Please Let it Be the Apnea

[Plmnb]

I actually cried while reading your post.

Let me say welcome and boy have you come to the right place.  I don't have the exact same problems you do for sure, but my lack of sleep along with MY other situations...well...I have an overload of empathy for you.  Let me say this....I have JUST been called a "FREAK OF NATURE" by one of my very trusted advisors on this board.  It certainly did not hurt my feelings, I actually LOL....because it seems to be true with this darn apnea situation.

Regarding surgery.......WAIT....WAIT....WAIT!  I KNOW how tempting it may be, but having been through quite a bit of surgery for apnea and still needing PAP therapy, I will tell you, now that you have found Apneaboard it may just be the help you need to get you started on feeling better.  Give these great helpers a chance.

Best Wishes,
Plmnb

[Woke]

I acquired an SD card reader and have posted screenshots from the last three nights.  I read that “Snore” and “Flow Limit” are also useful, but mine appear to be blank.  A setting perhaps?

Could the sleep stage information have been interpreted just from the graph on my last page (my earlier post)?  I am recalling my physician’s explanation as far as the stages go, so perhaps I do not have what all he saw.  If there is a concerning omission I could try contacting the lab directly.
 
Surgery-wise: what is the main driver of caution?  I well know how way off doctors can be by now, but this problem is a new one to me so I am not sure what all to be looking for.  I have had so much surgery in my life that if the concern is that it might not be terribly effective…at this point, worth a shot?  Not that I enjoy pain and hospitals, but I am accustomed to them.  This new expert came in wanting to avoid invasive therapy, but as he vocalized his observations throughout the exam his recommendation changed based on those findings, so my impression is that he came to that conclusion carefully.
 
The leg movement angle is even less familiar to me.  I certainly would not think to identify it as a disorder or even a problem that I can tell… but I could be wrong.  After all, I did not consider that I could have sleep apnea.  Right now I would generally describe my nocturnal movement as responsive as opposed to initiative.


Thank you again to everyone who has commented, that's much more than my whiny post deserves.

[ApneaQuestions]

Because the machine is set up in "Vpap-S" mode, it behaves differently from "VAuto" mode and does not attempt to distinguish between OA and CA. They all show up as "unclassified". I believe it doesn't report some of the other values too.

[Gideon]

Let's shift to
VAuto Mode
Min EPAP = 16
Max IPAP = 23
PS = 7

This will better show us what is going on and effectively are the same settings you have been using.
Post results tomorrow

Why are you using a PS=7? I ask because it is rather high.

My guess is that many of the UA events are in fact central and the high PS is causing many of them.
If you could post a 2 minute view of a couple of them that would allow us to see that.

Otherwise you have a mask leak issue that you need to get a handle on, there is some mouth breathing in there.

[Woke]

I have changed that mode, thank you.  The pressure support came from the doctor, I remember hearing the respiratory therapist who set up my original machine say it as she calculated the EPAP of 16.

It took a lot of masks to get the leak to this point, where at least it seems well-behaved by comparison.  I could believe it is still causing regular trouble.

I picked a few events for a screenshot just by what number they were by order, I do hope I have not picked lousy examples.  Let me know if I should look for one thing or another instead.

[DeepBreathing]

Surgery-wise: what is the main driver of caution?  I well know how way off doctors can be by now, but this problem is a new one to me so I am not sure what all to be looking for.  I have had so much surgery in my life that if the concern is that it might not be terribly effective…at this point, worth a shot?  Not that I enjoy pain and hospitals, but I am accustomed to them.  This new expert came in wanting to avoid invasive therapy, but as he vocalized his observations throughout the exam his recommendation changed based on those findings, so my impression is that he came to that conclusion carefully.

The main reason I urged caution is that we have seen a lot of people go through surgery and come out the other side still needing a machine, as the surgery can only do so much. I understand from your words above that your guy seems to be very conservative in his approach and not likely to recommend the surgery without a very good reason. However it's been my experience in life that (some) surgeons see the scalpel as the solution to everything - not only that, but they each have a favourite procedure. You know the old saying - when your only tool is a hammer everything looks like a nail.

Your results on the machine are not bad and with some careful fine tuning I'm reasonably sure we'll be able to get you into a pretty good situation just using the machine. If you have the surgery - based on what other members have experienced - we may well be back here in twelve months time again trying to fine tune the machine. In your position I'd have a deep and meaningful with the surgeon and ask

• how many of these operations he's done;
  
• what is the % success rate, and how is success defined;
  
• how many of his patients still needed CPAP following surgery.
  

Thank you again to everyone who has commented, that's much more than my whiny post deserves.

Everybody's entitled to a whine now and then.

[Dormeo]

I want to add my welcome.

No question that for me disrupted sleep led to irritability, gloominess, and a loss of memory, the ability to find the right word, and the ability to follow anything complicated. I also did a lot of brooding and self-monitoring.

I have pain bothering me at night most nights, so I can’t say I’m doing great, but with effective therapy for my apnea, I’m sure doing better. By far the best thing that happened along the way was finding this forum. My therapy would not be effective without it, and I’ve felt so much less alone, which matters to me too.

I’ll be following your thread with interest—and hoping to hear you’re seeing signs of improvement as you work on dialing your therapy in.

[Woke]

My last night’s therapy is probably particularly lousy, for reasons not connected, so while I have posted it: hopefully I can do a better run with these settings tonight.
 

