Has Anyone Been Offered Epo Or Octeotride Treatments In The States?

[jangle]

I've seen publications recently about both these treatments being effective in treating POTS, but none of my doctors I believe have even heard of their use in POTS, and even if I brought them the studies I doubt they would consider it.

I know a few people on this forum have tried octeotride with success, but has anyone tried EPO?

[roxie]

I took EPO shots years ago. It did start to help, I wasn't blacking out everytime I stood up and it raised my blood counts. After being on it for a while I started getting really bad migraines and then one started that wouldn't go away, I ended up in the hopsital and they had me stop it. The migrain eventually went away but I never restarted the EPO.

the shots are super painful. It was 10 years ago, maybe dr's are stricter with prescribing it now since it got a black box warning?