Appleblossoms

I take 120mg mestinon 3x a day. It has been a "miracle drug" for me that has given me my life back.

I did have muscle spasms in the beginning. And I did start at a much lower dose, 30mg twice a day up to where I am now.

I was doing very bad while working as a floor RN and in January 2013 I had to drop to an as needed basis which was very, very part time. In August I took more of a "desk job" as a school nurse and I'm able to work full time and I'm doing very well.

I did.

It's a great study. Tom Petty said the waiting is the hardest part, and that's how I feel about a study like this. How long until we have a blood test that we can all get for the antibodies? 1 year, 2 years? How long until this leads to widely applied treatments? 3 years, 5 years? The waiting is the hardest part.

AM: Mestinon (2), Zantac, Allegra, probiotic

2pm: mestinon (2)

Bedtime: mestinon (2), Allegra, Zantac, singulair, melatonin, topamax

14 total. Sometimes more if I need prn's. Too many

I saw dr. Grubb last week and he did tell me tachycardia during REM sleep is normal in non pots patients and exacerbated in pots patients. I often have tachycardia that wakes me up at night. He said this is normal due to rem sleep. He increased my bedtime dose of mestinon to help with it.

I failed Florinef and midodrine also. Other than side effects I got no help from them. I take mestinon and it helps me immensely.

Thank you. That seems to be the dosing that I'm reading in articles... My MD has me on 75mg twice a day, so I was curious.

For those of you with mast cell/autoimmune issues and take Zantac as a H2 blocker... How much do you take and how often?

Mine gets very very narrow sometimes. I've had it as low as 5 before. It's usually around 30.