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Struggling
#21
RE: Struggling
I was given a freebee jaw strap by local cpap shop (no that is not its name or allusion don't bust me) and the jaw part is once piece with velcro adjustment like every other headgear I have seen. It sticks just dandy to the Wisp headgear.
My suggestion is get a jaw strap and try it and see if you feel better. Somewhere archangel(?) talks about using just a piece of Ace bandage and just wrap around the head for a jaw strap.
Nothing to loose right?
Might wanna look at my thread about sleepyhead and what I learned today?
I use my PAP machine nightly and I feel great!
Updated: Philips Respironics System One (60 Series)
RemStar BiPAP Auto with Bi-FlexModel 760P -
Rise Time x3 Fixed Bi-Level EPAP 9.0 IPAP 11.5 (cmH2O)
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#22
RE: Struggling
I have done whatever is necessary to be successful in this therapy, and it has worked.

I am 65 years of age with a BMI ~31. On some days I have felt so GREAT as if I were in my 30's, or even 20's.

Have used mild sedation, a number of different masks which have worked, a chin strap always, taping my mouth shut, inserting a NightGuard in mouth, whatever it takes.

Believe it is key not to give up, and to monitor your data, including use of an overnight oximeter (if warranted) to feel this good. The more one compulsively does this monitoring (at least for a month or two, if not more) the more benefit one will derive, in my view, and the less likelihood one will become a statistic (in more than one sense).
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#23
RE: Struggling
(06-19-2015, 05:14 PM)dancutmore Wrote: My average AHI is actually around 1. This is my whole problem. I seem to be getting good results on paper buuuut still feel crappy.

I was the same way at the start of therapy. Although my AHI was nice and low I kept feeling worse. So they did an overnight oxymetry and found that my levels were still below 80% for much of the night in spite of being on the machine. They added supplemental oxygen into the mix and that's when I stopped feeling that I was going downhill. And around three months later I started to definitely feel better.

The thing is to discuss it with someone who is knowlegable and also cares. In my case it was the DME, in your case you might need to pester the sleep doctor or the DME, but if you are feeling worse you need to pester somone!

If you are just holding steady you might need to hang in there for a few months until you do start improving. Just don't give up and quit!
Ed Seedhouse
VA7SDH

Part cow since February 2018.

Trust your mind less and your brain more.


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#24
RE: Struggling
eseedhouse- You are lucky to be alive.

OP- Yeah, one's oxygen sats are very important part in feeling good. Make sure your desats do not go below 90% and that your sats exceed 90%- overnight pulse oximeter required, but note Clincial Guidelines require that the minimum Sp02 >90% when lab does a titration study, so if that went well, and one SLEPT through it, one has a good, safe, 'cover all' starting pressure- which should be given considerable weight.

Some people see dramatic results in improvement from the get-go. If not, give it time- one must be PATIENT! It's a process of becoming familiar with CPAP and your new life.

And the alternative could be life-endangering, or perhaps suffer a stroke and wear diapers for rest of life with your SO changing them, if they don't bug-out on you. I don't fancy being in a wheelchair for the rest of my life, or at least at the age of only 65.

As the sleep technologist told me- this therapy works 100% of the time. She neglected to mention 'if you do your part'!

OP- You may have had months, or perhaps years of poor sleep. This has created what some call a 'sleep debt'. It may take a while to readjust to sleeping as a normal person should, and to 'pay back' some of that debt by now sleeping efficiently!
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#25
RE: Struggling
(06-19-2015, 11:53 AM)GWild Wrote:
(06-19-2015, 06:00 AM)quiescence at last Wrote: A previous post on the subject of how you can post links from imgur.com is:
http://www.apneaboard.com/forums/Thread-...#pid110420


This link gives me:
    You do not have permission to access this page. This could be because of one of the following reasons:
  • Your account has either been suspended or you have been banned from accessing this resource.
  • You do not have permission to access this page. Are you trying to access administrative pages or a resource that you shouldn't be? Check in the forum rules that you are allowed to perform this action.
  • Your account may still be awaiting activation or moderation. (Resend Activation Code)
  • You have accessed this page directly rather than using appropriate forms or link.

    You are currently logged in with the username: 'GWild'

Sorry, GWild! That link was embedded in an advisory member only forum. I quote it below.

(04-24-2015, 08:39 AM)Sleeprider Wrote: The image attachment is a great benefit on the forum as most forums require images to be hosted off-site. However, there are serious limits to the attachment size and number, and for new members, they cannot attach images until they reach a minimum number of posts.

An alternative way to post your data and images is to follow this tutorial. http://www.apneaboard.com/wiki/index.php...pnea_Board

The images embedded using that method can be larger, clearer and unlimited.

Dedicated to QALity sleep.
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#26
RE: Struggling
(06-18-2015, 10:28 PM)trailrider Wrote: I read elsewhere that tightening the strap OPPOSITE the leak helps more.

I think it is import to tighten the straps on left and right sides evenly.

After every morning I check that the length of the top left and top right straps are equal length, and the length of the bottom left and bottom right straps are equal length.

If left and right sides are not equal length then I'll adjust the long side slightly shorter and the short side slightly longer, so I'll be ready for the next night.

Good luck!
The Advisory Member group provides advice and suggestions to Apnea Board administrators and staff on matters concerning Apnea Board operation and administrative policies.  Membership in the Advisory Member group should not be understood as in any way implying medical expertise or qualification for advising Sleep Apnea patients concerning their treatment.
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#27
RE: Struggling
Hang in there with the CPAP - you need it. But be cognizant that apnea may not be the sole cause of your fatigue.

You know apena was a problem and you are addressing that with the machine. Symptoms of fatigue still there, then you can eliminate apnea as a likely cause and move on to investigating the next most likely cause. It is like working your way through a matrix.

OMMOHY
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#28
RE: Struggling
(06-19-2015, 05:14 PM)dancutmore Wrote: My average AHI is actually around 1. This is my whole problem. I seem to be getting good results on paper buuuut still feel crappy.
In regards to the cost of masks, I live in Australia, you have done well if you get a mask for under $200.
Thanks for your reply, I do appreciate it.

Dancutmore,
you can get most masks on Ebay for around $100USD. Also, Amazon will ship some sellers masks and pillows etc to Oz. Being in Australia shouldn't mean you get ripped.

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#29
RE: Struggling
Absent considerable side effects with a given mask, one needs to experiment with fit and analyze data. I believe that one may experience minimal leaks with most masks, especially the PR Wisp. I've found it helpful to carefully read the instructions that come with the Wisp or any other mask.

Set your CPAP for your straight optimum pressure and omit or set the ramp function to zero.

Place PR WISP mask on head and adjust straps, try to make sure there is a good seal with cushions inflated. Hold your left hand on left side of mask and tilt your head, do the opposite for right side. You should not sense any leaks when you do this tilting- otherwise, readjust the mask on your nose and/or tighten or loosen straps. Do not confuse leaks with exhalation port on top of hose.

A considerable part of last night with the Wisp resulted in ZERO leaks. I do tape my mouth shut and wear a chin strap.

A high leak on my machine is >90 LPM.

[Image: 6-19-2015%20CPAP%20niTE%2011pt5_zpsma8x0a73.png]
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