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Sleeping with LEMS
@lorildunham‘s most recent article “Seeking a Good Night’s Sleep With an Autoimmune Disease,” talks about the ever-present issue of getting enough rest with LEMS.
Luckily for me, I usually have no problem falling asleep. In fact. my fatigue is so severe I very often fall asleep the minute I sit down on the couch, take naps on the weekends, usually sleep in every day I can, and often go to bed during the week around 8, or at the latest 9pm. Of course, I’m up for work everyday at 5:30, but still.
Personally, It seems I’m never well rested, I can’t get enough sleep.
Many of you seem to have the opposite problem, you can’t get to sleep. I know @pricewool and I have had several talks about this.
I do have a strict nightly regimen that I follow which I feel gives me the best chance at getting restful sleep.
I always take melatonin about 30 mins before I go to bed, along with 25mg of CBD. Like Grace (@lorildunham‘s daughter), I also listen to ambient noise or guided meditation as soon as I get in bed.
Do you have a strict routine you follow at night?
Do you feel that LEMS affects your sleeping habits?
If so, how has LEMS changed them?
Look forward to hearing from you all!
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3 Replies
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Ashley, thanks for sharing your experience and tricks with all the differing sleep problems that come with LEMS. For us, it’s been kind of a trial and error process so I love hearing what helps other people.
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I have trouble getting good sleep, but for a different reason. My dysautonomia affects my bladder control so I am now getting up anywhere between 3-7 times a night to void. The good news is that I am able to return to sleep pretty easily most times. The problem is of course that I do not get any more than a couple of hours at a stretch, ever. Sometimes it is rather less than an hour. That’s pretty frustrating, let me tell you.
I have an appointment with my urologist next week and he will investigate other potential causes for this. However I am not optimistic because prior to the onset of my LEMS symptoms I seldom got up more than once or twice a night. At least we can potentially eliminate “normal ” causes of such behavior. Then I suppose it will be up to my neurologist and I to continue to tailor medical treatments to see if it can be corrected.
I have tried melatonin and it did not seem to change things much. I tried a CBD product and although the calming effect was nice, the THC component felt just like the nerve tingles I get when I run low on my Mestinon/Ruzurgi. So, not pleasant.
I do run a vaporizer in my room, as well as taking Pilocarpine just before bed in order to combat my dry mouth. I also wear a head strap meant for CPAP users, to keep me from mouth breathing.
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@bernie Hopefully, your visit to the urologist will help. I generally get up to pee once or twice in a night, but not every two hours as you report.
The dry-mouth is so LEMS. I get it sometimes, but not every night. Regarding running a vaporizer all the time, just please watch to keep it sanitized. I’ve run one previously, but not anytime lately. I remember using an ultra-sonic one which deposited a fine layer of white “dust” on surfaces.
Keep us posted on what you find out!
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