Especially for newly diagnosed - Dealing with Change

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
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idamtnboy
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Re: Especially for newly diagnosed - Dealing with Change

Post by idamtnboy » Tue Jul 12, 2011 8:20 pm

Dojers wrote:
ameriken wrote:
The emotional phases we go through are shock, denial, depression, and acceptance.
Hi everyone, I'm brand new to this forum as well as a mask and machine. Though, I must be strange because I did not experience the above phases, I jumped right to acceptance. When I got the diagnosis, I was relieved. My wife and I were initially worried that I might have alzheimers or some other kind of irreversible and untreatable illness.
Whew - I was afraid I was unusual in that I didn't experience any of the symptoms either but I think this is a good post - and I've bookmarked it so when I come up on someone who is new to SA I can send 'em to that writing. I'm a Born-Again Believer so I really appreciated the write-up myself.

But I was scared that I was "weird" (well, I am but that's beside the point LOL ) so it's nice to know I'm not the only one who went to immediate acceptance. It made me feel like maybe I could finally start sleeping without fear of suffocating which I had a fear of since I was small and as far as I know, since birth. And I'm hoping that at some point I'll be able to drop the sleeping pills (which I have already but I still don't sleep well) permanently.
ameriken and Dojers,
I'm glad you were able to accept the CPAP solution so readily. I believe I wrote in the paper that we will experience the four phases in varying degrees, some more intently than others, meaning both people and the phases. So in that context I'm not in a position to say your experience of the first three phases wasn't at or near zero. I really believe though, if you look back through the entire process you went through, even well before you knew sleep apnea and CPAP were existent, you will find that you did experience those emotions in some fashion or another somewhere along the way. But then again, maybe not.

On the other hand consider this. You may have unknowingly experienced some depression during the time before your diagnosis, albeit fairly mild or more in the sense of questioning why you had lack of energy or were always so sleepy, or whatever. Then when you got the diagnosis and the answer that a CPAP would 'fix' the problem I'll bet you experienced at least some mild and very pleasant shock. The sudden 'aha' moment may itself have been a bit of a shock in a good sense.

All this is to say that whatever and however you experienced your emotions, you are OK. We all go through this experience in a different way, and in our own way. It may be an interesting exercise to sit back and review the last several months, or years, and think about what kind of emotions you went through along the way. You may just surprise yourself at realizing what all did happen.

Anyway, good luck in your CPAP venture, and God bless. And in whatever way my paper helped, I am grateful. Knowing it has helped you, and others, makes it quite worthwhile having taken the time to write it. Your kind words make me feel good. Thank you.

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Morgan

Re: Especially for newly diagnosed - Dealing with Change

Post by Morgan » Thu Jul 14, 2011 4:26 pm

idamtnboy - Well written.

I just (yesterday) got my severe sleep apnea diagnosis, going in tonight for a CPAP titration. The sleep center called two days after my study (I had a scheduled appointment in a week!), asking if I could come in _that day_, as I showed something like 80 episodes/hour.

Not happy, not dealing particularly well, but your well written article is very appreciated. Gah...

RipVW
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Re: Especially for newly diagnosed - Dealing with Change

Post by RipVW » Sat Jul 16, 2011 2:12 pm

So great that you shared this, idamtnboy!

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Check out my chinstrap--> http://cpapchinstraps.com
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melissainfo
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Re: Especially for newly diagnosed - Dealing with Change

Post by melissainfo » Mon Jul 25, 2011 6:33 pm

I Have had my c-pap machine since January,and It was pretty difficult at first, maybe 2 weeks then I started to get use to it pretty well. I am very forunate that my S.O> is a sound sleeper and was not bothered at all. And to my surprise and I am sure every body else the machine is not loud at all. I found the one thing I would do is take it off and not know it, and according to my insurance I have to wear it 4 hours a night. I would wake up not knowing how long I had it off, thinking oh crab I hope I did not waste the whole night not wearing it. I feel with commitment and a great support system you can do this and also you will feel better.It won't be over night but you will notice you have more energy, have less daytime sleepiness, and your mood improves.

jewelboxmom
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Re: Especially for newly diagnosed - Dealing with Change

Post by jewelboxmom » Mon Aug 15, 2011 5:33 pm

I A have Never been on a forum before for anything..... Have been reading all of these post for three nights. I got my cpap machine today and will be using it for the first time tonight.. I am a very active person and have had fibromyalgia for years... and so many other things added through the years... now I am to the point of exhaustion!!!! I hate going to bed due to the fact i wake up more tired than when I went to bed. After the last three months and seeing my doctor numerous times and treating me for so many things.. I was about to give up...they did a sleep study and even though my numbers were not alarming... they told me that i still had an issue with my oxygen levels at night and I stop breathing several times.
This is all new to me and so much of a repeat of what so many have already posted... but I am very optimistic using this!! IF THIS HELPS ME.. I WILL SHOUT FOR JOY!!!!!! It has been so hard for me to get my weight off due to NO energy whatsoever. I need to lose about 40lbs. Feel so awful.. i run my own business and so many are making me aware of changes about myself and daily habits that I have not been aware of. Thank you all for taking the time to post.... not sure how to talk the talk yet, as far as numbers on the cpap... but had my hour education on it today... wearing the full face mask and air pressure is only at a 7 with humidifier added. Got butterflies just talking about.. I guess I am expecting a change SOON!!

