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08/30/2007 01:40 PM

Anyone found an alternative to topamax?

Kassidy
KassidyPosts: 21
New Member

Has anyone found a good alternative to topamax? I am so tired of being dumb. I manage to keep the headache at bay most of the time with a combination of topamax, lyrica, and verapamil. But if I go beneath 75mg daily of topamax the headache comes back. I hate not being fully myself. I know my driving is impaired, my 12 year old is quicker than I am, and though I used to be considered articulate now I have a hard time getting a clear sentence out of my mouth. I need to find an alternative. Any ideas?
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08/31/2007 05:31 PM
MaryR
MaryR  
Posts: 4122
Group Leader

Hi Kassidy, I still take topamax so I am not much help to you. I see you are already taking lyrica. Maybe neurontin, tegretol or one of the other anticonvulsants would work. They may have similar side effects though. I am not sure because I have not taken any of the others (I tried Lyrica and was allergic, but that doesn't count). Hopefully someone with more experience will stop in. I know that the topamax can be very frustrating. I don't know how much to blame on the headache and how much to blame on the medication, but I feel like I have lost about 30 IQ points. I also get my words tangled up a lot especially if I am tired or hurting a lot. I hope you are able to find something that works for you. Mary

09/03/2007 09:09 AM
ralash
ralash  
Posts: 2
Member

I take 200 mg a day of the topamax and I found and have collaborated w/my dr on this....If I take all of the pills at once at night about 2 hours before bed I don't feel as slow throughout the day, yet it still helps.

09/03/2007 09:24 AM
MaryR
MaryR  
Posts: 4122
Group Leader

I take mine at night before bed too. Maybe this is an important key to minimizing the effects of it, though I still have my stupid days. I expect it would be a lot worse if I took mine during the day or throughout the day...I think I would be asleep actually. Kassidy do you take yours at night too? If not you may want to try that and see if moving the time of the dose around helps. I hate that we still don't have any names of alternative medications for you. There has to be someone who takes something else. I just don't know what it is or how it works. I keep hoping they will see the thread and post somehting for you. Mary

09/03/2007 09:18 PM
Kassidy
KassidyPosts: 21
New Member

Thanks to both Mary and ralash. I appreciate your input and concern. I do take my Topamax at night, so there's no room for improvement on the timing. I do plan to ask my neurologist if there is an alternative I could try. But I have seen a tremendous amount of improvement and should not complain. I saw my mother-in-law this past weekend and she told me that when she had been with me during the time that the pain was the worst, and she had asked me if I wanted to see my daughters graduate from high school, I had told her that some days I didn't care. The pain had been so bad I hardly wanted to be alive. And now my days are mostly pain-free; I'm just dumb (as Mary said, I'm down by about 30 IQ points.) but I'm laughing with my children and husband and involved in life again. I am very thankful. I do hope I find a substitute for Topamax but it (along with Lyrica) has really helped me. (Actually I believe God has helped me, but that's a whole 'nother discussion.) Smile

09/04/2007 01:18 PM
MaryR
MaryR  
Posts: 4122
Group Leader

Wow Kassidy, when you put it like that it does make you stop and think about how far you have come since the beginning. I know I am functioning a lot better than I did at first and the pain levels are a lot better. I actually notice that my life is restricted now, but then I just wanted everything to go away because it hurt. It is annoying when I realize that my sisters are now a lot smarter than me (one is making a web page and I can't understand anything she says...I used to be able to learn stuff too) but at least I am at a low enough pain level that I can care what they are up to. Thanks for a little perspective and reminder that things are getting better...just very slowly. Mary

09/05/2007 08:49 PM
wanda
 
Posts: 2
New Member

An alternative to Topamax could be Geodone or Depakote ER. I prefer the Depakote ER but according to my physician it sometimes works better when used in conjunction with a beta blocker or a triptan.

Another alternative that will get you out of the fog (and I've been there) is to take Maxalt at the onset of the headache (or as you feel it increasing drastically), take a second tablet in 2 hours and if this still doesn't knock it - get your doctor to prescribe Toradol injections for you. You can administer them at home in conjunction with the Maxalt and can take up to 2 shots per day, do not use more than 5 days in a row.

Another option, go to the emergency room and ask the doctor to administer an IV of Magnesium and toradol or depacon. The magnesium will usually bring down the headache the quickest. You can also take up to 400 mg of magnesium (tablets) every day to help keep the headache in check.

I hope some of this information helps.

Wanda


09/07/2007 04:48 PM
MaryR
MaryR  
Posts: 4122
Group Leader

Hi Wanda, sounds like you have had some experience. I am glad someone finally had something that they use besides Topamax. Did the Geodon work for you? I was curious because I am currently taking Seroquel for my headache and it has significantly reduced my pain. I have not heard of anyone else taking an antipsychotic for NDPH so I don't know if it is an unusual treatment or not but I am just happy that it works for me. It looks like you have also found some things that work for your headache. Thanks for sharing and welcome to the board. Mary

09/19/2007 08:05 PM
Kassidy
KassidyPosts: 21
New Member

Hi Wanda, thanks for your feedback. I've taken the Depakote and unfortunately it not only does not help relieve my pain, it makes me sleep all the time and makes me gain massive amounts of weight (which I'm still trying to lose!) Also, I do take 400mg of magnesium a day (prescribed by my doctor.) But I know nothing about Geodone or the other alternatives you mentioned. I'll add them to the list I'm compiling from this board to take to my doctor at my next appointment. Thanks!

09/19/2007 10:40 PM
MaryR
MaryR  
Posts: 4122
Group Leader

If you haven't added Seroquel you might want to add that too, but I am pretty sure it works differently than Topamax since I take both. It has helped me though and if you have the doctor cornered you might as well ask as many questions as you can while you can. Hope you are able to find something... at least you will have plenty to talk about at your appointment. Mary
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