SOS Urgent : Request for Analysis of My Data Please

[Anewser]

Hello everybody  ,

I need your urgent help for an analysis of my results please.

I have severe OSA with an AHI of 32/h without a machine.
I have been using a Prisma Smart CPAP (pressure 5 – 9) + humidifier for 2 years, knowing that I am new to using the Oscar software.

Even with the machine, I continue to have extreme fatigue and severe symptoms, although it is essential for me to “sleep” and recover a little. I am a 33 year old woman and I have not had a life for 16 years with the total impossibility of working or even driving, knowing that I live with my elderly parents on whom I am dependent.

My nights almost always follow the same cycle, regardless of the times I go to bed:
- 1st part of the night : I always get 4-5 hours of sleep with few apneas and a clear nose.
- 2nd part of the night : I systematically wake up with one nostril out of two mouthfuls (alternating), and the impossibility of going back to sleep because I'm suffocating = I have a series of apneas and micro-arousals. If I insist on trying to go back to sleep, it causes debilitating migraines/neck pain.

I thought my problems only came from my half-blocked nose. But I saw the video by TheLankyLefty27 titled “Your Doctor doesn’t know THIS about UARS! Truth about Upper Airway Resistance Syndrome” https://www.youtube.com/watch?v=MLp-amlTa2w . I also read this guide page for oscar : https://www.apneaboard.com/wiki/index.ph..._The_Guide .

Looking at my results, I noticed that I have very few inspiration curves that look normal even when I'm sound asleep. My inspirations very rarely have a bell shape. They look more like either double peaks, or flat pieces just after a peak, etc.

I have attached in this message several screens from a night for which I need your expertise knowing that I wore a Ring O2 as an oximeter. I also posted a video of a few minutes of that night here so you can see my whole curve much better :
https://drive.google.com/file/d/1LeMLhOg...sp=sharing

The big cut you see around 2:20 p.m. typically corresponds to the cut I make when my nose is blocked and I get up to try to unblock it (in vain). Sorry, I don't remember what time I woke up last night. Note that I go to bed extremely late, because by only sleeping 4-5 hours maximum, I am unable to regulate myself over a 24-hour schedule. Even when I go to bed at normal times, my problems remain the same.

- Could you please tell me what you think, particularly for these first night games ? Have you noticed any anomalies ? Should I change machines like in TheLankyLeftyLefty27's video?
- Do you think that i suffer of "Upper airway resistance syndrome (UARS)" ?

It's urgent, because I have just made an appointment with my pulmonologist and I will be able to see him exceptionally on Thursday, knowing that he was not free before 6-12 months of waiting.

I intend to come to his house with my computer to show him some of my plots with Oscar but I lack the knowledge, the time, and I am still a little lost in providing him with arguments.


Other information about me:
- I saw 3 ENT specialists = I had 3 nasoscopies + 1 endoscopy under induced sleep + 1 sinus scan and other exams.

Summary: my apneas come from my base of tongue being too big which falls and closes my breathing passages knowing (I have lower mandibular retrognathia). I have no problem with the palate, I have large non-obstructing tonsils. Nasal level no problem, except that obviously I always had all the ENT exams with my nose clear. I had a radiofrequency of the lower turbinates which did not solve the problem (although I breathed better during the day for a few weeks).
The ENTs don't know why my nose is half blocked every night and the problem is not allergic.

- I have a very difficult health history with medical errors. I was detected "only" 3 years ago by my severe apnea, but I had to completely stop the machine for 1 year, because from the 2nd night of testing it caused me a very serious shock in one eye due to a big leak of cold and dry air with a mask that was way too big. Since this single shock, I have had uveitis in both eyes which has recurred and which has already caused me irreversible after-effects with cataract surgery in both eyes, knowing that I have never had a vision problem before except for myopia. normal.
I always wear swimming goggles + protective cream to prevent damage from any mask leaks and it works for now.

- I have a syndrome that is still very little known called « hereditary alpha-tryptasemia syndrome ». This means that my mast cells (immune system cells) produce too much tryptase and this gives symptoms very similar to those encountered in people with SAMA, mixed with my OSAHS symptoms.


Sorry I know my message is very long for the first time. Also as I am French and not bilingual, I use a translator to write and understand you. Sorry if there are some mistakes in my sentences.

