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the CPAP Blues
#1
Gross 
HI, I'm new to the forum. I found it when looking up information about the HGNS trial studies. I've signed up for one here in Indy, because I'm willing to try anything to get a good night's sleep.
I've been a raging insomniac for over 20 years. I have tried CPAP's 2 different times in the last 3 years, with no luck or help. I can't get to sleep for the longest time, and when I do, I'm still waking up 3-6 times a night. It's frustrating, uncomfortable and just the thought of putting that #&%! thing on my face at night makes me groan. Ambien is my friend! Too-funny
I've read some of the success stories, and swore that I'd make it work this time, too. But, my machine's been sitting dormant for 2-3 weeks now, and I just can't bring myself to use it. Been thinking lately about taking it back to the med house....
Any help or suggestions would be greatly appreciated.
Thanks,
Racegirl in Indy Dont-know
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#2
Hi Racegirl Welcome
Start by reading the associated risk of untreated sleep apnea (high blood pressure, heart disease and heart attack, stroke, car accidents and decreased quality of life)
Get familiar with the machine and its features.
Ramp:pressure starts lower pressure over a short period of time and then adjust to set pressure
Flex: makes it easier to exhale against pressure
Its vitally important to find a mask that fits properly and is comfortable to wear.
Be patient, consistent and determined to make it work.
CPAP is not a miracle cure and only works if used all every night. Stick with it and it,ll work for you just it can take some time but its worth the effort.
Do a forum search about sleep hygiene which is important too.
A journey of a thousand miles begins with a single step.
You've already made your first step by being here so take the next step and so on ........till one day you,ll post your own success story
Best of luck on your journey - your journey just begun - keep asking the questions here and follow up with the sleep doc.
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#3
(06-28-2012, 06:12 PM)Racegirl Wrote: HI, I'm new to the forum. I found it when looking up information about the HGNS trial studies. I've signed up for one here in Indy, because I'm willing to try anything to get a good night's sleep.
I've been a raging insomniac for over 20 years. I have tried CPAP's 2 different times in the last 3 years, with no luck or help. I can't get to sleep for the longest time, and when I do, I'm still waking up 3-6 times a night. It's frustrating, uncomfortable and just the thought of putting that #&%! thing on my face at night makes me groan. Ambien is my friend! Too-funny
I've read some of the success stories, and swore that I'd make it work this time, too. But, my machine's been sitting dormant for 2-3 weeks now, and I just can't bring myself to use it. Been thinking lately about taking it back to the med house....
Any help or suggestions would be greatly appreciated.
Thanks,
Racegirl in Indy Dont-know

So, first of all, let me welcome you to the forum.

Obviously you are here because you want help. Let me tell you after being non-compliant (that means my machine sat at the bottom of my closet for about 8 years) that getting upset and ignoring the machine is not going to help you. Yes, it is inconvenient. Yes, it is a huge pain in the a$$ (can I say that?), yes, it requires more effort than should be required just to get a good nights sleep. I agree with you whole heartedly. So let's talk reality now. You can take meds to make you sleep. But if you have OSA, throughout the course of that sleep you will experience major blockages to your airway which will lead to degraded sleep quality, lower oxygen levels (which lead to a whole host of associated issues including death) and while you may feel better for a day or a week, you will reach a point (and I bet you have already) where even on ambien you are not waking up refreshed, you are "muddle-headed" you are exhausted during the day, you can't function at the level you should. The only answer is to give your body what it needs. A constant supply of oxygen and a good night's sleep to rebuild your body and process the day's activities. The answer is your machine. I have been down that path and I am back. Learn from the people here. You can get frustrated with the status quo, or you can find a way to make the machine work with your situation. Maybe the answer is a different type of mask or a different type of machine. Do whatever you need to do to learn to work with the machine so your body gets what it needs.
You will, in the end, do what you want,but I am telling you the truth from one who has been down that path. Best of luck!
As always, YMMV! You do not have to agree or disagree, I am not a professional so my mental meanderings are simply recollections of things from my own life.

PRS1 - Auto - A-Flex x2 - 12.50 - 20 - Humid x2 - Swift FX
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#4
So what makes the machine and mask difficult to use?

How many masks have you tried?

What kind of machines have you tried? (which machine do you have now?)

We can try to help you with it but, ultimately, it will come down to you.
PaulaO2
Apnea Board Moderator
www.ApneaBoard.com


Breathe deeply and count to zen.

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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#5
Hi Racegirl, Firstof all, Welcome! to the forum. I'm sorry you are having such a ROUGH time with your machine. CPAP therapy can take lots of patience. Don't give up on this, it sometimes takes quite a while to get used to it but you just have to keep at it.
trish6hundred
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#6
Welcome Racegirl!

Keep in mind insomnia and sleep apnea can be caused by different underlying issues. Since you have a CPAP machine, I'll assume that you had a sleep study and a doctor prescribed it for you.

A couple of recommendations,
1. If the doctor who's treating you is not a sleep specialist, go to one if you can. A board certified sleep specialist is preferable.

2. Your treatment is not working. Until you can get to a "success" point, you may need to see a doctor weekly. Don't let them push you off to a three or six month later appointment.

I know there are practical issues with cost, time off work, etc. If you are going to be participating in the HGNS study, you should have ample resources to turn to. Sounds very interesting, please keep us up to date on how the study goes for you and you in general.
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#7
I agree that CPAP does not necessarily lead to better sleep. A thorough review and a lot of work on sleep hygiene is necessary. Insomnia sometimes seeems to be incurable. The important issue with CPAP is that you're maintaining your health by preventing heart disease, tendencies to diabetes and hypertension. A sleep specialist- one who helps you learn to sleep not a sleep apnea specialist -is certaininly a good idea, but maybe you've already done that.
Good luck.
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#8
Welcome Racegirl! Welcome

Since you're in Indy (and I'm in the metro area) I can recommend a sleep doc, if you need one.

I've never had any problems with "sleeping" - just with the "breathing"; so I can't help with the insomnia. But if you would answer the questions the others have asked, I sure we can help you get adjusted to sleeping with a _PAP machine. I-love-CPAP


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 OPINIONS ONLY AND NOT NECESSARILY STATEMENTS OF FACT.
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#9
Hi there...I have had trouble sleeping for the last 15 years or so. I started CPAP about 2 months ago. Yes, I still wake up 5 or 6 times on a good night, and maybe a dozen or so on a bad night. However, even after a bad night, I wake up feeling pretty refreshed. I now do about 2 hours exercise a day, have lost weight, bp is down, asthma is gone and I feel great. As far as I can say...it is well worth the perserverance..and it was not real easy for me. Best of luck to you.. frustrating as heck when the rest of the world has no trouble sleeping.
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#10
Welcome to the forum!!! We are glad you found us!!! Welcome

I will restate what others have already said. You need to find a good sleep doctor to work with you in managing this condition.

Second, you need a good DME to assist you in finding the correct mask (type, brand, etc.) that works for you.

Best of luck to you on your journey. Sleep-well
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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