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Mestinon


masumeh

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My POTS doc recently tried me on Mestinon (pyridostigmine), 60mg thrice daily. It is suppose to treat myasthenia gravis, or muscle deconditioning. Doc said it's a new drug, and we can just "try" it. It didn't work because it increased urination and dehydrated me within a day. It also antagonized my nausea. But it did tighten my joints up! That was a marked difference within 24 hours. I could feel the laxity in my knees return when I discontinued.

Just wondering if anyone else has tried this medication.

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My POTS doc recently tried me on Mestinon (pyridostigmine), 60mg thrice daily. It is suppose to treat myasthenia gravis, or muscle deconditioning. Doc said it's a new drug, and we can just "try" it. It didn't work because it increased urination and dehydrated me within a day. It also antagonized my nausea. But it did tighten my joints up! That was a marked difference within 24 hours. I could feel the laxity in my knees return when I discontinued.

Just wondering if anyone else has tried this medication.

I'm on this medication. I have been for several months now. There has been studies that show that it is a helpful drug for POTS patients because of its action on acetecholine (sp?) receptors. It did not help my orthostatic issues, but, I did notice that I have less muscle weakness and over all shakiness. These have been huge issues for me, so any help along the way is worthwhile. Its also helped with digestion....its actually speeded it up a bit, which again, is a very, very good thing for me.

I had a difficult time with this drug for the first few weeks I took it. Strangely enough, it seemed to really do a number on my ability to maintain blood sugar levels. As it would start to decrease in my system, I'd have a heck of a crash...now, it could be that it crashed my blood pressure controls and my blood sugar levels followed, but it did take awhile for me to work out a way of taking it without having this be so much of a problem.

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I take Mestinon but at a much lower dose - right now I'm at 20mg 2/day. I have had to even build up to this amount - my body reacts strongly to things now so I am building up slowly. If you think it was helping somewhat maybe you can talk to your doctor about a different dosing schedule. Maybe less, more often? I also take the liquid form because it's easier to get smaller doses that way than in the pill form.

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Hi,

I was under the impression this is not a new drug... Maybe for dysautonomia...? But, there has been many posts in the past of people trying it. I personally have not tried it, and am not sure if it would help me or not.

I agree that maybe taking it differently would maybe help with the side effects? I wonder if working with a dr. more experienced with this med would be helpful?

I wish it would have helped you more!

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Thanks all for your helpful comments. I need to reconnect with my doctor about this med. Maybe a lower dose, tapering up, would help.

A lower dose and tapering up have been very useful to me. I'm up to 60mgs 3 times a day, but every time I taper up, I get the intense stomach cramps and such. But for me, the benefit of the medication far outweighs the bad effects.

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Mestinon is not a new drug. It has been used to treat MG for quite some time. Only in the past few years (based upon Mayo Clinic research) has it been shown to be helpful in treating POTS.

Is dehydration a common side effect or could it just be coincidental?

I have been taking Mestinon since 2004. I switched to Mestinon TS taken at bedtime to help deal with the GI pass through rapidly effect along with cramps. That does seem to help and gives me better more even coverage.

Lois

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My EP wants to try mestinon, but can someone tell me specifically how it affects them, not just "helps with my symptoms".

It has a risk of Cholinergic crisis, (can result in death), which scares me. How great is this medication, and exactly how does it improve symptoms?

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ellen,

you will find the answer to your question here.

http://www.dartmouth.edu/%7Erpsmith/Cholin...ansmission.html

have fun! :) Its a tough read.

"The processes involving neurotransmitter release, diffusion and receptor activation are referred to collectively as transmission. There are many types of transmission, and they are named for the specific neurotransmitter involved. Thus, cholinergic transmission involves the release of the neurotransmitter, acetylcholine, and its activation of the postsynaptic receptor. Things that bind to and activate receptors are called agonists. Thus, acetylcholine is the endogenous agonist for all cholinergic receptors."

poorly translated

mestinon increases acetylcholine the neurotransmitter in autonomic ganglia (the ganglia is A group of nerve cells forming a nerve center, especially one located outside the brain or spinal cord)

postganglionic fibers of the sympathetic division generally, but not always, secrete norepinephrine

bottom line, me thinks is, affects skeletal muscles, and autonomic, which go to smooth muscles, glands and the heart. and norepinephrine

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Guest tearose

I'm unclear, how did you get deconditioned muscles? Were you inactive for a while?

I don't understand why one would not try gentle, regular exercise and build up muscle strength. Am I missing something?

tearose

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I haven't been able to see my doctor about the med yet, but I'll update again when I do.