Thank you very much in advance for your help

[SarcasticDave94]

Welcome to Apnea Board,

From what I'm seeing, there's a bit of residual events that we normally may not need to adjust therapy to make it better. In your case however, due to your desire for it to be better, I would consider editing Min pressure from 5 up to 6, and Max up 1 as well to 10 for now. The main goal is comfort increases.

[Anewser]

Thank you for your reply SarcasticDave94,


I will give you the report of my appointment with my pulmonologist,

He agrees to temporarily test a bipap although I do not correspond to the typical profile for this machine.

He told me to be very careful because many events that we believe to be abnormal micro-arousals when looking at the curves of the machine, can be confused with normal events during sleep.

For example, he told me that when we swallow saliva while sleeping, or when we have a little cough during sleep, etc., it can give rise to curves that panic without this having any real impact on the sleep. The average threshold to see if these events are micro-arousals or not is to do an EEG (electroencephalogram) test or see if there is a drop in oxygen saturation during these events.

Concerning the shape of my inspiratory curves, I brought my computer with Oscar + my data + the diagram that I attached to this message and I did random zooms on the respiratory flow of one of my nights. He told me that some of my inspiratory curves actually had a plateau shape, while others were completely normal. It was just enough to bother him a little, but not enough to see an obvious problem. I wore an O2 ring at night which I showed him and he did not see a drop in oxygen saturation during sleep.

I also told him that my jaw systematically drops during sleep and I cannot sleep with my mouth open, but that I have gotten into the habit since adolescence of blocking it with clothes. He would like me to talk to an orthodontist who I am going to see at the end of August for a mandibular advancement orthosis, to see if I have any abnormalities in my jaw. I already know that I have lower mandibular retrograde.

He also told me that changing the machine + orthosis will not solve my blocked nose problems but I already knew that.

[Deborah K.]

Since your doctor is willing to try a bipap/bi-level, ask for a ResMed Aircurve 10 Vauto machine.  These are the best.

Also, most folks here have had bad results using a mandibular device.  Some folks here wear a soft cervical collar to hold their jaw up, and others tape their mouth closed.  Good luck!

[Dormeo]

Your pulmonologist sounds helpful. Might he agree to arrange a full polysomnography test for you? That would provide the best possible insight into your sleep.

I don't think you were asleep during the the three snippets you provided in that one image. I recommend that you do some more zoomed-in scrolling of your flow rate so you can identify your normal asleep breathing.

What settings does the pulmonologist proposed that you use during your trial of the bi-level machine? In general, the best tool for addressing flow limitations is a breath-by-breath differential between inhalation pressure and exhalation pressure. A bi-level machine can provide more of this pressure support than a regular machine.

You have some capacity on your current machine for pressure support. It's called SoftPap mode, so you might want to turn that on.

If your jaw falls open during the night, you might try a soft cervical collar.

[Anewser]

Thank you very much Deborah.K. It's because I read one of your answers on another subject concerning this machine where you recommended it, that I asked for this same machine the day before yesterday. And my service provider is ok (they have it in stock).

And really, thank you very much to everyone for your interventions in this forum. Share very valuable information with you.

Dormeo, for my pulmonologist, it really varies   . Last year, I asked him to take a polysomnogram again. He was ok and for some reason, he sent me for a ventilatory polygraphy instead without warning.
I had to stop the nurse who was installing a breathing cannula on me, as it was of no use since I was sleeping with my CPAP and my doctor had not warned him... He did not want me to provided him with the data from my machine that night claiming that it was of no use. This ventilatory polygraphy was useless because my nose was directly blocked, causing me a sleepless night with a significant drop in oxygen saturation.
While the nurse was installing this device for me, she said several times that all people with Sahos just need to lose their excess weight to be completely cured and no longer have apnea. And she didn't want to listen to me when I told her that she was saying something very stupid. I have read studies of people without any excess weight and with severe apnea AND I was not at all overweight as a teenager when this disease turned my life into hell, although I know that being overweight increases the AHI very strongly.

He is one of the doctors who only looks at the AHI and compliance without consulting the machine data (he told me so) despite my insistence on my debilitating fatigue. He told me that he always had very serious, life-threatening cases to take care of, and that therefore he had to put me after them (which I understand). Knowing that he is terribly hard to contact.
There I didn't give him a choice since I came home with my computer, my data and my questions.

