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Giving up for now.
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NickDanger Offline

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Post: #11
RE: Giving up for now.
(09-01-2014 08:24 PM)Daso Wrote:  Is an oral appliance appropriate for your level of OSA?

Fibromyalgia is a risk factor for TMJ. I don't think Deanna's doctors would suggest the mouth appliance.

http://chronicfatigue.about.com/od/whyfmscfsarelinked/a/TMJ.htm
(This post was last modified: 09-02-2014 12:23 AM by NickDanger.)
09-02-2014 12:17 AM
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eviltim Offline

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Post: #12
RE: Giving up for now.
(09-01-2014 05:57 PM)DeannaM Wrote:  It would probably make my excessive daytime sleepiness better, but so does my Nuvigil.

This is a surprising way of thinking to me. I would rather put up with the discomfort of CPAP than take any pharmaceuticals -- of which I'd probably have to take a lot if I had untreated sleep apnea.
09-02-2014 01:04 AM
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me50 Offline

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Post: #13
RE: Giving up for now.
It took me 3 years and a 3rd sleep study to get the right mask. Fortunately, with my 3rd sleep study, about 2 weeks prior to the sleep study, the tech's supervisor cared enough to come to the sleep clinic with about 15 different masks still in their original packages. I told him how much trouble over the past 2 or more years I had with the FFM and so we skipped them and went to nasal pillows and nasal masks. He didn't just give me masks to try, he hooked them up to a CPAP machine at my pressure settings and I tried them that way. When I found one that worked, the supervisor sent me home with the mask and a top of the line chin strap so I had about 2 weeks to adjust to both before the sleep study. As sleep studies go, I slept the longest during this one than I had in any of the prior sleep studies without waking up during the sleep study.

I said all of this to show you that masks can be the hardest part of this and finding the right one can take a lot of time. I had DME techs that didn't listen to me or just didn't care. The most they did was change my cushion size from medium, to large and finally to a small which did help a lot but not enough.

I kept at it because I did NOT want to die and with OSA that goes untreated, especially when a person knows they have it, death is a very real possibility. One day you could wake up dead and not of this earth any more.

The machine and mask and all that it takes to get just the right one is very much worth it for me. I speak from experience because I had a machine back in 1996 or so that I could not adjust to (I didn't have a problem with my mask fortunately) and I stopped treatment. However, I was never told how serious not being treated was. I had a sleep study at a sleep center that ignored me when I kept asking for a blanket because it was beyond freezing in the facility and because of that, I didn't get much sleep. They gave me a prescription at some point, I got a machine they chose for me at some point but I was never told how serious non-treatment was and that I could die without treatment. So, when I could not adjust to the machine, I just quit using it.

I don't so much as think of sleeping without my machine. I have a lot to live for even though we are facing some rough and tough times and battles right now, there is no way I would use that as an excuse to not use my machine. We were out of state for over 2 months and the lodge we were staying at did not have a good setup for me to use the machine and I had to improvise and find something to put the machine on at night and use extension cords, etc., but I did it so I would not die in my sleep from not using the machine and quit breathing.

I can't help but wonder if the medication, etc. that you take for fibromyalgia was easy to get used to and how many different medications or strength of medication, etc. that you went through before finding the perfect combination and you did not give up.

As many said, it is your choice whether you choose a better life by continuing your OSA treatment or potential death by not continuing treatment. I hope that you reconsider your decision.
(This post was last modified: 09-02-2014 04:20 AM by me50.)
09-02-2014 01:34 AM
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readyforsleep Offline

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Posts: 233
Joined: Mar 2014

Machine: Resmed S9 AutoSet for her
Mask Type: Nasal pillows
Mask Make & Model: Swift FX for her
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CPAP Pressure: 14.6-17.4
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Location: Lawrenceburg, Indiana

Post: #14
RE: Giving up for now.
I am so sorry you have had such a tough time with your treatment. For me it has been a life changer. I have been working (fighting) since March to figure out my sweet spot. I am not going to give up. When I have a good night, I can't believe how good I feel. I keep thinking-so this is how normal people feel EVERY DAY! I want more of this!

