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Unable to use CPAP
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Dusty Offline

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Post: #1
Unable to use CPAP
Hello. I'm new to this forum, looking for a little advice. My story may be a long one, but I'll try to make it brief.

I was first diagnosed with obstructive sleep apnea about 28 years ago. Since then, I've seen five different sleep doctors, and had a half dozen sleep studies. It's been suggested several times that I use CPAP, but I just am not able to tolerate the machine.

I have an extremely difficult time even taking part in a sleep study. Bear in mind, I have a panic attack just wearing a seat belt in the car. To be hooked up to all of the wires and other equipment for a sleep study is terrifying in the extreme,and I have to be heavily sedated. I have to question the validity of these studies, as I don't feel they're getting a picture of my natural sleep pattern.

Wearing a CPAP mask is just as bad. I was actually prescribed BiPAP, because of my difficulty, but that was no good, either. I've tried multiple masks, from full face masks to small masks to nasal pillows, and even just plain oxygen with a nasal cannula. What happens is that some time after I go to sleep, I take the mask off without even knowing that I have done so. (Now, it's important to know that I did the same thing with my dental retainer when I was 11 years old, and with my wrist braces when I had carpal tunnel syndrome. I don't even like to wear socks to bed.)

After several years of trying different machines and masks, I finally just decided to go it alone. I'm a side-sleeper, and I have learned that if I sleep with two pillows, to keep my neck fairly straight, I do OK. I've learned not to eat too soon before going to bed, and I have a night-time ritual that helps me fall asleep with few problems. My husband tells me that my snoring had gotten a lot better. There were no daytime sleepy spells, and I felt like I was getting a good night's sleep, at least 80% of the time.

Then, last fall I found out that I had uterine cancer. I had a total hysterectomy, and chemotherapy was recommended. In the last few months, my breathing has gotten a lot worse. I wake up at night gasping for air, and have to sit up for about an hour before I can try to lay back down and go back to sleep. This happens several times a night. My O2 sats are good, when this happens, but I really have to work hard to breathe. My husband says I don't snore. When I sleep in a recliner, I sleep fine.

My oncologist referred me to a local sleep doctor. He did a test in his office that showed my lungs were functioning at 45% capacity. But he fixated on my history of sleep apnea, and even though I told him about my problems with sleep studies in the past, talked me into trying a nocturnal oximetry test at home. I took home the machine, and when I went to bed taped it on my finger so I couldn't take it off. I then spent the entire night wide awake, working to fight the urge to rip it off. So, the next night the doctor prescribed an Ativan to help me sleep. It took me 2-3 hours to fall asleep, but I did apparently sleep enough for them to get a reading. And, of course, it showed that I have sleep apnea. (Duh!) The doctor showed me the reading, and it looked almost identical to every sleep study I've ever had. He proceeded to berate me because I wouldn't consider CPAP, telling me that was the only solution. I basically felt totally humiliated, and left his office in tears.

So, now we come finally to my question. Wearing CPAP, or BiPAP, or even oxygen per cannula is something I can't consider. I spent several years trying all of these options, and I just couldn't do it. Surgery is not an option for me. I work as a speech therapist in nursing homes, and I kind of need my soft palate. Losing weight isn't an option. I had my stomach stapled, and that didn't work. I've tried extensively to lose weight, with no success.

Is there anything else that people here have found to be helpful? Any behavioral strategies, medications, alternative remedies, etc.? It may be, too, that once I'm through with my chemotherapy, things will settle down to their former status. My oncologist agrees that this is probably a side effect of the chemo, but there's no guarantee that things will improve. And I would like to get some relief in the meantime.

Thanks in advance for any help.
04-02-2013 03:18 PM
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wojowojo16 Offline

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Post: #2
RE: Unable to use CPAP
You've already answered your own questions.

Options are:

Cpap - you said no
Appliance - you don't seem interested
Surgery - you said no


Maybe lose weight, but you have exhausted your options. I dont mean to be rough on you as this is new to me too but the treatment options are above. Either accept the fact tht you are ill and accept treatment or live life knowing that the stresses the apnea is putting On your body will eventually cause more severe problems ;if they haven't already)
(This post was last modified: 04-02-2013 04:07 PM by wojowojo16.)
04-02-2013 04:05 PM
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PaulaO2 Offline
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Post: #3
RE: Unable to use CPAP
Weight loss doesn't always work. Although it probably will lower the required pressure, more than likely CPAP will still be needed.

Taking the mask off at night is common.

Have you ever tried an oral only mask? It's called the Oracle.