It's been 1 year since I made my request to have a polysomnography elsewhere, in a sleep center and to get another opinion. I still don't have an appointment to have one or to see anyone in this department despite the fact that they sent my request and that I had confirmation that the center received it ( extreme lack of doctors in this area with several retiring and not being replaced, and several deaths from covid).

I would like to point out that the first time I had a polysomnography in a sleep center at the age of 17 in another region, I was completely unsuccessful (AIH assessment = 0/H!!! + non-restorative sleep with microphone -awakenings, but no follow-up. Which was impossible given my life as a pure larva).

For the night that I posted here it's the opposite, I slept most of the night. As long as my nose wasn't blocked I slept, but when it was blocked I couldn't get back to sleep. I have included extracts accordingly, but it is true that I perhaps should have annotated them more.I fell asleep around 7:42 a.m., had a small awakening around 11:30 a.m., then several periods of sleep between 11:30 a.m. and 2 p.m. Around 2 p.m. my nose got blocked. From there I took my usual pee break/attempt to unblock my nose which didn't work = impossible to go back to sleep.

In terms of results, wouldn't it be simpler, faster and more efficient for everyone to upload machine data to, for example, Google Drive (free), so that members can see them themselves with Oscar or something else?
Or again, my video that I put in my first message where I skimmed my entire night, was perhaps not zoomed in enough? (see this video: https://drive.google.com/file/d/1LeMLhOg...nAhYw/view)

Concerning my future bipap machine, he did not tell me about the settings (lack of time + end of appointment). He told me to contact my provider regularly so that they can report back and change the settings based on my problems. I have to say that I dread testing this new machine because of this step.

I had tried SoftPap machine mode (EPR) several times, but it is literally unbearable. With each exhalation, I feel a very small knock almost every exhalation (CLAC! CLAC! CLAC!), even when breathing slowly. It's exactly like someone flicking my mask every time I exhale and it's impossible to fall asleep with that. A technician explained to me that this problem was due to the fact that the pressure on my machine was low for this function. And that this was rather made by people with greater pressures.

As for the collar, I'll try it. I don't move at all in my sleep when I sleep with my machine. So my jaw absolutely never opens since it holds well with a pile of clothing + always the only 2 different positions that I adopt. But it's worth a try since I waste a lot of time getting the hang of it.

When I have more experience, I would like to help other members too

[Dormeo]

That noise your machine makes with pressure support sounds maddening. If you have the opportunity, please request a ResMed Aircurve 10 VAuto bilevel machine. It's the one I use, and it is completely smooth and silent in the way it delivers pressure support. As for the settings, in your place I would feel free to change them myself. Once you get the machine, see what the settings are and let us know. We might be able to make some suggestions.

[Anewser]

Thank you very much Dormeo , that’s very reassuring. Your feedback shows that the EPR of my machine is very poorly adapted. It's not just a noise, but an unpleasant physical shock every time you exhale with the Prisma Smart.

I will actually have this BiPAP machine temporarily. I'm waiting for the technical center to contact me for an appointment, and I plan to test it next month.

Regarding machine settings:
I have been told by providers and my doctor that patients are prohibited from changing pressure settings. Only providers can increase the machine minimum, and only doctors can change the maximum.

It is infantilizing and aberrant, because it is the patients who suffer the effects of poorly adjusted pressure. They led me to believe that the pressures and other functions, like the ramp, were locked, but that's not true. This makes patients even more dependent on providers and doctors, who are also paid by social security for each such intervention. No wonder many abandon the CPAP machine (40% according to a brochure from my former provider!).
Fortunately, the treatment is free in my country, and that's great. When I see the price just for the BiPAPs, it's scary.

I will follow your advice and try to modify the settings if the basic ones are really not functional. I will show you personal traces and reports if I ever need help. Fortunately, there are a lot of testimonials on your forum.

[Deborah K.]

Most of us change any of our settings ourselves, based on advice received on this forum.  There's nothing wrong with doing so.  Your doctors just don't want you to.  There is no money to be made when people take over their pap journey themselves.  

[Dormeo]

In the U.S., patients are sometimes told that they are not allowed to change their settings. This is completely incorrect. I don't know what the rules are in France -- perhaps you can find out -- but I do hope you will let us know what settings they provide for you. If we believe they are not optimized, we can advise you about changing them, though of course it'll be up to you whether to act on that advice.