roseyd
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Re: Especially for newly diagnosed - Dealing with Change

Post by roseyd » Fri Aug 19, 2011 8:55 am

That article was exactly what I needed. Well done and thank you! Thank you so very much.

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Tabanos
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Re: Especially for newly diagnosed - Dealing with Change

Post by Tabanos » Thu Aug 25, 2011 7:24 am

I asked my Dr. for my sleep study. I'm diabetic and my blood glucose was always around 250 in the morning (normal is 70-140). I had reached the point where I was being forced to start insulin. That was significantly more scary to me than the possiblity of using a cpap and wearing headgear. I had read that snoring and sleep apnea had a profound affect on blood pressure and blood glucose. As soon as I told my Dr. that I stopped breathing at night and snored heavily since I was a child, he said I needed to go for a study. I went for the 1st study on 8/9/11, the 2nd on 8/11/11, and picked up my equipment on 8/18/11. I feel foolish putting the mask on at night, but it's worth it to see that 115 on my meter in the morning. I'm still tired alot, but there are other issues contributing to that. I wore that mask all night the 1st night and every night since. I went into this accepting that I was going to need it and wanting to do it.

xanm
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Re: Especially for newly diagnosed - Dealing with Change

Post by xanm » Wed Aug 31, 2011 1:37 am

I started using my cpap machine 8 months ago and it seriously changed my life. When I was younger I would always feel extremely tired but I eventually convinced myself that what I was experiencing was normal and that's just how everyone feels. Boy was I horribly wrong. It was exhausting to sit through a whole day of school feeling like I had gotten 4 hours of sleep everyday.

This continued until when I was 20 years old when my girlfriend told me how I would have lots of trouble breathing in my sleep to the point where it would scare her. A few months later I went for a sleep study and learned that I indeed had sleep apnea. Ever since I started using my cpap machine I noticed an INCREDIBLE difference in my energy level throughout the day. Before I would have a strong urge to take naps in the afternoon but now I can go the whole day feeling fairly alert without taking naps. It's also been much easier managing my college courses and having the energy to do other things like exercise and hangout with friends when I would normally be too tired to do anything.

I think what bothers me most having learned about my sleep disorder is that I feel cheated. I had lived my life until now feeling horrible everyday but it had gotten to the point where I accepted it as something I couldn't change. This probably is due to the lack of public knowledge about sleep apnea. The clues were definitely there but I just never put the pieces together. I would mention to my doctor that I snore VERY loud and he would always comment on how VERY large my tonsils are but NEVER ONCE did he suggest that maybe I had a sleep disorder.

It's also sad when I realize that I remember barely anything from my childhood, whereas many others can recall way more about their own past. Sleep apnea has taken a pretty big toll on my long term memory. I think they say that deep REM sleep is where memories are cemented in your brain, so it makes sense since for much of my life I didn't ever have quality sleep.

Even so, I find it very easy to cope with this change. I'm 21 now and I feel very grateful to have learned about my diagnosis when I did because i feel SO MUCH better everyday. I don't feel embarrassed about it because the public's perception of it really doesn't matter to me. All I know is it greatly improves the quality of my life and if someone has a problem with it there's not really anything I can do about it. I would never want to go back to how I was feeling before. And I always remember that things could be worse. I can't find any reason to stress about something that HELPS me. In comparison to watching my dad struggle with Alzheimer's for over 5 years, my sleep apnea is the last thing I will ever be worrying about.

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Katagal
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Re: Especially for newly diagnosed - Dealing with Change

Post by Katagal » Sun Sep 04, 2011 5:42 pm

I am glad I have found this forum, when I first had my sleep study done I really thought I would not be found to be suffering OSA, wow what a shock to the system when I learned that I have a very severe case of OSA, one of the worst they had seen at my sleep study clinic - my AHI index showed a 120.9 per hour, the equivalent of being disturbed every 30 seconds. I begrudgingly got my CPAP machine and eyed it with loathing but accepted that this is the only option if I didn't want to suffer the consequences of OSA on my health. I have been using it for 3 weeks and have regular check ups at my provider to check on my progress and I have had 2 good sleep according to the data download from the CPAP machine so there is hope. I am feeling brighter and more cheerful and haven't fallen asleep at work for the past 3 weeks which is a big improvement. I am a single female and feel that I will be single for the rest of my life now that I have "Darth" as my permanent bedtime companion, but I am trying very hard to be positive about potential future relationships, one day at a time I guess.

