Sleep Apnea

Hi, I just wanted to say that I have just been diagnosed with sleep apnea. I have been really tired during the day and would fall a sleep any time I sat down and relaxed.

I was told by my Dr when I went to see her for another reason. When she was reading my History she said that I had been diagnosed and they are going to send for me to talk about using a CPAP.

I was surprised to hear about it this way but at least I know now. Hopefully they can help me. It's just one more thing to add to the list. I think it's common with ataxian's So if your tired all day or fall a sleep a lot, it might be worth getting checked out. Hope every one's keeping their spirits up and feeling hopeful.

Same here! My husband was also just diagnosed with sleep apnea--we are too go to appt for CPAP. Anyone else have any experience with this? Joy

My doctor sent me for a sleep test, and even though I thought I didn't sleep at all that night due to being over tired, they said I had sleep apnea. I got a CPap machine in mid December. I am takeing it back this week. I was not able to sleep with it. I think that I got maybe 3 fair nights of sleep the whole time I used it. It also interfered with Hubby's sleep. I have slept the night through the last two nights without it. We have come to the conclusion that in cases of severe sleep apnea it might be beneficial. In my case, I think it was just a hunch on the doctor's part that it might help the ataxia. Grouping at straws, if you will. I often fall asleep in front of the tv late in the day, but not other times. Since the ataxia developed, I seem to get noticably tireder with physical exertion. Doing the simplest things seems to take more effort than it used to.

I don't want to sound discouraging, for your husband it may be just what he needs. We have a cousin who "swears by" his CPap machine. It has done wonders for his severe sleep apnea, but he does not have ataxia.

My husband has sleep apnea (not ataxia). Using the BiPap machine has been super helpful for him. It's not glamorous, but it works!

I had a partner once who had a blue masksnorkelly thingy.He went to sleep and I lay awake because of the noise.It was like something out of space.

That was years before my ataxia was diagnosed but my Neurologist always asks about sleep problems.I sleep like a log.

Many on this site with differeent ataxias have problems with sleep.

I have sleep apnea, but it was diagnosed before my stroke which caused ataxia. So, for me, it is not caused by ataxia.My case is mild to moderate and because it happens mostly when I sleep on my back, I first tried to train myself to sleep on my side, but my sleep study showed unsatisfying results.
So they recommended the “mouth appliance” which is like a retainer worn at night while you sleep. It pulls the lower jaw forward, opening the airways. Apparently in some people, the soft palate in the back of the mouth, drops down as the muscles relaxe and the tongue drops back down too. Sounds awful, doesn’t it?
I wore it for month and another sleep study was done. Again, they did not like the results. They now would like me to use the CPAP, but two if my doctors do not believe my apnea is bad enough.
Somehow, I now sleep mostly on my side and I believe I sleep much better.
However, for your information, and this might interest you, Granny H, there is a new kind of CPAP machine which has a sensor and helps you breathe only when you need it. I will find the information for you and post it after this post. I don’t know how to put this on hold…
Anyway, this machine is more bearable and quieter from what I understand.
Going to get the CPAP info.

Got the info. This machine is called the APAP machine as in auto adjusting CPAP. You can find the info at www.cpap.com

Thank you, Cicina!

Cicina said:

Got the info. This machine is called the APAP machine as in auto adjusting CPAP. You can find the info at www.cpap.com

I used the little pillow things in my nose, but Hubby also lost sleep due to the noises. I think I lost sleep due to worrying about keeping him awake as well as the noise. Dr. and RT kept telling me the machine was not supposed to be noisy, but it sure was.

Marie Turner said:

I had a partner once who had a blue masksnorkelly thingy.He went to sleep and I lay awake because of the noise.It was like something out of space.

That was years before my ataxia was diagnosed but my Neurologist always asks about sleep problems.I sleep like a log.

Many on this site with differeent ataxias have problems with sleep.

I was diagnosed with sleep apnea and ataxia at the same time, 10 years ago. I use a C-Pap machine, as when I had my sleep study, I stopped breathing 67 times an hour (not good for the brain or heart...,ha!). I was always tired and woke up with a dull headache each morning (oxygen deprivation to the brain...,yikes!). It took me a good year to get use to wearing a full face mask (covers my nose and mouth, as my mouth drops open when I sleep). The machine makes a humming noise, although it doesn't disturb my husband like my snoring did...,ha! I recently bought a plastic mouth appliance online called "zquiet", as I was curious if it would work for me. I've used it a couple nights and my husband claims I don't snore. Therefore, I'll talk to my doctor about it. Anyway, my neurologist said many people with ataxia also have sleep apnea. ;o)

I have a sleep study scheduled Sunday eve. Hope I don’t need another device or accommodation!

Good luck with your sleep study Debus! Yes, I hope you don't have sleep apnea, but if you do, it'll be good to know, as it can cause many serious physical/health problems, as well as constant fatigue. Ataxia already causes fatigue, so additional fatigue from sleep apnea is a bit much...,ha! C-Pap is a highly effective treatment, it just takes time to get use to it. I got use to using it, as the physical/health problems convinced me it was so worth it! And not feeling fatigued all the time is wonderful! Also, as I mentioned before, I'm trying an oral appliance that I think is working for me. So, we'll see...;o)

I too have sleep apnea. I have a CPAP machine and find it difficult to sleep with. I know I have to keep trying to use it but I can not be held accountable for the machine when I wake up and it's dismantled on the floor. I wish you well using it.

i too have been diagnosed with sleep apnea in 2006. i have got obstructive as well as central sleep apneas and hypopneas.

  • At time of diagnosis my bodyweight was 95kg and i had an AHI (Apnea-Hypopnea-Index) of 15 -17.. Now i went again to a sleep laboratory. My weight is 64 kg now and my AHI only 4. Normally you don t need a CPAP with such a low AHI. But perhaps i will go on needing it because of some unrhythmic breathing Will know this in four weeks when the doctor has examined my polysomnography and sent me the report. In the sleeping night at the sleep laboratory i met only an assistant, no doctor was present in the unit.