Greetings! Just checking in with all my fellow EM sufferers to see if anyone has been prescribed the medication, Dilantin? If so, how did it work out for you? Were there any side effects? I had an appointment with a Neurologist at Virginia Mason Medical Center in Seattle, who is familiar with Erythromelalgia. He prescribed this medication due to it's effect on the sodium channel blocker. It's an older medication primarily used to treat seizures. I am so reluctant to try this, the side effects are hideous and I don't want to mess with my brain! If anyone has any thoughts on this, please reply. Thanks so much, as always.
Hi there Shih tzu Mom, I've just done a search on the board for both Dilantin and phenytoin and only found one very old post, so I guess the simple answer may be 'no'.
It is always worrying when we look up new drugs and see all the possible side effects but if you do the same with Tylenol it is just as scary and most of us don't think twice about it because it's an OTC product. And also the law requires that any and every reported event during trials must be reported in the patient information leaflet ... so of course this means there may well be things listed which actually have nothing to do with the drug, it was just a co-incidental event.
This isn't to say we should blindly take anything/everything our docs propose but you have to work with them, discuss what worries you specifically and then make a joint decision. Does the potential benefit to you outweigh the risk? One question that I have found to be most useful is asking "if this happens to me, what are the consequences .... will I/my body recover?"
Hope this helps.