Hosed up for 6 weeks now

[Gideon]

Keep in mind that fixed pressure requires adjustments to dial it in.

Rule of thumb is to raise pressure for obstructive events and lower it for .ca events. Please download the latest SleepyHead as some earlier versions did not show exhalation pressure on the pressure chart as you are not

[Sleeprider]

You mentioned "potential health implications" for ASV as being a concern for you. I want you to understand that ASV does not cause problems or imply that oyu have any health conditions other than central or complex apnea. For a very small cohort of heart failure patients with left ventricular ejection factor less than 45%, there is an increased risk of sudden cardiac death. Without seeming too blunt, the prognosis for these individuals in inevitably terminal regardless of ASV use, but since one study found an increased risk, it has become a disqualifying condition for ASV therapy.

That said, ASV works to improve the health and lives of most people using it. They no longer suffer the consequences of untreated central apnea, periodic breathing and the chronic oxygen deprivation. You have achieved remarkably improved results on CPAP that exceeded my expectations from when you first joined. I think I suggested we could optimize CPAP to form a bridge to ASV, but that eventually ASV would be your answer. The progress you have made, and the results you experience night to night will not be predictable or reliable with complex apnea treated with CPAP. With ASV, you can pretty much count on your AHI being nearly eliminated.

[Swisssleeper]

Hi Sleeprider,

yeah making good progress so far and hopefully better to come!

Thanks for your explanation although I am not worried about the health implications to me its more being able to get a machine without going through all the screening and would they give me one if I didn't? I am a relatively fit 37 year old so I don't have a major concern on that side but what I do have with a concern with that the doctor will see the results and now really wont address the CA events. I am very lucky that I could consider buying my own but I would rather have it through the insurance (it costs me enough lol).

I would love to get my AHI down to nearly zero and having a restful night is now a reality, given that I am starting to understand the whole process more.

Appreciate the input :-)

[SarcasticDave94]

Swisssleeper,
A sincere best wishes for you. I represent the long drawn out process to get an ASV. Although my path is actually more the normal path than it seems here in the USA. For insurance to pay, I had to fail CPAP and BiPAP before getting ASV and I had to have a PSG (sleep study) for each machine. My path started in 2015 and ended when I got an ASV one month ago. Don't get me wrong, it was well worth all the effort. My AHI numbers were in the 70's as best as I remember when I started on CPAP. Now I'm under 5 on average. Consider too that my COPD is worsening and I've lost 100 pounds via bariatric surgery.

OK besides all that, keep up the good work in making CPAP help you. Eventually, as in hopefully sooner, you'll find a way onto ASV. Don't be afraid to complain a bit, if legitimate of course. I had to keep addressing my CPAP and BiPAP therapy failures for 2 years before the Duck (pulmonary doctor) would address this. Here's hoping you get answers faster. Stick with it.

Dave B.

[Sleeprider]

The recent use of echocardiogram screening for LVEF has only occurred since the Resmed study identified a statistically significant risk for people with congestive heart failure and LVEF <45%. Before that, ASV was considered a miracle treatment for congestive heart failure patients and others with central apnea. It is a classic case of "CYA" (cover your ass) in which many people who can benefit from the therapy are deprived of it or incur higher costs due to this rare concern. The question that was not answered is how many people die or are injured for not getting the therapy.

I believe this study will eventually be debunked, or the reasons for higher risk to that small study cohort will be identified and mitigated. I just can't imagine that it is better for someone to have continuous Cheyne Stokes respiration and central apnea every night (AHI 30-60+) so they can be protected from the potential for a cardiac event. As I said, those people are terminal anyway. Your health is a completely different story, but because a risk exists, I'm sure most doctors will screen you for that risk. As I said, CYA.

[SarcasticDave94]

I agree sleeprider. Although I passed testing to obtain an ASV, the jury is still out in my case of how healthy the heart is. Maybe it's only a case of high blood pressure. Maybe. My family has a cardiac problem history. I do have palpitations at times FWIW. Still I feel confident an ASV machine isn't hurting me.

As with anything, go into it armed with knowledge.

[swift]

Sounds like you just need a new mask

[Chicago]

Your graphs look very similar to mine just with slightly more AHI.

[Swisssleeper]

Hi all,

Resurrecting the thread as to update you on my progress. Well I have purposely not adjusted the settings, I am mad (well yes) but there is method to the madness, my sleep tech says that with the progress I have made she is over the moon and its a real success. On the face of it I suppose I have made great progress from when I first started treatment, So by not adjusting to make it as "good as it can be" it gives a true reflection on the treatment given,, hopefully leading to that maybe this isn't the correct treatment for me.

My events are completely inconsistent going from a great night of AHI of around 2.5 to the next night at above 20 and feeling shattered the next day (today is one of those days). I am meeting with the sleep tech later to get an update and try the Resmed Mini for my travels, whilst its not a major deal taking the Airsense 10 I would like a smaller option for the 1-2 night stays, I also would like a second machine for my home in the UK but don't want to buy until I am all sorted, I digress sorry.

So last time I met 6 weeks ago she says that she agrees I have more than usual events but as the events don't go above 20 seconds and most are 10-15 she isn't concerned and the treatment is working (really!!!). I argue this but she says she would like another six weeks data before moving on, so here we go I am seeing her today. I am feeling a bit grumpy because I am tired and frustrated that they don't seem to take the fact that I have inconsistent nights seriously!

I know this is a fairly consistent thing in this industry but I am struggling to understand why? if someone isnt getting the right treatment why is it a battle to make them realise this? I attach sleepy head below so you can see the inconsistency and as always your thoughts and opinions really are appreciated.

Oh and as for the comment I just need a new mask above, I wish it was that simple

 

[Sleeprider]

I am just delighted with your treatment....because it isn't mine. 

You and I know what you really need. Good luck convincing someone who thinks this is acceptable medical treatment.