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Sleeping problems with LEMS?
Good morning all!
Hope you were able to enjoy some of your time this weekend!
I am curious if any of you also occasionally have problems getting to sleep. Sometimes this happens to me for no apparent reason and I end up laying in bed for hours just hoping to fall asleep. Last night was one of those nights and I finally got to sleep around 12:30, so I will probably be “running on fumes” today since I’m heading to work. This is also common for me after IVIG but I’ve learned to expect that because of the steroid I get with my pre-medications.
If you are like me, what are some tricks that help you get to sleep?
Some tricks I’ve learned to use are ocean sounds on my Alexa and CBD oil which usually helps me relax and get to sleep. I also take melatonin regularly.
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5 Replies
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Ah, those sleep problems. Don’t you just love ‘em. Like you, I now take a Melatonin tablet each night before bed. I started that when my attending. when I was last in the hospital, gave it to me. It seemed to help me sleep there, and I can’t think of any more difficult place to sleep.
I too notice difficulty sleeping post IVIG. It usually lasts two or three days, and I don’t get a steroid. I haven’t found the solution for that one.
And finally, specific to me, I was found many years ago to have obstructive sleep apnea. My CPAP therapy now allows me to sleep deeper and more restfully.
So that’s my story, and I’m sticking to it. Sweet dreams everyone, everyday! -
Hi – this is Ellie. I am married to Wes who has been in treatment for LEMS since 2/15. Wes’ sleep problem is his inability to stay awake. He has sleep apnea and prior to his lems discovery, he was also diagnosed with idiopathic hypersomnia. He takes meds which may need to change, but does anyone else struggle with wanting to sleep almost all the time?
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@emonty Eleanore, I’m not sure by your date noted, whether Wes is just newly diagnosed last month or if it was February, 2015.
Given your report of his sleep apnea and idiopathic hypersomnia, I hope he has been referred to a sleep specialist, usually a pulmonologist. You do not mention how his sleep apnea is being treated.
Here’s the LINK to a brief article I pulled on idiopathic hypersomnia from the NIH Library. Perhaps you have already read it, but if not, it’s a good place to start.
To answer your question, yes, I’ve had difficulty in the past with falling asleep or being extremely drowsy at inappropriate times. Ultimately, the cause for me was found to be obstructive sleep apnea. Using CPAP has relieved me of those symptoms.
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Thank you for your caring response. Wes was diagnosed in Nov 2021, but lems treatment did not actually begin until Feb 2022. He was under the care of a sleep specialist at the time who identified his apnea and hypersomnia. He is on CPAP and meds.
His neurologist is aware. My question was basically to see if it is actually a symptom of lems.
I appreciate the dialogue! -
Hey @emonty
I don’t have sleep apnea, but I do struggle with fatigue which causes me to need more sleep than most people. Maybe this is what you’re referring to as part of Wes is experiencing?
If so, fatigue is a common associated with LEMS. Hope this helps!
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