I have a bona fide diagnosis -- Epilogue to My Story

I posted a long version of the history of my story here:

viewtopic.php?f=1&t=47828&p=436955&hili ... is#p433704

The short version is this: I had my first sleep study nearly 20 years ago, with many to follow. In the first study, I had an AHI of 9.9, due to hypopneas nearly all in REM, considered too mild to be important, but was never diagnosed with sleep disordered breathing in any of the other studies I had. I even requested a sleep study to see if I had UARS, thinking that it would be great if I did because I could simply (ha!) use CPAP and be treated! But despite a first night of an AHI of 3.26, Back Index of 6, and REM Index of 10, the following night of esophageal manometry, my AHI was .18. I've been relegated to the Idiopathic Hypersomnia wastebasket diagnosis for many years.

Last summer a doctor suggested that I may have SDB, and put me on an empiric trial of CPAP. CPAP was difficult for me for a host of the usual reasons, including that I'm a light sleeper, I open my mouth, I have a difficult face for a FFM, skin breakdown that prevented me from using a mask consistently without having to take breaks, and no real clue what my pressure range should be (as well as a myriad of other problems). There were times I felt somewhat better with CPAP, and times I felt it was so disruptive to my sleep that it was a miracle that I didn't feel much worse than I did. I stopped CPAP a couple of months ago when my new doctor advised me to stop it because it was making me worse, not better.

EPILOGUE:
I just went for yet another sleep study and I was diagnosed with OSA, with an RDI of 15.7 overall, not counting continuous flow limitations, and an RDI of 58 in REM (all hypopneas). This was very surprising to me as I expected at most a diagnosis of UARS, or possibly mild REM-dependent OSA. They titrated me to a pressure of 10, but couldn't eliminate all my events, and aerophagia and awakenings at that point prevented them from increasing with the pressure. I was prescribed APAP at a range of 11-13.

I have mixed feelings about all this. Some of it is due to the many clues that existed in my data, had anyone (including me) taken the time to look at them (e.g., my REM RDI, had it been calculated, was abnormal in the 2nd study, and even in the 3rd I had other clues to SDB). I'm not much for crying over spilled milk, but it's a little stunning to realize that this has likely been my problem for decades.

But a big part of my precarious emotional state at present is due to this... When I first embarked on a CPAP trial, it was with the intent that if CPAP worked, thereby confirming that I had SDB as well as that my EDS was due to the SDB, surgery would be a consideration. If nothing else, I was thrilled that there was a possibility of having a treatable disorder, as the quality of my life has tanked in recent years. But having failed to tolerate CPAP at pressures lower than my prescribed pressures, it feels much less treatable than it did back then, with the added "bonus" of it likely worsening at least at menopause. I know that I haven't exhausted all my options for treatment, and I intend to pursue them, but it's a little scary to be diagnosed with a disorder whose best treatment I haven't tolerated. At the same time, I do have hope that I will find a way to treat this problem, and knowing what the problem is can only help... (assuming this IS the cause of my EDS, and that it will remit with treatment...)

BTW, when I went off to the sleep study, I more than half expected that they would tell me there is nothing wrong with my breathing, and I thought, "I'm going to miss the gang on cpaptalk.com, but what kind of lunatic hangs around a cpap forum if SDB has been ruled out?!" I guess I don't have to worry about that!

Thanks to all of you who have helped me since I began this journey, and thanks in advance for all the help I know I will receive in the future. The one thing that has alleviated some of the anxiety that this diagnosis has raised is that I know there are many knowledgeable, caring, generous people on cpaptalk.com who will do their best to help me with all the obstacles I face. Thank you for all you do for everyone who comes here.

Ah SU, sorry 'bout your diagnosis, dashing the hopes of something with a treatment you could tolerate easier. Considered a course of cogitive behavior? might help.

wow, you have been through it and back again, that is some story!

Here is wishing the best for you, and hoping somehow things will change a bit, and work out for you in the end.

elena

Muse-Inc wrote:Considered a course of cogitive behavior?

My tolerance didn't have much to do with the sorts of things cognitive behavioral therapy might help with. It was stuff like aerophagia, frequent arousals, discomfort, leaks, beating up my nose, sinusitis, ear pain, dry eyes, etc. I'm sure some of the problem is that I had no idea what my settings should be so the only time I was even in the vicinity of a pressure of 11-13 was when it was set to 4-12 or once I tried 6-11, and I didn't do well with wide open ranges. But my biggest problem is that I couldn't get a full face mask that didn't bust up my nose, except for the Hybrid that seemed to wake me all night. I have two theories about that (both are probably wrong!): One is that the test puffs of air from the PR1 disturbed me when they were IN my nose, and the other is that I'm too congested to do well with pillows. I'm going to try an S9 and see if that changes anything.

