Mysterious Sleep Apnea or UARS. Unsolved. Please HELP

[shossain3]

28 yr| male| BMI 23.5| I have Resmed air sense 10 but I do not use it (explained later) | Oregon, USA

Hello everyone,
I apologize for this long post. I have been suffering from the sleep-related issue (most probably UARS) since 3rd, Aug 2016 (Strangely, it started suddenly from one day). I was trying to sleep in a flight and every time I was dozing into sleep, I would be awakened up by twitching of feet or hand. I ignored it that time, but since then this became permanent every time I go to sleep. Within a week my symptoms arrived:
• Feeling sleepy/ drowsy all over the day. Fatigue (even after sleeping for 11 hours)
• Unrefreshing sleep.
• Low concentration/ alertness
• Low memory (short & Long term both)
• Hard to learn new things. Thinking problem. (In one term, it feels like a brain fog/ dull brain)
• Blunt headache every day. Especially after waking up.
• Wake up from sleep with breathlessness, choking, sometimes with an elevated heartbeat. Sometimes I wake up with a feeling of breathing struggle and as soon as I move my tongue, I start to breathe properly again. Other times I will wake up by twitching of hand or leg. Or sometimes I will wake up for no reason. Sleep seems very light. Any outside disturbance (e.g. sound) will wake me easily. The frequency of waking up has been reduced from once in every 5 min to 8-9 times per night now (Due to improvements from surgeries done)

The doctors were confused at the beginning as I am young, not overweight, and do not snore. Anyway, got my 1st Lab sleep study on June 17, AHI: 8. Doctors gave me CPAP (Fixed, 11 H2Ocm). I tried for 3 months but no improvement in the symptoms. I contacted the doctor back, but they claimed according to their data (from the CPAP card) it is working. However, I was not seeing any change.
Anyway, I started to seek a solution from other doctors and at some point, I had a septoplasty (Feb 18). It reduced 20% of my issues. So, I became sure that my problem is related to sleep time breathing.

On Aug 18 I brought a pulse oximetry device for overnight recording. Started to keep the record for every night. It was very bad. Drop over 4% will be 16-20 times per hour. Nadir Oxygen would be 78.

I had the 2nd sleep study (home) on Sep 18, AHI 8.5. A doctor did a Sleep endoscopy then and for the 1st time, we found severe obstruction even though mild sleep apnea (Obstruction at soft palate + Tongue base). Had a “UPPP + tonsillectomy + Lingual tonsil removal” then. Which removed another 20% of the issue. My oximetry also got improved. Now it would be 10-12 times per hour (drop over 4%) and nadir oxygen would be 85.

I tried an auto CPAP this time did not make any difference. Did the next lab study in Feb 2019. AHI 7. They again gave me the ResMed cpap|H2O 13cm| Again did try but no benefit. The sleep center continued to claim it is working and I should not need to go for any of the surgeries I had. But I know how much difference was created by those surgeries.

By this time, I and my doctors tried to check if anything else has been hiding behind this. So, I have been through numerous other tests including EEG, ECG, MRI, blood, urine tests, MSLT(test for narcolepsy), and whatnot. I have been seen by neurologists, family med, rheumatologists, psychologists, pulmonologists, and many other specialties. Not a single thing came out problematic.

In 2019, I met a big doctor in the field of sleep surgery. He did a DISE again and there was still obstruction at the tongue base level. The obstruction at the tongue base level was observed to be solved by the last UPPP. So, he then did a Genioglossus advancement. Surgery was done correctly but unfortunately, there was not a slightest development after two months.

Later on, based on suspicion that I might have issues with my sinus the same doctor ordered a CT scan of the nose. This showed severe blockage in the sinus. So, I had to go through endoscopic sinus surgery. Within a week my sleep got better. Within two weeks my other symptoms also got better. I will say it has removed an additional 35% of the problem severity. So, I am now left with 25% from the initial situation. My oxygen curve also made a sharp improvement. Nadir point came to 90. And a 4% drop is 6-8 times per hour. Sometimes for 30-50 min, even it comes as an almost straight line (though it does not happen every night).

I again tried CPAP (with 4 different masks). Dental sleep apnea device (custom made). Sleeping position, sleeping in an elevated position, tongue exercise, and a big list of other things. Nothing works at all.

I had another follow-up sleep study. AHI 5.4. and another with Dental Device, AHI 7.1, RI: 9.1. Both are home study.
June 20: Had another DISE (3rd). It shows a similar blockage as 2nd one. No obstruction in soft palate/ epiglottis but blockage at tongue base. Had gone through Tongue radio frequency (2 times- in one month apart) + Hyoid suspension (done with the 2nd radiofrequency). The result is negative. Not a slightest improvement. I and the doctor both are frustrated. He thinks it is not from sleep apnea. He thinks it is something else, but he has no idea what it could be. He does not want to do anymore sleep apnea treatment on me.

