URGENT - sleep doctor appointment this morning - pressure settings?

I realise this is way too early for anyone on the other side of the pond but am hoping someone somewhere might have a view on this before I set out.

My pressure spread is 10-20 atm. It was whacked up from 6-17 by the tech when I said I felt I needed more inbreath and out-breath. If I was self-titrating, what might be a reasonable point to start? the tech was just using pure guesswork. Their explanation for such big pressure spread was that that os just how they do things. That is because most of their patients have a chronic lung condition. I don't. I do not need ventilation.
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All this on the understanding that I will take the doc's word as final.

I have never been titrated btw.

Leaving the high setting high is usually not a big deal, it's the low one that makes most of the difference, but your tech having suggested you make such a big jump, from 6 to 10 in one go was not a great idea as you don't know what's what now. You could always try e.g. 8 and see how it goes, but we certainly can't magically make guesses without something to go on. And how you feel has some bearing of course, but unless you have some reason to feel leaving the high setting at 20 is problematic, I'd leave it alone.

Changing set pressures a lot can cause more problems than it solves for someone whose body needs to get used to something consistent for a while. But if you are looking for principles, the following is my understanding. You want your EPAP high enough to prevent obstructive apneas AND be comfortable for you. My understanding is that an EPAP of 10cm should get obstructive apneas mostly out of the picture for the majority of the population. The spread between IPAP and EPAP should be large enough to help with work of breathing, if that is something you need--but it should not be so large as to wash out CO2 and cause consistent significant centrals that never go away. If all of that can't be well balanced over time with the machine you now have, then that may be the ultimate argument for ASV. But limb movements have the potential to be the larger disturbance to your sleep and may make figuring out breathing difficult until that is addressed. All that I have said above is nothing more than mere head knowledge of a fellow patient (me) with no medical training who still presumes to post on such matters on the Internet.

Hey guys and gals.

His machine is a fixed bilevel machine with a back up rate. Assuming it is in S/T mode. It can't auto adjust anything.
Per another thread he has central apnea and not obstructive apnea.
The spread between epap and ipap with this machine is in this instance supposed to keep him breathing when he was a central apnea (we have no idea what might be causing the central apnea). Essentially it is supposed to be acting like a ventilator.
Per the Encore reports the settings that they guessed at aren't doing a good job..not even a half assed job. CA flags numbers are very high most of the time.

He really needs to have an in lab titration to figure out exactly what pressure spread and at what rate will take care of his central apnea if they are going to use a fixed pressure machine.
Alternately if they are going to guess at things they should give him a machine that will/can auto adjust like the ASV models. At least then the machine would be doing some educated guessing and responding.

His EPAP is 10 and IPAP is 20 so that means his Pressure support is 10 and from the looks of the reports and also how he reports he is feeling....not getting the job done and there's the possibility that the constant PS of 10 is actually adding to the centrals by causing more of them. I think the back up rate might be 10. Hard to tell with these reports and Encore.
He might need more PS...on the ASV machines PS can auto adjust as needed and maybe he needs more PS sometimes and not other times. I don't know how much PS is needed in his situation...no one knows because know one has done anything but guess and use settings designed to help people with lung issues and not central issues.

Chalkie....if the doctor won't do an in lab titration...at least see if they will let you try a real ASV machine designed to respond to the centrals only when they are needed and not be having you maybe hyperventilate with the constant PS of 10 and the fixed settings you are using now.

Your current machine can be used to treat central apnea but only after the titration study points them to the exact settings that you need for your current situation. If they can't/won't do that then they need to give you a machine that can pretty much do it for them.
All this is of course...my opinion. Central apnea can be treated but not by guessing at settings on a fixed pressure machine and guessing at the back up rate needed.

I had assumed some obstructive component was complicating things for the docs.

Chalkie on Feb. 10 wrote:I . . . have complex sleep apnea. -- viewtopic.php?f=1&t=158588&p=1221156#p1221156

But maybe he meant "central" instead of "complex."

He also hinted at perceived lung issues, I think, in that thread.

jnk... wrote: ↑

Wed May 30, 2018 7:36 am

I had assumed some obstructive component was complicating things for the docs.

Chalkie on Feb. 10 wrote:I . . . have complex sleep apnea. -- viewtopic.php?f=1&t=158588&p=1221156#p1221156

But maybe he meant "central" instead of "complex."

He also hinted at perceived lung issues, I think, in that thread.

Based on this
viewtopic.php?f=1&t=171641&p=1251393#p1251393

OSA was negligible (<1 per hour) but PLMD arousals were sky high.

I am guessing it coincided with worryingly long centrals, which while quite few (about six per hour)

And yes, I know that some lung issues were hinted at but there is some sort of other syndrome that I don't really know much about.

But....no OSA and centrals at 6 per hour and some PLMD issues per the sleep study...his centrals per hour on the machine are in the 20s and 30s....the machine is making it worse in terms of the number of centrals and how he feels. There never has been many obstructive events flagged by his machine and the few that were could have been post arousal SWJ flags. I don't think obstructive is the main problem.
I know he mentioned complex apnea in the past but based on the sleep study...not complex.
How much of an impact the PLMD might be having masking OSA stuff....unknown but wouldn't be impossible but again from what I have seen on the software reports they were never really an issue even back when EPAP was at 6. They have always been very minimal and look more like SWJ than real OAs in what few were flagged.

I have never felt comfortable advising specific pressure settings alterations with Chalkie because I didn't have the whole picture and I knew it wasn't a simple picture. Especially when he hinted at lung issues in the past and the syndrome that I know nothing about and the fact that he was never comfortable changing anything and preferred to leave it in the hands of his medical care team.
Wasn't much sense in me learning about his syndrome because he didn't want to change anything anyway.

