• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Medication side effect, tongue weakness

Messages
75
Hey everyone,
Sorry, this is a bit of a weird one I guess.
Mestinon/pyridostigmine gives me a weak tongue, especially the sides become so sluggish that they almost feel paralyzed. This freaks me out a bit.
When it happens I cannot speak well, because the tongue does not work along especially the sides feel thick and sluggish. My words sound really odd then. My throat also feels numb, and my face and part of my cheeks and lips as well.

I have other side effects (dizziness, fatigue, worsened orthostatic hypotension, blurry vision, feeling of being distant, bradycardia) from this medication but none of them scared me. The last couple of times the weird tongue thing kicked in, and this was something I had never experienced before. So that did scare me. My tongue also seemed to feel thick, so I was worried about an allergic reaction.
The effect wears of after an hour or so, leaving me with the other side effects (the ones above) that last much longer.

I take 120mg in the morning. The dose was 60mg at first, and then doubled the second week.
Is the tongue side effect something to be worried about? I cannot talk to my doctor yet, have to wait two more days. But I feel uneasy about swallowing these tablets now.