Central apnea

[Knabino]

Do any of you have central sleep apnoea, i.e. not from obstruction?

[Papit]

Yes, almost all of my apnea is Central apnea, but I wonder whether most of it is bogus. OS was the main part of my apnea in my lab tests and I was diagnosed with "severe obstructive" apnea. CPAP handily reduced my OS -- big time. Now OS is running at 10% of total AHI and CA is running at 90% of it. Some of it occurs just before arising in the morning. Not sure the rest are real centrals. I often think they're bogus central detections.

[Mr Bill]

Yes, find my first post.

[Papit]

" . . . almost all of my apnea is Central apnea . . . OS was the main part of my apnea in my lab tests . . . Now OS is running at 10% of total AHI and CA is running at 90% of it. . . . " (Nine out of the last 13 nights since pressure was reduced from 8 to 7 cmH2O.)

"Yes, find my first post."

Wow.
Wow!
I read it. (See below). Thank you so much, Bill, for posting here in response to mine. As we, and presumably some others here, apparently have the relatively rare symptom of overwhelming or dominant Central Apnea, your post has done us a good service. If our "dominant CA" diagnosis is correct, it is such an anomaly that I understand now why no one jumped in to comment on this thread or earlier posts even though I presented the detail graphs, not even our most active contributors. I guess it had us all stumped.

I'm wondering now how to proceed. Sure, I'll bring my pulse-ox and CPAP graphs to the doc. In the meantime, I'd sure be interested in various ideas. Hmm. Maybe I should change mode from CPAP to AutoSet on my S9 AutoSet machine? My pressure has been at 8 cm for my first 3 1/2 months and adjusted down by the doc to 7 two weeks ago. So I'm thinking of setting 7 as Low and perhaps 11 as the High. Don't know what else to do. Am too new at this.

Like you, I also have chronic GERD. And persistent annoying nasal drip during the day. And I've been clearing my throat throughout the day for at least a couple years now. Two weeks ago I elevated the head of the bed by 5". So far I'm seeing only slight improvement if any. Over the past months I've seen ENT, pulmonary, allergist, hemotologist, rheumatologist and cardio doctors to diagnose the throat clearing and nasal drip. (My gastro doc once told me my throat clearing was nothing so I've been slow to return.) All the above docs but one gave me a clean bill of health. No allergies at all after tests with 26 allergens. No blood problems. Good lung function and no asthma detected. Stress and several other cardio tests were all good. I tested positive though for polymyalgic rheumatica (fatigue and inflammation in both shoulders and both hips about three months ago). Am being treated for that with prednisone and now weaning off of it with a month to go.

Thanks again, Bill. --papit
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Below by Mr Bill on Sat Feb 19, 2011 3:24 am

Hello all, I found this bulletin board useful when I was trying to make sense of my sleep apnea and I've decided to join.
I realized in July of 2010 that I was not sleeping. It was freaking hot summer, humid, and I started sleeping out on the couch on my back and then eventually sitting up because I felt like I was not breathing. I kept waking up realizing that I had not been breathing and it did not feel to me like I had been making any effort to breath. I decided I would bring it up with my Doctor at my annual physical and ordered a pulse oximeter from Amazon. Well, my pulse oximeter data showed alternating one hour of good oxygenation then an hour of ~40 second pulses down into the 70% and as low as 60% oxygen saturation with synchronized heart rate swings. So, my doctor looks at this and says classic sleep apnea and you have just the body type for it. I thought he meant I was fat, but I found out later from a tech, that he was referring to my 18-19 inch neck. I told my doctor I was sure I had central sleep apnea and he scoffed. Its about 5pm on a friday 9/19/10 and he turns me over to his physicians assistant be scheduled for a sleep study. He is a very upbeat guy and said he has a ton of people on CPAP's and soon I would be right as rain. The physicians assistant calls the sleep lab and the next available slot is over a month away. I am desperate for sleep at this point and so I ask if there is possibly a cancellation list. She says sure, do I want to be on it? She does some typing and then says, can you be there tonight? Yippee!

