Retitration Reduction Advice

[EnlightenMe]

Hello!

My first titration was 10/2020. My first mask was a nasal pillow mask that was fine at first, but after a couple of weeks really started to irritate my skin AND was irritating my eyes (port in front) so I went to the ResMed N30i (port on top of head). In theory, it worked MUCH better. In practice, I was waking up every time the seal broke (I'm a side sleeper) so my sleep was more broken.

I stopped using the CPAP after about a year. because it just didn't seem to be helping My doctor's been bugging me to start using it again, so I had a retitration done and tried a few different masks. The one that worked the best was the Respironics Pico (though I'd probably go with a similar mask from ResMed).

The question I have is this: my AHI went from a 6.4 to a 0.5 which I understand is subtheraputic level. I've lost over 15 pounds, so that could possibly be a factor, though I could still stand to lose about 20 more to get to an ideal weight for me - which is about 10 pounds more than my "fit" weight as a much younger person). And insomnia is no longer a frequent visitor thanks to mental health therapy. Yet the Diagnosis is still Obstructive Sleep Apnea.

I have an appointment with the doc to review my results in a couple of days and would like to have questions ready for him. Here are some of my key stats (2020 / 2023):

Age .....................................59 / 61
Weight .................................n+16.4# / n
Apneic Episodes ......................28 /
Total Sleep Time .....................262 /
.....Supine ............................35 /
AHI ......................................6.4 / 0.5
.....NREM AHI .........................6.3 / 0.5
.....REM AHI ...........................7.5 / NA
.....AHI .................................0.0 / 0.0......(hypopneas w/ 4% desat)
Respiratory Disturbance Index .....6.4 / 0.5
.....Obstructive Apnea Index .......0.0 / 0.0
.....Central Apnea Index ............0.2 / 0.0
.....Hypopnea Index .................6.4 / 0.5
.....RERA Index .......................0.0 / 0.5
Mean Sleep % SPO2 ..................94 / 95
Min % SPO2 ............................91 / 92
Additional Apenic events
during wake epochs .................4 / 6

Sleep Efficiency was pretty much the same with these variances:

Stage R Sleep: .......................9.2 / 0.0
Stage R EMG Variance Score: ......6.25 / NA

Sleep Position:

Supine: ...............................35 / 35
Left: ..................................0 / 33
Right: .................................227 /171

I don't sleep on my back often (so the test results above are accurate to my true sleep patterns), but I DO infrequently find myself startling awake with a sudden somewhat "strangled" intake of breath. - always when I'm on my back. The questions I have for my doctor would be these:

• Is there really benefit to going back on CPAP since my AHI is subtherapeutic?
• Could a single apneic event like I infrequently experience actually kill me?
• Could losing more weight and becoming more fit help or does the natural process of aging cancel that out?

Can anyone think of anything else I should ask based on what you see above? Anyone have a similar experience with retitration?

Thanks in Advance!

[Miss Emerita]

Welcome! You refer to "titration," but the numbers you give appear to be from a sleep test. Could you clarify whether the numbers were generated when you were using a mask and PAP machine? (A titration would be with a mask and machine, aiming to find the best machine settings for you.)

[Julie]

Download Oscar (see Stickies top of pg) and follow instructions re posting which graphs, etc. - ditch the calendar tho' - and to post in this thread (plse) use Imgur.com for results and link them to here (the forum's out of posting room) so experts can see what's what and suggest any fixes needed.

[EnlightenMe]

My hospital/clinic refers to it as a (re)titration, and is analogous to a sleep test. I would have thought the data I provided and the fact that I said I tried a few different masks would have made it clear that I was using both a mask and machine. Even my very first one was referred to as a titration by medical personnel.

The purpose of this new test was to try to find a more tolerable mask, as I mentioned, but it was run as a full sleep study.

I haven't used my home CPAP in over a year, so my OSCAR numbers from then aren't germane to my question. I don't see how they could be helpful.

Leslie

[EnlightenMe]

Also, I've never heard of a sleep study being done without a mask and CPAP/APAP/BiPAP. Every single person I know who's been evaluated has used a mask and machine during the test. Is that not the whole purpose? Apologize for my ignorance if not.

Leslie

[ozij]

Also, I've never heard of a sleep study being done without a mask and CPAP/APAP/BiPAP.

A sleep study is done to evaluate your sleep.
I've heard of many people, myself included, who had a sleep study without a mask and CPAP/APAP/BiPAP.

Once the diagnosis is "sleep is messing up with your breathing" a titration is run, in which you are given a mask, connected to a Positive Air Pressure machine, and a certified sleep technician changes the pressure supplied gradually, in order to find the pressure that serves you best.

Are you reporting numbers with Positive Air Pressure supplied?
xPAP therapy does not "heal" sleep apnea. If those new numbers are at pressure, thet're great and mean you should keep using your machine and the pressure they recommend.
Just like with glasses or a hearing aid.

[palerider]

Also, I've never heard of a sleep study being done without a mask and CPAP/APAP/BiPAP. Every single person I know who's been evaluated has used a mask and machine during the test. Is that not the whole purpose? Apologize for my ignorance if not.

