UARS friendly physician

My AHI is always between 1 and 5, mostly centrals, and I'm pretty sure the odd obstructive is a misreading. I feel comfortable with the CPAP and sleep with it all night every night since I got it. I have minimal leaks and found no correlation between how much leaking there is and how I feel the next day.

Only sometimes when my nose clogs up while I sleep, my sleeping brain finds it can't exhale through coffee-straws against the pressure, and wakes me up.

I don't know enough about centrals to comment on your centrals. But IF your SDB is well treated, and by your account, CPAP does not seem to be disrupting your sleep, you do not seem to fall into the category of those who don't tolerate it. Furthermore, IF your SDB is well treated, and you are still tired, what reason is there to think that your SDB is causing the tiredness? And even if there is reason to think that the SDB is the cause, why would surgery correct that if CPAP did not?

Now, one caveat about whether your SDB is well treated or not... With the S9, since it doesn't spit out numbers for RERAs/FLs, your AHI can be subclinical but you could have terrible FLs that perhaps would present as RERAs in the lab, in which case I would say your SDB is NOT well treated. Do your flow graphs look good? Also, did they do a titration on you in the lab at the pressures you are using and tell you that you do NOT have residual events, including RERAs, at that pressure?

I'm in a similar position in having residual EDS, except that I've never been able to tolerate prescribed pressures, and as long as I can't, it's theoretically possible that my residual SDB is causing my EDS. BUT, if I were tolerating prescribed pressures, with no residual events noted in the lab or on my machine, I would personally be very leery of surgery for SDB because I'd have no confidence that my EDS is attributable to SDB. Does this make sense? That said, I had septoplasty, turbinate reduction, and a tonsillectomy a couple of years ago (I wrote a thread about it here), and I don't regret it. If not for the septoplasty, I probably wouldn't tolerate CPAP hardly at all, plus it's provided other benefits in daytime breathing, sinus issues, etc. It's impossible to know what tonsillectomy did for me, apart from the nasal surgeries, but it did not make me worse, even if perhaps it did not make me better (who knows--I did them all at the same time, so I can't say). There is no other surgery that I would do, personally, unless I had the utmost confidence that it would help, because my big fear would be that it might make me worse in some form or fashion. But that's just me.

I was writing my response and had to delete it. My arguments seem confused. I need to stop and reevaluate things.

Your point is that surgery shouldn't be pursued as a shot in the dark, and I thank you for this contrary view. I was being influenced by the positive reviews on Dr. Li's site.

I get the impression that your residual sleepiness is not so severe; perhaps you feel you're sleeping at about 70%. I know the feeling - on good days like today (even though if you ask me I will admit I'm only functioning at 70%) I can't remember why I feel so desperate on bad days to fix the problem.

(this goes to anyone as well) Suppose you believe that you ARE one of the people who would benefit - consultations with trustworthy doctors confirming this - who claim a 50% improvement in their sleep from MMA. 50% improvement is a lot. That is a lot of prevention of break-down of your body and brain which is occurring due to your less than optimal sleep.

Then you would undergo MMA? Because the only thing holding you back is that you have no reason to think you are one of the people that it does help?

1041 wrote:I get the impression that your residual sleepiness is not so severe;

It's my biggest problem in life and has appreciably deteriorated the quality of my life and aspirations.

perhaps you feel you're sleeping at about 70%. I know the feeling - on good days like today (even though if you ask me I will admit I'm only functioning at 70%) I can't remember why I feel so desperate on bad days to fix the problem.

And yes, there is variability, with some days being God awful and some being less than ideal, but not horrific.

(this goes to anyone as well) Suppose you believe that you ARE one of the people who would benefit - consultations with trustworthy doctors confirming this - who claim a 50% improvement in their sleep from MMA. 50% improvement is a lot. That is a lot of prevention of break-down of your body and brain which is occurring due to your less than optimal sleep.

What makes you think your sleep is less than optimal now? Do you feel AT ALL less tired on CPAP than you did before CPAP?

I don't think you answered me when I asked if you have residual FLs and whether your doc observed any residual RERAs at the pressure you're using? (Was that this thread, or another? I'm getting confused.) Also, were there any signs of any other disorder, such as PLMS or anything else?

Then you would undergo MMA? Because the only thing holding you back is that you have no reason to think you are one of the people that it does help?

If you're asking me, a couple of things would cross my mind when reading testimonials or doctor's statistics about their own procedures. I would think about the doctor's conflict of interest, and I would think about the patients' cognitive dissonance. I wish there was objective data and that researchers would study what predicts improvement with MMA. Is improvement on CPAP one of those things?

