[Stellatum]

Hi, everyone. I think I have a new symptom. Last night after I went to bed I had trouble swallowing. But I'm wondering whether I imagined it, or just psychologically messed myself up or it was a fluke or something. So could those of you who have experienced this symptom tell me if it's like this? It just took me three or four tries to swallow at all, as if my body wasn't responding to the commands my mind was sending it. I felt like the muscles that weren't working were the ones between the back of my throat and my nose--not the ones further down towards my neck. Does that make sense? Do we even have muscles there? Nothing like a weird disease to make you aware of your body...

I've been in the habit of not taking Mestinon after 5:00 p.m. or so, because it didn't really matter if I got weak at night--I was just going to bed anyhow. If this happens to me again, I'll take another pill before I go to bed, and I know there's a timespan version I could also take if this becomes bothersome in the middle of the night.

Also, can anyone tell me if I'm right to think that as long as I'm not choking, this isn't any sort of emergency symptom--that it can wait until I see the doctor in a week or so? Anything else I need to know? I appreciate all of you helpful and compassionate people.

Thanks. I hope you guys are having a good day.

Abby

[jana]

Abby, one thing I was told was to BE sure to take a pill BEFORE bed so that I could swallow saliva in my sleep. Apparently, this is something that we just "do". I just take a 60 mg -- haven't needed a timespan so far -- knock wood.

Now, as for the trouble swallowing -- I can only tell you about food and drink. If I am having trouble swallowing, the food feels like it gets stuck in the upper part of my throat -- and this gives me a panicky feeling -- like I'm not going to be able to catch my breath. I start coughing and spitting and gasping --- it is HORRIBLE. And it LOOKS horrible to whoever is around to see it. They think I am DYING!!

If I am having trouble swallowing water or another liquid, it just comes out my nose -- like a runny nose. It is the MOST peculiar thing I have ever seen. I could swallow green Kool-aid and green liquid would drip out of my nose. EEEK!!!

Even with choking, I wouldn't rush to the doc -- UNLESS I aspirated or passed out or something like that. I would only rush with breathing difficulties. With choking -- just don't eat or drink until your muscles have had a chance to rest or until the Mestinon has kicked in.

Maurice had a good point in another thread -- if you want to eat in a few minutes, don't talk -- the same muscles are used. If you fatigue the muscles by talking, you are gonna have trouble eating.

[art chick]

hi abby,

i totally know what you mean. when i was in the hospital, i described the same exact symptom to the occupational therapist who came to assess my swallowing and choking issues. she said that it is called "pumping" when it takes a few tries to get your body to swallow your saliva.

as for choking, i get food caught in the back of my throat on what feels like a shelf and then i cough hard and it comes right back up and i can swallow again. it only happens with solid food for me.

i am going to the neuro tomorrow so i don't know what is urgent or not but i hope something i said might be helpful. it sounds like you need your meds. . .

debra

[dog lover]

Abby,
My swallowing issues are similar to what you describe. I feel like it is stuck and won't go down. It only happens now and then but is usually in the evening when I am tired. I have never had anything come back up, it is more that it is stuck there and won't go down or come up. I also don't take Mestinon after 4:00 because when I am home in the evenings I don't feel like I need it. I agree with Jana that I don't think this requires at trip to the DR or ER. I would just keep track of how often it happens and the time of day and let your Dr know next time you see him. Mine always passes within a minute or so. It can be scary but I really believe it is due to the muscles being tired. I also sometimes get a weakness in my rib cage in the evenings and have finally figured out that I think it has to be weakness in my diaphram.
Kendra

[neutro]

Abby and Kendra, I think it is not advisable to avoid taking Mestinon at the end of the day under the assumption that you do not need it beeing home (doing nothing?). But you do some walking, some household tasks which use some muscular power, you talk, you chew, you swallow, you take a shower, you brush your teeths…
Take an extra Mestinon, about 4 hours after the last one and see what happens…
Maurice.

[Jenn]

Hi Abby -

Difficulty swallowing is my main weakness, and it's like the others have described - I can feel food stuck in my throat when I'm trying to eat, and it won't go down until I give the muscles a rest. As for whether it's a problem or not, um, yes, it's a problem. You can probably wait till your appointment in the next week, but I wouldn't wait any longer than that. And if it's better by the time you see him, you still need to bring it up and talk to him about it.

As for your comment that it doesn't matter if you take your Mestinon at night b/c you're just going to bed, be VERY careful with this thinking. For most people, this is probably true. However, that was exactly my thinking last year, until I woke up one morning and couldn't swallow anything, including spit or liquids, and I couldn't take my morning dose of Mestinon. As a result, all of my muscles got weaker (hands, arms, legs, vocal chords, breathing) and I ended up in the hospital for 8 days. It wasn't something that happened suddenly - I had been having problems swallowing my pills in the morning when I first woke up for several weeks. But, I was definitely wrong in thinking that everything would be stronger in the morning after getting some sleep. I agree with Maurice, try taking an extra Mestinon at night and see how you do.

Jennifer

[dog lover]

Maurice,
You are probably right. The reason I don't take it after 4:00 is because I thought it was causing me to have insomnia. I may give it a try and see what happens because my jaws ache every single night about the time my 4:00 dose wears off. Thanks!!!
Kendra

[Stellatum]

Thanks, everyone. I'm being cautious here--I had more swallowing trouble last night in spite of the extra Mestinon, and I felt a little short of breath for the first time. So I have canceled everything for a few days so I can see what's going to happen, just in case this is the start of something serious. It seems like as soon as I learn to manage one thing, something new comes along...and I've learned enough from reading this forum to take these symptoms seriously! That's a real advantage.

Abby

[rumpled]

See if you can set up the tests for swallowing. I am sero-negative and so I don't take meds (mestinon made me drool more, so aggravated the swallowing issue that I have) but I have the swallowing issue. The more tired I get, I cannot swallow and even choke on my own saliva just sitting around. I went to a digestive place and got tested soup to nuts and had my esophagus stretched - it has helped for a while, but I still choke a bit.

The swallowing muscles are voluntary, once you get it past a certain point, the body takes over.

[AnnieB3]

Abby, Ditto on all the advice.

I would add that "maintenance is key to MG." I think maintenance is the key to life in general. I have found that a consistent dose amount and schedule is the best way, plus rest, to handle my MG. I have 90 mg. every 3 hours, round the clock. But I can't do the other drugs.

Talking a bunch is a huge trigger for swallowing/bulbar muscles. If you tense up those muscles while sleeping, which I tend to do sometimes, that can make you much worse. Some people with MG tense up their head/neck/jaw/tongue muscles while sleeping and do so for HOURS. Try doing that while you are awake! It'll make you so much worse. That's why some people with MG are weaker in the morning. I love how doctors pooh-pooh that notion. And if you are a "body mover" while sleeping, you'll be even weaker.

Choking is scary. I just had an episode last night and then this afternoon. Sometimes it's like I'm going to cough out my intestines it's such a violent cough/gag. There are these fabulous lemon candies called "College Farm Organic" Luscious Lemon. They are made of organic, simple ingredients and taste like real lemons and not sugar like some lemon drops do. They really help me when I cough/choke due to MG. I don't know why and I don't care! They do the trick. You have to be careful not to swallow them though.

It's pretty much summer, so be careful not to get heated up - not even for a few minutes. I hope you have recovered a bit.

Annie