Myasthenia Gravis Support Group

Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...

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leedy 11/17/2016

Hello All,

I recently began taking Mestinon. Initially, the 60mg three times daily, but now changed to the extended release (180mg twice daily) as I was having too many ups and downs with it wearing off (losing my voice, leg and arm weakness). At times,I experienced the sensation of having pop rock candy on my tongue and throat soon after taking my Mestinon dose (every 4 hours x 3 to 4 times daily), but that went away, it seemed, when I began taking the XR. Last night, about an hour after taking my dose, this sensation returned; this time it affected my speech - I struggled with clear pronunciation. I felt a constant twitching of my eyelid (in my weak eye), though my husband could not notice it. I also, though only for a bit, felt I needed more air, but this subsided. I find when I feel like this, 'slouching' and expanding my arms seems to make me feel better (breathing), which makes no sense to me. Is this a Mestinon thing??

Muscledout 11/19/2016

Hi leedy, oh my gosh, I described the same sensation to my husband and was sure he thought I lost it

leedy 11/19/2016

Do you know if it's the Mestinon or MG?

Rhanson 11/19/2016

Quite strange symptom, but it may be a little too much mestinon at a a time. You could test this by cutting one of your time release pills in half and trying that much. I didnt have much luck with the time release as it seemed I had better control by taking the regular (and much cheaper) doses that I tried varying amounts. Sometimes I tried cutting my 60mg regular mestinon pills in half and took 30mg every 2 hours instead of 6o every 4 hours.
Good Luck

leedy 11/21/2016

Thank you Muscledout and Rhanson for your replies.

Poet 11/26/2016

leedy: Last night, about an hour after taking my dose, this sensation returned; this time it affected my speech - I struggled with clear pronunciation. I felt a constant twitching of my eyelid (in my weak eye)

Response: I had a similar sensation on my tongue. It twitched, and it briefly affected my speech. I too had just had a similar increase with Mestinon. It happens when I take my follow up dose after the extended release.

Leedy: I also, though only for a bit, felt I needed more air, but this subsided. I find when I feel like this, 'slouching' and expanding my arms seems to make me feel better (breathing), which makes no sense to me. Is this a Mestinon thing??

Me: I know I have problems lying on my left side while sleeping or just lounging on the couch. I literally can feel the muscles twitching right below the left shoulder blade. Then, I have to pop up and stop from lying on my left side. (I can lay on my left side if I lie directly on my arms, essentially, propping up my body. Unfortunately, that only makes my arms numb)

This has been going on for more than ten years, and as I read your post, I'm thinking it could be a side effect of the medicine. I went to see if difficulty breathing is a side effect of the medicine, and it is.

Mostly, I only used to have this problem lying down on my left side. Now, at times, it can happen when a bra "suddenly becomes too tight", after 30 minutes or so of wearing it. It got to the point that all I could wear are old loose bras. I was placed on inhalers, which helps, but I'm wondering whether I'm taking a drug to stop the side effect of another one.

leedy 11/27/2016

Thank you Poet.

leedy 11/27/2016

This 'phlegm' or thick 'something' in my throat and esophageal area while eating and sometimes drinking; I feel I need to clear my throat and cough...do you all feel is the Mestinon too? This is new. I am curious because my MG symptoms have typically mostly involved generalized muscle weakness but while I'm experiencing this (thick something), I haven't had that 'bad' a day with my leg and arm muscles.

Poet 12/07/2016

I have sinus problems, but I don't have thick mucus. Unless, I'm sick with a cold or something.

leedy 12/07/2016

Thank you for the input Poet.

Poet 02/07/2017

I found a remedy for this. I eat a banana. This sensation occurs (for me), when I have a little too much Mestinone in my system. See, I take a 24 hour/180 mg dosage at night, and 8 hours later, I take 60 mg.

The transition is a little funky within 30-45 minutes of taking the morning dosage. I found out that when I eat a banana I don't get that sensation. I don't take my morning yogurt until an hour after meds.

So, it's meds, 10 minutes or so later banana, and 20 minutes later yogurt for breakfast.

tmj 02/07/2017

When first diagnosed (omg) I started taking 120 mg 3x daily. I now see that was a dose on the bigger side. I experienced some facial twitching, finger and toe cramping and increased urination. But the oddest thing was about two hours after a dose I would sometimes be in bright sunlight and experience what can only describe as pixelated sight. About 80 percent of my field of vision would appear like a weird 'photoshop' effect , colors were almost enhanced and look pixelated for lack of a better description. Straight lines on the borders of objects would appear almost like hash marks. It would last for maybe a half an hour or if I were to get out of direct sunlight.
It had never happened to me before taking pyridostigmine , and has not happened once since I stopped. I described it to doctors , but they made little comment and perhaps thought I was crazy, lol. Coincidence?

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