lurker coming out

[js12278]

Hello all. I have been lurking in the shadows reading lots. I have come to use forums as a great source of knowledge and reliable opinion. I am in need of help with CPAP therapy. First off, I know how sleep apnea can disrupt a person's sleep and life. Second, I sleep like a baby at night. I have no problems after my night of sleep. I MIGHT get up once a night, if it's cool out and I need to use the bathroom. Otherwise, my wife confirms I sleep soundly and do not suffer from any of the descriptions that they at the lab said might exist with my BMI/neck size, 33/17.

I have been labeled as having sleep apnea. I went for a HOME sleep study. It's required for work as my BMI met the criteria. I went to a lab and was offered a take home study. I have a little discomfort of being watched as I sleep, especially by strangers. At the lab they walked me through hooking up the gadget. My appointment was at 10 am, there was no way I would have slept to do an in lab study. I just had a great nights sleep. I went through the motions as it is all required if I wanted to keep my job. That night I went to bed around 11pm all connected and laid flat on my back. I NEVER sleep on my back, however this night I was fearful of damaging the equipment. I had the cannula, respiration band and the oxymeter all hooked up. Half way through the night I moved to my left side. I ALWAYS sleep on my left side. I removed the equipment approximately 4.5 hrs after I went to bed. I really was concerned about damaging the little wires on the machine.

The following morning I returned to the clinic and met with a nurse. The same one that walked me through the day before events. After waiting for a bit so they could access and interpret the test results, It was decided I had moderate sleep apnea. Just this alone surprised me. I had to now decide whether I stayed employed and started the therapy or I left without the machine and chose to seek employment elsewhere. Supine I had 17 events. Left side I had 13. I know for a fact, most of the events were caused by me adjusting in my sleep, trying to maintain a level of comfort. I did not sleep for 4,5 hrs. MAYBE 2. but I wore the device for the 4.5 hrs I was told was minimum by the tech.

I was given a ResMed S9 Autoset w/ Humidifier. Nose pillows and face mask, slimline hose, cellular transmitter, 12v adapter, 110 adapter and SD Card. Tech walked me through use and care.


This stuff costs someone a lot of money. I didn't pay anything. It troubles me because I know many of the people I work with use the same machines and they love it. These guys also feel better and swear by it because of how good it helps them to sleep. This is where I started to question things. Not a single other person knows any of the details of their therapy. They wear it and forget it. None of them know their numbers or AHI, Events, nothing. When I talk to them about what research I have done, I have concluded, I have been fitted with a pacemaker and have never had an issue with my heart. As if I am doing dialysis and have no issues with my kidneys. I am questioning these doctors, nurses and techs as to why I am on the therapy and have no events even close to what I read or hear about. I used to watch my uncle's friend, when I was a kid, sleep in a chair. He would fall asleep and I would think he was dead or in the process, he stopped breathing so long. Scared the hell out of us kids when he awoke gasping for air.

I need to know how I can present facts from my using the machine and Sleepyhead to the doctors so that I can be undiagnosed with a sleep/ breathing disorder. I currently have to be recertified once a year as opposed to the normal 2 years. I have no issue with the treatment of sleep apnea, I just don't believe someone should be labeled and prescribed for/with something that does not exist.

Any help is greatly appreciated. Thanks.

[bwexler]

De Nile may be one of the longest rivers in the world, but it is not the best place to start this journey.
I never thought I had Sleep Apnea and din't even know what it was.
Now after 4 years I am still trying to adjust to the therapy, but I do appreciate no longer falling asleep at the wheel, even though I never quite wrecked, the rumble strips always woke me in time.

I think you need to use you equipment and continue your research. Learn to track your data and maybe next year will have grown out of it, or not.

[Wulfman...]

If you use your equipment and analyze the results with software, it will be readily apparent if you've actually got Sleep Apnea.

In the meantime, just use it and see if it improves your sleep and cognitive functions. Download the software (if you haven't) and see what it shows.

I could have sworn that I didn't sleep at all during my sleep study, but I did and have been using my equipment now for over nine years......and LOVE how I feel compared to before.


Den

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[kaiasgram]

I need to know how I can present facts from my using the machine and Sleepyhead to the doctors so that I can be undiagnosed with a sleep/ breathing disorder.

Can't do that -- because when you're using the machine you are getting at least some therapy (even at the lowest pressure setting) and that says nothing about what would happen if you were not using the machine. There's simply no way to use the machine or the software to prove that you don't have sleep apnea. On the other hand, as Den said, your machine and SleepyHead could certainly show that you do have sleep apnea.

[kaiasgram]

I know for a fact, most of the events were caused by me adjusting in my sleep,

Obstructive apnea events are due to a collapse of the airway, not by moving around in your sleep.

And, you said:

I ALWAYS sleep on my left side

followed by:

Left side I had 13 [events]

You weren't "labeled" with sleep apnea, you were diagnosed with it by a home sleep test. If you doubt the results of your test you could ask for a repeat test but from everything I've read on the forum, you can't argue your way out of the diagnosis where your employer is concerned by stating that you don't have symptoms.

Do you have a copy of your sleep test report? If so, you could post it here (white out your name) and get more feedback about the results.

