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Having Centrals but not Diagnosed with Centrals, also having CSR's
Angry 
Distressed
So minor update temporary update; I wasn't able to do anything regarding payment (withholding or the like) and even though my GP believes that it is as unfair, its not against the rules so to speak so I don't have a leg to stand on regarding reporting the doctor; I'm not normally one to do that sort of thing anyway but this was unique and I was tempted - but after seeking advice; I don't have anything I can complain about that is a breach of the "rules"; it doesn't change how morally wrong this situation is.

I am going to get my file from the clinic as soon as I can and find a new doctor / I am going to just request my file directly.

I have an appointment with a random sleep clinic in 2 weeks to get my results from the titration study (the study I did for a doctor that dropped me as a patient the morning after the test was completed), this doctor is a temporary once off appointment just to get the results back. I have been trying, and asking everywhere, for a recommendation from someone as to where to find a good Australian Sleep Doctor in Sydney however I have not managed to get any recommendations... I even started a thread asking for help/recommendations but haven't had any.

I've currently got my APAP setting as 8-14 EPR 3 and end up with >5x the centrals as obstructive apneas, still but its about the best; I've managed to have a couple of nights with an AHI of 3 (CAI of 2.6) which is awesome, and my current 7 day average is AHI 5.49 (CAI 3.8) which is the best I've ever had and I can't tell you what's different this week than the last as last week was (AHI's of) 11.6, 3.7, 11.3, 16.8, 5.7, 5.5, 17.6)

If I up the pressure to >=16, my OSA decreases to 0 but my HA and CA increases significantly (up to 20+ per hour)
If I lower the pressure to < 8 leads to significantly increased OSA's and HA's (up to 10+ per hour) but even at 8 I still have centrals.

[attachment=26459]

Anyway; truthfully... not coping
RE: Having Centrals but not Diagnosed with Centrals, also having CSR's
At this point, all we can do is to provide emotional support to help get you through to the next stage. You know that CPAP cannot solve the problems you have, but hopefully it makes you enough better that it is worth continuing. I forget what your baseline AHI was. There are other members of Apnea Board from AU that will hopefully be able to help with the local issues of doctors, clinics and suppliers beyond what we have already suggested. Looking back at page one of this thread, the first 3 responses from OpalRose, Bonjour and myself all suggest ASV was going to be your answer. To have the three of us agree on that point in the first posts in this thread means something, and rarely happens unless it is obvious. Your journey to comfortable and effective therapy was thwarted by an incompetent and uncaring doctor. I certainly hope that aspect is completely turned around with your next physician.
Sleeprider
Apnea Board Moderator
www.ApneaBoard.com

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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.
RE: Having Centrals but not Diagnosed with Centrals, also having CSR's
(09-12-2020, 08:00 AM)Sleeprider Wrote: At this point, all we can do is to provide emotional support to help get you through to the next stage. You know that CPAP cannot solve the problems you have, but hopefully it makes you enough better that it is worth continuing. I forget what your baseline AHI was.  There are other members of Apnea Board from AU that will hopefully be able to help with the local issues of doctors, clinics and suppliers beyond what we have already suggested.

I know; thanks, that’s all I wanted honestly; I’ve spent what I can and the supplier is out of my reach at the moment, so I just have to try and find a doctor and make it work.

Thanks for your help
RE: Having Centrals but not Diagnosed with Centrals, also having CSR's
my experiment was uncomfortable but was it a success? 

I decided to try and work on what I could, the positional aspect of my obstructive apneas, so I got 2 pillows, one of them contoured with a neck "ditch" in it, and put that on top of my normal pillow so that when I was on my side, my spine was almost straight and my head and neck position made me look like I was in the recovery position used for drowning victims etc

This left a hell of a mask pressure impression on my face which because of my Elder-Danlos syndrome it will probably scar again.

But it did prove something to me, my obstructive apnea problem is definitely heavily related to my position

& I have central apneas no matter what I do

[attachment=26487]

I also woke up and then went back to sleep on the couch for 3 hours after I got up... so we are still not there yet as I was farting like a trouper... I need a different machine... fingers crossed the new sleep doctor can help
RE: Having Centrals but not Diagnosed with Centrals, also having CSR's
Just an example of a OSA cluster followed by a RERA that could be used in a wiki 

This shows a good example of a positional OSA, followed by a RERA and then a couple of CA's to close it off, it has a movement register and both oxygenation drops and pulse rate increase matching up with the movement registered.

