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Looking for some help - almost 5 years and not feeling a lot better
#31
RE: Looking for some help - almost 5 years and not feeling a lot better
(10-14-2020, 09:35 AM)Sleeprider Wrote: In post #9 of this thread I interpreted your present pressure settings in form of bilevel settings. http://www.apneaboard.com/forums/Thread-...#pid369732
Quote:When you set the Airsense 10 Autoset at a range of 9.4 to 16.0 with EPR, your actual pressure delivery will be 9.4/6.4 to 16.0/13.0 (IPAP/EPAP)

If you are requesting a prescription for an Aircurve 10 Vauto, I recommend that the pressure prescription be set at:
Mode: Vauto
EPAP min 6.4
PS 4.0
Max Pressure 16.0

This will provide a bilevel pressure range from 10.4/6.4 to 16.0/12.0 (IPAP/EPAP)
Thank you Sleeprider!  Sorry I missed that.

Might as well ask for what might be sensible.  Thanks again for the recommendation.
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#32
RE: Looking for some help - almost 5 years and not feeling a lot better
Well, back from doing some homework.  I've written something which has been critiqued offline.  It makes much more sense that this be posted online, so that others could both contribute to the discussion and possibly benefit from what's discussed.

A little bit of odd background.  I've been diagnosed with COPD and take Pulmacort daily for controlling it.  If lax in dosage, (forget to take) then experience audible wheezing in my lungs.  If dosing normally then this wheezing vanishes.  Have to note there seems to be a slight correlation to the apparent dosage (how well I've inhaled and what comes out of the inhaler) and my sleep quality.  Unfortunately there's really no way to actually check it, so it is offered as a sort of hearsay.  The medicine is mixed with a sugar and this sugar can be detected in the throat.  Low levels of sugar seem to somewhat correlate to poorer nights of sleep.  It is well noted in the medical literature that inhalers of this sort have high incidents of "poor effectivity".  Also seem to be blessed with exercise induced asthma - asthma attacks that occur more than 30 minutes after exercise.  (Not during exercise.)  This asthma is controlled with an albuterol inhaler.  Of course, I can prevent such attacks if the albuterol is used prophylactic-ally.  In full disclosure, I've had asthma events on rare occasion that are not associated with any exercise or exertion.

I'm trying to make up a letter to my physician to request a new machine (ResMed AirCurve 10 VAuto bilevel) for my new PAP machine.  I am due for a new machine since I have had my old one since July 2015.  Based on input from this forum, I have put something together for your constructive criticism.

I hope this will cut and paste without error.
===== start letter =========================================================================
Dear Doctor,

I would like a prescription for a bilevel PAP machine to treat my currently not very well controlled sleep issues.

In particular, a ResMed Aircurve 10 VAuto bi-level machine with an initial setting of:

Mode: VAuto
EPAP min 6.4
PS 4.0
Max Pressure 16.0

The applicable codes would be:
"Supplies including: E4070 Bi Pap Auto C-Pap A4604, Tubing with integrated heating element A7034 Nasal Interface A7035 Pos Airway Pressure Headgear A7038 CPap disposable filter A 7039 CPap gross Particle"  (need code for full face mask)

My experience with the Philips Respironics Auto CPAP has resulted in a low AHI but left me unrested. The respiratory flow graphs show that I have a lot of flow limitation (flattened inspiratory peaks) that probably contribute to my discomfort and sleep arousals. That machine is due for replacement and based on my review of my detailed respiratory flow charts and materials I have reviewed, it is my belief that bilevel pressure support will provide the additional therapeutic benefit from pressure support needed to fully remedy my sleep quality. I hope you will support this enhancement to my positive air pressure therapy by providing a prescription for this Resmed Aircurve 10 Vauto bilevel machine.


The settings above are very close to my current APAP settings, with the exception of the Pressure Support and the EPAP settings, which are cannot be controlled in my current machine.

An ordinary APAP cannot supply the pressure support necessary for the treatment of UARS.  I do not want to continue to feel the way I do.  It is intolerable and causes depression because I have felt continually bad for over 10 years.  I was undiagnosed for many years prior to that and I suffered from what my doctors called cluster-headaches.  My doctors (prior to you) had no idea what the cause was.   Only by my chance observation that I was waking during the evening, did I make the connection between headaches and sleep issues.  

It is only this week that I have realized that I haven't complained earlier because I was resigned to my condition.  Well, I've decided not to be resigned, I have a spark left, and I want to feel better than I do right now.  I'd like to become employable once again.  Having sleep issues makes it nearly impossible to maintain work performance.