If you have 45% lung capacity during the day sitting up, that's got diddly to do with sleep apnea. Sleep Apnea is not a lung thing. It is a throat thing. For that doctor to not see this? Screw him. (I have other strong words to say about that moron) Go to your oncologist. Sit down with him and honestly talk to him. Tell him what happened with the other doc. Tell him your fears. With that low a low a lung function, your body is not getting the oxygen it needs to heal. He needs to know this. Stress is not helping you to heal either. Is there some sort of patient advocate or counselor at the oncologist office? Someone you can talk to there?

After that, try sitting up during the day, while relaxing, and wearing the mask with the machine on. Not in bed, but sitting up watching television, reading whatever. Take it off if it gets to be too much but put it on as soon as the feeling passes. Keep this up. A half hour here, a half hour there, then longer until you can tolerate it. The idea is to get you and your body used to the sensation of having it on.

They can also add oxygen to your machine at night. Some people can lower their CPAP pressure with the addition of O2.

BUT, the lower pressures are going to make you feel more smothered. You're getting enough air, it just may not feel like it.

PaulaO2
Apnea Board Moderator
www.ApneaBoard.com


Breathe deeply and count to zen.

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.
04-02-2013 04:23 PM
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trish6hundred Offline

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Post: #4
RE: Unable to use CPAP
Hi Dusty,
WELCOME! to the forum.!
What Paula said.
I'm sorry you have had such a rough time and I hope things get better for you.

trish6hundred
04-02-2013 05:13 PM
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Shastzi Offline

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Post: #5
RE: Unable to use CPAP
I must agree with Paula. The other thing that seems to be a conflict is your 45% lung capacity.
Seems to me with that kind of attenuated capacity, any apneas or other teeny things would throw you into serious O2 desaturations. (tired? Dizzy? Feel faint? Difficulty breathing? )

Your fear of medical equipment is not uncommon.
Believe it or not you can get the better of it by desensitization like Paula mentioned.
It means putting all the stuff on and wearing it over and over again each week you add more time to the amount you can tolerate it.

You are in the same boat as the rest of us. No one here WANTS to do this kind of therapy but
we just do it because the alternatives are too horrible to imagine.

So buck up. Hang in there and start practicing.
After a while you'll be able to sleep all night with it on.
Only you can make it so.

Good Luck and may you find the strength within yourself to make it through the training!

Cheers!

"With ordinary talent and extraordinary perseverance, all things are attainable." - Thomas Foxwell Buxton

Cool
04-02-2013 06:52 PM
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Dusty Offline

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Post: #6
RE: Unable to use CPAP
Well, I do understand that I should be using CPAP. I do WANT to use it. The problem is, I've tried it. Not just once, not just twice, but a number of times over 28 years! 28 years! I've tried desensitizing myself to it during the day. I've tried counseling. I've tried desensitization therapy. I don't know how else to say it, it just didn't work. I'm not talking about a mild case of the willies here. I'm talking about an extreme panic reaction. As I said before, I can't even wear a seat belt in the car.

I well know the risks associated with sleep apnea. I put a car in the ditch 15 years ago, and it was a miracle I survived. That was an extremely scary experience, let me tell you, and it would seem that I would run screaming to the nearest sleep center and beg for a machine. I did try it, for a couple of years, after that. No success. But I had a cardiac catheterization not long ago, which showed that my heart is in good shape. I had a brain scan last week that showed everything there was fine. As for my weight, I've done far more damage to my body through attempts to lose weight than the weight itself has done. And I snored when I weighed 117 pounds, anyway.

As for the 45% lung capacity, I did speak to my oncologist. I have had some strange reactions to the chemo, reactions that are not often seen in other people. My husband and I are actually going to be sitting down with him Thursday to discuss terminating treatment, because the side effects are so bad. The doctor actually mentioned "quality of life." We have decided that, if we do stop treatment, we're going to wait a couple of weeks and then consider seeing another lung specialist if it isn't better.

I discovered, several years ago, that my sleep apnea is related to Polycystic Ovarian Syndrome. That's caused by hormonal imbalances in the body. I would have thought that a hysterectomy and menopause would have taken care of that, but the syndrome affects more than just the reproductive system. Maybe who I need to go see is an endocrinologist. Again, let's get the cancer treatment out of the way, first.

I work in the health profession, as a speech pathologist specializing in the treatment of persons with dementia. Often, when a person is unable to benefit from treatment of any kind, we look at compensation. Are there any strategies that the person can use to minimize the effects of the disorder, if the disorder itself cannot be treated? That's what I'm looking for here. I've already noted that sleeping in a recliner, or with my head elevated, has some benefit just because my throat doesn't close when I sleep.

