Phenytoin for Myotonia Congenita User Reviews
Brand names: Dilantin, Phenytoin Sodium, Phenytoin Sodium, Extended Release, Phenytek, Di-Phen
- New...
- August 11, 2017
"It's been only a week I am on it, reduced my anxiety, it reduced unwanted electrical activity in both hemispheres (was irritating). It's a lifesaver for me. SE: gum growth, low vitamin D causing joint pain."
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"My brother and I both have Myotonia Congenita and were diagnosed around 8 and 10 years old, respectively. We were put on Quinine back in the 60s. It certainly worked, but the side effects were feeling super racey, hyper, and dry-mouthed, so uncomfortable that we had to lay down shortly after taking it before going to school. It'd be another 30 years of taking nothing till we were introduced to phenytoin. It took a good month before we noticed a difference - he was on 400mg and I 200mg - as his symptoms were worse due to alcoholism. The worse you treat your body, the worse Myotonia Congenital is, though it certainly made a marked improvement in both of our lives. I went off of it every 3 years or so (for a year) to see how my body would react without it. I'd get by, but the older I got, the more my Myotonia symptoms became pronounced. Now at 70, I've had to up the dosage to 300mg to avoid falls. Side effects? None. But that's not the case for everyone. I consider myself very fortunate."