++++ Comment to forum:  Should this even be here?  It's my fall back?  I really want a VAuto +++++++++++++++++++++++++++++
It's pretty clear that insurance is unlikely to cover this.  This is irrelevent as I am willing to self fund this machine.  I have found a DME that can supply me a used ResMed Aircurve 10 VAuto bi-level machine at a reasonable cost.  I can supply you the correct forms to fill out.  I will attach them to this document.

According to the DME, you should check the Auto CPAP/BIPAP box in the form and write down the IPAP and EPAP settings.  For your convenience, I have written them here.

IPAP 10.4/6.4
EPAP 16.0/12.0

Attachment:  PAF.pdf
++++  end of comment to forum ++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++

My sleep related issues and symptoms
   • Fatigue
   • Headache on waking, often lasting through the day
   • Poor concentration
   • Cognitive disfunction
   • Occasional Nocturia - I have never had this before
   • Daytime sleepiness
   • Some balance issues - notably when getting in and out of tub and trying to walk past obstacles
   • Non-restorative sleep, feel refreshed less than 3 times per Year
       ◦ Just don't feel rested from previous night's sleep
       ◦ Groggy in morning, very slow to get going
   • Dry eyes, puffed up eye bags
   • Don't feel alert.  Feel like taking nap during day. (I do not take naps during day)
   • Occasional nocturnal leg cramps
   • Have terrible flow morphology, with mishapened inspiratory peaks, many flattened, and impulsive expiratory events, constant flow limitations, many apneas and numerous apnea-like flow events which are not counted by the machine but are cumulative in effect and deleterious to my health.  Should you wish, I can show numerous examples of these flow anomolies.
   • Needing ritalin, not just to control ADHD/concentration, but just to make it through the day


Best regards,

==== end of letter to doctor ======================================================================

To forum:
Please help me in getting a suitable machine and therapy to treat me.  It's been hard to carry on and have a functional life.  Sleep deprivation creeps up on you and steals both your energy, concentration and joi de vivre.   It has definitely taken it's toll on me.

My following post will contain a sleep study and follow up diagnosis both pre and post titration.  I had a second sleep study done in 2016, but have no documentation.  Have sent a med records request for it.  Hope to receive it in a week or so.
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#33
RE: Looking for some help - almost 5 years and not feeling a lot better
This is my experience it may not be the same for you---- I had a dreamstation for 5.5 years and wanted a new VAUTO. I was told although I had a bipap I could not get a new one for at least 1.5 more years (7 total) IF my machine was working or if it wasn't could not be repaired. The 5 years was for machines that were not repairable.

I purchased a used one from Supplier #2 for 799. it came with air hose, heated air hose, power, travel case.. Everything except mask and had a 1 year warranty.

So for you to get a bi level instead of a cpap, I would think they will want a new sleep study and that will need to show you need it. More Dr. visits... I don't know what your copay is but mime would have been more than what I paid.
Apnea (80-100%) 10 seconds, Hypopnea (50-80%) 10 seconds, Flow Limits (0-50%) not timed 
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#34
RE: Looking for some help - almost 5 years and not feeling a lot better
mask just need to say "patienyr's choice" no need to lock you into a specific mask or mask type when it is like;y to change.
you said "My experience with the Philips Respironics Auto CPAP has resulted in a low AHI" add, well below 5 and I know number alone do not merit a change of machine type away from APAP, "but"

That is to clearly sho him that you understand the dilemma.

You said "That machine is due for replacement " instead say "That machine is over 5 years old and is due for replacement"

Here are acouple of medical articles that say, at least in some situations BiLevel helps with Asthma. I do not have enough expertise with this other than to ask you to talk to your doctor about it. The purpose is simply to further your argument for a BiLevel (I will recommend a resMed VAuto though)
https://www.tandfonline.com/doi/full/10....src=recsys
https://www.tandfonline.com/doi/abs/10.1...0902718829
Fred Bonjour - Project Manager and Lead Tester for OSCAR - Open Source CPAP Analysis Reporter 
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#35
RE: Looking for some help - almost 5 years and not feeling a lot better
First sleep study information - pre titration
Unfortunately, I had to type this all in from a hard copy fax, there may be typos.

