Dysautonomia (Autonomic Dysfunction) Community
Mestinon (Pyridostigmin)
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This patient support community is for discussions relating to Dysautonomia (Autonomic Dysfunction) including: Postural orthostatic tachycardia syndrome (POTS), neurocardiogenic syncope, mitral valve prolapse dysautonomia, pure autonomic failure, autonomic instability and others.

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Mestinon (Pyridostigmin)

Is anyone taking Mestinon (Pyridostigmin) for Dysautonomia?  It's an off-label treatment normally used for Myasthenia Gravis, but I was just wondering if anyone has had any luck with it.  I'd appreciate any comments.
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Avatar_f_tn
I answered your questin, but it was deleted.  I guess I am not supposed to link you to another forum?
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Avatar_f_tn
I have been on 60mg Mestinon bid for the past 3 years.  It has made so much difference in my life.  The blood doesn't pool in my ankles so much, so I can stand longer and don't have to wear the compression I wore for 5 years.  It was a little rough for my stomach to get used to it, but it has been worth it!!
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492869_tn?1285022533
I didn't see your response, so I cannot tell you why it would have been removed.  I know the moderators do the best they are able to though.  If you are concerned, you can contact Med Help through the "contact us" link at the bottom of your page.
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492869_tn?1285022533
Thank you for your response.  I'm happy that Mestinon is working so well for you!  How long was it before you noticed an improvement?  Also too, are you taking any other medication with it?
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Avatar_f_tn
I really don't remember how long it took before I start to see some results, but it wasn't too long.  I started out with just one pill a day, and it did bother my stomach for awhile.  But I soon got used to it and then added an additional pill.  

I do take other meds--Nadolol and Cymbalta--for both my POTS/Autonomic Dysfunction/whatever name I feel like calling it that day, as well as for Small Fiber Neuropathy.  I have been on lots of different meds over the years, but this is what is currently working for me.

I hope the Mestinon will work as well for you.  

God's many blessings to you!!
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768467_tn?1260232958
Intermittent Pots? I have improved from severe dys to intermittent. Does anyone have this?
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881165_tn?1265988188
I've been on Mestinon for 2.5 years.  It was great but I keep having to up the dose (I have almost no autonomic nerves left, so Mestinon can only do so much).  I noticed a difference a couple hours after my first dose.  It's worth a try!
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Avatar_n_tn
hi... i have been suffering from Myathenia Gravis for over a year now. I have been on T.Mestinon  since then.But over last two months i have developed some serious side effects like
• Severe Dandruff and hair fall
• 15 kg weight gain in 10 months
• Acne
• And Red color stretch marks all over the thighs spreading to leg, breast, and other parts of the body

did u have any such problems what did u do to overcome it.
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Avatar_m_tn
My Dad was diagnosed with MG a week ago.  He was bed ridden and had trouble swallowing and could not keep his eyes focused.  He has been on mestinon for five days.  On day four he could keep his eyes focused but now on day five he has a fever and sleeps non stop.  How long should I wait for mestinon to work?  He is on five daily doses of 60mg.
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Avatar_f_tn
I have just been put on Mestinon for Postural Orthostatic Tachycardia Syndrome (HyperAdrenergic type) to help with muscle weakness and hopefully help the pathway to the nerves in my bloodvessels in my legs, so they can constrict when I stand up, instead of letting blood pool in my legs.  Just diagnosed two weeks ago.

Only thing that helps is compression hose from ankles to waist.  Anyone had luck with mestinon?  I am starting at a very low dose as I am really sensitive to meds.  Tried Aldomet(Methydopa), could not tolerate...too tired and brain dead feeling.
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