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Struggling
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Mark Douglas Offline

Advisory Members

Posts: 513
Joined: Apr 2015

Machine: Sys 1 (60) RemStar BiPAP Auto with Bi-Flex 760P Auto Bi-Level (Variabl
Mask Type: Nasal mask
Mask Make & Model: PR Wisp
Humidifier: PR Sys One heated
CPAP Pressure: RiseTime 3 Fxd E-9.0 / I-11.5
CPAP Software: SleepyHead EncoreBasic

Other Comments: Hashimoto's thyroiditis.

Sex: Male
Location: SW Ohio

Post: #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)
(This post was last modified: 06-19-2015 06:21 PM by Mark Douglas.)
06-19-2015 06:19 PM
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tedburnsIII Offline

Members

Posts: 196
Joined: Mar 2015

Machine: 3B RESmart APAP
Mask Type: Nasal mask
Mask Make & Model: Wisp nasal; ResMed FX nasal
Humidifier: came with unit-I vary it, currently set at '3', '5' is max
CPAP Pressure: 10 cm CPAP
CPAP Software: Other Software

Other Comments: Dx moderately severe OSA. Overnight pulse oximeter-CMS50D Plus

Sex: Male
Location: San Diego

Post: #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).
(This post was last modified: 06-19-2015 06:54 PM by tedburnsIII.)
06-19-2015 06:45 PM
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eseedhouse Online

Advisory Members

Posts: 882
Joined: Dec 2014

Machine: ResMed Airsense 10 Autoset
Mask Type: Full face mask
Mask Make & Model: SimPlus
Humidifier: ResMed
CPAP Pressure: 7-10
CPAP Software: SleepyHead

Other Comments: Also on supplemental O2 at 3L/min. while sleeping.

Sex: Male
Location: Victoria, British Columbia

Post: #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

I am neither a Doctor, nor any other kind of medical professional.

Actually you know, it is what it isn't.
06-19-2015 06:49 PM
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tedburnsIII Offline

Members

Posts: 196
Joined: Mar 2015

Machine: 3B RESmart APAP
Mask Type: Nasal mask
Mask Make & Model: Wisp nasal; ResMed FX nasal
Humidifier: came with unit-I vary it, currently set at '3', '5' is max
CPAP Pressure: 10 cm CPAP
CPAP Software: Other Software

Other Comments: Dx moderately severe OSA. Overnight pulse oximeter-CMS50D Plus

Sex: Male
Location: San Diego

Post: #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!
(This post was last modified: 06-19-2015 08:05 PM by tedburnsIII.)
06-19-2015 07:05 PM
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quiescence at last Offline

Advisory Members

Posts: 753
Joined: Nov 2014

Machine: REMstar System One with Autoflex
Mask Type: Full face mask
Mask Make & Model: Quattro AirFit F10
Humidifier: yes typical setting = 4
CPAP Pressure: 5-13 Autotritrating CPAP
CPAP Software: SleepyHead EncoreBasic

Other Comments: CMS-50F Plus oximeter /w SPO2 Assistant software. Avowed mouth-breather switching to nose-breathing

Sex: Male
Location: US

Post: #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. https://sleep.tnet.com/reference/tips/imgur

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

Dedicated to QALity sleep.
You'll note I am listed as an Advisory Member. I am honored to be listed as such. See the fine print - Advisory Members as a group provide advice and suggestions to Apnea Board administrators and staff 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.
06-20-2015 12:51 AM
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vsheline Offline

Advisory Members

Posts: 1,908
Joined: Jul 2012

Machine: S9 VPAP Adapt (USA Model# 36007, not better 36037 or 36067)
Mask Type: Full face mask
Mask Make & Model: F10 or SimPlus w/ 2Liners. MirageQuatro & Gecko gel pad
Humidifier: H5i
CPAP Pressure: 15 EPAP, PS 5-10
CPAP Software: ResScan

Other Comments: Marfan Syndrome, chronic bradycardia, occasional Cheyne-Stokes Respiration

Sex: Male
Location: California, USA

Post: #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!

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. The Advisory Member group provides advice and suggestions to Apnea Board administrators and staff on matters concerning Apnea Board operation and administrative policies - not on matters concerning treatment for Sleep Apnea. I think it is now too late to change the name of the group but I think Voting Member group would perhaps have been a more descriptive name for the group.
(This post was last modified: 06-20-2015 01:22 AM by vsheline.)
06-20-2015 12:52 AM
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OMyMyOHellYes Offline

Advisory Members

Posts: 915
Joined: Mar 2013

Machine: Respironics 560 Auto
Mask Type: Nasal mask
Mask Make & Model: Resmed Mirage FX
Humidifier: Respironics System One (no heated hose)
CPAP Pressure: 08.0-15.0 cm/H2O
CPAP Software: EncoreBasic

Other Comments:

Sex: Male
Location: Texas

Post: #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
06-20-2015 05:14 AM
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Dafod Offline

Preferred Members

Posts: 75
Joined: Feb 2015

Machine: Resmed Airsense 10 Autoset or PR1 560
Mask Type: Nasal pillows
Mask Make & Model: Resmed P10, Amara View
Humidifier: Yes
CPAP Pressure: 8-15
CPAP Software: ResScan SleepyHead

Other Comments:

Sex: Male
Location: Australia

Post: #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.
06-20-2015 05:59 AM
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tedburnsIII Offline

Members

Posts: 196
Joined: Mar 2015

Machine: 3B RESmart APAP
Mask Type: Nasal mask
Mask Make & Model: Wisp nasal; ResMed FX nasal
Humidifier: came with unit-I vary it, currently set at '3', '5' is max
CPAP Pressure: 10 cm CPAP
CPAP Software: Other Software

Other Comments: Dx moderately severe OSA. Overnight pulse oximeter-CMS50D Plus

Sex: Male
Location: San Diego

Post: #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]
(This post was last modified: 06-20-2015 11:52 AM by tedburnsIII.)
06-20-2015 11:46 AM
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