   
1/06/2010 Sleep Diagnosis: (actual test on 12/22/09)
1. Snoring and non-restorative sleep with possible upper airways resistance syndrome

___ is a ___ male of normal build who was evaluated for a history of nonrestorative sleep and loud snoring.  There was no history of witnessed apnea.  He does waken himself at night, often with a startle and sometimes short of breath.  During the day he feels chronically fatigued and tired.  He did score only 6 however out of 24 on the Epworth sleepiness scale.  He underwent clinical diagnostic polysomnography on 12/22/2009.

In summary on that occasion he demonstrated a normal sleep latency of 18 minutes followed by a modestly reduced time of 339 minutes.  He experienced two REM episodes constituting a reduced proportion of total sleep time at 14%.  Slow wave sleep was relatively preserved at 18% of total sleep time.  REM sleep latency was delayed to 164 minutes.  Sleep efficiency was only fair at 77% and he did experience 86 minutes of awake time after sleep onset, primarily during a prolonged  awakening in the middle of the night during which he got out of bed.  ___ was seen supine throughout the study.

Moderate snoring was noted, rated 3 on a 7 point scale but he demonstrated a total apnea plus hypopnea index of only 1.4 episodes per hour where up to 5 is generally considered normal.  He had a total of eight obstructive hypopneas with a baseline oxygen saturation of 95%.  The oxygen saturation never fell below 91%.  He did have frequent micro arousals as result of increasing respiratory effort, which I estimate to be at about 8 per hour.  This would give him a total respiratory distress index near the upper limits of normal at 9 per hour.  Periodic limb movements were seen in the final third of the night leading to an overall limb movement index that was moderately increased to 22 per hour where up to 15 is generally considered normal in adults.  These did not seem to be associated with arousals and are of uncertain clinical significance in the absence of history of restless legs syndrome.  No EEG or EKG abnormalities were noted.  Pre and post sleep blood pressures were 132/80 and 128/74 respectively.  On awakening in the morning the patient was aware that he had not slept well at all.  He felt totally unrefreshed.

Based on this evaluation the patient does snore and appears to have arousals associated with respiratory events at a rate close to the upper limits of normal.  This may very well be underestimated by his rather restless night in the lab and it is difficult to tell whether his daytime symptoms of nonrestorative sleep could relate to upper airways resistance syndrome.  The diagnosis of upper airways resistance syndrome is best made by response to CPAP.  The patient could be treated empirically for a period of time with CPAP after a titration in the lab to insure pressure level to relieve his snoring and respiratory effort related arousals.

   
Post titration sleep study
4/14/2010
Interpretation 5/6/2010
Sleep Diagnosis:
1. Mild obstructive sleep apnea syndrome

In summary, ___ is a ___ gentleman, who returns to our sleep lab for an overnight CPAP titration with a goal of determining an optimal sleep pressure needed to suppress his respiratory obstructive events and consolidate his sleep.  Is previous overnight polysomnogram recorded on 12/22/2009 documented mild obstructive sleep apnea syndrome with a respiratory distress index of 80 events per hour.

DATA REVIEW:
This is an over night CPAP titration.  CPAP was delivered through Flexi Fit large mask.  Sleep onset latency on CPAP was mildly prolonged to 20 minutes and sleep efficiency was reduced to 75%; he slept for 330 minutes out of 435 minutes in bed.  Sleep architecture was remarkable for a normal stage III proportion, and a reduction in stage REM which represented only 13.2% of total sleep time, while the normal is 20-25%.  There were three periods of REM sleep recorded.  The patient slept in the supine position the entire night.

CPAP was titrated at pressures of five and seven.  Both pressures successfully suppressed respiratory obstructive events however REM sleep only occured on seven.  With CPAP set at this pressure, the total sleep time was 3 hours and 15 minutes including 43 minutes of supine REM sleep; the apnea hypopnea index was 2.6 and oxygen desaturations were not present.  The oxygen saturation nadir was 92%

The overall PLM index was zero jerks per hour of sleep.  Continuous EKG recording showed sinus rhythms without significant arrhythmias.  Upon awakening, the patient stated that it was not as well as he liked it to be.  On the post testing questionnaire, he replied that the depth of his sleep was average and that the refreshing quality of the night was average.  He was a little sleepy and a little tired.

IMPRESSION:
This overnight CPAP titration is successful.  CPAP set a 7cm of water suppressed respiratory obstructive events including in supine REM sleep and at this time will be our recommended pressure.


The review above was by a different sleep physician and makes no mention of non-apnea related respiratory issues, like UARS.

