I'm hurting

[Deano]

Here is a quick snapshot concerning my sleep apnea. I'm a 45 male 6'2" 240 lbs. 2007 diagnosed with serve sleep apnea. 47 events a hour ( very little REM sleep ), was subscribed a setting of 11.5 cm on a new Remstar. This did not help much, but i'm getting through the day..2008 after awaking myself several times a night gurgling I decided to take it upon myself to adjust the pressure ( I know it's a no no but I was going into survival mode ). After adjusting .5 cm at a time for a year and a half my cm climbed to 17cm. About 6 months ago I decided to go to a Ear,Nose & Throat Dr... Of course he gave me a Ambien and sent me for another sleep study. Went there, slept for a total of 2.5 hours with no rem sleep. Went back to my Dr. visit, reviewed the sleep study results, ( In a nutshell )Pressure was at 16 cm with no apneas, final pressure can not be determined because of no REM sleep. What do I do now? I'm never going to let my guard down in a sleep study environment and fall into a deep sleep. Talked to the Dr. how I could just lay in bed and relax and my throat is totaly closed ( that's without CPAP ). He looked in my throat and recommended UPPP surgery. Tonsils were removed when I was 3... 6 months later I'm still fighting with the Dr. office personal. Dr office says they denied it, ( of course I can't get them to fax that copy to me thus far ) my insurance company says they have no record that my Dr office asked for pre qualification. Still sending faxes back and forth still on going. So here I am in survival mode, bumped up my pressure to 19 cm, still no relief. Nasal mask seals good, jaw is staying closed with the help of a chin strap.. So my journey continues

[Janknitz]

I would suggest that you try to find another sleep doctor--a doctor who specializes in sleep medicine and is either a pulmonologist or a neurologist. You really need a second opinion, preferably from someone who is NOT an ENT (if you go to a surgeon, they are going to want to do surgery, but that may not be the best thing in your case).

47 events an hour is considered "severe" sleep apnea, and the prognosis for being helped by UPPP surgery is not very good.

You need a better study--perhaps a home study with your machine on so that you can really go into REM sleep (this is done with a small aproved medical device that attaches to 2 fingers), or a titration study so you are sleeping with CPAP and monitored closely.

Blindly increasing your pressure, no matter how slow and carefully you are doing it, is not a good idea. It doesn't sound like you have any data to base your decisions on.

after awaking myself several times a night gurgling

It also sounds like you may have Gastroesophageal Reflux Disease (GERD) which often goes hand in hand with sleep apnea. This needs to be checked out, as you won't get anywhere with Sleep apnea treatment if this is unchecked.

[torontoCPAPguy]

ENT's make their big bucks through surgery and I hate to say it but when I had an ENT problem years ago I made the rounds and they all wanted to remove my palate, clean out my sinuses and put my palate back in. 2 months in bed. One month in hospital. The SIXTH ENT I visited says same thing but says he wouldn't do it to his worst enemy. So what would you do if it were your wife? He says use Afrin, take penicillin daily for as long as it takes for the problem to clear. It took ten years. Bumped into him a while back and he remembered me as being the guy with that issue and who asked what he would do if it was his wife.... and asked me how I was doing. Told him his advice was super and thanked him profusely.

MD's are like artists and car mechanics all rolled into one. You really do need to get a second opinion and a third opinion if necessary. You need to educate yourself and put your own conclusions together as well. Of course, when you are laying on a gurney with no pulse you pretty much have to go with the flow..... but otherwise perhaps you take the time to make an EDUCATED decision or decisions.

[Deano]

I do have silent GERD and was treated for it for 6 weeks, My Ear,Nose & Throat specialist says GERD has very little effect on Sleep Apnea. Not true? I went back for a check up on my GERD and the treatment worked well.. I think the gurgling to me feels and sounds like a very light snore ( a apnea I'm suspecting ).. Janknitz, how do I ask my primary Doctor for a Sleep Specialist? You are correct, I do not have any data to base my decisions on. I know these in home sleep studies is not covered by my insurance company, maybe there is a way to qualify if I can't get any REM at a sleep center. With the help and suggestions of everyone on this site hopefully I can get get myself on the right track. Thanks for your posts

[Junebug999]

Is there anything that can be done to help you sleep better during a sleep study? Is there something that can be done to help you feel more safe so you are not "on watch" (I always am on watch unless I feel safe). Maybe that would help?

