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Topamax dosage for second time around...

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Post  troyal147 Sat Jun 23, 2012 8:06 pm

Hi all!

I am new to this forum, just found it this evening and found some great information on it and I had a few questions if anyone else had experienced what I am.

I am a fellow migraineur. I also have TMJ. About 4-5 years back I had to go off of Topamax, because it was thought that it gave me kidney stones. For me it was a miracle drug. Nothing else had worked. I was up to 200 mg (100 mg bid) and slowly tapered down.

So, I went off and couldn't find anything else that worked until I tried Depakote ER. This gave me psychological side effects. Now I get botox q 3 months. Works pretty well. I am also on Propranolol.

About a month ago, after clearance from a Nephrologist, I was started back on Topamax at 25 mg. Even at such a low dose it is working great. THe frequency is down but I still get them however. (I am just so excited to be getting some relief) I have been instructed that I can try to go off the propranolol if I want and can increase the topamax (25 qhs > 50 qhs >25 qam, 50 qhs, however, that will increase the risk for stones). I would really prefer to lessen the number of meds I'm on. (I also take Pamelor for migraine, tension ha, ocd as well as Imitrex and Zofran ODT)

Has anyone found that being on a med a second time, that a lower dose does help. Should I stay at the lower dosage now? Has anyone been on this dose and had to increase after "getting used to" the med again. I am happy with the outcome, I'm just afraid that the relief won't last. It has been so rough and to have some relief I don't want to screw it up. I wonder if I keep the topamax where it's at and try to taper off the propranolol...if ha's increase up propranolol again or up topamax? With being on a higher dose before can I expect the 25mg dose to continue to work for me?

Recommendations:
Option 1: Keep it where it's at (Topamax 25mg bid, Propranolol bid)
Option 2: Taper down on Propranolol, keep topamax the same (if ha's increase, up topamax)
Option 3: Taper down on Propranolol, up the topamax.

Any help would be much appreciated!

Troyal147

troyal147

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Join date : 2012-06-23

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Post  Cookie Monster Sat Jun 23, 2012 9:33 pm

Hi TRoyal,

Hey it's great to hear that you've experienced some relief with the right combo of meds. I've been on the same meds as you, along with many others and completely understand your desire to lower the doses as much as possible.

My one caution to you, is if you do decide to lower the doses, be very careful that you have doctor supervising this. I tried to lower my propanolol dose in the past and ended up at the IV outpatient clinic because of the dramatic increase in severity and frequency of migraines. When I went back on the drug, I had to take more than double the dose to get a similar effect, plus I ended up on daily DHE injections as well.

My experience with birth control was the same. Having stopped taking the pill, once I started taking it again the effect was not the same.

I think you are facing a very difficult decision. I know that every time I am feeling even a little bit better, my first thought is to lower my meds and I have managed to lower my propanolol dose by a little bit in order to decrease side effects. My advice is, if you choose to go this route then go slow and make sure that you have a doctor involved. Hope that helps.

Cookie Monster

Cookie Monster

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