Who else falls asleep at the drop of a hat?
This only seems to happen when I’m sitting on the sofa or in my chair. I never actually feel myself getting sleepy; instead, I suddenly find myself waking up with no memory of even closing my eyes. It can be quite frustrating, especially when I’m trying to watch TV or read a book.
What’s even more embarrassing is that sometimes I nod off while holding a cup of tea, and let me tell you, waking up to a warm, wet feeling in your lap is rather disconcerting. Don’t worry—I don't hold my tea while it's boiling hot, so I’ve never burned myself, but it's still an awkward experience.
I’ve been tested for narcolepsy and sleep apnea, and the results came back negative. My doctors attribute it to MS fatigue. I’m just curious if anyone else has experienced something similar.
I have to admit,
. When I first started to read your post, I thought, "sounds kind of like narcolepsy or some other sleep disorder", but your last paragraph cleared that up! I think it was smart of you to get a sleep study done, to rule out sleep apnea and narcolepsy.
I'm glad you take measures to not burn yourself with your tea, as that would be even more unpleasant than waking up with a warm, wet lap (which, also sounds unpleasant).
I know many of our members have shared stories of their bone deep, unrelenting fatigue, so you are definitely not alone in that! One of our contributors wrote about how MS can feel like narcolepsy -- https://multiplesclerosis.net/living-with-ms/narcolepsy. And here's another piece she wrote on daytime sleepiness -- https://multiplesclerosis.net/living-with-ms/tired-all-the-time-is-it-sleepiness-or-is-it-fatigue. There are literally a dozen or more stories/articles on the topic of sleep and MS on this site, so you find yourself in good company!
Now, as far as dealing with the sleepiness? Well, that's another issue. Some of our members have had some measure of success improving their sleep, while many others have learned to live with the fatigue and manage their daily lives around it, when possible. Some members have prescriptions for a medication called Provigil, to help with the fatigue. But, using it to treat MS symptoms is considered off label use and many insurance companies won't cover the cost of it for that reason.
I would definitely keep in communication with your doctor about any underlying causes (besides MS) and make note of any more changes to your energy/fatigue levels.
As I said before, you're definitely not alone in this!
Best, Erin, Team Member.I feel this! I've experienced for years similar experiences. I am not diagnosed, and have not had a sleep study or ruled out narcolepsy.
But it's bad sometimes. I find myself in the evening while working (computer job, sitting down) moments that I absolutely cannot keep my eyes open. I'll be in the middle of writing an email and my hands start twitching and my eyes start rolling back and I can feel the myoclonic jerks in my diaphragm and arms, but I can't stop it. Then at night, relaxing with the hubby watching a show, I'll doze off without even noticing only to discover I've missed the whole episode. It's even happened to me when I've been standing up, just start dozing off and dropping my head. Thankfully I haven't fallen yet from it, but that's definitely a fear of mine.
The only thing that I have found to even remotely help is to change whatever I'm doing and do a different activity. But that's not necessarily the best thing for me to do because it causes my nervous system to go wonky and the tingles and electric shocks get really bad.
I'm sorry that you're dealing with this, and I hope you can find some relief. I got a nifty couch arm shelf tray thing to keep items out my hands to avoid drops and spills while trying to relax.
Sending much love 💜
- I can relate to your tactic of changing activities. But it sounds like the myoclonic jerks are scary. I'm sorry that you deal with this as well. Best, Lisa the myoclonic jerks are awful. When I'm sitting, it's a nuisance, and the ones in my diaphragm hurt, but I can tolerate it. But sometimes they kick in when I'm standing (fully awake and aware), and those ones are scary. I'll get a full body jerk and I'm always concerned that I'll end up falling. They hit with no warning, and my entire body will jerk upwards, putting me off balance and out of control until it stops.
It's probably pretty comical to see, I usually laugh once I've made it through.
It seems that for me eating is the potential trigger for the struggling to stay awake. The struggle typically starts about an hour after I eat lunch or dinner and typically lasts for about an hour. Regardless of what I eat. Of course, until the end of the evening when the exhaustion hits full force and I end up asleep on the couch for an hour before we go to bed.
I'm heading back to the doctor (a GP) in a week and will be discussing this along with my other symptoms... I'm hoping to make some headway with testing and diagnosis. 🤞
thanks for starting such a good conversation around such an important topic! Sleep can be a rather complicated issue when it comes to MS. Some people feel fatigued all day, others can't sleep at night, and some experience a combination of both! It sounds like your concern is specifically the "speed" at which you call asleep. I agree with Erin, it's great that you got the proper testing to rule out some of the bigger sleep issues. I'm also wondering since you mentioned that this tends to happen on the sofa or your chair, do you tend to have a warm blanket on you when you're sitting? I'm wondering if it's actually prompted from the extra warmth - this could be the case with your tea too - so it's actually a response to an ever so slight elevation in your body temperature. I don't know if this applies, but I figured I would toss it out there as something to consider. Either way, I hope that you find relief and answers soon!
Best
Alene (team member)- You are not alone. Like you, I've passed the sleep apnea tests (twice) and that's not it. But I'm not sure how many shows I've missed while watching with my husband. Sometimes I wonder if it's just slowing down or literally putting my legs up. It certainly induces relaxation. Thank you for starting such a great conversation. Best, Lisa