[attachment=26537]

[attachment=26536]
RE: Having Centrals but not Diagnosed with Centrals, also having CSR's
The results from the 12th is a big change, but the CA and other events were back on today's results.

You have EDS? I have no acquaintance with that condition, but it sounds like it complicated wearing a mask and anything that can exert pressure. You're full of surprises, and they don't make figuring out solutions any easier.
Sleeprider
Apnea Board Moderator
www.ApneaBoard.com

____________________________________________
Download OSCAR Software
Soft Cervical Collar
Optimizing Therapy
Organize your OSCAR Charts
Attaching Files
Mask Primer
How To Deal With Equipment Supplier


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.
RE: Having Centrals but not Diagnosed with Centrals, also having CSR's
(09-13-2020, 09:48 PM)Sleeprider Wrote: The results from the 12th is a big change, but the CA and other events were back on today's results.  

You have EDS? I have no acquaintance with that condition, but it sounds like it complicated wearing a mask and anything that can exert pressure.  You're full of surprises, and they don't make figuring out solutions any easier.

The results from the 12th were unique; I don’t think I can replicate that again; the position in bed caused pressure on my skin that caused my cheek and nose skin to tear, bruises up and down my back & even though the score was good I still slept an extra 3+ hours on the couch so... great result - just not repeatable/sustainable.

Yeah EDS is another one of the many conditions they think I have, I scored 8 or 9 in the observational test and they are going to skin biopsy me to verify it.

I realised something from it... everything OSA... is about position for me. 

I am a small guy, 5’10 (179cm) 190 pounds (87.5kg) - it’s been suggested that it’s the EDS causing me to have sleep apnea... there is a lack of strength in the ligaments and Cartlidge in my throat that isn’t strong enough to hold it open under the weight of my skull when I sleep at the “wrong angle” (broad statement). 

So if I sleep with tools to put me into a position (Takes 2 pillows one contoured, a travel pillow and a wedge) I don’t have any OSA and minimal CA’s (Only CA’s); but it comes with concessions like being in pain all day, scars and bruises from the pressure caused skin tears and I still can’t get enough sleep so I fall asleep again every morning right after my shower, and sleep until up to 1pm... 

And no matter what I do I have Centrals but in the recovery position with a low pressure I can reduce them to 1 per hour - however that’s happened once in 349 days.

Anyway, the new Rheumatologist/Pain specialist I saw last week for the first time suggested the EDS could be causing a lot of the issues I have - including being involved in my causing my OSA -  no-one else has brought this up before even though I’ve used the stretchy skin as a party trick for years & I taught yoga, but as I got sick with Fibromyalgia... and my parents died... I became... very deconditioned physically and subsequently mentally and now I am in the place that I am in where...

I’m on my 3rd pulmonologist, 4th gastroenterologist, 2nd neurologist, 5th shrink, 3rd Rheumatologist and 2nd pain Specialist..  because everyone says in the end that “you are too complicated” and they give up on me. 

I’m trying little things like the test of position and trying to be positive but I’m giving up inside a tiny price each day
RE: Having Centrals but not Diagnosed with Centrals, also having CSR's
If you have pain and other conditions pain medication can have a marked impact on you breathing at night and also cause central anoea’s making managent difficult with other conditions going on in ones life your Heath needs to be taken as a whole
RE: Having Centrals but not Diagnosed with Centrals, also having CSR's
(09-14-2020, 12:50 AM)jaswilliams Wrote: If you have pain and other conditions pain medication can have a marked impact on you breathing at night and also cause central anoea’s making managent difficult with other conditions going on in ones life your Heath needs to be taken as a whole

I’m guessing that’s my problem; too many overlapping illnesses & to many specialists and no one answer.

As much as I try, specialists don’t really listen to you; or read the documents you give them from other specialists so it’s proving impossible to coordinate and get treatment.

Honestly...It’s getting to much.
RE: Having Centrals but not Diagnosed with Centrals, also having CSR's
If you take pain medication with opiates, or that act on the CNS it would further explain the centrals you experience and my justify the ASV prescription. Your experiment with positions, although painful, was a good learning experience, and the objective needs to be to use gentler positional aids to get some relief. If we can move you to ASV it may even help take care of some of these positional issues since the pressure support should work to move flexible and pliable obstruction, but I honestly have no experience with this. Are these complications involved in why the last doctor quit?
Sleeprider
Apnea Board Moderator
www.ApneaBoard.com

____________________________________________
Download OSCAR Software
Soft Cervical Collar
Optimizing Therapy
Organize your OSCAR Charts
Attaching Files
Mask Primer
How To Deal With Equipment Supplier


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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