Tearose, I don't know why either. It came with POTS for me, and it seems to fluctuate with my other symptoms. I sometimes just feel so weak, other times I'm able to use those muscles fine. Is it blood flow? Is it neuro functioning? I don't know. I'm not usually able to tolerate exercise tachy-wise. I'm going to start physical therapy for my knees soon, but I'm not sure that I'll be able to tolerate it. Usually I can go walking once or twice a week without inducing a major flare-up (which puts me out for at least two weeks). Before POTS, I was an athlete, very active runner, soccer player, rollerblading, biking...coaching and playing on travel teams, school teams, etc. But as soon as I got POTS, I could barely walk. Whenever I rebuild myself a little, I slip behind at the first flare up. My muscles are mush.

The doctor told me that Mestinon prevents my body from breaking down acetilycholine (sp?), which my muscles need in order to function properly. He said, "You might find that it helps your other symptoms as well, dizziness, etc."

For me, it didn't immediately affect my dizziness, but it did immediately help tighten my joints. Side effect were crazy...there's a warning about "increased urination" but for me it was like very clearly increased to the degree of dehydrating me, and that didn't ware off until about 48 hours after stopping the pill. It also made me feel like I was about to have diarhea, but I wasn't....just had a gurgley stomach for like the entire day. I hope that I can re-start the pill in a way that will avoid these side-effects because they are totally unacceptable, I mean I cannot tolerate the pill with these problems attached.

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Guest tearose

thanks pat57, but how do you measure that? Sorry but that isn't clear yet to me.

If you are exercising two to three times a week in your allowable "range" how can you be deconditioned?

Muscles are working, heart is working, what is measurable?

Anyway, my POTS problem is my barroreceptors in my legs and abdomen are not functioning well. As long as I am compressed I do better. usually. It has been my experience, in cardiac rehab for example, after months of exercise, to suddenly trigger a POTS event during cooldown or shortly after. I was very well in shape and Still crashed. In fact once I was given my ekg strip and dismissed because they felt home and slower would be better than pushing at rehab.

So, my question, how do they measure deconditioning?

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I assume they would measure strength and endurance. You could be working hard and lifting a pound which would not be normal.

The site was not addressing that issue tho. It was about how neurotransmitters work. The skeletal muscle must have acetylcholine in order to receive

the message , resulting ultimately in a biological response such as muscle contraction.

As you say, " the Muscles are working, heart is working", we are talking about degrees of activity.

Ellen mentioned Cholinergic crisis which is death from Flaccid Paralysis, meaning zero muscle tone.

here is something I found when I searched "How do they measure deconditioning?" http://lifecenter.ric.org:16080/content/2502/

I don't think I understand your angle on this, because I did see that you say you are fit. And so again I make an assumption

that your experience has a very different cause.

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Guest tearose

thanks pat57, I got it finally!

I was just trying to see if the fact that I wear less compression during exercise may be making things worse for my muscles. I sometimes have trouble with understanding the medacaleeze and so you made things clear.

Glad to hear some are finding a treatment that helps them live better!

best regards,

tearose

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Very interesting article Pat57.

Where did you find it?

I haven't read all of it yet, but scanned a good portion. My eyes are having trouble focusing this morning, and my vision is blurred, so I will read more later.

I hope the mestinon works for you masumeh, maybe starting with smaller doses as people suggested would work out better.

Speaking of acetylcholine, I remember this test. It was so disturbing. I was given this test at University Hospital in Cleveland. I thought my heart was flipping out, but the EKG showed no problems with my heart. Something was doing flips inside me, and I never got an answer to that to this day.

Another very starange reaction I had was to an anti-nausea drug. I don't have the name of it, because I never got the rocords from that ER visit years ago--------so If don't know if that drug "scopalamine" was in the anti-nausea medication used that night. I felt like I was losing my mind on this, and when I closed my eye's, whatever was on the TV was in my head. I wanted to climb out of my skin--- :blink:

Maxine :0)

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I found it while trying to figure out what opisthotonus looked like. Dr. Grubb says that is the type movement in seizure NCS people have, and I've had them.

There is a pic on the site.

This is a good link too.-

http://users.rcn.com/jkimball.ma.ultranet/...parasympathetic

not that "I get it", but it helps. :blink:

I looked up scopalamine, it is an muscarinic antagonist and anticholinergic. The muscarinic antagonist slows down the parasympathic NS The anticholinergic slows down the sympathic NS . Here is the mention "The cholinergic receptors innervated by the postganglionic fibers of the parasympathetic division of the autonomic nervous system can also be activated by exogenously added muscarine, an agonist found in small amounts in the poisonous mushroom, Amanita muscaria (below). These constitute a second subset of cholinergic receptors which are called muscarinic, cholinergic receptors."

at

http://www.dartmouth.edu/%7Erpsmith/Cholin...ansmission.html

I cannot promise to have my facts straight, however the info is on those links. :blink:

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