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New Dx, 4 sleep studies in 3 weeks, feel left hanging with questions
#1
New Dx, 4 sleep studies in 3 weeks, feel left hanging with questions
I made a sleep doctor appointment after months of exploding head syndrome.  Baseline sleep study resulted in severe sleep apnea which was a shock. CPAP titration failed, symptoms increased with the machine maxed out.  The next study was BIPAP titration study.  It also made symptoms worse, creating centrals and they also maxed out the pressure.  The next study was a BIPAP ST.  It stopped the centrals but the hypopneas were still high. He maxed out the pressure too. The tech noted all of my hypopneas seemed to be sleep onset literally back to back all night. I had to sleep two hours longer for them to get enough info for that study.  I slept horribly during all of these studies. The tech mentioned there were no other machines except an ASV which is basically the same. When I had my follow up, the PA seemed to just go with the tech's recommendation and did not mention another machine. I asked her about sleep onset apneas and she didn't seem to really know what to say.  She said my brain is tired and doing all kinds of crazy things. Basically I was told the BiPAP ST would have to do. I got a copy of my studies. After looking them over,  I don't know how BIPAP ST was ruled a success especially if there's another machine to try that I have heard is better. I am confused as to why I would use this machine because when I look at the results, they seem to be worse with a machine than without.  I will attach screenshot of the studies.  Any help in understanding this would be so helpful. I hav been passed along to a DME who is trying to get the ST authorized.  I don't know if I should even accept this machine now. I  am wondering if I need a second opinion. 

The attachments do not include the SaO2 summaries:
Baseline:  Average 97%. Lowest 86%. 
BIPAP:  Average 95%   Lowest 85%. 175 DESATS
BIPAP ST: Average 94% Lowest 89% # of DESATS 235


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#2
RE: New Dx, 4 sleep studies in 3 weeks, feel left hanging with questions
Hang in there.  Help will be here shortly.  There's a lot of people who are loads more qualified than me to advise you.  They will help you.  I can promise that!  From what I've read so far, there are other machines that are further up the food chain, meaning more expensive and more capable, that what has been offered to you.  Remember, you are not alone here on Apnea Board.  Most of us have faced bewildering choices in treatment.  So please take some cheer in that.  Good luck with your efforts!

Ok, time for the posse to show up, 1, 2, 3,... go
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#3
RE: New Dx, 4 sleep studies in 3 weeks, feel left hanging with questions
IMHO your diagnosis should be Central Sleep Apnea.
This is not a complete sleep study.  Please include the complete study including the commentary, summary, and diagnosis in addition to the charts and tables.

The ST is not intended for the situation that you have presented here.  It Treats COPD, Neuromuscular disease (NMD), Obesity Hypoventilation Syndrome (OHS) and other respiratory conditions.  Do you have any of these?

The machine I believe that you want is the ASV, and based on the many ASV users here you specifically want the ResMed.

IMHO at this time refuse the ST and request the ASV.

The big difference is the ST always provides a fixed amount of 'support' where the ASV provides a variable amount of support only when you need it.  I suspect that on the ST you had nowhere near enough support and it was always on, a recipe for failure.



The following info is from the ResMed Sleep Lab Titration Guide

* CPAP (continuous positive airway pressure) Fixed pressure delivered with optional expiratory pressure relief (EPR). It Treats OSA
* AutoSet/APAP (automatic positive airway pressure) Automatically adjusts pressure in response to flow limitation, snore and obstructive apneas. It treats OSA
* AutoSet for Her/APAP Automatically adjusts pressure in response to flow limitation, snore and obstructive apneas along with an increased sensitivity to each flow-limited breath, providing a more comfortable therapy for women. Increases sensitivity to each flow-limited breath, providing a more comfortable therapy for women (OK for men too). It Treats OSA
* VAuto Automatically adjusts pressure in response to flow limitation, snore and obstructive apneas; Pressure Support (PS) is fixed throughout the night and can be set by the clinician. It Treats OSA, non-compliant OSA
* S (Spontaneous) Senses when the patient is inhaling and exhaling, and supplies appropriate pressures accordingly. Both treatment pressures are preset: inspiration (IPAP) and expiration (EPAP). It treats Non-compliant OSA and COPD
* ST (Spontaneous/Timed) Augments any breaths initiated by the patient, but also supplies additional breaths if the breath rate falls below the clinician’s set “backup” respiratory rate. It Treats COPD, Neuromuscular disease (NMD), Obesity Hypoventilation Syndrome (OHS) and other respiratory conditions
* T (Timed) Supplies a clinician-set respiratory rate and inspiratory/expiratory time, regardless of patient effort. It Treats COPD, Neuromuscular disease (NMD), Obesity Hypoventilation Syndrome (OHS) and other respiratory conditions
* iVAPS (intelligent Volume-Assured Pressure Support) Maintains a preset target alveolar minute ventilation by monitoring delivered ventilation, adjusting the pressure support and automatically providing an intelligent backup breath. It Treats COPD, Neuromuscular disease (NMD), Obesity Hypoventilation Syndrome (OHS) and other respiratory conditions
* ASV (adaptive servo-ventilation) Targets the patient’s minute ventilation, continually learning the patient’s breathing pattern and instantly responding to any changes. It treats Central or mixed apneas, complex sleep apnea, Periodic Breathing (PB)
* ASVAuto Provides an ASV algorithm plus expiratory positive airway pressure (EPAP) that automatically responds on the patient’s next breath to flow limitation, snore and obstructive sleep apneas. It Treats Central or mixed apneas, complex sleep apnea, Periodic Breathing (PB)
* PAC (Pressure Assist Control, also known as Pressure Control) The inspiration time is preset in the PAC mode; there is no spontaneous/flow cycling. Inspiration can be triggered by the patient when respiratory rate is above a preset value, or delivered at a set time at the backup rate. It Treats Neuromuscular disease (NMD), pediatric patients
Fred Bonjour - Project Manager and Lead Tester for OSCAR - Open Source CPAP Analysis Reporter

