New Beginnings are terrifying!

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
Rebamom
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New Beginnings are terrifying!

Post by Rebamom » Sat Mar 10, 2018 5:41 pm

First I want to say thank you to all that have posted. I was diagnosed with severe sleep apnea 10 months ago (May 2017) and was told I would need a Cpap. I waited and waited and at the beginning of February received a call from the place with the machine. Of course I said No, if it took that long, how serious could it be? I sent a note to the clinic that did the sleep study basically stating the same and received a call a week later telling me how serious my case was. They sent the order to a new company and I received a call next day.

So now my anxiety is in complete and total overload, chest pains from the stress so I called the nurse again who tried to reassure me. I have so many of the same fears that I've read here - but at my age (58) maybe a little tougher to overcome. Old habits do die hard.

Fear #1 - I've set my mind so I can do this to "It is better to die old (hopefully age 100) and alone then die young and happy". I do have an ongoing long distant relationship for ten years, but because of the distance his finding out probably won't happen.

Fear #2 - Can this really help me? I do not sleep whole nights and probably never will. My job calls all hours of the day and night as well as I am a caretaker for 3 older members of the family. Not uncommon to have to wake up and run out for a bit. From all I've read, this Cpap machine working is predicated on getting a certain number hours of sleep per night.

Fear #3 - I am a very active sleeper, by choice actually. I have a strong fear that I will get tangled up in this hose and choke myself to death. Actually for the home study that I started with, I did wake up with the hose around my neck and I was terrified.

I'm determined to make the most of this to the best of my ability and work around the many obstacles in my life that could interfere, but stress and anxiety seem to be the only thing I see for a while.

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LSAT
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Re: New Beginnings are terrifying!

Post by LSAT » Sat Mar 10, 2018 5:50 pm

Much of CPAP success is base on a positive attitude...You sound like you already have a negative attitude toward this therapy and are thinking of all the reasons this won't work. If you have a "serious" case, you are stopping your breathing over 30X per hour.....that's over 200 times during the night. Think about how much healthier you will be with successful therapy. Think++++++.

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Rebamom
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Re: New Beginnings are terrifying!

Post by Rebamom » Sat Mar 10, 2018 6:05 pm

Thanks LSAT for your thoughts. I am trying to be positive - but the fact don't change - my job will wake me, older folk need medical attention in the night - these are not things I can change. Waking up with that hose around my neck WAS terrifying so how will it not happen again?

I am the most positive person in the world - but I am plain scared! Scared to admit my body doesn't function properly, scared that if I don't find a way to get past my fears I could die, scared of the whole darn thing. And just think I don't get the machine for a couple more days.

The negative person would not even try - I am willing to try but I have the limitations mentioned above - they are just a fact of life like accepting that Cpap may also be a way of life. My concern/question is can it still work?

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Pugsy
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Re: New Beginnings are terrifying!

Post by Pugsy » Sat Mar 10, 2018 6:19 pm

Rebamom wrote:
Sat Mar 10, 2018 6:05 pm
Waking up with that hose around my neck WAS terrifying so how will it not happen again?
That little hurdle will be easy to jump over.
You get a hose management system to keep the hose up and off your head so you can't try to strangle yourself with it.
You can make them or buy them. Easy fix.

Is your panic coming from just having the titration sleep study where they put a mask on you and tried to figure out optimal pressure to use?

I am willing to bet that you won't have one question or problem that hasn't been met and covered and eliminated.
We just have to sort through them.
If your sleep quality isn't perfect because of job or family life...we deal with it as best we can.
I was just a little younger than you when I was diagnosed...you will get past all this...and how...one step at a time.

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Rebamom
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Re: New Beginnings are terrifying!

Post by Rebamom » Sat Mar 10, 2018 6:33 pm

Thank you Pugsy.

First of all I had the sleep titration May of 2017 when they were supposed to order the machine. I really assumed I didn't get it because it took me a bit to pay off the bill. The sleep titration was a disaster and I had to go home and sleep for about 4 hours I was so tired after. I had tried to tell them we should reschedule, I wasn't feeling well and had been through a major crisis the day before so I was over stressed and anxious going in. Plus no one had told me ahead of time about the mask and wires - I have extreme difficulty having anything touch me when I sleep. Enough said - I got through it, went home, slept and off to work.

I would love to know more about the hose management system - especially do it yourself.