The sleep lab here is in the Mariott Residence. Its very nice, I get the complete wiring up chest and belly bands, several nasal cannula, microphones, cameras, leg electrodes, heart, head, face, electrodes pulse oximeter and the whole works, and we start me trying to sleep. After a few hours he comes in and tells me he know what is wrong but we have to try this nasal mask and attempt to fit me for CPAP or BIPAP even though he is sure I will have to have something called an ASV. I am like h3ll no! but give me a few minutes, let me put it on loosely and get used to I wearing something that looks like it will suffocate me in my sleep. He tells me its always the big guys who are the ones to react this way. He also tells me then its my neck size that makes me the typical CPAP candidate. I have mild asthma and have become sensitive to confined spaces, which make me fear I may not be able to breath. So we strap on and try all the settings. After hours of sleeplessness. He comes back in and tells me the diagnosis. I have profound, severe, complex, sleep apnea. I would need to come back for a second sleep study to fit me for an ASV.

During this first study, there was an observation period of 4.5 hours during which I actually only got 75 minutes of no REM sleep (24% sleep efficiency). I was having a respiratory disturbance index of 76 events per hour and apnea/hyponea index of 67.7 events per hour. 59 of the 84 events during actual sleep were central events and persisted during the titration period between 7cm (51 CA/hr) and 10cm (68 CA/hr) of CPAP. Lowest oxygen saturation during that first study was 81%. The next sleep study was scheduled for 11/12/10, so I had a couple months to survive till then. This was a low point for me. I was super tired and not at all sure there was any hope. Now, I have no idea if my little wrist pulse oximeter was accurate and I did not wear it that night. But at home I was seeing desaturation down to less than 60%.

So, I found a couple mechanisms for coping while I waited for the next sleep study. I skimmed many papers linked off the wikipedia site for sleep apnea. and found one that said that central events decreased if pulmonary insufficiency was induced. So, if I was reading it correctly, what I needed to do was scrunch up my lungs to decrease the breathing volume and I might actually breath on my own due to greater accumulation of CO2 in the smaller lung volume. I was wearing my pulse oximeter each night. I did this scrunching thing sleeping upright or on my side or leaning upright against a pile of pillows and scrunching to reduce my ability to take a breath. Sure enough it worked, instead of totally stopping breathing when I fell asleep I breathed shallowly and rapidly and my oxygen saturation stayed above roughly 70% and mostly above 80%. So, that makes me wonder. Before I started sleeping on my back to combat GERD, I slept on my stomach which if not for heartburn may have restricted my breathing. Maybe thats why this central apnea problem had not previously been apparent.

So the next sleep study with the ASV was 11/12/10. This time, I show the tech my pulse oximeter data and he opines that it looks like REM specific sleep apnea which is typically obstructive rather than central. Its a trying night, he felt we had to try titration with oxygen first. This was because I brought along a sleep study from my mother (done in that lab a year before) which showed that she also had central apneas and that an oxygen cannula was sufficient to fix her problem. He said we had to spend the first part of the night trying oxygen. I get all wired again and this time I brought a camera so I could get a picture of at least the wiring job. I was praying at that point that a simple oxygen cannula would be all I needed. But after a couple hours the tech comes back in and tells me there is no setting that does not make it worse.

So, its mask on and try try to fall asleep for the second half of the night using the ASV. So uncomfortable, and the ASV kept waking me up as it tried to learn my pattern. It would get ahead of me or fall behind me and finally it began to gently puff air just as I stopped breathing but without waking me up. So, in the wee hours of the morning, I finally fell fully asleep. The tech was elated, he got 1.5 hours of data, including REM sleep, which he needed to be able to make the final diagnosis. I can't tell you how profoundly good I felt for the next whole week. Um, I don't know much about stages of sleep but 26% was stage N1, 28% was stage N2, 36% was stage N3, and 10% was stage REM. That was more rest that I had gotten all fall! The tech apologized for being excited about me but said not only is central sleep apnea rare but I seem to have a rare response he said the brainwaves showed I have full arousal from each central event and that they become worst during rem sleep. He said most people are unaware they are having central events But that because I was having this arousal after each event, was not surprising that I was aware I had not been attempting to breath. He tells me that my apparent good pulse oximeter data is the reverse of what a doctor would think looking at it. When I have good oxygenation and heart rate, I was lying there awake, each time I fall into rem sleep, the apneas start and they are almost all central events.