Well that's what I have so far.  Hope it's helpful, because it was a lot of typing!
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#36
RE: Looking for some help - almost 5 years and not feeling a lot better
(10-16-2020, 11:31 AM)staceyburke Wrote: This is my experience it may not be the same for you----  I had a dreamstation for 5.5 years and wanted a new VAUTO.  I was told although I had a bipap I could not get a new one for at least 1.5 more years (7 total) IF my machine was working or if it wasn't could not be repaired.  The 5 years was for machines that were not repairable.  

I purchased a used one from Supplier #2 for 799.   it came with air hose, heated air hose, power, travel case.. Everything except mask and had a 1 year warranty.

So for you to  get a bi level instead of a cpap, I would think they will want a new sleep study and that will need to show you need it.  More Dr. visits... I don't know what your copay is but mime would have been more than what I paid.
Blunt question to you.  What did you supply to your supplier to buy this machine?  I only have a prescription for a bog standard CPAP.  Did you send funds plus a script for what machine?  Cash only?  I did send an email to Supplier #2 on this topic, but as of this moment, I have not received a response.  Maybe they will only answer this via phone?
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#37
RE: Looking for some help - almost 5 years and not feeling a lot better
Sorry if this throws monkey wrenches into the situation, but I seem to be good at doing so at times.
Having experienced my own complex apnea and COPD situation, maybe something other than VAuto might need consideration. ResMed may have something that you may want to discuss here as a different choice to think about.

It is possibly well known about me that Central apnea is a big hindrance to sleep, and so has COPD, especially in the past year. In fact, I take a new sleep study tonight to get medical evidence to move on from the ASV onto an NIV ventilator with AVAPS mode.

I am not saying you need to go that high in the machine chain. In light of your COPD and Asthma, maybe a machine with AVAPS might be worth considering. RedMed has an ST-A in the CPAP family, and up from there is Stellar 100 & 150, then up again to the Astral 100 & 150. I'm only mentioning because I don't want you to need to attempt a redo on the machine if you need to go down AVAPS road and have already chosen and received a VAuto. I am not making medical assessments, but maybe you're not as bad off as me, or some other factors are in play that we aren't aware of. If I were asked, I would suggest you at least consider the ST-A and research it a bit, and let's see what discussions of this possible either/or machine discussion brings to light.

I'll mention my inhalers to put us on a more level playing field. I have Breo Ellipta at 200/25 mcg & Spiriva Respimat 125 mcg as my long lasting daily inhalers. I have a nebulizer that I'm using ipratropium .5 mg. And last is the Ventolin HFA as my rescue inhaler.
Dave

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INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEBSITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#38
RE: Looking for some help - almost 5 years and not feeling a lot better
Assuming you end up going w Supplier #2, call them. Via chat or email they can only respond w standard answers, On the phone they will be able to tell you how many hours are on the machine you will be shipped.
Fred Bonjour - Project Manager and Lead Tester for OSCAR - Open Source CPAP Analysis Reporter 
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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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#39
RE: Looking for some help - almost 5 years and not feeling a lot better
(10-16-2020, 11:55 AM)bonjour Wrote: mask just need to say "patienyr's choice"  no need to lock you into a specific mask or mask type when it is like;y to change.
you said "My experience with the Philips Respironics Auto CPAP has resulted in a low AHI" add, well below 5 and I know number alone do not merit a change of machine type away from APAP, "but"

That is to clearly sho him that you understand the dilemma.

You said "That machine is due for replacement " instead say  "That machine is over 5 years old and is due for replacement"

Here are acouple of medical articles that say, at least in some situations BiLevel helps with Asthma.  I do not have enough expertise with this other than to ask you to talk to your doctor about it.  The purpose is simply to further your argument for a BiLevel (I will recommend a resMed VAuto though)
https://www.tandfonline.com/doi/full/10....src=recsys
https://www.tandfonline.com/doi/abs/10.1...0902718829

Thank you.  I will make those edits.  The second article seems to indicate that some good might be done with bilevel.  
The first link uses a lot of language that's a bit beyond me.  It also seems to end with blah, blah, more study is needed, blah, blah.  At an initial glance that's not reassuring.  I'll read that one again to try to get more out of it.
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#40
RE: Looking for some help - almost 5 years and not feeling a lot better
Just tell your doc honestly, "I know the internet is a poor doctor, but on a search I've seen several medical articles talking about Asthma and BiLevels, is there any chance a BiLevel could also help with my asthma too? I don't know."
This is just trying to stack the deck to help get the VAuto.
Fred Bonjour - Project Manager and Lead Tester for OSCAR - Open Source CPAP Analysis Reporter 
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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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