You all have thoughtfully spent the time to respond, I will do so in kind:
 
bonjour –
Thank you for your repeated efforts to improve my experience.  My pressure support response probably seemed a little obvious and silly: I intended that I do not actually know why it is at 7 beyond that it was apparently in the prescription received by the respiratory therapist.
I see in your signature that you are heavily involved in OSCAR, thank you for doing what you do.  Far too much of medicine has been shrouded in mystery to the patients themselves, it reminds me of the priests being among the only few allowed to read the Word of God.
 
Big Guy –
Thank you for the commiserative camaraderie, I certainly hope you get more results from your own treatment path; patience may be a virtue, but it is also a pain.
I do remember that when the local ENT had mentioned this big multi-specialty approach, he included mention of the mental aspects of insomnia (“CBTi”).  I rather dismissed this in trying to convince him that the pain angle was not a valid route.  Sure enough, the pain doctor agreed, but I never looked at the mental side.  I suppose I am too quick to dismiss these things as nonsense: another spinal doctor tried to convince me to get into “neuroplasticity” because that was all that could be done.  I read some of the material, but man…largely nonsense bathed in medical lingo and general scientific jargon.
I have reached out to his (the ENT’s) office to ask about this though, maybe there is something to it.
 
ApneaQuestions –
Ellipses are addicting, I have to control my usage because they are so convenient as a means of approximating the way we speak in a text-based format where it is hard to give others a context of emphasis or other hints for interpretation.  But it can look noncommittal or distracted.
Let me know if I missed anything as far as creating convenient OSCAR shots, I tried to follow the instructions.
Also, you called it: not being in VAuto was the reason why I had no data for “Snore” and “Flow Limit;” it appears now.
 
 
OpalRose –
I am very impressed by the interest this forum has in helping some random guy; I posted mostly just because I feel so lousy and pressurized that I thought throwing it out upon the largely deaf universe could be some relief.  I fully did not anticipate getting this invested responsiveness from this board.
This new surgeon is a second opinion, and it sounds like they are both on the same page, the first surgeon just could not handle it locally.  I was taken by surprise to even have anyone investigate my sleep- like the pain, the effort to solve it just dropped off.  There were doctors long ago, and they did their usual routine of Ambien and such and came up with nothing.  That is not to say that I should stop seeking answers, but I think I am at least somewhat on the right track—it was rather touching when the local guy said at my initial appointment that we would get to the bottom of everything going on and that he would never give up on me as a patient or on improving these my circumstances.

sheepless –
Since getting perspective on what “normal” is, it sounds like 72 and 118 are both rather ridiculous, your words of patient success have given me a much-appreciated dose of optimism.
 
SarcasticDave94 –
I have gotten in gear and the OSCAR data up, hopefully it is useful.  I have my concerns yet regarding the appearance of a much lower AHI given the lack of eliminating time awake, but that does not mean I cannot be learning from what I see.  OSCAR is a massive uptick in information over myAir by Resmed.
 
Deep Breathing –
Thank you for your assessment, I think “a wreck” is an apt description.
I certainly understand what you mean about doctors being stuck on their one treatment path.  I have forwarded those among my questions to the office.  My original surgeon stated that he firmly believes that I will still require CPAP after surgery; to think of the surgery as an effort to improve the benefits of my therapy can provide given extreme anatomical barriers.  The new expert volunteered that while his goal and hope would be to get me to where I did not need CPAP, he could not promise it.  I am appropriately not expecting full resolution, though I would obviously love to see it.
 
Plmnb –
I am sorry to have caused you sadness, it was not the intent.  I appreciate the sympathy and concern: I have forwarded some questions to the surgeon’s office that were suggested in this thread.  I see in your profile snapshot that you say your are a “uvulectomy victim,” and I wanted to ask what your experience has been with that.  It is possible that a uvulectomy would be involved as it appears as part of one of the surgery names in the list.  This is among my questions to the surgeon.
Can I also assume, based on your name, that you have Periodic Limb Movements?  bonjour pointed out that he sees a significant number listed in my sleep study, but I do not have a perspective on this regarding what is normal/abnormal and how my sleep study stacks up, nor have I been personally conscious of this problem.  If I can ask: what in your experience does this affect?  Did you know it was an issue?
 
Dormeo –
Thank you for adding your experience speaking to the effectiveness of CPAP therapy.  It does make it easier to go forward knowing that it has been responsible for noticeable improvement in others.  My sympathies on the pain; I have run into many who have assumed my long abandonment of pain management is in part by virtue of adjusting to the pain, but as you no doubt know: it is often the opposite when chronic.
My memory and mental performance have been perhaps the hardest to take, feeling as though over the years who I am is slipping awake and there is nothing I can do to stop it.  My mood and, by proxy, my self-perceived personality has drastically gone downhill as I have become so vacant of hope.
Thank you.

[Dormeo]

So good to hear back from you, with such thoughtful and generous responses. Let's hope tonight will give you a better run with some good data to ponder.

I haven't yet run out of things to try for the pain. But even if I can't lick it, I am truly helped by having dialed in my apnea therapy. So onward it goes.

[sheepless]

Woke, there are a few folks here that suffer from periodic limb movement, including me, and there is some but not a whole lot of discussion about it on the forum. turns out to be a big issue for me. I have had seriously fragmented sleep (slowly improving), even after finally getting my ahi down to reasonable numbers. it took a long time to figure out plm is a problem (no help from the sleep doc and staff) and I'm still trying to get help to get it fully or at least more fully resolved. I don't know much about it but can certainly tell you what I do know and what my experience has been, if you're interested. the forum focuses on apnea and cpap but other sleep related questions are often raised and discussed.