The tech was puzzled about why I should be developing sleep apnea so suddenly in my 50's and asked if I had made any lifestyle changes. Well, as it happens, I suffered from this little cough all the time and worse when I was tired for at least 25 years and even back when my 5'11" frame only had 170 pounds on it. I got diagnosed with asthma in 1994 and nothing seemed to be able to stop this coughing when I was tired. Now, I was not particularly a snorer and preferred to sleep on my stomach. In May of 2008 my nephew had been getting migraines and crazy asthma like symptoms and he was not at all chubby. When they did an allergy panel on him, he was not allergic to anything! The Dr said it was GERD. I ticked off the symptoms and in a blinding Mentat moment realized these were mine. That same day, I bought three 2"x6"x4' boards and stacked them under the head of my bed to elevate just the head of my bed by 6 inches and I made myself sleep on my back instead of my stomach. After three days my heartburn and my asthma symptoms nearly disappeared!. I no longer have a sinus drainage problem. Apparently the vagus nerve gets stimulated by GERD and in turn it switches on your sinuses which give you allergy symptoms or make mild asthma worse. But interestingly, at the end of the summer, in October I suddenly became nearly sleepless for a couple months and jumped from 235 to 255 pounds then it abated. Then this all came back in spades in July of 2010 perhaps because of the high temperature and humidity (we have a swamp cooler). Personally, I think these events are related. The sleep tech said I might have never had obstructive apnea before because I was sleeping on my stomach and then when I started sleeping on my back, I started getting obstructive apnea. When this apnea started in July my weight again went up and has peaked at just over 265.

I got my ASV on 11/19/10 and its been interesting adapting. My unit is set wide open with the exception that after a few weeks of having problems first getting asleep, we decided to add a back up rate of 8 breaths per minute (an initial attempt of 12 was too high and the unit was pounding me as I tried to drop off to sleep). I seem to be doing pretty well now with min EPAP setting of 6, 90% of EPAP at 7.0. Min Pressure support is 3 and average pressure support is 4.1. Those settings limit my AHI's to around 1-3/hour. I can always tell on the pulse oximeter data if I take the mask off while asleep. The unit prefers to have me breath very quickly 17-18 bpm with minute volumes of 8-9L/min The really cool news is that my morning blood pressure had steadily dropped from 150-160 over 100-110 down to under 120 over under 80 and my pulse had dropped from mid 80's down into the low 70's. So far, my average hours per night are only 5 but I am working on getting more long nights of sleep. I am still waiting for my weight to begin dropping. It has dropped down from a peak of 264 (gasp!) to 258 over the last two weeks, I hope it becomes a trend, the Dr says there is a very good chance I will loose weight rapidly.

Costs so far, two $2500 sleep studies, two $600 sleep interpretations, But after insurance juggling, those costs became $4000 out of pocket.
$8750 for the ASV unit which I realize can be had on line for $5800 but again my insurance company prefers to use a provider and rent the unit so my cost after out of pocket is $121/month.

6/22/11 I just learned my DME was "renting" me this unit assuming my insurance was covering 70%. Heck no says my insurance and now I find the true "rental cost" is $467/month! I called my insurance provider and noted that I had nearly met my $5000 deductible in 2010 when they decided to "rent" my ASV presumably to avoid paying for it. They said "we would never do that" and told me to tell my DME to re submit the entire cost as of the day I got my ASV in 2010. So, now it should be mostly paid for. Yippie! I certainly cannot afford $467 a month for the ASV, $100 a month for my asthma and blood pressure RX, and $320 a month for my insurance!

I've added or corrected a few details to this post as I recalled them.

[Mr Bill]

Are you sleeping on your back? That's the way to help GERD in conjunction with elevating the head of your bed. Belly or side sleeping lets that stomach acid keep irritating the vagus nerve.

[Mr Bill]

Best to make that a link, because I do very occasionally update the info as it becomes available.

[avi123]

More than twenty years ago I had problems with GERD and raised the bed by the headboard, avoided fried food and used Tums. Ten 10 years ago I was diagnosed with a Barrett Esophagus and started to take Prilosec. In my case, I don't see a connection between the above and my obstructive sleep apnea which started a year ago.

Before checking this post I replied to Pepit's post suggesting to try a different nasal mask, but could it be something else which is caused be GERD?

Here is a long blog on it:

http://www.medhelp.org/posts/Gastroente ... how/459498

[JohnBFisher]

Do any of you have central sleep apnoea, i.e. not from obstruction?

Yup. My central sleep apnea arises from a degenerative neurological condition that impacts my cerebellum and brain stem. Unfortunately, central apnea is a fairly common issue, since breathing is controlled in the brain stem. I've been using an ASV unit for a couple years and LOVE it. Without ASV therapy, I would almost certainly need a ventilator at night.