Cheers Katagal
Brisbane Queensland, Australia

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cherylann
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Re: Especially for newly diagnosed - Dealing with Change

Post by cherylann » Sun Sep 04, 2011 11:31 pm

1

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Kody
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Re: Especially for newly diagnosed - Dealing with Change

Post by Kody » Mon Sep 05, 2011 11:58 pm

Great article thank you for posting it.

I knew there was something wrong with me for being so tired and dragging all the time. My Dr. had me take a sleep test and was diagnosed with Moderate Sleep Apnea. That made sense to me and I accepted the fact all though of course I was not over joyed about it either. My Wife also had a mild case and had been using a machine for a month prior so that part helped a lot, I joked with her I just didn't want her to feel left out. However I got surprised, it really hit me kind of hard right after leaving the facility for the first time with my BiPAP Machine to take home. Being 52 (but feeling much older than that); I felt like I must really be an old man now, and my youth is really gone for good. I knew better though from reading all about it, that it's not an Old Man thing, it can hit anyone at any time. As a matter of fact I remembered times when I would jump out of bed gasping for air when I was in my 30's, not know what was happening to me at the time. Being so tired and feeling so lousy all the time I knew this would help me go back to being me. It's only been a couple months now but I feel SO much better, and have accepted the fact that if this is what I need to do to stay healthy, this is what I will do no matter what.

Thanks again for the well written article, I think most of us do go through the stages in one way or another.
Complex Sleep Apnea

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idamtnboy
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Re: Especially for newly diagnosed - Dealing with Change

Post by idamtnboy » Tue Sep 06, 2011 10:27 pm

Thank you to everyone who has posted in the past several weeks. I don't want this thread to get bogged down with a lot of back-and-forth commentary so I refrain from acknowledging each post, but I do read them. The fact that you have all been helped in some degree from what I wrote is very encouraging and heartening, and makes me glad I shared it. Keep the faith, stick with it, struggle through the variations of the treatment until you find what works best for you, and you will find lifelong heart lifting benefits.

If any of you have questions and wish to engage in extended discussions about your specific situations, or just want to share your experiences and thoughts in greater depth, just start a new thread topic thread. You are way more than welcome to do so. That way you can engage in the back-and-forth exchanges that make being here so rewarding.

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Caroline Gaibel
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Re: Especially for newly diagnosed - Dealing with Change

Post by Caroline Gaibel » Mon Sep 12, 2011 8:59 am

Hello Everyone,
I am new to Forums and this community. I went through infertility treatments for 7 years to create my family which gave me a battling spirit to never give up. When I was diagnosed with severe sleep apnea 2 years ago, many of the same reactions re-surfaced. I saw how I had to listen to my inner voice to reassure me to keep on going until I find a good solution, to believe in myself that I will find the answer even if doctors are frustrating and slowing down my path and to re-connect with the power of humor to find a comical side to this situation. I have tried a multitude of paths to solve my sleep issues as the CPAP masks and oral appliance never seemed to work for me and I eventually moved in the surgical direction. This journey has been so crazy that I decided to write a book about it to help other people find their solution and add a comical twist. I'd like to share the first 2 chapters at http://sleepapneasecrets.info/ and hear your feedback.
Wishing us all the sleep we deserve, Caroline
Caroline Gaibel is finally overcoming sleep apnea after 2 years of constant experiment. She tells her story with lots of laughs at http://sleepapneasecrets.info/

Milliek

Re: Especially for newly diagnosed - Dealing with Change

Post by Milliek » Thu Sep 29, 2011 6:07 pm

I just finished my sleep study, and will get my CPAC hopefully Monday or Tuesday. I have been having problems sleeping for about 20 years and wondered why the doctors never had me do a sleep study, one was a heart doctor with do you have any problems sign on his wall. Well changed Heart doctors so I would have one that would be at the hospital where I would be taken if I had a heart attack. She did lots of test and order the sleep study. I hope I will feel better, and not so tired. Was surprise it could help with depressions when reading the posting here. I hope it will help, Lost 2 sons in the last 2 years, they passed 6 months apart, and have suffered depression very badly. Have been so tired, and no energy, hope this machine will help with some of the problems. I think I need to ask for a copy of my sleep study so I understand what it said, as all I know know is I stop 68 times and some thing about 80%. I thought it was 68 times during the night, now I guess they were saying 68 times an hour?? Will let you know how I do with the machine when I receive it. Looking forward to a good night sleep, and not being so tired.

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icecremegrl
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Re: Especially for newly diagnosed - Dealing with Change

Post by icecremegrl » Wed Oct 19, 2011 6:57 pm

Just joined today...wow, what a great online resource I'm newly diagnosed & still coming to grips with it, so such a comfort to know how many others out there have already been through it. Will be a regular visitor.