I Just Want To Sleep: Insomnia and MG

By Sally Farrier

2 min read

One of the first symptoms of my myasthenia gravis (MG) was insomnia. The first night it happened, I was not too concerned because anyone can have an occasional night of insomnia - even without MG. But then the insomnia lasted a week ... then 2 weeks ... until it just kept going.

How insomnia impacts me

Other than the obvious impact of feeling extremely tired, insomnia causes my MG to be very symptomatic. I also have the tendency to have depression. While I don't normally deal with depression, it can go hand in hand with both of these conditions. The good thing is, after dealing with this for many years, I'm very well aware that as soon as I get some sleep, my depression immediately disappears. Although, it takes a while for the MG symptoms to calm down.

Things I have tried to improve sleep

I have tried literally everything to improve sleep. I follow what the experts say to a tee. You know ... the dark room, the quiet, making the bedroom a relaxing spa-type setting. Yeah, none of that helps when I'm having a spree of insomnia. Matter of fact, it almost makes it harder even to rest ... almost irritating.

In that quietness, every little sound is accentuated. There are constantly more little sounds that I was never aware of until I lay there in the middle of the night trying to go to sleep. And yes, I have even tried not taking electronics into the room, like phone or tablet, and we don't have a TV in our bedroom.

But you know what? When you have insomnia, especially when you have insomnia and MG, not having something to do that can make for a long, long night. It just gives me time to think, and usually not about good things. It's more like having a pity party and then that causes the MG to be worse due to stress.

What I have found that actually helps me

For me personally, it helps to just kind of roll with the flow when it comes to insomnia. I have read that sleep problems can be common in several health conditions, including myasthenia gravis. I have found the more I fight with insomnia, the more flustering it gets. Again, that leads to stress. With my MG, stress always has a negative result, even if it's a good stress.¹

So yes, I do take a tablet with me to bed. I play games, research different topics, watch movies, listen to music (with ear plugs in). Whatever I can do to help get me some rest. I will read a real book if my eyes can take it! Some nights rest is the best I can hope for.

Taking Mestinon during periods of insomnia

I need Mestinon every 3 hours while I'm awake. During times of insomnia, that ends up being a lot of Mestinon in a 24-hour period. I have tried skipping it during normal sleeping hours with insomnia, but it doesn't end well. I'm unable to move, talk, see ... you know, just MG stuff.

