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I know there have been several threads already discussing mestinon, but I was wondering if we could have an update on people's experiences with the medications.

The Mayo clinic is currently trialing a RCT of mestinon for POTS, and I know Dr. Grubb at Toledo published a positive retrospective analysis of pyridostigmine (mestinon) in POTS. Vanderbilt also published evidence supporting it.

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Guest Alex

Here's my 2 cents

I was on a combo of: propranolol, florinef, mestinon and klonopin a year ago (I was also salt and water loading at the time). The mestinon was the last to be added to the mix and at that point I can tell you that it helped reduce my standing heart rate, but it seemed to be quite hit and miss. It's pretty hard for me to tell at this point what my baseline was before starting the mestinon as prior to that I had 3 months of continuous changes in my med regimen (most meds I tried made me worse than I was when I was dx with POTS).

At the beginning of this year I decided to come off propranolol and florinef (the klonopin was already out of the picture), so I am only taking mestinon currently (30 mg AM and 30 mg PM), and I'm back to a normal water and salt intake.

Is my heart rate under control? Yes and no. In other words, for me, this is still a hit and miss treatment. I have days when my 30 mg in the AM lower my resting heart rate to 50 bpm, while the next day the same 30 mg don't really do anything for my HR (it can stay in the low 100 range the whole day). The difference is that now a resting HR of 100 or so doesn't "impress" me anymore, but it still limits the kinds of activities I can engage in.

My BP is now back to my normal pre POTS (100/70) so I doubt the mestinon is touching that(the propranolol and florinef were definitely responsible for the swings in BP I dealt with).

Jangle I can't answer your question on dizziness/lightheadedness :( I did have some lighteheadedness /dizziness but only before I was dx with POTS and most likely due to the combo of meds I was placed on back then, namely ativan and bisoprolol.

The other thing I noticed - if I have a light breakfast with my morning mestinon, most times my HR drops lower and my side effects are 'stronger' (blurred vision, GI upset, esophageal cramps, wooziness etc), if I eat more with my pills, chances are the side effects are less noticeable and the HR doesn't drop that low.

Hope this makes sense.

Alex

Oh, and I'd be interested to see the results of the trial at Mayo when/if they decide to publish them.

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Yeah mestinon gave me a 20-30% improvement in dizziness with a calming general feeling of the sympathetic system.

It can however combine with other meds like midodrine and phenylephrine.

I had no adverse effects of any type.

But I found after about 8-14 months its effects completely wore off and it did very little. Im sure after a rest it would work ok again.

But Id say that vasoconstrictors are probably more helpful for me because they also give me energy - at least at the moment.

I find it utterly bizarre that despite there being numerous acetylcholinesterase inhibitors available they are still mucking around trialling the one that someone found helped back in 2005-06...

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Hi Jangle. I have been on Mestinon for about 18 months. It has helped control my tachycardia ( in combination with clonidine ), palpitations, presyncope and fatigue. The first six months or so I started taking it I realized significant symptom improvement but since then I'm not sure if the effectiveness is less or my condition has worsened. I have experienced a number of set backs this past year in terms of acute illnesses and an increase in physical and mental demands. In regards to side effects I have not experienced any so even if I am not realizing the same degree of improvement I had in the begining I will continue taking mestinon as I am desperate for any degree of symptom improvement I can get. Actually in addition to the earlier mentioned improvements, I believe it has also helped me with thermoregulation and upper GI motility.

Janet

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I've been on Mestinon since last July. It took a good 6 weeks to start working, but it has made a world of difference for me. I spent 6 months straight last year with dizziness 24/7 with no reprieve even laying down. I have a few dizzy moments from time to time, but I actually have been feeling pretty normal in that regard since August/September. (Knock on wood! :) ) The Mestinon controls my heart rate as well. I also think I had some gastropareisis and it helped me actually have an appetite and to feel like food moved through me again. I lucked out and didn't have any side effects aside from some random muscle spasms (which is to be expected with excess acetylcholine hanging out in your body). As a side note, I still take Midodrine as well.

Good luck!!

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