A little about my life with sleep apnea.

[74snowman]

Greetings to all.
Several years ago I had a sleep study performed. I did not meet the criteria for a split-night study, meaning they did not put a cpap mask on me the first night. My second night they tried to put a cpap mask on me, and I freaked out. I told them there was NO WAY I'd wear that thing to bed.
Fast forward two years.
Driving home one night, I fall asleep at the wheel on a major highway. There is a center-median of grass with no curbs or guardrails. I veer off into the center median and hit a big bump. I immediately wake up and take control of the vehicle. Nobody hurt, No signs knocked down, no wreck with anybody else, just some damage to my wheels and tires. I was lucky, and God was with me.
So I decided to go have another sleep study. Besides, my performance at work was declining, and I never felt rested. I'm glad I went. I'm glad I learned what I did about sleep apnea. But there is so much more to sleep apnea than any tech or doctor ever told me. It wasn't until I decided to become a sleep tech, and all the subsequent studying I did for the RPSGT exam, that I learned of all the problems associated with sleep apnea. I now try to get ALL of my friends and family to be screened. People simply don't understand how big a deal it is to breathe during sleep. They think snoring is just an annoyance, not a possible symptom of a much worse problem. So, I've gone from accounting/finance to sleep tech. Then I passed my RPSGT. I began working at a children's hospital two years ago. I perform sleep studies on ALL ages, from a few days old to as old as they get. I'm realizing more and more, both from personal experience and what my patients tell me, that DME companies are doing a tragically terrible job (for the most part) of taking care of their patients. They do not educate nearly as much as they should, and the followup process doesn't exist in many cases. I have patients with NO idea that they are supposed to get a new machine every 3 or so years, new tubing and mask ever so many months, filters on their machines should be changed monthly. They simply haven't been informed. They don't even know they should have a sleep study repeated if they have major changes in weight, begin to feel sleepy during the day even though they are using their cpap, etc. Everybody that is on cpap should have a study every few years anyway just to make sure. Doctors are failing their patients. DME's are failing their patients. There are way to many fly-by-nighter operations out there. Sleep is one of the fastest growing fields in medicine, and everybody and their dog are trying to exploit that to make a quick buck. Being in medicine, I see the financial side as well. In some labs, people are run through like cattle. Get as many in as you can, do the study, slap cpap on them and send them on their way. This is NOT how it should be done. There is far more profit available to the doctors and the dme's IF they follow up with their patients from time to time. I'll be starting a DME company of my own very soon. It is my goal to educate as many people as I can about sleep apnea. I study this ailment almost as a hobby. I read about it every day.
I just wanted to kinda introduce myself to you all, and let you know that if you have any questions I'll be happy to try to answer them. Just send me a message. I've got a team of dedicated sleep professionals, with a combined experience in sleep of well over 100 years. Anyway, thanks for reading! Happy sleeping!

[mars]

Hi 74snowman

First of all - WELCOME TO THE FORUM

You will certainly find a use for your talents here.

To get you started right at the deep end I have been unable to get an answer to the following question -

In auto I have tried many different pressure ranges, variations within a range of from 10.0 to 13.5, and also different cpap settings - 11, 11.5, 12.0.

Over an average of 10 days in each setting, I get an Obs/Cnt AHi of between 2.0 and 2.4.

Is there a measurement - 0.1, 0.2, 0.3 or 0.4 or perhaps even more, where the difference becomes significant in terms of general well-being in regard to the therapy. On a personal level I cannot tell a difference.

It's kind of like the cutoff safe AHi of 5.0, would there be a legitimate need to do something if the AHi was 6, or 7, or 8. Where did the wisdom come from that it was safe to have 5 events an hour?

I asked a similar question in December 2009, and now many more months more data, which still supports many different range settings = same result (more or less).

viewtopic.php?f=1&t=47236&p=425980#p425980

So if we accept that all other possible variables are the same, at what measurement of AHi does the difference between one measurement of AHi eg 2.0 and another measurement of AHi eg 2.2 become significant in terms of known clinical effectiveness. Or to put it another way, is there an AHi range eg 0.1 to 0.3 or 0.4 that is insignificant in terms of effective therapy.

