Has anyone heard of these medicines?

I pretty much did my own research since E.M has to do with our sodium channels I started looking for sodium channel blocker medications and I found these Quinidine, Propafenone and Quinidine. Has anyone heard or tried any one of these? If so what were the results if you don’t mind me asking?

Sorry the last one was supposed to be Flecainide?

i want to try them but my doctor is hesitant because i have low blood pressure and sodium channel blockers are for lowering blood pressure....

Plus your heart has to be monitored some times. Hopefully someone can try one at least, I’m trying to not lose hope but soo many people with E.M are getting discharged from doctors and losing hope themselves :frowning:

I think mine was called Niphedipine and it gave me horrible leg and arm pain.

Hmm. It was a sodium channel blocker?

opps sorry, no its a calcium channel blocker...

i was told we are actually missing the gene that produces the sodium channels so i Don't understand what else you can do .i have been suffering EM for over 10 yrs and now its in my hands but i have taken a variety of tablets ,now im on methadone tabs ?and at least im not in a huge amount of pain except when summer comes it gets worse?

Does the methadone tabs get addicting though?

I’m not exactly sure now lol. Because I was told that our sodium channels just don’t work like other people’s do, ours over active or something like that. O_o

i know any pain medication gets addictive but there is no cure for what we have and i think we all suffer quite differently and ive been in pain for 10 yrs and tried many pain killers without much success and also pain patches which are definitely addictive but my pain management team has said methadone isn't as bad and least side affects and they are right ,i function fine with them !been nearly a yr now .

Katherine said:

Does the methadone tabs get addicting though?

Yes some medications are more addicting than others that’s why I asked. Really? I’ve heard of numerous people with E.M that have also gotten relief with methadone. I have lived with this my whole life (21 years) and I’ve tried almost everything! I barely get relief from the numerous meds I’m on now so I understand! I’m glad you’re getting some relief now.

Hi I used methadone for 8 yrs it worked well But it bought about chronic sleep apnea, myasthenia gravis. .i had to asses my situation and with my Drs help I eventually got off them . !