I am again in the middle of the ocean- clueless. Though compared to the beginning I am 75-80% better. My symptoms are always the same only the severity decreased with the surgeries. I still have the belief that it is nothing but a sleeping time breathing issue which is somehow not detected by the sleep study. I came to know about the Esophagus pressure monitoring tests, but my doc told me it is no more done as it is too problematic (Let me know if you know any place in the USA where it is still performed). Please let me advise on what can I do at this level? Or, what else it could be except sleep apnea? What other tests I can do?

You may think that I am biased to do surgeries as I already had six surgeries by now. But I promise I am not. I just need to get out of this hell. As initially nothing else provided relief except surgeries so I continued. And some of them made a huge difference. DISE was done before every major one and decisions were made based on that. I do not regret about the surgeries I had and if needed I would be happy to do the permanent tracheostomy even. But I want to get out of this problem at any cost.

Thanks for your time.

[zonker]

28 yr| male| BMI 23.5| I have Resmed air sense 10 but do not use it (explained later) | Oregon, USA
Hello everyone,
I apologize for this long post.

no worries. i see you've been in here before.

http://cpaptalk.com/viewtopic.php?f=1&t ... 9#p1295079

going to repeat what katestyles said then: we need more info. yea, you've given us quite a lot. but what we need is the data from the machine itself. to get to that, please get the free software-

https://www.sleepfiles.com/OSCAR/

and start posting some charts.

your doctors are worthless. but there aren't many sleep doctors who aren't worthless. most of us currently on the forum have gone our own way with our therapy. and it's time for you to do the same.

once your charts are here for all to see, experienced forum members can start giving you helpful advice. there are no two of us who are making the same cpap journey. we are each of us different. having said THAT, there are rudimentary adjustments you can make to get your therapy dialed in.

so get us that data and we'll try to help.

good luck!

[shossain3]

Hello Zonker,
Thanks a lot for your reply.
Since my sinus surgery (2nd from last) I didn't have a titration study. So, I do not know what pressure to use. Mine is a Fixed pressure device. As I mentioned before that I tried the titration pressure and it didn't help (at least 3 times) so what I did is: I started with pressure 4 (lowest in my machine). Stay under that pressure for 2 nights and try to see if there is any change in my symptoms or oximetry if not then increase the pressure by one. In this way, I would try to go as high as I can tolerate.
So, which pressure report should I upload. Any random one? Should I add the oximetry as well?
Let me know your opinion.

Thanks in advance

[zonker]

Hello Zonker,
Thanks a lot for your reply.
Since my sinus surgery (2nd from last) I didn't have a titration study. So, I do not know what pressure to use. Mine is a Fixed pressure device. As I mentioned before that I tried the titration pressure and it didn't help (at least 3 times) so what I did is: I started with pressure 4 (lowest in my machine). Stay under that pressure for 2 nights and try to see if there is any change in my symptoms or oximetry if not then increase the pressure by one. In this way, I would try to go as high as I can tolerate.
So, which pressure report should I upload. Any random one? Should I add the oximetry as well?
Let me know your opinion.

Thanks in advance

i take it you are at fixed pressure because this is what was prescribed, right? i'm not certain which airsense 10 you have. is it on this list?

Resmed Machines
Fully Supported by Oscar
The following machines have been tested and are supported by OSCAR v1.1.0

Airsense 10 Elite
Airsense 10 Autoset
Airsense 10 AutoSet for Her


what i want to find out is if it's an auto machine that's been set at a fixed pressure or not.

as to which oscar screen, it should look like this-

Screenshot 12-20.png (229.43 KiB) Viewed 2187 times

so give it a go and we'll see how we proceed from there.

good luck!

[shossain3]

Hi Zonker,
It is air sense 10 CPAP by ResMed. It is not auto. Fixed pressure (4-6).
As you said I will try to check with the Oscar software. Though I suspect that it does not record too much detailed data as shown in your graph. I previously tried with sleepyhead (2 yrs ago). There was not much data stored. However, I could be wrong. So I will try again.
Thanks

[zonker]

Hi Zonker,
It is air sense 10 CPAP by ResMed. It is not auto. Fixed pressure (4-6).
As you said I will try to check with the Oscar software. Though I suspect that it does not record too much detailed data as shown in your graph. I previously tried with sleepyhead (2 yrs ago). There was not much data stored. However, I could be wrong. So I will try again.
Thanks

hmmm. might not be enough to actually go on. not convinced yet that it's indeed "fixed" pressure. you say "4-6". do you mean a minimum pressure of 4 and and maximum pressure of 6?

because that doesn't make a great deal of sense to me.

we will see if you can get an oscar chart up.

