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Unable to use CPAP
#11
(04-03-2013, 03:15 PM)jgjones1972 Wrote: 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!

That advice sounds familiar - now where have I hear that before?Wink

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#12
Quote: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.

And that is what we are doing. We are trying to offer suggestions using what little bit of information we had and the experience we have had ourselves or have assisted others before.

If you have had this for 28yrs and have tried all that you say you have tried, then there's not much else we can offer.

Do not berate us for offering advice you asked for. We do not apologize for providing advice you deem useless.
PaulaO2
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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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#13
(04-03-2013, 04:46 PM)DocWils Wrote:
(04-03-2013, 03:15 PM)jgjones1972 Wrote: 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!

That advice sounds familiar - now where have I hear that before?Wink
http://www.apneaboard.com/forums/Thread-...leep-Apnea

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#14
Dusty, first off let me say that I am sorry you are having so many issues. I think everyone now understands your situation and is trying to help in some little way cause it just hurts to even hear all of this on our end.

The only things I can think of that might help are one exercise that I have actually tried before and one device my cousin uses.

The exercise is to lie down on the bed and then put your head very near the edge of the bed (facing UP), so that your neck is on the edge and your head is hanging off the edge. Then raise your head up ten times in a row twice a day (or more). It strengthens the muscles in the neck and has the side benefit of actually making you look a little younger in the neck.

The gadget that my cousin uses is called a "Neckline Slimmer". They are sold on Amazon. It fits under your chin and has springs that you push down with your chin. My cousin does look younger from using it. Her husband also says she snores less presumably because it makes her neck muscles tighter.

They also make bed contraptions that look like a big piece of cheese that you lie on to keep your head higher than your body. I saw those on Amazon but do not know anyone who has tried one.

Amazon also sells something called "Sleep Apnea Relief" which contains Lobella, Meadowsweet, Thyme, Chamomile, and Cramp Bark. It is supposed to address the cause, not the symptoms, of sleep apea. But with your lung issues I definitely would not take any home remedy like that without specifically discussing it with your doctors. (It is made by Nature's Rite) We thought about buying this a while back but got a sleep study instead.

I sure hope this gets better for you. Keep us posted on your progress.










(04-02-2013, 03:18 PM)Dusty Wrote: 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.

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#15
(04-02-2013, 03:18 PM)Dusty Wrote: Is there anything else that people here have found to be helpful?

There's a musical instrument called the didgeridoo that may help. It tones the muscles in the throat and reduces the occurrence of apnea in some patients. It's said to be difficult to learn to play, but perhaps you can find a place to take lessons.

Sleepster
Apnea Board Moderator
www.ApneaBoard.com


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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#16
(04-03-2013, 07:22 PM)Sleepster Wrote: There's a musical instrument called the didgeridoo that may help. It tones the muscles in the throat and reduces the occurrence of apnea in some patients. It's said to be difficult to learn to play, but perhaps you can find a place to take lessons.

It's Déjà vu Didgeridoo all over again. Thinking-aboutBigwink
SuperSleeper
Apnea Board Administrator
www.ApneaBoard.com


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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#17
(04-03-2013, 07:22 PM)Sleepster Wrote: There's a musical instrument called the didgeridoo that may help. It tones the muscles in the throat and reduces the occurrence of apnea in some patients. It's said to be difficult to learn to play, but perhaps you can find a place to take lessons.

I looked into it. After listening to a few clips of people playing the didgeridoo I decided that listening to someone about to throw up was not music.
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#18
jgjones and shastzi ---

Thanks for the suggestions. I will certainly check them out. I do have a trained singing voice, so the circular respirations thing sounds like something I could do. I do know that, prior to my starting chemo, I did find that I did better sleeping on my side. Finding some way to keep from rolling onto my back might also help.

I know it doesn't seem that way, but I'd try almost anything at this point. (Anything that doesn't involve hooking me up to equipment.)
Sleepster, and everyone else who has contributed to this thread, thanks so very much.
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#19
I think didgeridoo is unlikely to be anything more than a minor help. It's mostly a denial mechanism that will delay dealing with the real problem. Surgery or dental appliances work for some people, but the success rates are low. Same with weight loss.

Sleeping on your side, your stomach, or even in a recliner helps some people. The odds aren't good, but they don't take a lot of effort, time or cost to try.

You can buy a recording oximeter for under $100 and check your own O2 levels during the night. The CMS-50 D+ is pretty good, but be sure it's the D+ model. The CMS-50D does not record. Supplier 19 is a good source.

Tracheotomy works, but it's a bad choice, and I doubt you'll find anyone willing to do it.

You can try a few other things, but if they don't work, your options are basically CPAP or death. Make your choice, but don't pretend that you have another choice.

Say goodbye to your loved ones and buy a prepaid funeral plan.
Get the free SleepyHead software here.
Useful links.
Click here for information on the main alternative to CPAP.
If it's midnight and a DME tells you it's dark outside, go and check it yourself.
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#20
(04-04-2013, 04:58 AM)Dusty Wrote: I know it doesn't seem that way, but I'd try almost anything at this point. (Anything that doesn't involve hooking me up to equipment.)
Sleepster, and everyone else who has contributed to this thread, thanks so very much.
I've read many stories from people who were adamant not to use their CPAP and throw machines in closet or sold it
[Some stories been posted in this thread: http://www.apneaboard.com/forums/Thread-...-Post-Here ]

Only to come back at some years later at worse condition than before and more keen to use CPAP this time around and when they do, their lives and the lives of people dependent on them improves too
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