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Choking

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Old 02-22-2018, 07:29 PM   #1
ErinBear
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Default Choking

I have dysphagia (trouble swallowing) which is apparently related to my myasthenia gravis. Maybe some of you do, too. When my generalized symptoms are worse, my swallowing gets worse also. I apologize because this isn't a pleasant topic, but one of the things that always catches me off-guard is that I tend to choke on my own saliva. I'm experiencing more of this type of choking right now because my symptoms in general are worse. Yes, I've told my doctors, and we're trying to do what we can to treat the problems I'm having. But if any of you have this particular problem, what do you do to help deal with it, if anything?

Thanks,
Erin
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Old 02-22-2018, 08:25 PM   #2
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I have same problem and no matter what I do nothing helps. My wife has a baby monitor in my room so she can hear me if I choke. Prayers
Mike
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Old 02-22-2018, 08:55 PM   #3
Snoel
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I noticed that if you tend to overdose on Mestinon you'll produce more saliva and tend to choke more...also if you talk a lot you're fascial and neck muscles tend to get weak...I tend to pause for a few hours and things get better.

When I use to do PlasmaPheresies it eliminated my symthoms I'm now doing lvlg and tend to have problems with swallowing but more with my speech... especially when I'm near my renewal every 3 weeks. As mentioned in a earlier post there's not much we can do to improve symptoms.we have to learn to cope with which can get agrevating or ackward try to keep cool and breath in and out and usually calmes down.
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Old 02-22-2018, 09:11 PM   #4
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Oh, Erin! I'm sorry you are worse right now!

Swallowing issues are rough. Do you talk or socialize a lot? That will make swallowing muscles worse.

A cold washcloth on the jaw/neck muscles can help. Using a soft yet firm neck brace can help relax those muscles, if it is the right kind. You don't want anything pushing up into any muscles either. Do you tense up when you sleep? That can make those muscles worse.

If you haven't been evaluated for sleep apnea, you should. Choking while sleeping, as Mike mentioned, can make those muscles worse. A APAP (a new kind of machine with alternating pressure) or BiPAP can help, even if you don't have apnea.

I can choke on saliva too. When the choking/coughing is really bad, like when I aspirate food, I nearly cough up a lung! Scary.

I always keep cold ice water around, which helps me. For some people, drinking through a straw makes things worse. For me, drinking through a straw for all liquids uses less of the bulbar muscle groups. I eat slower than practically everyone. Sipping water between bites helps. I also don't eat tough to chew food, or anything thick such as peanut butter. Citric foods can make someone choke more easily.

Watch what you do during a 24-hour period. At what times do you tense up those muscles or use them more? Really think of anything that could make those muscles weaker and then try to mitigate them.

Even while on drugs, MG can still cause weakness after activity to varying degrees.

There's only so much doctors can do. I think that pinpointing what exacerbates the situation can help. I haven't found anything to avoid choking altogether. But I have alleviated it. Good luck!


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Old 02-23-2018, 09:24 AM   #5
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Mike, I'm sorry you go through this, too! Having a baby monitor in your room sounds smartl. I'm glad your wife can listen and help if you have a choking problem. Sending prayers your way, too!

Thinking of you,
Erin
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Old 02-23-2018, 09:31 AM   #6
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Snoel, thanks for your response. I am on plasmapheresis, and it does help me. Like you, it is worse for me when it is time for my next treatment. I don't generally do a lot of talking and socializing, but yes, that can make it worse also. Rest helps!

Sending good wishes your way, hoping that the IVIG helps as much as possible. Choking is a tough thing. I agree, staying cool and breathing in and out is a helpful thing! I try to stay peaceful inside as much as I can, also, and that helps, if that makes sense. If I get upset by the fact that I'm choking, that seems to make it all even worse. It is a bit unnerving, but it's possible to let it get to me even further. Perhaps that makes sense. So I do my best to stay peaceful, and that seems to be a good strategy.

Thinking of you,
Erin
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Old 02-23-2018, 09:44 AM   #7
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Hi Annie,

Thanks so much for your reply! No, I don't normally do a lot of talking or socializing. But things have been more busy than usual with a lot of medical appointments, treatments, and things, and I think I am more tired because of it. I think I may also still be recovering from two minor surgeries I had about a month ago, although I am making progress.

Yes, I have a BiPAP/AVAPS machine, and it really helps me! I use it at night, and sometimes during the day if I am having trouble breathing. It has made a big difference to me. I'm sure it has reduced my need for hospitalization.

Using a cold washcloth on the neck sounds like a good idea. I will try that. I have a neck support I can try also, to see if it helps.

For me, I was told not to use a straw while drinking, although I'm sure other people may get different recommendations. Like you, I am a very slow eater, but that is okay with me. Safety is more important than speed! Sometimes tucking my chin while swallowing helps me, but I confess...sometimes I forget and I have to go back and review all the tactics when my problems worsen again. I have a feeding tube and my doctors would prefer I use it exclusively, but to be honest, it is not always easy to live life that way. And even if I do use it, that still doesn't resolve the problem of choking on one's own saliva! That is a very awkward situation.

Anyway, thanks for your response, and the good suggestions. I really appreciate them. I'm sorry you deal with this, too, and I send good wishes your way, Annie. I send hugs if okay.

Take care,
Erin

Last edited by ErinBear; 02-23-2018 at 09:45 AM. Reason: typo
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Old 02-24-2018, 08:45 PM   #8
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Erin, You are taking Mestinon, right? How much?

What I've noticed about taking Mestinon (without other treatments except for my Flovent), is that I can't really do things between doses. If I don't make sure that any activities are done within that two hours of the every three hours I take Mestinon, I can have all sorts of increases in issues: choking, increased risk of muscles pulling or being strained, or any other "side effects" of weaker muscles.

Do you drink coffee or any other caffeinated beverages (or foods)? That can have an effect on saliva and weakness, since caffeine is a cholinesterase inhibitor like Mestinon as well.

There really is a science to managing MG!

Annie
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Old 02-25-2018, 12:08 AM   #9
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Hi Annie,

Yes, I take Mestinon. I take one pill every three hours while I am awake. I have the same problem you report, that I have about 2 good hours after I've taken the Mestinon. Then the last hour is difficult until it is time for the next dose.

Unfortunately, I can't tolerate coffee or other drinks with caffeine. I mostly drink water.

Sending good wishes to you and everyone else here who is dealing with MG.

Take care,
Erin
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Old 02-25-2018, 07:12 AM   #10
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I have trouble with choking on saliva, also, at times. Seems like little bits and little things can be a problem swallowing, big things and regular eating isn't.

I figure it's the little things that slip down unnoticed that get caught, when I'm not paying attention and it isn't big enough to get my throat to recognize "something's coming down, pay attention and send it the right way." The epiglottis is weak or "lazy" and lets little things like a bit of saliva or a tiny bit of food (those last couple rice grains that didn't go down with the rest) slip through because it wasn't triggered to do its job by the feeling of a big mass coming its way.
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