BTW, I'm happy to shut up and let others answer you, rather than playing the devil's advocate here. Keep in mind that most people here are pretty anti-surgery (more than I am) and pro-CPAP. It's the nature of the forum.

For people like me who are tired, getting a diagnosis (in my case after two decades) that explains it is like winning the lottery. What better than a diagnosis linked to an effective treatment?! But if the treatment doesn't work, rational minds have to consider the possibility that either (1) if it's caused by OSA, it may be here to stay and (2) that it isn't the sole cause of the EDS. I would leave no stone unturned before I dismantled my face in order to treat a condition that may not be causing my EDS.

1041 wrote:Your point is that surgery shouldn't be pursued as a shot in the dark

Exactly! I would take every other shot in the dark before permanently altering my face and possibly causing permanent side effects before I even thought about that.

I was being influenced by the positive reviews on Dr. Li's site.

One of the positive reviews (assuming it's still there) is by someone who posts on this site occasionally, who ultimately ended up having a trach. If she's still around here, perhaps she'll chime in.

BTW, after my nasal-throat surgery, for a few weeks, I felt EXCELLENT! I didn't expect a cure, but I thought I was cured. To this day, I don't understand why I felt so good. Was it some medication they gave me post-op (e.g., steroids that I had briefly that affected something else?), placebo effect, contrast effect, ??? People want to feel better, and when they've gone to great expense and had a radical surgery like an MMA, psychologically it's going to be very difficult to say it didn't make a bit of difference. As a relevant aside, I think I am better with my surgery than before my surgery, although certainly not enough. I'm also better with sub-optimal CPAP pressures than no CPAP. But even with all that, I can't perform as I should in my life.

SleepingUgly wrote:appreciably deteriorated the quality of my life and aspirations

You're careful not to overstate, but I know you are serious about the degradation. Going days without deep sleep is a feeling that non-sleep-disturbed people will never know the true feeling of.

SleepingUgly wrote:Do you feel AT ALL less tired on CPAP than you did before CPAP?

On good days yes. I attribute some of it to CPAP and some to my own tweaks.

SleepingUgly wrote:residual RERAs at the pressure you're using

My titration said that 7cm eliminated all RERAs. My AutoSet flow graphs show ratty periods often though; I think it's my sleep nasal congestion. Hopefully septoplasty and turbinate surgery will make them go away.

SleepingUgly wrote:signs of any other disorder

No leg movements, but many spontaneous arousals. I think I detected a hint of surprise in my sleep technician (who was careful never to reveal anything about what she saw in the studies) when I woke up in the middle of the 7cm RERA-less sleep.

SleepingUgly wrote:improvement with MMA. Is improvement on CPAP one of those things?

I would love to see a study on that too.

SleepingUgly wrote:for a few weeks, I felt EXCELLENT!

My longest fake eureka is 4 days. Must have been heartbreaking when those few weeks ended.

Well, best of luck to you and all of us still seeking. Maybe we will find an answer.

1041 wrote:A doctor who does not believe UARS is a distinct syndrome will just put you on CPAP.

Does anyone know of a sleep doctor who believes in the UARS syndrome (aka hypersensitive nervous system) in California? I am willing to drive far, or fly.

I know of Dr. Guilleminault, but it's difficult to see him.

Hi!

You need a doctor who understands CO2 maintenance issues [1,2].

You should probably look into pulse oximeter guided breathing or some other form of eucapnic breathing retraining. I have found it very helpful!

May you find good restorative sleep soon!

Todzo

1. MP3 of - Expert Interview: Dr. Barry Krakow on PTSD, Insomnia, and Sleep Apnea http://doctorstevenpark.com/expert-inte ... leep-apnea

2. http://www.ncbi.nlm.nih.gov/pubmed/21206741

Are random sharp inhales while sleeping a symptom of non-eucapnic breathing?

1041 wrote:Are random sharp inhales while sleeping a symptom of non-eucapnic breathing?

Hi again,

I do not recall that as part of my experience.

Try this link to find an accredited AASM sleep center near you....then ask if the director will treat UARS.

http://www.sleepeducation.com/find-a-center

You're the one with the appointment at Stanford, right? Keep it. I doubt they'll keep you at 7cm. That's quite low. I would say try higher pressures yourself, assuming you understand the data, but you mentioned centrals so that makes me a little nervous.

SleepingUgly was right. Dr.Guilleminault (there was a cancellation) discussed conventional (structural) therapies with me, including raising my pressure, GERD fixes, and tongue exercises.

What tongue exercises???

SleepingUgly wrote:What tongue exercises???