[art chick]

I have been having a lot of problems this week and already had to call neuro twice. I had choking/swallowing issues and very weak legs and they increased my pred and then severe muscle twitching, diarrhea and they decreased the mestinon.

So, I am asking you all if you think this warrants yet another call. I woke up choking at 4 am on my own saliva. When I tried to drink some water, it started to go up my nose. Then I waited a few minutes and everything seemed to calm down and I was able to swallow normally again. I swallowed my meds fine this morning.

What does this mean and what should I do?

debra

[neutro]

Hi Debra,
Choking and swallowing difficulties are also symptoms of bulbar MG, so is liquid misrouting through the nose...
I had the same problems at the beginning of my MG, especially in the morning when I was trying to take my first Mestinon of the day. The prescription of Timespan solved those aspects as it is effective over about twelve hours.
I never had stomach nor bowel problems with Mestinon but I never take them on an empty stomach, either with some drink or light food.
I think you were on 90 mg Mestinon intakes, did they reduced them to 60 or even 30 mg?
Maurice.

[art chick]

thanks maurice. . .i do take mestinon sometimes on an empty stomach because it's every 6 hours and i have to set a timer for the midnight and 6 am dose. this happened at 4 am. i don't have timespan. i wonder if i can get the doc to give me that at some point. they just reduced my dose from 90mg to 60mg yesterday due to the issues listed above. i am doing better in that i am not twiching or having tummy issues and the legs are actually a bit stronger today. maybe that was the reason for the choking reaction? the reduction?

i am still undiagnosed so it's just one more thing going on. . .

[DesertFlower]

Mestinon in an empty stomache is bad for me - I drool, get diarhea and it makes me shaky if taken without food. Even a small amount of food helps and then I have to also drink a glass of water afterwards. Every time I skip the food or water with Mestinon I regret it. Those Mestinon side effects are no fun. I don't get any kind of choking reaction though, just drooling.

I hope this helps

[Juanitad]

If you're taking mestinon every 6 hours and you choked at 4 hours, this could definitely be the problem (based on my experience). I have to take it every 4 hours (and sometimes every 2 hours if my symptoms are real bad), so it would make sense to me if you have problems at the 4 hour mark.

I do use the Timespan at night so I don't have to wake up during the night to take meds. You probably need to check with your doctor on that.

Good luck.

[AnnieB3]

Debra, It almost sounds like you were overdosing on the Mestinon. It could be that things are worse too, since you were just in the hospital. It can be hard to tell until the meds wear off. The best thing is always what you did, call or go in.

Do you talk a lot? That sounds silly to ask, right? If you talk more, those bulbar muscles are going to flare. In the past, I have had to STOP talking in order to get better. My tongue has cramped up in back. It's not pleasant. Even your breathing can get worse from talking.

I think you should really look at what you do during the day. Think about how you can do things differently. Chew slower, sip cool water in between. Rest more, especially after doing any activity. Use a u-shaped pillow for your head or a neck brace to rest those muscles. They do work.

I'm sorry you don't have answers but I'm very glad you have a responsive neuro who understands that you treat the patient and not the disease (like Alice is fond of saying). I think that's an important distinction with doctors. So you should feel good about that. I hope you feel better soon.

Annie

[neutro]

I agree with Juanitad: for me, Mestinon intakes should not be spaced more than 4 hours.
Ask your neuro about taking the same daily quantity as you are taking now, but spaced every 4 hours…
Maurice.