Hi, I'm from the dysautonomia forum. Recently, I've lurked here and posted occasionally because people on that forum also use mestinon, have trouble in the heat and difficulty breathing.

I find that I am in a similar situation. I am having extraordinary difficulty getting medication for my problem. It will be several months at least before I get in to the specialist and can get mestinon.

I have a sort of "different" belief system from some people: I think that people can get sicker or even die from lack of treatment even where "ostensibly" perfectly proper "medical protocol" is followed. I also always imagined I'd only be "diagnosed" at autopsy. I have difficulty breathing on a lot of days, I feel like I will stop breathing at night, and doctors will only give me medications which are contraindicated for my condition in the name of proper procedures (I nearly collapsed with dental anesthesia which they will all still swear I shouldn't have a problem with) -- and will not give me the ones I need.

In light of my weird world view, I am now using nicotine or Huperzine A (depending on the day) (and refusing medications which make me sicker). Nicotine and Huperzine A help me to breathe when I can't. I am extremely careful about how much I use and start with very small quantities.

I don't like using herbal remedies because they are not approved and I don't like using nicotine. But I'm not getting awards for my views, my doctors will only give me medications that hurt me, and at the end of the day, nothing compares in delight to breathing without thinking about it ...

This is not a recommendation for what you should do but I did want to share how I am coping with a similar dilemma.

(I'm expecting a lot of angry posts to follow this and comments about how people can't give themselves proper doses -- and in response, I'm just going to say I hate not breathing properly and hearing about other people who can't breathe -- despite going to the doctor and having a real and very dangerous problem which could be diagnosed if the proper amount of time were spent on it).