Mestinon Dosage

[Sarah4444]

Hi everyone,

I haven't been on for a while. I've been doing a bit better and am able to have a bit of a life again, plus am involved in some research and support here in Canada re the overlap of POTS with MCAS and EDS/other HDCTs - keeping busy

Anyhow, I saw my POTS doc recently and he wants me to try Mestinon again. Last time I was only able to manage a few days and then got an unbearable and rapidly worsening headache which resolved when I stopped taking it. I am prescribed 60 mg twice a day, but will start with just a tiny bit and see what happens.

If someone out there is finding it helps, can you tell me what dose works for you? Did you deal with any side effects?

Thanks in advance!

[Psalm 23]

Hi Sarah,

I am presently taking mestinon 60mg three times a day. I have been on it almost two years. I started at 30mg three times a day for about 2 weeks then it was increased to what I am presently taking. I was very fortunate in that I have suffered no side effects from it. I think a lot of others on this forum taking mestinon are on a lower dose than I am. I have found it to be very helpful. I hope you have better tolerance for it this time and it helps you.

I am so happy for you that a bit of your life has been gained back.

Janet

[Guest Alex]

Sarah, hi from a fellow Canadian,

I've been on mestinon, (actually on its sibling neostigmin) since Feb of last year and now that it's been my only POTS med since April of this year (I used to take propranolol and florinef as well but managed to wean myself off) I can tell that it helps keep my HR under control. When I started taking it I was on 45 mg in the AM, 30 mg 4 hours later and 15 mg 4 hours after that. Now I'm taking 30 mg in the AM and 30 mg in the PM.

Side effects - I had a bunch of them as soon as I started taking it (some may have been exacerbated by the other meds I was on as they went away shortly after I discontinued those...coincidence perhaps...not sure). In no particular order: blurred vision, a sort of a "stoned" feeling, muscles twitching, teary eyes, sweating, increased production of saliva (I had days when I was drooling Pavlov's dog style), stomach and intestinal cramps (they were pretty bad in the very beginning, but I learned that taking my pills with a decent amount of food diminishes this). Also, at times my breathing is a bit funny (not exactly shortness of breath but my lungs feel somewhat congested) and my esophagus cramps (this is probably one of the toughest side effects I've dealt with).

If you search the forum for mestinon, you should find quite a few posts - several members that have taken this or are still taking it with various degrees of success.

Alex

[Psalm 23]

One other thing I did want to make mention of is that I never take mestinon on an empty stomach.

[Sarah4444]

Thanks for the input Janet and Alex. I tried just 15 mg yesterday and it wrought havoc on my GI system. Will try again today...no headache yet anyway.

I have had such a rough time with 15 mg I can't imagine tolerating the full dose at this point.

Will take it with a full meal this time!

[Guest Alex]

Sarah, for me food makes all the difference in my GI side effects .

Hopefully things will improve for you.

Alex

[Psalm 23]

Sarah, I'm so sorry the 15mg caused you such GI distress. I'm sure that was very discouraging for you. For some it sounds like it takes a bit longer to get past the side effects. As Alex shared consuming a significant amount of food with it for better tolerance is really important. I hope it gets easier for you.

Janet