My fears I think stem more from not knowing why this is happening. What did I do to put myself in this position and how can I fix it. I love to fix things. If it means losing weight, I will. If it means quit smoking - I will. I am just looking for some type of "hope" that says I am not doomed to be "broke" forever. Hope trumps Fear every day of the week!

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Pugsy
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Re: New Beginnings are terrifying!

Post by Pugsy » Sat Mar 10, 2018 7:09 pm

I can tell you why it happened to me...it wasn't weight (I was a skinny ass little thing)...for me it was a side gift from Mother Nature to go along with the other annoying things that menopause brings on.
Everything starts to sag...boobs, butt, belly ...and airway tissues. :lol:
I met my now husband in 2002...never snored or exhibited any of the usual sleep apnea symptoms until probably 2006 when menopause really started to hit me in all its full glory.

For women it is very common for menopause to bring on the saggy airway tissues and they develop OSA courtesy of menopause.
So that might be a significant contributing factor in the why did you acquired OSA.
Of course it's not the only factor and women don't have to be menopausal to have it but for women in their 50s just showing new symptoms and getting diagnosed...there's a good chance menopause was a big factor.

We have a DIY thread for homemade hose management systems but it's old and I think almost all the images people shared have broken links but you can check it out and read about what they did and maybe get an idea.
viewtopic.php?t=10640

And here's a link for a store bought system that is fairly simple and you could probably get an idea from looking at it.
Some people just use a Command strip and a rubber band.
https://www.cpap.com/productpage/pursle ... ystem.html

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MrsRinPDX
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Re: New Beginnings are terrifying!

Post by MrsRinPDX » Sat Mar 10, 2018 7:20 pm

Rebamom wrote:
Sat Mar 10, 2018 6:33 pm
What did I do to put myself in this position and how can I fix it. I love to fix things. If it means losing weight, I will. If it means quit smoking - I will. I am just looking for some type of "hope" that says I am not doomed to be "broke" forever. Hope trumps Fear every day of the week!
Hi Rebamom,

The cause depends upon whether you have obstructive sleep apnea, central sleep apnea or a combination of both, but the only reliable fix is to use your machine.

Obstructive sleep apnea has to do with the internal structure of your throat. You can't really control that, but losing weight may help, although not everyone with OSA is overweight.

In central sleep apnea, the signal to breathe doesn't make it from your brain to your lungs. Nothing you can do there.

I would argue that smoking will not help you live to 100 regardless of sleep apnea, so by all means, quit if you can.

Please don't feel broken though. It's just one of those things that happens.

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Rebamom
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Re: New Beginnings are terrifying!

Post by Rebamom » Sat Mar 10, 2018 7:30 pm

Thank you for the info - mind's a ticking but need to wait until I actually see the machine and what I'm dealing with.

Menopause, eh? I can't say I've been through it or I may have been and don't know it. One certain medication I take stopped all the joys of
womanhood many years ago.

One last question and I honestly I have no clue what type of disorder I have - did not know there was different kinds, lol! But the question is if sleep apnea is caused from a sagging something in the throat, or even crossed signals from the brain and Cpap is the treatment, does Cpap strengthen the throat and/or by forcing you to breathe, fix the signals in the brain?

And yes, I know that smoking doesn't help - actually I had quit about a year ago but then came the weight so I gave up. I had already decided prior to this it was time to fix my body, drop the weight first plus an extra 10-15 lbs and then quit smoking. Then if I gain those few extra back I'll be in good shape.

I do thank you both for your help. In the course of just a couple hours of being able to ask questions and talk with someone, I can feel some of my anxiety, at least for today, subsiding. I just may go to bed early tonight.

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Pugsy
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Re: New Beginnings are terrifying!

Post by Pugsy » Sat Mar 10, 2018 7:41 pm

Rebamom wrote:
Sat Mar 10, 2018 7:30 pm
But the question is if sleep apnea is caused from a sagging something in the throat, or even crossed signals from the brain and Cpap is the treatment, does Cpap strengthen the throat and/or by forcing you to breathe, fix the signals in the brain?
I think I know where you might want to go with this question...fixing so you won't have to use the cpap forever?
No...it doesn't work that way. Cpap for whatever kind of sleep apnea a person might have is just treatment...not a cure.
I have been on cpap coming on 9 years in May...and I will be 66 in May.
If I didn't use my machine tonight I would quickly revert back to pre cpap days...getting up to pee 4 or 5 times a night...waking with a killer headaches because my oxygen levels dropped so much...feeling like crap because my sleep quality was totally in the toilet...and waking up at 7 AM and nodding off for a nap at 9 AM because I was so flipping tired and sleepy.