Sorry to put you right into this, but if you have an answer that would be great. If not, welcome anyway.

cheers

Mars

[echo]

Wow, what a story! Welcome to the Forum and glad you joined! It's always great to have people in the sleep community involved on this forum. I'd also like to make the switch to sleep medicine, but never really seriously considered it. My 'night owl' personality would be perfect for overseeing overnight studies

Welcome and looking forward to your contributions! It's a fun bunch here

[BlackSpinner]

There is far more profit available to the doctors and the dme's IF they follow up with their patients from time to time.

Yes that is what I can't understand. It is a repeat business but I have never heard from my DME again. I once calculated how much they could make in repeat custom for someone at 40. It was quite a large number. I paid close to $2000 Cnd for the whole shebang if someone was 40 and lived to 90 that is 50/3*$2000 =$33,333 Cnd - and that doesn't include masks every 6 month, filters and other supplies PLUS referrals. Right now I refer everyone to our host because of the incompetent service I got. So they have lost close to $20,000 Cdn potential income from me plus any potential customers.

Note: Doctors here don't count - Quebec Medicare covers them and my pulmonologist is so swamped the wait 6 weeks for his patients and new ones wait much longer.

[park_ridge_dave]

Driving home one night, I fall asleep at the wheel on a major highway. There is a center-median of grass with no curbs or guardrails. I veer off into the center median and hit a big bump. I immediately wake up and take control of the vehicle. Nobody hurt, No signs knocked down, no wreck with anybody else, just some damage to my wheels and tires. I was lucky, and God was with me.

Snowman,

Been there Done that

That was my "wakeup call" (no pun intended )

In all seriousness, I am happy that you too survived.

Glad you got help and glad you are here (I look forward to your insights)!

Cheers,

Dave

[KatieW]

Welcome to the forum. What a story of survival, and finding your purpose in life!

Can you talk about the causes of dry mouth? The usual answer is breathing through your mouth or not enough humidification. I have experimented with taping my mouth, so that I know I'm not mouth breathing. My leak rate is 0. I'm not congested at all, and using the S9 AutoSet, have a humidity of 80%. I drink lots of water, and am otherwise healthy. I use Biotene Dry Mouthwash, and that helps, but I'm puzzled by this....is there a anatomical or mechanical reason for dry mouth with cpap?

[Julie]

Katie - you may well have Sjogren's ("showgren's) syndrome - a common (esp. in women) arthritis related syndrome that can give you dry eyes as well. You may not be aware of it except when using Cpap if it's very mild, but there is a (painless) test (ANA) that your MD could give you to check for it.

[KatieW]

Katie - you may well have Sjogren's ("showgren's) syndrome - a common (esp. in women) arthritis related syndrome that can give you dry eyes as well. You may not be aware of it except when using Cpap if it's very mild, but there is a (painless) test (ANA) that your MD could give you to check for it.

Thanks Julie, I googled it and found this very helpful site:

http://www.sjogrens.org/home

[Muse-Inc]

Let me add my welcome too! Nice to see another tech come join us...we can use all that extra insight!!!

[SleepingUgly]

So if we accept that all other possible variables are the same, at what measurement of AHi does the difference between one measurement of AHi eg 2.0 and another measurement of AHi eg 2.2 become significant in terms of known clinical effectiveness. Or to put it another way, is there an AHi range eg 0.1 to 0.3 or 0.4 that is insignificant in terms of effective therapy.

Somewhere (where, oh where??) I read that AHI of 5 was chosen very much arbitrarily in that one big wig wanted it to be X and the other thought it should be Z, so they made it Y. I wouldn't be surprised if I read that here on this site. I think each time I repeat this story, I'll embellish it even more. This time I'll add, "Two big wigs in the field of sleep got together for drinks after a big sleep conference. Several martinis later, they arm wrestled and the guy that won got to pick the cutoff for AHI". Anyway, bottom line is that the cutoff was chosen somewhat arbitrarily.

OK, this part is purely conjecture on the part of my ignorant self: An AHI on a CPAP is just an estimate, and there is measurement error, so really every AHI cited is +/- some number. In all fairness, they really should let us know the confidence interval. For example, the data should say, "Your AHI last night was 2.0 +/- 3.6" with 95% confidence, or whatever.

I don't think my views on AHI #s are very popular. Just my 2 cents, plus or minus a nickel.

[unadog]

Wow Snowman, thanks for the reminder that this is serious stuff!

My 11 year old snores quite a bit. He is heavy now, but I remember that he also snores quite loudly when he was in 3rd grad before he gained so much weight.