My best crack at CPAP is probably going to be if I have surgery to correct some of these anatomical problems.

This has been a long circular journey for you, hasn't it? I hope that you can tolerate the S9 better. My experience, in comparing it with the S8 AutoSet II, it breathes more gently. With an EPR of 2, I feel no resistance to exhale, so it's very comfortable. Though I have a very narrow range (10-12) on apap, and find that the changing pressures do not disturb me at all. I hope that the S9's Control will help with your congestion.

But having failed to tolerate CPAP at pressures lower than my prescribed pressures, it feels much less treatable than it did back then

Hi SU, I hope the following thoughts will give you some hope:

CPAP at suboptimal pressure is bound to be sleep disrutptive, since you still have obstructive events to keep you from sleeping well, and all the CPAP's bothers on top of that. The continued existence of the obstructive events keeps your brain is on alert and an alert brain is not going to put up with any of cpap's bothers -- it becomes a vicious cycle. I hope you will find a minimal starting pressure the is tolerable enough for you to fall asleeo with, and a machine that will respond to your REM events without waking you.

I join Katie's hope that the S9 will be better for you. I'm one of those people who feel a tremendous difference between different aglorithms, the Respironics M System simply couldn't read my breathing well enough to treat me. From what I've read, trying the S9 is a good idea -- and if that doesn't work, the Sandman will be worth a try too.

O.

SleepingUgly wrote:But my biggest problem is that I couldn't get a full face mask that didn't bust up my nose, except for the Hybrid that seemed to wake me all night.

Try the Liberty. I tried a Hybrid first and just got a Liberty last week. I am waking up less with the Liberty. I might try cutting the chin flap off the Hybrid to see if that is why it wasn't working for me. When congestion is bad I have a hard time switching to mouth breathing but the Liberty at least keeps me from having mouth leaks. I had a hard time sleeping when I couldn't breathe through my nose pre cpap - I wouldn't expect that to change.

Joanne

I agree SU, don't give up yet. There are many machines you still haven't tried Heck if aerophagia is still a problem , there's still Bipap to try too.

Now that you finally know your titration pressure, and perhaps an S9, your therapy might end up working MUCH better. If nothing else you can still try straight CPAP at 10 or whatever your aerophagia limit is. That might still be sufficient to stop all/most of your events, especially if you combine it with side-sleeping. Don't forget, what the sleep lab sees is only for one night, and while sleeping under unnatural conditions. So there's still hope for you yet, and we're by no means done troubleshooting you

Glad you're still around.

I have the Sandman Auto, M series with A Flex and the S9 Auto. The M series was my primary and gave me good results. When I got the S9, things changed dramatically for the good. Even without EPR, breathing is much easier and more natural. I currently have a pressure of 7-14. The first breath or two, I notice a little resistance to exhaling. I do not notice any of the pulses used to detect Centrals. My current mask is the Swift FX, but I have the Hybrid and the Liberty. I much prefer the Liberty over the Hybrid mainly because of the headgear making it easier to adjust the mask for no leaks.


Sleep Well

Steve

Thanks for the update. I'd been wondering what the last study revealed. Glad you got a diagnosis, as the not knowing leaves one stuck somewhere in treatment limbo. I do hope getting this diagnosis will at least remove the inner hesitation that comes with not being fully convinced of the need for treatment. Your drive to not give up on finding answers will carry you thru finding solutions to the obstacles you have encountered with cpap thusfar. May the next years be good enough to take the sting out of the past ones.

Thanks for all the support! You are the silver lining in all this!

Big Daddy wrote:

At this point in your quest, What is your main complaint, that is, what are you trying to fix or improve?

EDS and cognitive issues.

What is the worst thing about CPAP?

With Cflex+ at apparently suboptimal pressure, I was able to eliminate most of my aerophagia, so remaining problems were largely interface-related: skin breakdown on the bridge of my nose primarily. There were other issues, such as sinusitis, ear pain at my last use, dry eyes, etc.

What do your reports from your Auto look like? Is there a link you can post to these reports?

