Joined: Dec 2012
Machine: ResMed S9 Elite
Mask Type: Nasal mask
Mask Make & Model: ResMed Mirage FX
Humidifier: ResMed H5i
CPAP Pressure: 8
CPAP Software: SleepyHead
Location: Atlanta, Georgia, USA
RE: Unable to use CPAP
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.