Mestinon

charlie1

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I've been prescribed 180 mg Mestinon SR once/day. I will begin it when I am feeling better (flu-like symptoms presently).
Does anyone have any experience with this drug?
 

charlie1

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Oh, I forgot to say the mestinon is for my recent diagnosis of POTS. I would like to try a beta blocker to help with the migraines and POTS symptoms but not sure if that would be safe with bp occasionally still getting down to 100/50 ish, despite being on florinef for 4 months. ( was in 80's/40's) Also was diagnosed to be bradycardic 2/3 of the time while wearing 48 hr. holter. This should almost be another thread now on beta blockers .... sorry.

Can anyone tell me about their experience with mestinon. Anyone try a beta blocker while being hypotensive and bradycardic.??
 

dsdmom

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I used it for a couple of years. Although I could not tolerate the pills and my neurologist finally prescribed the pediatric version which is a liquid so I started really really low and only built up to about 25mg 3/day. I liked it though - it always made me just feel better. I believe I've read it works along some anti-inflammatory pathway as well.

I do think that a side effect of mestinon can be bradycardia though but you may want to double check that.
I stopped taking it once the ivig I was doing kicked in. I wouldn't hesitate to go back to it though.
 

ahimsa

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Hi charlie1,

You might want to try reading some of the threads at dinet.org (if you haven't already). Here's one forum that I found when using google to look up the Mestinon (I think the generic name is Pyridostigmine)

http://forums.dinet.org/index.php?/forum/1-dysautonomia-discussion/

I don't know whether any patients on that forum have POTS along with ME/CFS symptoms such as PEM, vs. just having POTS, but I wanted to pass on the link in case it's helpful.
 

charlie1

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dsdmom, I checked -you were right about the bradycardia! I'm a little nervous to take it now seeing as I also have hypotension (as well as issues with my vagus nerve - vaso vagal syncope)

Use with caution in

  • Asthma.
  • People who have recently had a heart attack
  • People with a slow heart rate (bradycardia).
  • Low blood pressure (hypotension).
  • A condition called vagotonia (where overactivity of the vagus nerve causes symptoms such as slow heart rate, low blood pressure, constipation, sweating and painful muscle spasms).
  • Decreased kidney function.
  • Epilepsy.
  • Parkinson's disease.
heapsreal - that's a good thing, right?
 

charlie1

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ahimsa. Your suggested made me have another look at dinet. ahhh. I didn't scroll far enough but I now see a thread regarding my beta blocker with bradycardia question and also something on mestinon. Thanks! :)
 

ahimsa

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ahimsa. Your suggested made me have another look at dinet. ahhh. I didn't scroll far enough but I now see a thread regarding my beta blocker with bradycardia question and also something on mestinon. Thanks! :)
I'm glad the forum link was helpful. Treatment for all the different types of OI (NMH or POTS) can be complicated since it depends on the cause of the problem, how the patient reacts, and so on. What works great for one patient is a nightmare for another patient. But even though each patient is different I still think that the more information we can get, the better.

Good luck with your drug trial!
 

ramakentesh

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I found mestinon quite helpful - I have POTS - increased blood pressure on standing which goes DOWN on mestinon LOL
 
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I get cognitive problems. Most people get diarrhea, so I was glad not to get that, but the cognitive meant I couldn't take it in many situations. I couldn't get things done if they involved mental functions, but I could do more physically. I usually have the opposite. (Meaning without the drug.) The blurred vision is also annoying but I could put up with that.

If you don't have the time-release type, it wears off fast. It varies for individuals. I found about 2 hours after it takes effect, it's losing effect.
 

jimmy86

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Did anyone else try Mestinon?

I have found a case study:
Efficacy of a half dose of oral pyridostigmine in the treatment of chronic fatigue syndrome: three case reports

Chronic fatigue syndrome (CFS) is characterized by persistent mental and physical fatigue for at least 6 months. Its pathophysiology is unknown and there is no proven effective treatment. We describe three cases who fulfill the criteria of CFS, in whom a defect of neuromuscular transmission and dysautonomia are present and who respond to acetylcholine-esterase inhibition.

Case 1: 18-year-old female with a 3-year history of CFS. Response of compound-muscle-action potential, recorded using surface recording electrode, over left abductor pollicis brevis muscle, to repetitive nerve stimulation (RNS) at a rate of 10 Hz showed a 42% incremental response. Composite autonomic scoring system (CASS) showed mild cholinergic impairment (cardiovagal score: 1; sudomotor score: 2). Serological tests for Epstein–Barr virus (EBV) revealed positive antiviral capsid antigens (anti-VCA) immunoglobulins G (IgG). Oral pyridostigmine therapy (30 mg) resulted in marked improvement in symptoms.

Case 2: 28-year-old female with 10-year history of CFS. RNS, using identical protocol, showed a 60% incremental response over the same muscle. CASS showed mild cholinergic impairment (cardiovagal score: 1; sudomotor score: 2) and this patient was also positive for EBV. This patient responded dramatically to 10-mg pyridostigmine.

Case 3: 29-year-old female with a history of CFS for longer than 15 years. Repetitive stimulation, using identical paradigm to left abductor pollicis brevis muscle, showed a 42% incremental response. CASS showed mildly cholinergic impairment (cardiovagal score: 2; sudomotor score: 1). EBV antibody titers were positive. Patient responded to 30-mg pyridostigmine with an improvement in her fatigue.

These three cases generate the hypothesis that the fatigue in some patients with clinical CFS might be due to a combination of mild neuromuscular transmission defect combined with cholinergic dysautonomia. Support for this thesis derives from the improvement with cholinesterase inhibition.

http://www.sciencedirect.com/science/article/pii/S0928468003000075
 
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Why would Mestinon work in POTS &/ ME? is it to do with us also having autoantibodies to acetylcholine receptors similar to myasthenia gravis? For anyone it helped, did it also improve strength of voluntary muscles?
 

Sushi

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There is an interesting story on HR on Mestinon:
Interesting as an anecdote, yes. But I think it is sending an inaccurate message that mestinon is an overlooked drug that would help a significant proportion of dysautonomia patients. My autonomic specialist found that it helped less than 10%. You would have to fit a very specific profile to have a chance of benefiting from this drug.