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[Treatment] Central Sleep Apnea and alternative treatments?
#1
I got diagnosed with central sleep apnea (CSA) and insomnia, for those who do not know what that CSA is, basically my brain, at times, doesn't communicate with the rest of my body and I stop breathing for about 10 to 30 seconds. There's no obstruction. I've always have had problems with sleep, so I'm assuming that my weight has nothing to do with this sense I use to be a slender. I'm also extremely claustrophobic and I can't handle anything covering my mouth and nose, or anything around my neck. It sends me into a major anxiety attack and then I have to be sedated. I can't wear masks, do nasal washes or netty pots, or have anything on my face like a blanket or towel for more than a minute. I opted for medication to help me stay asleep and oxygen therapy with a thin cannulas instead of CPAP. Now my bariatric surgeon will not do my weight loss surgery because I refuse to wear a CPAP mask. My sleep Doc wants me to be on CPAP or a ventilator. My Stats: I stopped breathing 19 times in one hour on my back and my oxygen went down to the high 70's. Is there any treatments out there that can help with CPA that might satisfy my doctor but also take my mental health into account? Thanks Julia
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#2
I know several bariatric surgeons. They are firm on their patients being on CPAP if they have a diagnosis of sleep apnea.
Your PSaO2 nadir of 70% is of concern. And post general anesthesia it presents a high risk.

These surgeons not only have the welfare of the patents in mind; but also their reputations. If they have complications in 1 out 2000 surgeries, they are doing well. If it's 1 in 200, then their peers and prospective patients will frown upon them.

Most of the veterans on this board are familiar with what CSA is. The most effective CPAP machine for CSA is called an ASV. A CPAP machine that is essentially a non invasive ventilator. (No tube down the trachea.)

Since you opted for meds to sleep. Perhaps, working with the psych doc, your anxiety could be managed by meds and perhaps cognitive behavioral therapy.

Keep in mind that sleep meds and some classes of anxiolytics may increase central apnea.

I think there is no option to being on PAP therapy that will satisfy the doctor. I know bariatric surgery workups are extensive; and generally include: Cardiac clearance, Speep Apnea clearance, Psych clearance, and nutritional counseling. Oh, and also an upper Gi series or endoscope.
INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#3
Yeah, you really owe it to your body to let it have a nice, pretty little ASV unit. Not a CPAP, that won't work. But a Resmed Aircurve 10 ASV? You could actually find yourself living a very happy life.

That would leave just the issue of the mask, and your fear thereof. The modern pillows masks, specifically the Resmed P10 are pretty darn non-invasive. Still a problem for you? Yeah, probably. But if you had them give you a P10 that you could just futz with while watching tv, or whatever to get used to it? Would that be a possibility?

I think that is what I would strive for. It might be a struggle for you, but the rewards of a long and happy life lay at the end of the struggle.

So ask your doc to fix you up with a P10 pillows mask just to play with. Hold it, carry it around with you, when you're ready put it on for a minute or two. Keep going until the mask and you become one. Once that's done, you will be well on your way to improved sleep, and with the improved sleep will come improved physical and mental health.

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#4
Hi julrez9,
WELCOME! to the forum.!
The P10 mask is very minimalist so you might not have as much trouble with it as you think.
For Central Sleep Apnea, (CSA,) the machine you need is an Adapt Servo Ventelator, (ASV,) machine to treat that.
Hang in there for more responses to your post and much success to you.
trish6hundred
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#5
I totally understand anxiety. I have pretty severe, but pharmaceutically managed anxiety. You are not alone.
Welcome to the forum!
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#6
(05-20-2015, 07:45 PM)justMongo Wrote: I think there is no option to being on PAP therapy that will satisfy the doctor. I know bariatric surgery workups are extensive; and generally include: Cardiac clearance, Speep Apnea clearance, Psych clearance, and nutritional counseling. Oh, and also an upper Gi series or endoscope.

That is the way the workup should be. Back in the 80's, where I worked, there were several people that had bariatric surgery and they didn't do all of those things. The doc talked to them but didn't do any of the things you mentioned above other than his information on the procedure and small nutritional counseling like if you drink high caloric drinks, you can gain weight or not lose it but nothing detailed. Of course, I think this kind of surgery was new in the 80's (relatively new or maybe it was delayed reaching that area).
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#7
RG is giving you great advice about dealing with anxiety by desensitization. You probably already know that but bears repeating. Can you ask yourself do this for five seconds? And then another five? Not think about a long time. Just this next few seconds.

I carry this on a card in my wallet. Perhaps you too may find some comfort in it? From the book Dune.

"I must not fear.
Fear is the mind-killer.
Fear is the little-death
that brings total
obliteration.
I will face my fear. I will permit it to pass
over me and through
me. And when it has gone past I will turn the inner eye to see its path. Where the fear has gone there will be nothing. Only I will remain."

The other side is from Epictetus. It is not the events in our lives that distress but only our reaction to them.

I also benefit from soto zen meditation. Possibly you also?

Good luck I wish you peace.

I use my PAP machine nightly and I feel great!
Updated: Philips Respironics System One (60 Series)
RemStar BiPAP Auto with Bi-FlexModel 760P -
Rise Time x3 Fixed Bi-Level EPAP 9.0 IPAP 11.5 (cmH2O)
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#8
I don't know how useful this will be, but I saw my sleep doc yesterday and mentioned that, while my AHI is low (less than 3 on average), it is mostly CSA. He said it is likely due to reflux. The brain shuts down breathing when there is a reflux event so that I don't choke. He suggested that I eat no fatty foods in the evening and raise the head of my bed a few inches. I will be complying with his suggestions and take a look at the results over time.
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#9
(05-20-2015, 10:32 PM)Mark Douglas Wrote: I carry this on a card in my wallet. Perhaps you too may find some comfort in it? From the book Dune.

"I must not fear.
Fear is the mind-killer.
Fear is the little-death
that brings total
obliteration.
I will face my fear. I will permit it to pass
over me and through
me. And when it has gone past I will turn the inner eye to see its path. Where the fear has gone there will be nothing. Only I will remain."

Frank Hebert hit the nail on the head with this Bene Gesserit mantra....it is so applicable to so many aspects of our lives, especially anything that causes us anxiety.

Julrez9, I don't know of alternatives, but if you take it low and slow and work towards desensitizing yourself to CPAP, you can get there. R_G is on the right track...start with just getting used to the pillows (they are the minimalist way to start and not that far different from a cannula). Then, work on Mark's "I can wear it for 5 seconds" thing....then try for 10, then 15 and so forth. Once you are more comfortable, you can try them with the machine connected/air flowing and work up some more.

You can do this...just do it one step at a time Smile
INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#10
I'm on an Aircurve 10, ASV machine, for sleep-onset centrals. You can get used to it. My AHI was 0.0 last night. I shut my 5 min ramp off and just went for the pressure. Sure, it's a little scary at first, but for me, it's much better than what I had been going through.

I have a mask battle, but it's not fear of the mask, it's because the thing digs into my face. I can only sleep on my right side or tummy, due to positional vertigo from a head injury. Using a liner now, and might try a buckwheat pillow. If that doesn't work, I am open to trying new masks. I use a FFM.
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