Hello guys!
Has anyone here ever tried pyridostigmine for jugular dysautonomia or any other ES related issues? I have read, that it is used, among others, to modulate vagal tone…
Here is what my Google search turned up regarding Pyridostigmine:
In this article it’s only written about myasthenia gravis as indication… But I’ve read from someone on FB (can’t remember, who and where it was), that it helps a lot with jugular disautonomia, and is used (most probably off label) to stimulate vagus nerve. But I found no research papers on it…
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That’s partially why I posted the link. As you know, there are drugs that can be used “off label” but it’s best to be sure the off label use is truly safe before starting to use them. If the FB person provided some scientific or medical information regarding the safe use of Pyirostigmine for vagal stimulation, it might be worth considering.
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Hi Irina777,
I’ve not seen any research about pyridostigmine being used for jugular dysautonomia or ES but it’s exciting to think there might be some.
I take pyridostigmine three times a day. It was prescribed by one of my neurologists as an off-label treatment for dysautonomia/orthostatic intolerance/POTS. I also have abnormal muscle fatigue so he was hopeful it might help both. It does make a difference but it’s not a magic bullet.
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@KimberlyNYC Oh, big thanks for you answer! 
Does it help you somehow with general fatigue and sleep?
Meanwile, I have found that post on FB where I came across pyridostigmine. That was in the nutcracker syndrome support group. And the talk was about autonomic dysfunction and chronic fatigue syndrom, not jugular dysautonomia, as I have initially written. I will copy this post here:
Because NCS causes autonomic dysfunction (the mechanisms of which are not well understood but does involve an element of vagus nerve functioning) I thought this article about Mestinon (pyridostigmine) might be of interest to others as a med that may be an interim measure to mitigate some of the autonomic symptoms caused by NCS.
Don’t be put off by the fact that the article is more about people with Chronic Fatigue Syndrome as Mestinon is a commonly prescribed med by Neurologists for issues of autonomic dysfunction and GI’s too when GI dysmotility isn’t responding to other meds.
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In the article above there are links to 2 very small studies, which showed, that mestinon may improve fatigue, anxiety and sleep.
Today I received an answer from a nutcracker syndrome support group member, she wrote that it definitely helps her lessen fatigue…:
“it DEFINITELY helps lessen fatigue. I have EDS/ POTS as well so it helps with my heart rate and leg pain. I was prescribed it 8 yrs ago for POTS. It helps wake me up to function and honestly I feel like I can take a deep breath WAY better when I use it. It caused me some nausea in the mornings but that subsided eventually. I always say this med got me through college. ((It did NOT help me sleep))”
But, it looks like this med is not well studied at all for dealing with issues other than myasthenia gravis. Would not encourage anyone to take it without extensive consult with a doctor!
And I would be very grateful, if someone else also shares his experience on this med.
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Thank you for following through w/ my request/suggestion for evidence/research about other uses for Pyridostigmine, @Irina777. Very appreciated & the information will be helpful for our members who are interested in trying it.
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It’s fairly commonly prescribed for POTS, which might be considered a form of dysautonomia.
I took it for my POTS but it made me feel worse so I stopped after 3 weeks. (Fludrocortisone and midodrine both helped my POTS)
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I can’t really say if it helps me with general fatigue and sleep. I wish I had a better answer for you. It seems to help muscle fatigue. As for sleep: mine is typically disrupted by pain. Mestinon has not helped with that, at least not in an appreciable way. My pain levels are quite high though, so I’m probably not a great person to ask.
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@KimberlyNYC - Is your pain all ES related or do you have other things going on? I’m sorry to say I can’t remember. Regardless, I’m sorry you’re dealing w/ pain that keeps you awake or wakes you up from sleep. I know how annoying & frustrating that is.
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I see, thank you for your answer!
Really sorry, that you have all that pain, that doesn’t let you sleep… I have also been dealing with chronic pain for many years, I know, how frustrating it can be… Hopefully you will find some remedy soon, that would really help 
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