Breathing ... or not breathing
 

I had my sleep study, actually two different sleep studies. Apparently the first study didn't go so well, which led to the second. I have been diagnosed with central sleep apnea. Not obstructive, central sleep apnea is when the brain doesn't tell the muscles to breath. Causes include medications like opiates. Treatment is with a servo ventilator at night. It is kinda like a CPAP machine except it also does the breathing out too.

There are lots of questions running through my mind. I have been surfing the net trying to get answers. I found some, though I didn't find anything from users of the machine or others with the disorder.

So,
Does anyone else on this forum have central sleep apnea?
If so, what is your treatment and how do you feel about it?
Does it frighten you?
Do you have any trouble giving over your breathing to a machine?
Do you sleep better and wake rested?
Has it improved your CRPS pain in any way?
Is it a miracle cure for CRPS?

A couple months ago I found myself out of breath with the smallest of activities, like walking to the frig or loo etc. I ended up at a doctor who diagnosed me with a form of chronic respiratory disease. He set me up for the first sleep study that concluded with the diagnosis of central sleep apnea. I had sleep apnea before and had the surgery where they worked on my nose and throat. Subsequently I was breathing much better. So much better that I was able to return the CPAP machine.

Now, I have times where I gasp uncontrollably. It is weird and happens when I am awake too. Sometimes it is out loud and gets other peoples attention, which is awkward. I am told that this is because I am either breathing too shallow or have stopped breathing all together. The gasps are my bodies way of saying I need air.

Ideally the servo ventilator will improve my sleeping, which will improve my breathing during the day too. I will be better rested. So then I am thinking ... if I am better rested then my CRPS symptoms will improve too ... right? I can already see myself out on the trail, in the rumba dancer size class, and most importantly playing with my Grandbabies.

Can anybody out there answer my questions or maybe just give some moral support?

Sorry DJ, I have no experience with that kind of problem, but it sounds horrible and I really hope that with the diagnosis you can get some control over it all and feel better about things. Hope the machine isn't too intrusive, but if it gets you some better sleep then chances are you will feel an improvement generally...

Best of luck with this one. Breathing problems are scary stuff :rolleyes:

Bram :grouphug:

I'm sorry to hear you have central apena. this has to be scary. I was recently dx. with obstructive apena. I am still not sure of using the machine. I panicked when I had my 2nd sleep test and they put this on me. I kept waking up and had to pull the mask away from my face. (anxiety got the best of me at times.)

I know your machine will be quite different and so will the mask. Also, I had resistance when breathing out which you will not have. I hope some one can answer your questions. But I would like to think that when you are breathing the right way you will feel more energized, thus feel better.

Good luck and keep us posted.

I havent been diagnosed with sleep apnea but my doctors believe I have it so want me to do a sleep study. I have been diagnosed with sarcoidosis in the lungs and liver. I have found many people with RSd that have Sarcoid as well, just when you say your gasping for air thats what happened to me. The RSd doctors say that because of the RSD we are more prone of getting autoamuine disease such as sarcoid they say thats why I got mine.

Thanks everyone for your responses. I guess central apnea is not as prevelant as I thought. With so many of us on opioids, I thought there may be a few others with the affliction. I have yet to hear back from the Doctor. No surprise. I'll keep you all posted as to what my next steps are in dealing with central sleep apnea. Who knows, maybe I'll start dreaming again.

alaska49,
Sorry to hear about your breathing problem linked to sarcoidosis. I had to look up sarcoidosis. Sounds scary since the tumors take up needed air space in the lungs. I know the shortness of breath is scary for me. The liver involvement is also quite frightening. I hope your sleep study goes well. If you do need a CPAP machine, it does take some getting use to but also helps a lot to push air into the airway. Eventually, I felt better using the CPAP machine.

alt1268,
Sorry to hear about your obstructive apnea. I had obstructive apnea a few years ago. I have since had surgery. The machine does take some getting used to but also is affective at pushing air to keep you breathing. I had similar problems with the mask. Eventually I was able to use it and I felt better after sleeping with it on.