I am pretty sure he has sleep apnea. I have him scheduled fie a physical for May 4th wth his pimary care. I am going to ask foe a referal to a sleep specialist. But that will probably take 2 months, then another month for a sleep study and followup. If they do a tonsilectiny I could see that it might be September before he had the surgery.

My wife is pretty resistant to this whole process. Of course that means my don is also nit eager to cooperate.

I was thinkng that if I had some more data, it might help speed up the process. I was thinking of buying a recording oximeter and having him wear that for a night or two. I was also thinking of having him use a newer CPAP like the PR System One that includes flow data for a night or two at a lower setting, like 8.0, to get some sense of how his sleep looks - events, etc.

He has some ADHD-type behaviors at school that I think might be related to the sleep apnea. I'd really like to get him on the right track and feeling better as soon as I could! I'd appreaciate your thoughts on potential diagnostics at home to help speed up tge diagnosis, and possibly ways to convince the wife and kid of how important this is.

Welcome to the forum! This is a nice place with a lot if good people. Someone certified who actually knows what they are talking about is a welcome addition!

Good luck

best,
Michael

[Thomas F.]

I was thinking of buying a recording oximeter and having him wear that for a night or two.

YES --- buy the oximeter to see if your son's O2 level is dropping. Don't delay. It's a simple, at home test that will tell you if you son's O2 level is dropping. If there is a problem then you have the data to take to sleep lab. I bought the CMS 50E online from Southeaster Medical Supply my my situation but an checking my whole family with it for peace of mind.

[SleepingUgly]

My understanding is that most kids have more hypopneas and less apneas. If he's desaturating, certainly that's good evidence of apneas, but if he's not desaturating, I would not take that as evidence that he does not have sleep disordered breathing.

Do you need the referral from your primary care physician? Otherwise, you could take him straight to an ENT. ENTs often make the call about whether to have a tonsillectomy & adenoidectomy, even without sleep studies, but if you want the sleep study too, you certainly should be able to get it. If you need the pediatrician's referral to get to an ENT or a sleep study, then I'd call the pediatrician's office and express urgency (e.g., problems at school, etc.). They undoubtedly see same-day appointments for sick kids, so you should be able to get in sooner if you press the issue.

Personally, I would not start messing around with a CPAP on a kid without a diagnosis. What would you do with the information? Data from a CPAP cannot be used to diagnose SDB. It won't tell you anything and will just torture the kid and probably make your wife and him more resistant to all of this.

I'm not sure what part of this process your wife is resistant to. The sleep study is a breeze for kids, and if he doesn't have SDB, he's done. If he does have SDB, the surgery is not that big a deal in kids (it's not nothing, but it's really not as bad as you'd think). If nothing else, he avoids the negative consequences of SDB. If he hits the jackpot, you may find his ADHD-like behaviors improved or even cured.

All your wife has to agree to at this point is the first step of going to see the doctor. No need to weigh the pros and cons of surgery now, as it's irrelevant until either an ENT says he needs a T&A or a sleep study finds SDB. As far as the kid cooperating, in my family, kids don't get a vote about matters of their health and safety. (They do get to choose their flavor of ice cream, popsicles, etc. post-op.)

[SleepingUgly]

Michael, one more thing: Current methods of detecting SDB in children are insensitive. Research is underway about the best ways to detect it, but this hasn't made its way into clinical practice in most labs. I see you are in Michigan. One of the researchers in this area is Ronald Chervin. If I were you, I'd contact him and ask where you should go to have your best chance of detecting SDB, if it's present. Maybe you could even go to his lab.

[unadog]

Thank you Thomas, and Sleeping Ugly!

That is all very helpful. I have been puzzling over this for a few weeks!

My wife objected to me buying the oximeter to do a quick check while he is sleeping! She doesn't want to start relating his educational problems to something physical, is the best way I can say it. I can't think of the words right now.

Unfortunately, I talked to her about why I wanted to buy the oximeter before I just did it! I think I will go ahead and buy one, then see what it shows.

I don't think she would agree to the ENT right now. She did agree to the physical. I'll find out whether we need the referral. If the oximeter shows desats, I will pish harder to get him in there right away. I hate to have him suffer through this any longer if there is no need! I know the profound consequences SDB can have. I don't think my wife understands how much it has screwed up my life.

Thanks! I'll report back!

Best,
Michael