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ReginaH

Mestinon Trial Questions and Thoughts

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I finally started trialing mestinon on Wednesday. This will be the first medication I've ever tried for POTS. So far, I think it does help keep my heart rate more steady upon standing and it also seems to make my eyesight less blurry. I'm tiny and sensitive so I'm only taking 15mg 3x a day.

 

For side effects, it's hard to tell what's POTS and what's mestinon. I still feel really fatigued and sometimes a little "high". I'm slower in general and time tends to feel slower.
I guess I can deal with that if it helps me with orthostatic issues but...

Tonight I tried to eat dinner and my throat both felt numb and irritated at the same time. Swallowing, especially once food got to the base of my throat, began hurting. It got so inflamed that I had to stop eating. Is mestinon causing this? Has anyone had a similar throat issue? I obviously can't continue the medication if this keeps happening because I need to eat...
I couldn't find anywhere on DINET, POTS groups, or the internet that this is a thing.

 

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Dear @ReginaH - I took Mestinon for a while and do not remember having any throat pain. I looked it up and this is not a side effect mentioned in the common literature about mestinon.  Could you be experiencing a sore throat from allergies or cold? I would definitely ask your doc about this, especially if you are contemplating stopping the mestinon because pf this. 

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It doesn’t feel like any sore throat I’ve ever had before. It’s just at the base of my throat when food begins to enter my esophagus. It’s like this numbness that still signals to my brain that I’m in pain when I swallow and because it was so vague I just kept trying to eat until it was obvious that it was too painful. Really hard to explain...

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Okay, so the sore throat probably wasn't caused by the Mestinon. I have no idea what that was!

 

Mestinon seems to help me in quite a few ways, albeit subtly but it also seems to potentially cause issues with my breathing. Is this common? I wonder if it's worth continuing if it increases a feeling of pressure in my lungs, makes me cough, etc?

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On 4/27/2020 at 4:49 PM, ReginaH said:

Okay, so the sore throat probably wasn't caused by the Mestinon. I have no idea what that was!

 

Mestinon seems to help me in quite a few ways, albeit subtly but it also seems to potentially cause issues with my breathing. Is this common? I wonder if it's worth continuing if it increases a feeling of pressure in my lungs, makes me cough, etc?

Hi sorry you had those issues with Mestinon.  I had the same issue with Mestinon and my doctor told me to stop it.  I felt pressure and like I couldn’t breathe well.  I was on a small dose too.  It helped me with brain fog and blood pressure though.  I’m continuing to look for something that works.  Hope you find something else!  😃

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