[shossain3]

Sorry I ment 4 to 20 H2O cm. Wrote 6 by mistake.
I will try to provide a oscar chart ASAP

[zonker]

Sorry I ment 4 to 20 H2O cm. Wrote 6 by mistake.
I will try to provide a oscar chart ASAP

as a swag, i'm going to GUESS that a lot of your problems stem from the fact that your minimum pressure of 4 is what is causing a lot of problems in your therapy. i'm thinking it should be raised.

but let's see that chart so we'll know for sure.

[Miss Emerita]

I'm not going to bet against you on this, Zonker! Speaking of bets, I would wager that shossein has an autoset machine. So curious to see a chart.

Shossein, you've been through an awful lot, and we'd really like to help you. A look at a daily chart would be invaluable.

[zonker]

I'm not going to bet against you on this, Zonker! Speaking of bets, I would wager that shossein has an autoset machine. So curious to see a chart.

Shossein, you've been through an awful lot, and we'd really like to help you. A look at a daily chart would be invaluable.

yup. now that he said 4-20 it's clear.

so looks like when we get the chart, we'll have an easier time of making any necessary adjustments.

[Pugsy]

I am going to bet he has the half assed brick and the 4 to 20 comment is available range for the setting at fixed pressure because he said

It is air sense 10 CPAP by ResMed.

Will know soon enough if OSCAR is used because there won't be much if any data to see if it is the "CPAP" model.

If it is the half assed brick then pretty much all that is available is what is on the LCD screen sleep report...and I don't think it will be all that helpful anyway....the AHI wasn't all that remarkable on the most recent sleep study.

[zonker]

I am going to bet he has the half assed brick and the 4 to 20 comment is available range for the setting at fixed pressure because he said

It is air sense 10 CPAP by ResMed.

Will know soon enough if OSCAR is used because there won't be much if any data to see if it is the "CPAP" model.

If it is the half assed brick then pretty much all that is available is what is on the LCD screen sleep report...and I don't think it will be all that helpful anyway....the AHI wasn't all that remarkable on the most recent sleep study.

oh, well spotted. and could explain why, in that same post, he said-"I previously tried with sleepyhead (2 yrs ago). There was not much data stored. However, I could be wrong."

we shall see.

[shossain3]

HI,
Thanks, Zonker, Pugsy, and Miss Emerita for your concern about my problem. Here I attached a screenshot from OSCAR. My machine doesn't record AHI data.
Though it displays the last run's "event per Hour" data in its display. Which was 2 per hour. It always comes like this low value but no difference in my feeling.

Yesterday for some external reason I went to bed at 3 am but that is not my normal bedtime. By the way, my CPAP clock was not adjusted so ignore that. Only The "duration time" will be useful. The oximetry's clock is correct in time.

as a swag, i'm going to GUESS that a lot of your problems stem from the fact that your minimum pressure of 4 is what is causing a lot of problems

>>Hi, Zonker: Well my machine's pressure range is from 4 to 20 H2Ocm. Before each surgery, I tried the clinic-provided titration pressure for multiple weeks and also I myself changed the pressure and tried different pressure settings. As I mentioned earlier:

so what I did is: I started with pressure 4 (lowest in my machine). Stay under that pressure for 2 nights and try to see if there is any change in my symptoms or oximetry if not then increase the pressure by one. In this way, I would try to go as high as I can tolerate.

In this way, I have tried pressures from 4 to 20. Usually, pressures above 15 are hard to tolerate. they make lots of leaks. But I stilled tried them for some nights. Pressure below 12 is easy to tolerate. However, no matter which pressure I use no change in symptoms and oxygen graph. I attached my last night Oxymetry. This is an oximeter I brought from Amazon. (mentioned in my post)

I am going to bet he has the half assed brick and the 4 to 20

>>Yes you are right Pugsy. This a fixed pressure machine

I previously tried with sleepyhead (2 yrs ago). There was not much data stored.

>> yes. I tried previously and it was like the picture below. Very little info.


I will post some of my past and present oxymetry report to show how things improved over time

[zonker]

HI,
Thanks, Zonker, Pugsy, and Miss Emerita for your concern about my problem. Here I attached a screenshot from OSCAR. My machine doesn't record AHI data.

i'm sorry to say, but i'm not good at giving advice for someone with a fixed pressure machine. i'll step aside and see what the others can do.

i'll keep an eye on things in hopes that i can learn something as well.

good luck!

[shossain3]

Here is some oxymetry snapshot from a different time. Not every night is the same- they are just an average representation.
It is not allowing me to attach more than 3 pictures at a post. So I am attaching the 4th picture in the next post.
All of them were done without any CPAP/ Dental device or anything. These are just normal sleep recorded.