Some good educational videos here..take your time and stroll through all the various categories.
http://freecpapadvice.com/

and watch this for sure
https://www.youtube.com/watch?v=-gie2dhqP2c

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Julie
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Re: New Beginnings are terrifying!

Post by Julie » Sat Mar 10, 2018 7:48 pm

Just a reminder - maybe cheer a little because you found the answer to a serious problem... don't focus now on the problem but on making the 'fix' work as well as you can!

Rebamom
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Re: New Beginnings are terrifying!

Post by Rebamom » Sat Mar 10, 2018 8:28 pm

Thank you once again everyone! The youtube video was informative but more exciting were videos that followed after - which offer hope, not that I haven't received some of that here! Hope in the form of weight loss, experts speaking of various lifestyle changes that help and/or cure and new research. I can get used to the idea of treatment while working on other areas of my health, promoting and working towards one main goal - continuous health and longevity.

Yes I can celebrate that the problem was found and a treatment is there, but I am not one to be satisfied with just "being" - striving for perfection in everything is a goal and I will get there.

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kteague
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Re: New Beginnings are terrifying!

Post by kteague » Sat Mar 10, 2018 10:17 pm

#1 - Save your worries for those things immediate and necessary. If it ever turns out you will see them in person, cross that bridge when you get there. Plenty of threads on here about relationships you can browse if that time comes.
#2 - While broken and short sleep is not optimal, CPAP can help you get quality sleep during the time you are able to sleep. You may not be able to realize your full rewards potential without more/better sleep, but here I'd say every little bit you can do to improve your sleep is a win. Prevention of oxygen drops is a win for your health. Prevention of repeated flooding the body/brain with stress hormones with apnea events is a win.
#3 - Follow previous suggestion for hose management. You can make sure you cannot become entangled.

You may just find with treatment your anxiety actually improves. Sleep deprivation can do ugly things to our nerves, as do the stress hormones. I'm sorry you feel those of us with OSA are "broken". Do you consider those who wear eyeglasses broken too? Perfection is a nice goal, but life has a way of keeping us humble, and even appreciative of any degree of health we can achieve. Please don't let the mourning of imperfections dampen your enthusiasm for how fortunate you are to have an issue that can be treated with simply AIR! You are going through an adjustment phase. Once you get your head around this it likely won't seem such a big deal. Approach it as you will do what you need to do as long as you need to do it. Let the details of that take care of themselves.

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Rebamom
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Re: New Beginnings are terrifying!

Post by Rebamom » Sun Mar 11, 2018 5:37 am

Thank you kteague. I apologize if you or anyone feels I was calling you broken, I was not and I don't believe you are, actually that thought never crossed my mind. The person that is "broken" is myself, and that is the only person I am referring to. Actually for me to think of it in those terms is a positive affirmation for me, because "broken" can be fixed and therein lies my strength to do so. Trust me I do know about remaining humble, life has been a good teacher - but striving to be perfect is normal for me so that I can keep up with all those that trust and depend on me to take care of them. I do sincerely apologize to everyone. (Open mouth, insert foot syndrome)

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Julie
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Re: New Beginnings are terrifying!

Post by Julie » Sun Mar 11, 2018 6:03 am

Well, maybe just take a deep breathe and try to relax... you don't have to be perfect here at all and not within any timeline. We've been at this too long to be a lot more than at least slightly messy at the best of times and 'perfect' is not part of the goal here. Just get most things going as well as possible as soon as possible, and for many that can take months or even longer. And let 'broken' be a word for TV, not real life. Having OSA does not mean you're broken any more than having some other chronic condition you just deal with.

Rebamom
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Re: New Beginnings are terrifying!

Post by Rebamom » Sun Mar 11, 2018 8:53 am

Good morning and today is better. Long list of things to do keep busy and not worry, lol! I've decided that for now, it is what it is and I will have to just deal with it - a fact of my current life. I did recall the nurse tell me to consider asking my doctor for something for anxiety and although I am totally against pills, this might be a temporary fix to give the Cpap a chance to work. Have a wonderful day!