Sleep/Mito

I have Complex 1 mitochondrial encephalomyopathy.  I did a sleep study 5 years ago and was dianosed with central sleep apnea and obstructive sleep apnea.  Years ago a genetisist told me he suspected I had a sleep disturbance.  He said sleep apneas are common among people with neuromuscular and metabolic diseases.  I've been using a non-invasive ventilator for 2 1/2 years to help me breathe. 

I have trouble breathing sometimes during the day too (like when I'm sitting in my wheelchair or if I'm talking too much or doing anything energy demanding), so I have a vent on the back of my wheelchair.  I take sips of air as needed through a mouthpiece. 

I also have a vent that I use when I sleep.  I breath through nasal pillows with headgear, because masks just don't work for me.  I reccommend your giving nasal pillows a try.  They are much less bulky and less skin contact.  They feel more natural.  I use ResMed brand, Swift LT for Her.  But they make a version of Swift for men too.

Also, you might want to talk to your doctor/respiratory therapist about a noninvasive (no trach) ventaliator.  They are much "smarter" than bipaps or Cpaps.  I've tried them so I know from experience.  With a vent you have a bunch of different settings so you can really customize the support it gives you.  It might take a little getting used to, but I swear it works!  It works like medicine!   It keeps me alive that's one thing, but it also helps my lungs and breathing muscles sort of take a break.  They don't have to work as hard.  If i can't use at night for a few nights, I'll start to notice my daytime breathing suffers.  Hope some of this helps.  Good luck...sleep is so important.

  Hi, I  have complex1;     I  always get insomnia,I  have done sleep studys; I've been told I  don't get a lot of rem

sleep.......but I  have heard of sleep apnea with mito....good luck...sweet dreams...God Bless......Lori :)

I started with a CPAP several years ago. That did not work for me. I then went to BiPAP  ST with a change in settings every couple of years. A few months ago I felt that I needed a new sleep study to adjust my BiPAP. Instead the sleep doctor at that clinic prescribed a VPAP. I don't know if it is the new machine or the settings on the new machine but using it makes me more miserable. This testing was done at a small sleep center owned by my pulmonologist. I love my pulmonologist but don't think they have the equipment nor the specialized staff for a complex problem like Mito.

I then called Henry Ford main hospital in Detroit, explained what had happened and asked that the director of their sleep clinic suggest a doctor for me. She suggested herself. I will be having a new sleep study next week. I fornd it interesting that even a hospital group like Henry Ford only has equipment in 2 locations that is able to work with Mito or other complex cases.

I'll try to remember to update this topic later. I'm not rmrmbering things too well right now.

Pat Kniel

I am late in updating this and I hope I make sense. I'm not thinking too well right now. I had a new sleep study. Showed that I took an hour to get to sleep and then I had several short wakenings during the night. However, they did manage to get me into REM sleep. The first time that ever happened in a sleep study. I now have a new machine, a Respironics BiPAP ST. 17/13. I still wake up more tired than when I went to sleep. I will have pulnonary tests and see the doctor next Wednesday.

The only way I can have energy during the day is if I stay awake all night the previous night. This has been my pattern ever sinces I was a kid. I hope there is someone else out there who has had this patern and found a solution