[cflame1]

you don't have to ask your doc for a referral... check your insurance website and call some sleep docs until you find one that will take you without a referral (that's how I found mine).

[charliegreer]

Deano:

I'd feel desperate if I were you, too. At 19, you're within a stone's throw of maxing out your machine. Then what do you do?

I've taken all the sleeping pills that run television commercials. None of them will to anything for OSA and, as far as I'm concerned, make an already dangerous condition even more dangerous. You don't want to be too drugged out to wake up when you have a life-threatening episode. You couldn't pay me to take sleeping pills.

Surgery is a last resort. Run a web search on it. You won't find too many positive results. I know a guy who had the vast majority of the back of his throat removed and it didn't help one bit.

I had problems until I switched to a Mirage Quattro mask, with a dental appliance to keep my jaw from sliding back on me, and a chin strap to keep my mouth shut. Now, I'm down to a 0.9 API and can get 7-8 hours of sleep per night on a semi-regular basis. I can still have an episode when I'm in deep REM, especially when I sleep on my back, but at least I get a couple of REM's per night, even though they tend to get interrupted just as they're getting good. My goal in life is to have one complete dream without having an episode wake me up, but I'm not complaining. At least I'm getting my sleep and I'm very grateful for that.

If you're sleeping on your back and having problems, switch to sleeping on your side.

I'm 5'11" and weigh in at 200 pounds. I set my pressure at 14.5. I'd like to go higher, but that's as high as I can go without running into mask leak problems. So instead of raising my pressure, I'm going to lower my weight. That would be a good idea anyway, and I'll bet it will open my airway more.

I don't know if your 240 pounds is solid, rippling muscle, or otherwise. But if it's not, a little weight loss probably wouldn't hurt you either. You don't have to be overweight to have OSA, and not every overweight person has OSA, but if you are overweight, it's probably a contributing factor. If you're having trouble losing weight, abandon all sweets and go to a vegetarian diet. When you eat vegetarian, you can eat about as much as you want to, and still lose weight.

If you're stressed about this, you have every right to be. This is a serious situation. Take every means possible to get and keep that airway open when you sleep.

I wish you well.

[M.D.Hosehead]

Deano,

1. Do a search here for UPPP. No support for that here. I had it and would not do it again.

2. I don't think you have had optimal CPAP therapy. You definitely need another opinion.

3. It would be a good thing IMO if you had enough sedation during a sleep study that reasonable measurements can be made. Be sure to ask your (new) sleep doc about that.

4. GERD doesn't cause apnea, but apnea can contribute to GERD. The heaving of your chest can "suck" stomach contents up into your esophagus.

[Emilia]

Hi Deano,
Please take a minute to go up to the User Control Panel and then to Profile.... choose Edit Equipment and choose your machine, mask, humidifier and software (if applicable) and show them in TEXT not icons. This way each post you write will automatically show your stuff at the bottom in blue like mine does. It helps those with the same equipment to advise you.

You don't say if you have software to monitor your therapy.... and I assume you don't. Until we know what machine you have... exact model and make, we won't know if you can get software with which to monitor your own therapy and progress.

You say your make is working well, but without the data, you don't know if you are leaking enough to make a different in your outcomes.

I wish you the best of luck with your situation. I, too, would hesitate about surgery. Everything I've read points to it not working in most cases. I think that seeing a well qualified sleep doctor is the best route to go. I hope your insurance allows you to see specialists without a referral from your PCP, but even if you need that, it is your right to get that referral.

