that were going on were BECAUSE of the Topomax as well.

I didn't realize the forgetfulness and the problems with remembering words and dizziness and no libido and I could go on. But ya'll have given me hope that they will dissipate. I will once again be me. My fiance says I'm no longer as bubbly as I once was. Actually last night, I have the problem with sleeping, but I finally slept. Do ya'll have strange dreams? I was dreaming of playing in the snow (as an adult) Very vivid dream! We were tunneling through the snow by the fence-row. We had spots where we could get out of the tunnel, but they weren't very big and I went to get out. I could hear them up there throwing snow on me and laughing. I would scoop the snow away and they would throw more down. I screamed at the top of my lungs, "QUIT THROWING SNOW ON ME!!" My fiance sat straight up in bed. I shouted it out loud. I woke myself up and of course him. He thought something was terribly wrong. I told him what I was dreaming, giggling the whole time. Tears were coming out of my eyes, I was giggling so hard. He just laid back and said it was so nice to hear me laugh again. I have some looney dreams when I do sleep.

I'll check out your post. I'm always checking anything about migraines I can get my hands on. My ex-mother-in-law still turns me onto articles she reads in magazines or newspapers if it says ANYTHING about migraines. Food is a big trigger, even a tiny bit, and some of the food you wouldn't think they would be. I found out that I can't handle anything dairy. Not milk, ice cream (oh and I love ice cream), cheese, I think I'm even having trouble with non-dairy creamer. Tomatoes I have found are a trigger for me. Here I am babbling along again.

Have a great day everyone!
PoniiGurl

I clicked on this site by mistake....am active on the lupus forum....but thought I'd add some of my experience with topomax. I took it for a couple of years and loved it, especially the unexpected weight loss. That was wonderful. But I started having trouble finding words, then memory loss became increasingly serious, not to mention embarrasing. I felt as though I had alzeimers and could tell that my friends noticed it too. To the extent that they were treating me differently, like you'd treat someone with dementia. So I talked to my primary care doc about it and asked if the memory loss could be related to the topomax. She said she calls it the Stupid Drug because it makes you feel like you're stupid. She had a patient who was a professor and he had to stop teaching. Then he went off the topomax and went back to teaching.

So I stopped it and my memory problems went away in a couple of weeks. Too bad because I loved the way it made me feel and I loved the way it curbed my appetite. But for me anyway, it wasn't worth it. I doubt it affects everyone that way, but thought some of you would like to know, in case you're experiencing the same thing I was.

By the way, the best remedy I've had with my very occasional migranes is accupuncture. It really works for me.

Good luck with your migranes!