All I know is that he's apparently worse on this machine at the current settings. Somebody on his medical care team needs to get their crap together and figure out what to do or give him a machine that can do everything and let the machine sort it out.

I respect and agree with everything you said and have said to him.

But I did ignore the "OSA negligible," assuming that meant while using PAP. I don't know what value a PLMD evaluation without PAP would be for a PAP user. But frankly most everything that goes on across the pond confuses me with this kind of stuff.

I especially agree with your choice not to offer specific pressure ideas under the circumstances.

For some, ASV is a luxury. For others, anything less seems cruel and unusual.

jnk... wrote: ↑

Wed May 30, 2018 8:35 am

But I did ignore the "OSA negligible," assuming that meant while using PAP.

Pretty sure the sleep study (with the OSA negligible) mentioned is a diagnostic sleep study without cpap since he has said in the past that no titration study was ever done.

What I gathered from the diagnostic sleep study...which is the first I have actually seen about the results and there's gotta be more to it than what we were told.

Central apnea of 6 per hour average
High number of PLMD scored events...now did they cause awakenings...don't know from the information given.
Negligible OSA events. Now of course sometimes a high PLMD can mask Obstructive stuff...so there's always that remote possibility but I just don't see it on the reports that I have from Encore.
And we know that cpap/whatever pap doesn't really help PLMD unless the PLMD is made worse by the apnea stuff.
But at this point his apnea stuff is worse on the machine than off and there's zero way to evaluate the PLMD stuff at home to see if cpap impacts it at all.

It's a big mess and made worse by the medical care team guessing.

Hopefully the doctor he saw today actually has a clue where to start in dealing with Chalkie's issues.

I just posted above: "I don't know what value a PLMD evaluation without PAP would be for a PAP user. But frankly most everything that goes on across the pond confuses me with this kind of stuff."

My understanding has always been that airway issues need to be titrated away before an accurate picture of limb-movement issues can be ascertained. But just as you say, if there is no significant obstruction issue, maybe it made sense to them to do a diagnostic without PAP. I still find that concept problematic, though, since PAP can interact with limb-movement problems either as an unmasking or as a cause, as I understand it. If someone is a PAP user, who cares what his limb movements are off PAP? I guess they do. Are they allergic to titrations over there, or something?

jnk... wrote: ↑

Wed May 30, 2018 8:54 am

Are they allergic to titrations over there, or something?

It's the NHS and they are allergic to anything that costs more money and speedy isn't in their vocabulary.
There is the private sector option but that costs a lot more money and not everyone can afford it.

At least he had an in lab diagnostic sleep study apparently because of the PLMD mention which isn't normally mentioned in home study reports as they don't normally do leg leads on home studies.

Hell...for all we know the PLMD might be the primary issue in terms of his crappy sleep and if it were addressed who knows what he would need. I do know the bulk of the centrals on the Encore reports appear real to me..not SWJ centrals or post arousal centrals.

jnk wrote:

"Are they allergic to titrations over there, or something?"

'Over there' is a whole country - and while there are national guidelines, what happens in any one area can and does vary.

There are 150 foundation trust hopitals in the UK, each with its own catchment area. And not every FT hospital has a sleep lab – although most do. The hospital whose sleep medicine department I go to has one, for example.

And while only one in ten diagnostic sleep studies in the NHS is done in a hospital sleep lab, there is nothing to prevent the consultant (a) requesting a 'titration' session.

If the hospital doesn't have its own sleep lab, the doctor can (b) cross-refer to any other FT hospital that does have a sleep lab - via an 'extra contractual referral'. But that does take extra paperwork, and will show up as an extra item on the budget.

It is also within the remit of an NHS consultant to (c) send a patient out to one of the private labs, with the NHS paying for it.

All three are possible - if the consultant thinks it is clinically necessary.

So no allergy ... just, it would appear in this case, hesitancy.

The systems for health care in the U.S. are far from perfect, so my facetious comment was not intended to imply superiority. But for sleep, approaches in the UK sometimes confuse me more than some approaches in continental Europe.

Thanks for your educational explanatory comments, Mr. Blaine.

Thanks for all the replies.
I now have in my possession two very detailed sleep study reports. The in-lab study from three years ago and the machine data going back six months.

The doctor upped my pressures today to 12-22. Seeing her again in three months. Advised me to persevere with a new mask. It states clearly in the summary of the report that leak rates are too high and that is obvious from the SD card data.

The change from 6-17 to 10-20 took place on 27 March. An improvement in AHI ensued in April and May.

It is obvious though that the PLM is very severe. Over 50 is severe for PLM and my score was over 100.

It appears from the data that my apnea was almost well controlled until December 2017. And since I saw her in November what she told me about ti being well controled was obviously true. She was quite clear today that the stats show it is now not well controlled.

The 2015 in-lab study also shows apnea bordering on well-controlled then.

I am told the NHS locally does not do titrations.

However I would like one to be to done and will ask for a referral to a tertiary centre in three months.

Another big question is why my AHI shot up at the end of last year. I also experienced a subjective increase in tiredness then.

I started benzo w/d on 3 November 2017. Micro cuts totalling less than 5% of my total dose over the month. Suddenly my AHI shoots up in November and again in December, plateauing in January, No other variables changed that I can think of. I think this is very significant info for anyone on benzos. Surely it is the w/d process itself rather than a tiny reduction in the dose that accounts for the difference. Lots to consider.

https://imgur.com/a/Al3I2w1

https://imgur.com/a/tymCHuW

EDIT: I was wearing PAP during the PLMD study. Also zonked out on sleeping pills as it is so hard to sleep there so that may have distorted results.