[Deano]

[djr1215]

I know these in home sleep studies is not covered by my insurance company, maybe there is a way to qualify if I can't get any REM at a sleep center. With the help and suggestions of everyone on this site hopefully I can get get myself on the right track. Thanks for your posts

When was the last time you checked your insurance. Medicare started covering home sleep tests last year and most payers eventually follow Medicare's lead.

[torontoCPAPguy]

Weight IS one of the contributing factors to OSA; especially noting that a very large neck size (mine is 19") is often used as an indicator as well. Having said that, I have three friends that are as skinny as toothpicks and they ALL have severe OSA. We seem to be forming a club here.

It sure is frustrating trying to get the right pressure range, mask fit, leakage down, etc. Throw infused oxygen into the mix and you really have a conundrum. I am at the point where I have very few events but when I have them, they are whoppers... pulse skyrockets, SpO2 plummets (and I assume that BP skyrockets as well). They are very short lasting. Just long enough to kill my REM sleep so that I am tired and groggy all morning and poop out early. If I could just find the right combination to eliminate the events, maintain my SpO2 and get some decent REM sleep I would be a happy guy.

If you REALLY want an education, read some of the articles on REM sleep and what the lack of REM sleep does to your body and brain asides from must being tired or pooping out early. It is fascinating. Drug efficacies change as do their interactions; blood sugar changes; formation of solid memory changes; and so on. It is quite fascinating what lowering SpO2 does to the body and what lack of REM sleep does (and is often the result of a plummet in SpO2... even for a minute).

I am off to have a nap.

[Janknitz]

Deano, Your CPAP machine and humidifier in your profile don't go together and you are showing the brand new System One Auto A-flex. If you've had your machine for some time, I doubt that's what you have. Please choose by name, not icon and go back and make sure of what you have. If you do indeed have that particular machine, then you can see your data, but I doubt that's what you have.

Home studies are approved by Medicare and many major insurers. Aetna just came out as covering them nationwide. In the next few years, I think that's going to be a booming area of sleep medicine.

Take a look at Dr. STeven Park's blog http://doctorstevenpark.com/biggestthro ... sleepapnea. He talks a lot about the "vacuum" effect caused by a narrowed airway and pressure gradients in the airway during apnea--and the relationship to GERD. So I'm not sure that your ENT "gets it" as far as the relationship between GERD and sleep apnea. If you do have reflux, that can irritate the lining of your throat and airway, cause swelling, and even more narrowing. It's a vicious cycle.

As far as how to ask your doctor for a referral, try this:

“Doctor, I am not finding my sleep apnea treatment to be fully effective and I would like a referral to a pulmonologist or a neurologist specializing in sleep medicine.”

It’s as simple as that.

You may want to research what doctors and sleep centers are in your area and covered by your insurance, so you can even ask for a specific referral. Be sure to talk to other people with SA in your locale about their experience with various specialists. You can ask here by titling a post something like “Recommendations for sleep specialists in Outer Slobovka?”

[Deano]

[Janknitz]

That's better, Deano. The machine and humidifier matchematch now and the Series M is more likely given the length of time you've been on CPAP. I think you have a data capable machine you can use for auto-titrating, but first you will need software.

You can buy Encore Viewer 2.0 software from our hosts on CPAP.com for $99. You will also need a proprietary card reader for the M series data cards. CPAP.com carries those as well.

Also, I see posts that people have exhale problems with higher pressures ( breathing out against pressure ). I do not have this problem with the C Flex set at 3, 18 cm setting.. Breathing out feels just as normal as everyday breathing. Does this sound normal?

Yes, that's exactly what the C-Flex setting is for--it relieves the pressure when you are breathing out so you don't have to push air out against 18 cm H20--which is a pretty high pressure!

Once you get software, you can set your machine in auto mode and should be able to let the machine help you find the correct range. With data, you can see what's working and what's not. Newer auto machines give you a bit more to work with because they differentiate between hypopneas and centrals (clear airway apneas), but your machine should be up to the task. Get the software and data card, and then ask here how you can use the auto feature to help determine whether you are doing well at your current pressure and whehter you might need to increase or decrease it.