Leslie

A sleep study is done without a machine, or mask, in order to test your sleep.

A "titration" is done with a mask and machine in order to determine what pressures one needs to alleviate the issues diagnosed in the sleep study..

[chunkyfrog]

My first sleep study was diagnostic, with no cpap.
My second sleep study was titration with a cpap machine.
Diagnostic vs titration.
Even medical professionals are prone to errors in terminology.
They just do the job; communication is optional.

[Miss Emerita]

So in the first test, where your AHI was 6.4, they were unable to titrate you to a better AHI? I wonder whether instead the 6.4 represents your AHI without machine/mask.

At any rate, your more recent test showed a terrific AHI while you were using a PAP machine. Maybe part of your question is whether that means you'd still have a terrific AHI without using a machine. The answer to that is: we don't know. The only way to find out is to have a sleep study, i.e., a study done without use of a machine.

It's possible that weight loss might make a difference to whether you need PAP, but again, there's no way to know without a sleep study (without use of a machine). And yes, in general apnea is more common among older people, partly because the tissues lining the airway become more flaccid as we age. But younger people can also have apnea.

I have never heard of a single apnea event killing anyone. Sleep apnea raises the risks of several serious chronic diseases, and it leads to negative changes in everyday life, including loss of cognitive ability, irritability, and gloominess, as well sleepiness.

[EnlightenMe]

Thanks Everyone.

So I WAS confused because the docs used "sleep test" and "titration" Interchangeably.

This morning before my appt, I got my test results in the mail that they supposedly mailed on the 13th (actually mailed on the 17th) BUT they didn't send me the new results, just the old. But what they did send me that I didn't already have was my initial test that I had forgotten about WITHOUT the mask or machine. So, yeah, my head was all befuddled. Apologies. The AHI on that was 13.6.

To answer Miss Emerita's question - the 6.something was with the mask. And of course, the 0.5 I got a couple of weeks ago was WITH the mask as well, so it wasn't my baseline and therefore not subtherapeutic - it was my "corrected" AHI with the CPAP. (I was VERY confused - but in my defense, my memory was probably suffering pandemic fog since my first tests were in the thick of it. Yikes.)

So the plan is to move ahead with CPAP (I had been on APAP but he wants me to try continuous pressure) once I finish my migraine study in 3 months (can't make major change during that) and get my new mask.

Thanks again for your help! Sorry for the confusion.

[ozij]

Thanks again for your help! Sorry for the confusion.

Many of us have been confused, and learned from others on this forum!

So the plan is to move ahead with CPAP (I had been on APAP but he wants me to try continuous pressure)

I believe the term you want is "fixed pressure", that is, one specific pressure, not auto adjusting.

So the plan is to move ahead with CPAP (I had been on APAP but he wants me to try continuous pressure) once I finish my migraine study in 3 months (can't make major change during that) and get my new mask.

Whyever not? Suppose CPAP on fixed pressure is what all you need to solve your migraines? It had done so for many (haven't looked for a peer reviewed study - I would if I were you).
Can't you put the migraine study on hold for a month while you try to new CPAP recommendation (pressure and mask)?

[EnlightenMe]

Thanks for the terminology!

Re: migraines:

My migraines didn't disappear when I was on CPAP before. And the morning after the titration I had a migraine that I think was triggered by the test, which might very well not be a problem once I get used to it again, or could be attributed to general lack of sleep that night.

When you're in a clinical study, you don't want to do anything that might affect the outcome of the study - you want to limit the variables as much as possible. I don't have a problem with postponing going back on CPAP. Once you've started a clinical study there is no "putting it on hold". You either leave the study or you postpone any decisions that are not approved by the study. Obviously, if I had something acute and critical I wouldn't put it off. But this isn't that.

Remember that every body is different. Just because your migraines disappeared once starting CPAP doesn't mean everyone's will.

I looked up a few clinical studies. This one "could not demonstrate a statistically significant relationship between headache, AHI, and minimal oxygen saturation in our patients with SAS."
https://pubmed.ncbi.nlm.nih.gov/15186305/

Other studies show similar results.

Your experience seems to be anecdotal, but I didn't do an extensive search. They may be some studies that support the theory that CPAP helps ease migraine headaches.

[ozij]

When you're in a clinical study, you don't want to do anything that might affect the outcome of the study - you want to limit the variables as much as possible

I missed the fact that you're participating in clinical study - of course you can't stop that temporarily, and of course you want to limit the variables.

Remember that every body is different.

Right.

Just because your migraines disappeared once starting CPAP doesn't mean everyone's will.

Never had any migraines - fortunately.
One of the reasons most of us came to this forum is to see what about our therapy can be changed to make it fit our very specific personal situation.
And we stay because we were helped and want to help others.

Every now and then someone will come along clattering on their hobby horse, generating noise and attention, until they get bored. By reading with attention you'll eventually find out who was reading you with attention, and whose advice is worth listening to.
Good luck with the migraines study, and good luck with your future CPAP therapy!