Please, I don't need people to tell me I just have to try harder or longer, or try another mask, or go to a different doctor. I've been at this long enough to know what doesn't work. What I need is ideas for other things to try.
04-03-2013 06:26 AM
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Bompa Offline

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Post: #7
RE: Unable to use CPAP
(04-03-2013 06:26 AM)Dusty Wrote:  Well, I do understand that I should be using CPAP. I do WANT to use it. The problem is, I've tried it. Not just once, not just twice, but a number of times over 28 years! 28 years! I've tried desensitizing myself to it during the day. I've tried counseling. I've tried desensitization therapy. I don't know how else to say it, it just didn't work. I'm not talking about a mild case of the willies here. I'm talking about an extreme panic reaction. As I said before, I can't even wear a seat belt in the car.

I well know the risks associated with sleep apnea. I put a car in the ditch 15 years ago, and it was a miracle I survived. That was an extremely scary experience, let me tell you, and it would seem that I would run screaming to the nearest sleep center and beg for a machine. I did try it, for a couple of years, after that. No success. But I had a cardiac catheterization not long ago, which showed that my heart is in good shape. I had a brain scan last week that showed everything there was fine. As for my weight, I've done far more damage to my body through attempts to lose weight than the weight itself has done. And I snored when I weighed 117 pounds, anyway.

As for the 45% lung capacity, I did speak to my oncologist. I have had some strange reactions to the chemo, reactions that are not often seen in other people. My husband and I are actually going to be sitting down with him Thursday to discuss terminating treatment, because the side effects are so bad. The doctor actually mentioned "quality of life." We have decided that, if we do stop treatment, we're going to wait a couple of weeks and then consider seeing another lung specialist if it isn't better.

I discovered, several years ago, that my sleep apnea is related to Polycystic Ovarian Syndrome. That's caused by hormonal imbalances in the body. I would have thought that a hysterectomy and menopause would have taken care of that, but the syndrome affects more than just the reproductive system. Maybe who I need to go see is an endocrinologist. Again, let's get the cancer treatment out of the way, first.

I work in the health profession, as a speech pathologist specializing in the treatment of persons with dementia. Often, when a person is unable to benefit from treatment of any kind, we look at compensation. Are there any strategies that the person can use to minimize the effects of the disorder, if the disorder itself cannot be treated? That's what I'm looking for here. I've already noted that sleeping in a recliner, or with my head elevated, has some benefit just because my throat doesn't close when I sleep.

Please, I don't need people to tell me I just have to try harder or longer, or try another mask, or go to a different doctor. I've been at this long enough to know what doesn't work. What I need is ideas for other things to try.

I am a chronic pain suffer and until a year ago I had a hard time dealing with it. My doctor recommended a Pain Management Clinic which I attended. They taught us how to deal with pain mindfully and through meditation. At first I thought it was hocus pocus, but after trying meditation I found that I could not only manage my pain better but take care of other situations that came up. Remember that the Clinic did not take the pain away but taught us how to deal with it.
My heart goes out to you.

Take careBigwink

Bompa
04-03-2013 11:08 AM
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Dusty Offline

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Post: #8
RE: Unable to use CPAP
Bompa...

Thank you for responding. My husband is a big believer in meditation, and has on several occasions tried to get me to try it. However, I have found that I am not able to make it work for me. My mind ends up being filled with a lot of negative images, and the whole thing ends up being a very upsetting experience.

Yes, I'd be the first one to say that my mind works in very strange ways. It always has. I wish it was different. Interestingly (or perhaps not), my body also reacts quite negatively, and sometimes severely so, to a number of different medications. I've been hospitalized a couple of times because of it. I guess I'm just odd.
04-03-2013 12:24 PM
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jgjones1972 Offline

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Post: #9
RE: Unable to use CPAP
Hi Dusty

Welcome

I know this sounds strange, but you might want to take some didgeridoo lessons. No joke; consistent didgeridoo playing has been shown to help.

Just google "didgeridoo and obstructive apnea".

It only helps if you learn how to play it properly (circular breathing), which is tricky to learn - most need formal lessons. You may be able to find lessons near you.

Best of luck!
04-03-2013 03:15 PM
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Shastzi Offline

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Post: #10
RE: Unable to use CPAP
The only other thing I can suggest is buy a small backpack and stuff 3 tubes of tennis balls into it.
(do not remove them from their tubular containers)
Wear that every night when you sleep.
It makes you unable to sleep on your back so you must sleep on one side or the other.
That will minimize whatever apnea issues you have and that's about as good as you can get without some kind of CPAP based therapy.

Best wishes!

Peace, Love and Carrots.

"With ordinary talent and extraordinary perseverance, all things are attainable." - Thomas Foxwell Buxton

Cool
04-03-2013 04:02 PM
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