Well, it's funny, but at the time I had no diagnosis and I kept thinking, "Doesn't the fact that I have all these events ON CPAP at least indirectly speak to an SDB diagnosis?!" But that's not how you diagnosis SDB. I would think to myself, "Here there are people on the forum with SEVERE apnea and their downloads look way better than mine...How can I NOT have SDB?!" I guess I can't not.

Anyway, I am not sure that there's any point to posting them now, as apparently I wasn't at the right pressure anyway, but I will post new ones once I go back to CPAP.

Has your weight fluctuated between these sleep studies?

Hmmm...I don't know, but not markedly. That is, probably not by more than 10 pounds, if at all.

I think Sypark hit it on the head, people with UARS are very sensitive and may not do well on CPAP (toleration wise). Why...well most people stop breathing for 10 or 20 seconds before their bodies wake them up to breath with a gasp. However people with UARS are so sensitive they never get that far, any little flow limitation dirsturbs them so they often have these low AHI studies with an occasional higher AHI or maybe it only scores while supine or during REM. One thing is sure, you have mild OSA or UARS at least sometimes. We also find people sometimes have leg kicks in response to respiratory disturbance so the PLMs might actually be overlooked very mild hypopneas(too mild to meet scoring criteria). We don't score a PLM in the presence of a respiratory event.

I don't have UARS, so I'm told, although frankly I don't know what the difference is between a RERA and a hypopnea with no desaturation... I have a feeling that by the AASM Recommended criteria for scoring hypopneas, I have UARS, and by the AASM Alternative criteria, I have OSA but who knows how severe, and by the Chicago Criteria (or some bastardized version of it where a hypopnea can be associated with either a desaturation or an arousal) I apparently have OSA.

My self-diagnosis: UARS in non-REM and OSA in REM. But there's no such thing, I don't think.

Have you had a traditional sleep lab titration?

Yes, please see above.

Have you tried BiPAP?

No, no one has tried me on it and no one has suggested that I need it.

One more thing...I'm not an big advocate of upper airway surgery as it usually doesn't cure OSA, but I have seen it increase pap complaince. And in it's defense, I have even seen a few people "cured", the greatest success having occured when the OSA was mild and especially when the patient was of normal weight with large tonsils,uvula etc. Something to consider.

So is my OSA "mild" if my RDI is 4 in NREM (not counting continuous flow limitations) and 58 in REM (for an overall RDI of 15.7)? Has anyone ever looked at whether 5 is an appropriate cutoff for RDI in REM? One would think that even in "normals" the REM RDI would be higher than in Non-REM...

SleepingUgly, you have my empathy. Sometimes it is a very, very long road to reach a diagnosis and the it can take even longer to attain some benefit from that diagnosis. I know all too well.

Now that you have a clear diagnosis of OSA and a set of issues, confront your doctor with the question "How do we resolve the symptoms and the issues?"

If you were using the Quattro FFM, you mgiht want to look into the Quattro FFM face shields from either REMzzz or PadACheek. I sometimes use the REMzzz product when I have problems with my skin (or when I've been stupid enough to burn my skin). The PadACheek option was not available when I was looking.

You might want to also want to ask your doctor about BiLevel machines as a way to help reduce the aerophagia. I find it makes it much easier to breathe against the bilevel pressure than against the continuous pressure.

And I agree that the S9 type machines will probably be a good next step. The S9 was developed from technologies developed in the VPAP Adapt SV unit. Some of that was carried over to the S8 serioes. But it was fully implemented in the S9. I find the way the VPAP Adapt SV delivers pressure is the easiest for me to breathe against of any unit I've ever tried. (And I've tried a few). It's also very quiet.

So, in your shoes, I would go back to the doctor and say:

• Okay, I have a diagnosis.
• It appears to cause distrubed sleep and EDS (as well as cognitive issues)
• I also have the following symptoms when I used CPAP ...
• What can be done to address those ...

Then if the doctor does not mention bilevel, ask "Well, what about a bilevel machine? Would that help?"

Then if the doctor does not address noise, ask "What about the S9? I've heard that it is a very quiet machine."

You get the idea.

At any rate, it's good that you have a clearer diagnosis. With that you can start to focus on solving the complications of the therapy. (And yes, surgery to correct problems with the airway can often be an important step in the process).

John, the S9 Autoset doesn't come in bilevel, does it? And are you saying that bilevel reduces aerophagia?

A bi-level may (and does) reduce aerophagia for some people.