Listening to my body

At the end of the insomnia time, I always resort back to needing ear plugs and a sleep mask. But I can't use those too soon, otherwise I'll just lay there at night. It's all about listening to my body and what my body needs and when.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Myasthenia-Gravis.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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FrankHS Member
 Ok, here’s what works for me. My neurologist has me on 150mg of trazadone before bed and melatonin. It helps some, but if I don’t take it I just don’t sleep at all. Now this next one won’t be acceptable to some. But I use hemp derived Delta 8 THC. This is legal in most states and available in several forms. I like vaping either buds infused with the Delta 8 to get started since it takes effect pretty quickly. But before that I take a delta 8 gummy of 8-12 mg since they can take up to an hour to talke effect. When I wake up a couple or more hours later I take another melatonin and a couple vape puffs and go back to sleep. This has worked pretty well for me. Those in legal cannabis states could go that route also. There are strains cultivated specifically for relaxation and sleep. This doesn’t work quite as well for me as delta 8, but it does help. There is a good bit of information about both these approaches on good ol’ Dr Google! Best of luck. Frank
Xreid Member
Yeah. I listen to an audio book when we go to bed. I often fall asleep during part of it, so, if it's a good book, I listen to it a couple more times to get it all. I find books that are dramatized don't work well with the sound effects, yelling, etc. Just a nice calm voice reading a book of at least 8 hours works best. I listen to non-fiction that interests me (history, some science, essays) and fiction (upbeat and humorous when I'm depressed, good storylines, the classics). I recently finished Anna Karenina and have War and Peace downloaded for the next long bout of insomnia. My local library has lots of audiobooks that I can borrow without even leaving home. : )
Dnncatlady Member
I recently was diagnosed with ocular MG and recently have been experiencing this. I go to bed at 11 and get up at 12 and watch TV for half hour to an hour. Last night was the worst. I was up an down till 3 a.m. The whole day has been a mess. I'm so glad I saw this article.
1. Jess.Hall Community Admin
 <inline-mention username="Dnncatlady" user-id="8533676"/> sorry to hear last night was such a tough night. Hoping tonight may be a little better night of rest. Kindly, Jessica, Team Member
CommunityMember55af13 Member
I, too, have the 180 mg. SR Mestinon, taking one tablet first thing in the morning, and the other immediately before going to bed. I have for too long experienced insomnia, and for some years have been prescribed 50mg. Sanis - Trazadone which I should use half or a full tablet, as I feel necessary. I often take half immediately before trying to sleep, and it regularly doesn't help, and I just doze for a few hours, so then take the other half. Most nights this is just how it is, and rather than sleeping soundly, I simple doze, and when I get up, I still am pretty tired. What to do?
1. Gates ann Member
 I also have trouble sleeping and was put on trazodone most of the time it helps but sometimes it doesn't. When it doesn't I go to living room get in recliner turn TV on and usually within 1/2 hrs I'm asleep. But only for about 3/4 hrs but that is all right I just have to take the day slow and easy. Hope it's just one night I have to do that. If not I'll just repeat the process as long as necessary. Usually 2/3 days. Then I'm back to sleeping normally.
CommunityMembere729ce Member
I take 2 Xanax every night to go to sleep otherwise I’m up All night! I still wake up around 3-4
Cheryl Member
 When I started out sick could fall asleep at the drop of a hat, but wake every hour gasping for breath, heartrate pounding. Was told this was from weak muscles of respiration and put on Bipap which instantly let me sleep longer but didn't help the weakness/fatigue blurred vision til few yrs later got mestinon. Asked for SR formula for night as if awake enough to get up, swallow pill couldn't get back to sleep. Has helped tremendously to do twice a day SR so can actually shower in evening, get dressed in am. I take my phone to bed with me and have some downloaded audible books that are soothing enough, heard often enough, they are lulling to sleep and mask the tinnitus a bit. On really bad nights I call for cats and one will purr and stay under my hand till I fall asleep Basically I am gray haired toddler, warm shower, story, soft animal...
TheSteveYedinak Member
 I have Congenital Myasthenia Syndrome. It was diagnosed as MG in 1958 at Johns Hopkins. It was only diagnosed then because 4 brothers in the family had the same weakness to varying degrees, and the oldest was confined to a wheelchair. We four brothers were started on mestinon at that time, and various other medication have been added over the years. One thing I have told doctors forever is that I have never been able to sleep regularly. Some of my earliest childhood memories were of being awake until 3 or 4 in the morning. It has been a lifelong problem. Finally in 2003, a doctor suggested trying ambien. For me it was a life saver. I have been using it ever since, and though I still have occasional bouts of insomnia, I usually can get between 4 and 8 hours of rest nightly. It was an issue during hospitalization in December 2021 when I was in urgent cardiac care (I'm fine now), because the doctor started out by ignoring my 17+ years of experience with the medication. I did not let it go (One must always be prepared to strongly advocate for oneself with doctors who don't know you, or you will be treated according to averages of sets of indicators). I explained clearly my history with the medication and that the 10 mg dose had allowed me to sleep regularly for that many years when I had never been able to do it for my entire life up until that medication was prescribed. He finally relented and agreed to allow it. When the medication was brought at bedtime, after the doctor had already left for the day, I discovered he had only prescribed the 5 mg dose. After a night with no sleep, I let him have it with both barrels the next day when I saw him again, and the prescription was adjusted to 10 mg. I have occasionally used the mestinon timespan for nighttime, but it never lasted more than 5 hours for me. When insurance would not cover it any longer, I finally started a regimen of an alarm two hours before I actually had to get up just to take my morning dose. With the ambien, I was generally able to fall back asleep after that and would have enough strength when I had to get up to do normal morning cleanup, etc. 
1. Sally Farrier Moderator & Contributor
 TheSteveYedinak, Wow 4 of you with Congenital Myasthenia Syndrome that's a lot!! I know those "childhood memories were of being awake until 3 or 4 in the morning". I now know for me that is & was the MG. Glad to hear that you have found something to help! Best wishes!! Sally Farrier... <a href='http://Myasthenia-Gravis.com' target='_blank'>Myasthenia-Gravis.com</a> (team member).
RNEducator Member
I was also going to suggest Mestion SR 180mg at night. I too have sleep issues-I can sleep for 10-15 hours throwing off my medication schedule (Mestinon 60mg q5h), that is when I can swallow pills which isn't every day. This does minimize my symptoms when I first wake up.
CommunityMember8671010 Member
There is a 180mg time release mestinon that gets me through a 12 hour period and which should get you through a 9 hour period. My insurance even through medicare and my medicare advantage plan won't pay for it but a 30 day prescription costs just under $100 in my area using a GoodRX coupon.