I am 26 y/o female and a headache/migraine sufferer for over 10 years. I was put on topamax years ago and had severe, debilitating nausea. Moving a finger or eyeball would worsen nausea. I would pretty much (figuratively speaking) be paralyzed by how bad the nausea, loss of appetite was. Over 6 months to a year, i lost 25-30lbs, and i was 125 to begin with, 5'3". My doctor begged me to continue taking it, as she was sure the side effects would subside leading to relief
And they did. I had significant releif and decrease in migraines/headaches for 3yrs or so. I was in between jobs beginning of 2017, without insurance and was not able to obtain my topamax refill. But I had been on it so long, i figured getting back on it would be no issue. WRONG! When i restarted low dose with intention of tapering back up, the nausea was WORSE. I tried to stick it out for a few days but it was unbearable. Zofran 8mg wouldnt touch it.
So question is.. has anyone else experienced debilitating nausea as side effect, anything that helped it? I just got referred to a new neurologist and she wants to begin botox and prescribed Reglan to try for the nausea i get with migraines. I am seeing Trokendi XR, an extended release topamax, and wondering if anyone who experienced the severe nausea on topamax, has tried the XR form, and had less nausea? Topamax was the only thing that made a difference... and i even tried taking 7.5mg 1x day for a week, then 2x a day for a week, so on and so forth. The dose that had me stable was low, at 50mg twice a day. I just received an rx for reglan.. so im wondering if I could try to get back on topamax if reglan decreased nausea whereas zofran made NO difference. or if maybe a 4-7 day trial of Trokendi XR is worth a shot. Botox is my last shot... and benefit of improvement outweighs risk.. but if i dont have to, i dont want to. Please help with any pointers, experience, stories.. I am a nurse myself and stuck. This is beginning to negatively affect my ability to function efficiently in my job. Sorry for long post, just found this support group! Fingers crossed!!! Thank you,
-Carley