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Old 07-06-2016, 08:44 AM #3
teachermom teachermom is offline
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teachermom teachermom is offline
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Join Date: Nov 2015
Posts: 55
8 yr Member
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Quote:
Originally Posted by en bloc View Post
Yes, I have tried Mestinon for autonomic issues...and yes, I did have some spasms as a result.

I have severe autonomic neuropathy and had tried every treatment available, except Mestinon to help control my neurally mediated hypotension. So my new autonomic specialist suggested I try Mestinon...just a small dose. Unfortunately, I could only take it for 3 days, because within 30 minutes of taking the medication (each dose), I would have an asthma attack. This is a rare but serious complication/side-effect of the Mestinon as it can cause bronchial spasms, leading to an attack. I also had minor spasms of muscles in my legs (fasciculations).

Also, spasms (in many forms) can be a part of autonomic dysfunction. So you may have more autonomic problems than you realize. I have livedo reticularis rash caused by spasms of the medium sized blood vessels and also vasospasms/artial spasms...both in my case are caused by the autonomic neuropathy. Even my swallowing difficulty is part of my neuropathy.

I will say there has been positive results for many people with Mestinon, so you shouldn't take my experience as a representation of all or even most patients. You will know relatively quick whether it will help you or not. If it increases your spasms, then stop it. But it also may help you.

Hope this helps.
Thanks for sharing your experience. I am fearful because I live half an hour from the nearest hospital. And when I went to this ER in May with severe chest pain, none of them have ever heard of SFN. They did an EKG and said I was fine. For 5 days I couldn't eat solid food. Finally I drove 1.5 hours to a real hospital.

Did you have asthma before taking mestinon?

I'm thinking I should at least wait for the tick fever testing to come back before trying it.
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