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#4
RE: New Dx, 4 sleep studies in 3 weeks, feel left hanging with questions
Point one, ASV is not close to being the same as the ST. So that is false. Your event count states CA at 65, 0 Obstructive, 0 mixed, and 121 Hypopnea...I'll suppose these too are Central based. Call them up and say the ASV, specifically the ResMed AirCurve 10 ASV is needed with central apnea. Your diagnosis is Central Apnea. It shows that by the CA only on the Apnea side. There is not any info discussing COPD, or other pulmonary issues, so this is incorrect. Refuse to accept or sign for an ST.

Here is a screenshot of ResMed descriptions of ASV use for CA and ST for pulmonary issues such as COPD. Doesn't it sound like they need to see this screenshot and explain why you were issued the wrong machine on purpose?

The PDF should be at this web page https://www.resmed.com/us/dam/documents/...er_eng.pdf

Image of descriptions I mentioned

   

PS the full PDF would show the attached shot I included would be page 5.
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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#5
RE: New Dx, 4 sleep studies in 3 weeks, feel left hanging with questions
Here is the rest of the Baseline study.


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#6
the rest of the BIPAP study
I have attached the rest of the BiPAP study.


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#7
RE: New Dx, 4 sleep studies in 3 weeks, feel left hanging with questions
It still comes down to the ASV is the right tool for Central Apnea and these supposed medical professionals are wrong in issuing an ST.
Dave

OSCAR
Standard OSCAR Chart Order
Mask Primer
Dealing With A DME
Soft Cervical Collar Wiki
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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#8
RE: New Dx, 4 sleep studies in 3 weeks, feel left hanging with questions
Thanks, Dave.  This is all so confusing as I got no information at my visits. I have resorted to looking online because this didn't add up just by looking at my studies. 
They said I had to go through each machine because insurance wants the last expensive tried first. 



I have no health issues other than mild high blood pressure and asthma.  I am 42.
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#9
RE: New Dx, 4 sleep studies in 3 weeks, feel left hanging with questions
Welcome.

Depending on the severity of your asthma, this may need to be considered somewhat. I can tell you that it's a circus as you jump through flaming hoops to get the right machine. If the doctor had a spine, he or she would use the study info that shows predominant CA as cause for getting an ASV. Apparently this doc doesn't want to support you by using medical evidence that your sleep study indicates the ASV is the right machine as the CA count shows. I know I had to try CPAP and BPAP and fail before I was on the ASV path. No matter what happens, make a notebook full of symptoms and complaints that you have due to apnea. Tell the doc what's going on is not solving it and it isn't acceptable. And do not accept the Respironics that the DMEs throw out there, they are ineffective for most. They cost the same to the insurance but less to the DME so there is a monetary reason most DMEs push the Respironics. This includes the newer DreamStations. They are running with old algorithms that were less effective several years ago and are still loading this ineffective algorithm today.

Make sure you have the backbone needed to state emphatically you will not accept subpar apnea treatment. Read my own road to ASV to learn what I had to fight. I'll post a link to it in a new post here. Also note that there's mainly only one advocate for your apnea treatment and that's yourself. We can help prepare but you're the one going to battle.
Dave

OSCAR
Standard OSCAR Chart Order
Mask Primer
Dealing With A DME
Soft Cervical Collar Wiki
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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#10
RE: New Dx, 4 sleep studies in 3 weeks, feel left hanging with questions
OK here's the thread. http://www.apneaboard.com/forums/Thread-...guru-input
Prepare to fight and win.
Dave

OSCAR
Standard OSCAR Chart Order
Mask Primer
Dealing With A DME
Soft Cervical Collar Wiki
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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