Has anyone had a sleep study?

[palmtree]

My MS came on in the course of about two years. The demarcation line between before and after diagnosis was very definite.

Before, I had insomnia but nothing else unusual. But after my major flare, I couldn’t turn over in my sleep, was paralyzed for about two hours in the morning, had a tremendous amount of dreams and suffered restless legs. Some caregivers have told me that my legs kick violently, I talk a mile a minute in my sleep and there are times that I am awake.

A friend told me the she had a sleep study done so I thought it would be interesting. Went to a sleep doctor and he said that it depends where the demyelination occurs in our brains whether we experience extreme fatigue. They scheduled me for January 17.

This was some validation that MS is not a one size fits all disease. We already know that but there is still a tendency to compare ourselves to others.

So, my question is, has anyone else had a sleep study done and what was your experience? Did you learn anything about your MS from it?

[pennstater]

I did have one done while experiencing extreme fatigue. It came back that I had restless legs, but slept well and spent a higher than average amount of time in REM sleep (the deep, restorative sleep).

So basically, they concluded that fatigue was not related to sleep issues. Once neuro ruled out depression, attributed it to MS fatigue. So yes, I did learn something. Hope you do too!

[palmtree]

Thanks for telling me your findings. Actually, i have exactly the same problem: RLS and tremendous amount of dreams. It seems like whenever I really get to sleep I am dreaming the whole time. In reality, they know that REM sleep happens at the end of each 50 minute sleep cycle and increases in the morning.

The guy explained that for people with MS the brain has to work so much harder to restore itself because the nerves have to travel around the plaques. Of course, that is something we already know. Whenever I move my foot forward I am aware of how much more time and how much more work it takes to do the action.

It often feels like everyone is running around me with the VCR on fast forward.

Maybe I won’t do it with covid around. I think my results will be the same as yours.

[MS TOO]

I've had insomnia for years and can't tell you when was the last time I had a really good nights sleep. I have spasticity and get really bad muscle cramps, especially at night, which doesn't help my sleep pattern (I take baclofen for it). I suffer from fatigue regularly so my Dr. decided it was time to do a sleep study. I had told my Dr. that, being an older male, I was getting up numerous time throughout the night to use the restroom because of an enlarged prostate.

This was validated by the sleep study and I also learned that I have mild sleep apnea and stop breathing throughout the night. It is mild enough that it was only recommended that I try a CPAP machine. I haven't tried one yet though as I already have to wear a wrist brace for arthritis and an ankle brace for a contracted Achilles tendon at night. Add in a cat that decides she wants to eat sometimes at 3 or 4 in the morning and I don't anticipate getting a good night's sleep anytime soon!

So what I learned is what I already knew, I don't sleep well and I now have sleep apnea added to my ever growing list of ailments!

[NoraS]

I had a sleep study at the neuro's recommendation before my MS was confirmed. I had severe sleep apnea and have been using a CPAP for about a year now, but I think it's only marginally affected my fatigue levels.

A word of advice for anyone considering a CPAP: If you're in the middle of a major exacerbation when you get it, take a housemate with you to the training class. Unless you have your full faculties, you will not be able to set it up on your own or even refill the water reservoir every night. These machines are not made for people with weak hands or cognitive difficulties.

[Mamabug]

Nope.

Some years post MS, I've had trouble sleeping but recently it's been good.

[palmtree]

Insomnia and MS are a bad combination.

[MS TOO]

I've had insomnia for years and can't tell you when was the last time I had a really good nights sleep. I have spasticity and get really bad muscle cramps, especially at night, which doesn't help my sleep pattern (I take baclofen for it). I suffer from fatigue regularly so my Dr. decided it was time to do a sleep study. I had told my Dr. that, being an older male, I was getting up numerous time throughout the night to use the restroom because of an enlarged prostate.

This was validated by the sleep study and I also learned that I have mild sleep apnea and stop breathing throughout the night. It is mild enough that it was only recommended that I try a CPAP machine. I haven't tried one yet though as I already have to wear a wrist brace for arthritis and an ankle brace for a contracted Achilles tendon at night. Add in a cat that decides she wants to eat sometimes at 3 or 4 in the morning and I don't anticipate getting a good night's sleep anytime soon!

So what I learned is what I already knew, I don't sleep well and I now have sleep apnea added to my ever growing list of ailments!

Now 3 years after this post I am following up as I tried a CPAP machine and it showed that my sleep apnea was worse with the machine than it was without the machine 3 years ago. My test in 2019 showed I stopped breathing 5 times per hour and last night I did another sleep study which showed I now stop breathing 12 times per hour. Some adjustments were made to the CPAP and now I will try it for another week and see if it helps. Apparently there is a different type of CPAP machine that I may need to try depending on the results. I saw my neurologist this week and he told me there was just a recent study showing that MS patients with sleep apnea greatly benefited from using a CPAP so I'm hoping this new test shows it helps.