I wish you would keep fighting...

I too had mask issues, gave up on my DME and ordered from the 30 day free trial supplier. I think I went through 5 masks.


we are routing for you to get back on the cpap rollercoaster/ tsunami...it will eventually calm.

2010 sleep study 63 AHI, 2014 3.0
09-02-2014 06:42 AM
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yaggy_bear Offline

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Post: #15
RE: Giving up for now.
Speaking as someone who has been dealing with this for a couple of years, and has had treatment going for a few weeks, I could not live without my machine now.

I feel a 1000 times better than i did before, and i wouldn't change it for the world..

so far in a few weeks i have had to deal with:

- Severe aerophagia - gas - bloating - sore back - etc
- weight gain as my body adjusts to sleeping right again
- complaints from my partner when my mask leaks and it sounds like a tornado in the bed
- the cost of the equipment itself

I'm coping with it and dealing with it because i feel amazing and alive again. it's a small price to pay to know im healthy and sleeping and giving my body a fighting chance at surviving..

Most people with cancer probably don't like having chemotherapy, but they do it because it's the best thing for them and the people around them, and it's a miracle we even live in this day and age where these machines/treaments are available... I'm sure there are people who decide not to get treatment for things, but im of the belief that if it's available to you take advantage of it!
I'm sure people 100 years ago wish they had some of the technological advancements we have now..

stick with it, finding the right mask is easy. try a full face one. much easier.

good luck with it all.
09-02-2014 07:17 AM
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DeannaM Offline

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Post: #16
RE: Giving up for now.
Dear Friends: Thank you again for the encouraging words. I certainly appreciate the concern. As a follow up, the DME called me today, to discuss my decision. She seemed sympathetic. She told me that there are still different masks to try, but I would have to purchase them myself because she was not allowed to give any more away to me (I tried 3). For us the money is an issue. But as I said before, there is a commitment to this change in life that I am not ready for. Right now, I am being managed well for multiple conditions with medications that are working (fibromyalgia, bursitis in hips, interstitial cystitis, depression and hypothyroid). I deeply respect all of you who have been able to make the commitment. I am not looking for affirmation to for my decision, however, I am going to try alternative therapies at this time. For now. DeannaM.
09-02-2014 07:53 AM
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Terry Offline

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Post: #17
RE: Giving up for now.
(09-02-2014 07:53 AM)DeannaM Wrote:  able to make the commitment. I am not looking for affirmation to for my decision, however, I am going to try alternative therapies at this time. For now. DeannaM.

Contact your doctor and your insurance company.

You're entitled to effective treatment and the DME doesn't get to say "they're not allowed" to give you the equipment required.
09-02-2014 10:26 AM
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Terry Offline

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Post: #18
RE: Giving up for now.
. . . duplicate post
(This post was last modified: 09-02-2014 10:28 AM by Terry.)
09-02-2014 10:27 AM
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retired_guy Offline

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Post: #19
RE: Giving up for now.
Dear everybody,

No one should feel bad about DeannaM's decision to not treat her apnea. This thread will help so many others that we don't even know about. Sure, one person "falls off the wagon," but how many others are there that "teeter" on the brink who will read this thread and make a renewed commitment to the therapy. One person says she wants to quit and what, about 14 others post strong information as to why that's a bad idea? So good comes from all this if only one other person out there reads this and uses the inspiration you have provided to save their life, possibly the life of their family or others as well.

Thanks DeannaM for letting us know of your decision. We regret you will not be taking advantage of the miracle offered you, but we appreciate your willingness to share with us.
09-02-2014 10:32 AM
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nightflight Offline

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Post: #20
RE: Giving up for now.
I don't want to quit, I just want it to work. I'm better, but still tired.
09-02-2014 11:16 AM
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