Central Sleep Apnea


#1

I am getting so frustrated trying to find any real information about central sleep apnea. Has anyone else noticed that all the articles out there on apnea really just skirt around this subject and concentrate mostly on Obstructive Sleep Apnea?
I have both. I feel I have a good understanding about the OSA, possible causes and am already sleeping with a CPAP now. I want more information on CSA though. Does anyone have any good leads on that? The ASA is even barely talking about it, and the way I see it, it’s the scarier of the two!
Please, any help or anyone that also has CSA, post some replies and let me know where to get some real answers, not fluff.
(I’m having an MRI on my brain today so yes, I knew I needed that…)

Hope you all slept well~
Savvy


#2

Savvy,

I have central sleep apnea. I agree with you that information on how to deal with it is extremely hard to find. I was fortunate enough to change sleep disorder doctors, from a pulmonologist to a neurologist, who knew how to deal with the CSO.

The major difference between it and obstructive is that a simple CPAP machine will no longer help.

You need a machine that has a different inhaling and exhaling pressure.

The reason is, the change from one pressure to the other jolts the brain and causes it to maintain breathing.

I had obstructive sleep apnea first. After getting nasal and throat surgery, and finding a mask that didn’t leak, I thought every thing was under control.

Then I was diagnosed with severe hypertension. This led me to suspect it was caused by central sleep apnea, because sleep apnea is listed as a major cause of hypertension. I got another sleep study, and it confirmed the central sleep apnea.

Now I have a machine called VEE PAP (sp?). It has solved my sleep apnea problem. I’ve subsequently made life style changes that’ve eliminated the BP meds the doctor put me on,
and restored my BP to normal.

If the mechanical action of the VEE PAP ever ceases to control the central sleep apnea, the next (and maybe final) approach to control this life threatening problem is apparently supplemental oxygen.

I hope this gives you some ideas to work with.

Frank

savvy1 sleep-apnea-cpt6062@lists.careplace.com wrote:


#3

Frank,
Thank you SO much for writing me back! You are the first person I have found besides myself that has both CSA and OSA.
I am worried that the CPAP will not do the trick and wonder why they even put me on it to begin with knowing I have both kinds. I have all sorts of tests and doctors to go see now after seeing a neurologist last Friday.
The thing that I am adamant about is finding out WHY I have this. Perhaps it’s something they can fix? From the limited research we can do, I have found that one thing is true about CSA. Something else, something wrong in your brain, must be causing it. Essentially, this means that the CSA is really just a symptom of another problem. The Neuro and my primary doctor both very much agree and immediately scheduled an MRI for my brain. It was supposed to take place today, but I was called and cancelled because the machine is apparently broken.
I also have many other health issues and we’re trying to find the reasons for all of them and more specifically see if they are related. I have lots of nerve issues and severe ongoing pain throughout various parts in my body including neck, shoulders, hands, lower back and legs. I am getting EMG’s as well as MRI’s done on all of those as well in the next few weeks.

Did you go through any additional testing or MRI’s to see what caused your CSA?

They are also sending me to see an ENT to see what is causing the OSA and if it is a fixable thing such as large adenoids that can easily be removed. I suspect that because the central apnea caused me to rapidly gain more than 70lbs, this is what brought on the obstructive problems.

Any thoughts? Did you gain weight from this as well? Were you able to lose it now that you have the correct machine?

Please write again when you have a chance.

~Savvy


#4

Savvy,

I can’t give you much encouragement about finding a cause of the CSA. My assumption is if that were possible there’d be more medical literature about how to treat it. I’m afraid your best hope will be to find someone (neurologist, pulmonologist, technician, etc) who is proficient at treating the symptoms…like I did. So I hope you have good insurance if you plan to have a lot of expensive tests run.

My neurologist was very pragmatic…which I really liked. She even spurned the expensive overnight sleep study in favor of trial and error adjustments based on using an “auto set” CPAP machine.

One piece of info I did pick up is that CSA can be caused by too much air pressure from the CPAP or VPAP machine. I believe one of the things they do during the overnight sleep study is to increase the air pressure until CSA is induced, then back off on the pressure.

So you may not have CSA if someone finally gets your correct CPAP pressure adjusted properly. The auto set CPAP has a computer chip that gathers data on leaking, mouth breathing, etc. This helps an experienced sleep disorder person to make educated guesses regarding pressure settings. The tricky part is that in some cases the autoset machine thinks you need more pressure, when that adjustment may be doing more harm than good.

I’ll mention one other point that helped me a lot. I started using CPAP in 1995 when the masks were very primitive, and had to be pulled so tight to prevent leaks that the movement of the mask while sleeping really butchered my face. I’ll bet others in the group can relate to that.

What a relief it was when I was introduced to an Activa Mirage mask. You don’t even have to pull the straps tight against your face. The way it’s designed, connecting the air flow to it literally creates a suction that sucks the mask to your face. I have few if any problems with mask leakage. When I’m connected up, I lie virtually motionless when I sleep. I think there’d probably be some leakage if I tossed and turned all night. This mask is so comfortable you barely know it’s on.

I hope this additional info is helpful to you.

Frank

savvy1 sleep-apnea-cpt6062@lists.careplace.com wrote:


#5

I aslo have CSA. They are fairly sure mine is caused by a dead spot on my brain that shows in MRI’s . They think the spot was caused by a high fever in childhood. I was hospitilized a couple of times with fevers above 105. I’ve always had breathing problems. and my lungs often filled with fluids and got infected. The CPAP has helped some of the problems. Since I have several other problems things have been tough this summer. But the CPAP is working great and I’ve lost weight.


#6

Hi, I have severe obstructive apnea, central apneas, and mixed apneas. I was diagnosed with the severe OSA in the later part of the 90’s and I was only 114 pounds so they were in disbelief. I had the throat surgery done (can’t remember, it’s uvo…something) and that did not help me and I’m sorry that I put myself through that. I was just diagnosed with central and mixed apneas this last September to my surprise. They took me off of my cpap, had me on an auto pap for awhile and that helped my heart to quit waking me up all night with heart events. Then they put me on the bilevel machine. Next I was on the Respironics bipap ST, which has a back up rate and is supposed to breathe for me if it does not detect me breathing for about 15 to 20 seconds. I used the Resmed Adapt SV last night for the first time and it’s helped the most out of all of the machines. I’m still trying to understand the difference between the bipap st and the Adapt Sv. Has anyone been through so many machines? I, like you, don’t know why I now have the centrals and mixed. I wonder if it’s from all that pressure (set at 15) for so long and I never tolerated the cpap well? Now, you have me thinking that maybe I need to see a doctor other than my pulmonary doc. The mask that has worked best for me is the comfortfull. Yes, I remember the masks back in the 90’s…that was a nightmare! LOL I have been looking for more info on centrals and machines for centrals, too, but not much success either. I’m glad that you started this thread! Kelly