I came across something that has made a huge difference for my sleep and wanted to share this in case it could help a fellow ataxian even a little bit.
I thought I was sleeping 9 hours per night . I even was having to take naps somedays on top of that. I couldn't understand why I still was having so much fatigue though out my day I sure thought I was sleeping enough. I talked with my Nero about it. The only thing he suggested was a sleep study and I had one a few years ago which didn't give me any real answers that I wanted. So to me that wasn't an answer to having fatigue constantly! So I thought that there must be something out there now that tracks a person's sleep with all this technology. I did some research and came up with one. So I purchased a fitbit flex in June for the tracking of my sleep. Come to find out minus the times I was awake (I didn't even know I was) and my restless times during the night, I was coming up with only 4 hours sleep every night. Well no wonder I had so much fatigue. So I started doing research on sleep hygiene, trying and changing everything I could in my environment that might help with my sleep. Which helped some as it was reflected on my Fitbit flex app anywhere from 6-8 hours. But I haven't stopped reading about how to improve my sleep. Then I read this article not long ago about how the blue light makes the brain think it's day time and chemically changes the sleep pattern. Well I knew most of that but they added something new. They suggested to get blue blocking glasses and wear them 2 hours before sleep to wind down the brain to get ready for sleep. And wear the glasses all night long. I bought some from Amazon which came in 2 days for $5. But I wasn't sure how I'd sleep with them on. Or watch the T.V. with them but it's fine. I haven't had any problems with wearing them all night long.
I'm so happy to report that because of these glasses I've been sleeping 8 1/2 - 9 hours per night since then and my fatigue is very little if any! On my fitbit flex I can check the app on my phone to see how long I've slept. It's like getting a sleep study every night that gives me the information that I need to tweak things if I need to! Win, Win! :-) I wanted to mention this to everyone here because if someone is willing to try even the glasses alone it might your sleep too! I'm always looking to make this ataxia that we have even a bit better. I believe our medical community is really trying to help us but I believe we can help ourselvse out at the same time. Hey it's worth a try right? :-) Good luck with your sleep! :-)
The flex is great. I use a similar thing I use a Pebble watch. For me as I wear a watch and so everything is in one place. I did wear a flex for just the same reason. I am going to check out the specs.
So glad your sleep pattern has improved,my wife has the opposite problem with her sleep she is always fatigued and can easily sleep 16 to 18 hours a day
This is incredible! I had a device years ago that tracked my sleep and it was very depressing to see the outcomes. Now I want to try your suggestions! Thank you!
Interesting... thank you.. will give that some thought. My neuro explained to me that the tiredness is caused by brain and body trying to cope with ataxia. This coping with general living is equivalent to us running a marathon!
No tiredness as far as I am aware of Get to sleep easily with help of a book..Sleep deeply and not aware of anything at all until I wake up 8hrs later.Always been the same but husband and visitors(thtrough the wall) say I sound like a herd of elephants.Am I sleeping correctly or deluding myself?or lucky.Willling to swop this for some tremors!
Jeannie, thank you so much for the recommendation. I have a lot of problems with sleeping through the night. I will try the glasses, & hopefully will have the same results.
Jeannie, I am on my first week of my fibit, I have trouble getting to sleep and when I wake up during the night, I usually do not go back to sleep. I have been getting between 3 and 5 hours a night, then I finally just pass out one night and sleep 8 hours. That doesn't happen very often and when it does, I usually have a great next day. I will try the glasses, I will try anything to get a good nights sleep.
Thanks so much for this. Do you use a cpap or just the fitbit? I toss and turn and wake with tingling fingers from pinched nerve in neck. Today had a massage with cranial work --wow! It was an experience I’m going to repeat. I will try your glasses and have read some about avoiding TV and electronics before bed --hard to do
-use pink noise (sounds like water), rather than white noise which can be loud;
-change your pillow once/year;
-only drink alcohol 3-4 hours before going to bed;
-specialty lightbulbs that filter out blue-light from computer screens, etc. which motivate you to stay awake;
-a banana/honey/cinnamon tea; and
-Valerian and Melatonin capsules.