[js12278]

So how does one CURE someone suffering from sleep apnea? If the events are in the 1-4 level as shown in Sleepyhead how can a statement be made to show therapy should continue? I am not looking for a woohoo moment to celebrate the fact that my employer foot the bill for medical equipment that I do not need. If one did not need the therapy, why would someone continue with it?? Software shows less than 4 events per night. Most of the events occur as I awake to disconnect the nose piece so I can meet the certifications required. If there was a clear benefit to my using the machine, I would be all over using the machine. that's not the case. For a medical doctor to prescribe a therapy that is not called for bring a question of credibility. In my case I feel it is questionable.

[js12278]

Is it wrong or out of protocol to request an in lab study? That device I took home seemed to be a bit archaic to give any accuracy to breathing other than chest/diaphragm motion.

[Wulfman...]

Is it wrong or out of protocol to request an in lab study? That device I took home seemed to be a bit archaic to give any accuracy to breathing other than chest/diaphragm motion.

That's the ONLY way you're going to settle this........get an in-lab sleep study.
If the full-blown shows you've got sleep apnea, get used to it.


Den

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[kaiasgram]

If SleepyHead is showing an AHI of between 1 and 4, all that means is that you aren't having significant apnea while on the machine. That's true even if the events tend to occur as you're starting to wake up. The thing you can't get around is that when you're on the machine, you're receiving the therapy. The only way to show that someone doesn't have sleep apnea is to do a sleep study/test while not on the cpap machine, and then your untreated AHI would have to be below your employer's criteria for mandating treatment.

As for a cure, there isn't a surefire cure to date. Occasionally we hear from someone on the forum who lost weight and no longer needed their machine (I'm sure if employment was at stake one would have to do another sleep study to document the absence of apnea). Some have undergone surgery but not everyone is a candidate, and the surgery is brutal, and the success rate (long term remission of sleep apnea) is incredibly low. Some people are treated with dental devices -- that too is not a cure, and not everyone is a candidate for that approach. There might also be a problem with your employer accepting a dental device because they can't monitor your use in the same way they can with the data card (or modem) from a cpap machine.

[js12278]

Is it wrong or out of protocol to request an in lab study? That device I took home seemed to be a bit archaic to give any accuracy to breathing other than chest/diaphragm motion.

That's the ONLY way you're going to settle this........get an in-lab sleep study.
If the full-blown shows you've got sleep apnea, get used to it.


Den

.

That's what I would agree to. If the Full blown test shows events above the recommended quidelines, then it would be silly to not do the therapy.

[kaiasgram]

Is it wrong or out of protocol to request an in lab study? That device I took home seemed to be a bit archaic to give any accuracy to breathing other than chest/diaphragm motion.

Sounds like you were wearing a respiratory effort belt? That tells the testing device whether or not a person is trying to breathe during an apnea event. When you stop breathing, if your airway has collapsed your chest will still register movement on the respiratory effort belt. Your body is trying to breathe but you can't get air. If there is no respiratory effort when breathing has stopped, that's a central apnea -- the airway is open but the person is not breathing and not trying to breathe. The belt is not all by itself measuring the apnea events, it is just differentiating between obstructive and clear airway (central) events. You were likely also wearing a pulse oximeter on your finger. Did you also have equipment under your nose or mouth?

Your question about requesting a lab study -- would have to be answered by your employer.

Home sleep tests are not perfect -- an attended (in lab) sleep study could clarify things one way or the other.

[js12278]

If SleepyHead is showing an AHI of between 1 and 4, all that means is that you aren't having significant apnea while on the machine. That's true even if the events tend to occur as you're starting to wake up. The thing you can't get around is that when you're on the machine, you're receiving the therapy. The only way to show that someone doesn't have sleep apnea is to do a sleep study/test while not on the cpap machine, and then your untreated AHI would have to be below your employer's criteria for mandating treatment.

As for a cure, there isn't a surefire cure to date. Occasionally we hear from someone on the forum who lost weight and no longer needed their machine (I'm sure if employment was at stake one would have to do another sleep study to document the absence of apnea). Some have undergone surgery but not everyone is a candidate, and the surgery is brutal, and the success rate (long term remission of sleep apnea) is incredibly low. Some people are treated with dental devices -- that too is not a cure, and not everyone is a candidate for that approach. There might also be a problem with your employer accepting a dental device because they can't monitor your use in the same way they can with the data card (or modem) from a cpap machine.

Agreed. The company criteria are lower then recommended guidelines so many of the employees fall in to have the study and the results of the test get them a free machine. The in lab should be mandatory. The HST, in my opinion can't be accurate enough to be used as a positive determination, especially since an in lab would be the better way to test accurately. I have only heard of one case of surgery and that didn't go well for the patient. It's a national news story now involving a little girl that the state determined to be brain dead, not good. I have heard about the dental devices, as long as they record the therapy and can provide proof of such therapy they would be permitted.

[kaiasgram]

js, I'm curious -- what is the AHI that puts a person in the "must get treatment" group by your employer?

[js12278]

Is it wrong or out of protocol to request an in lab study? That device I took home seemed to be a bit archaic to give any accuracy to breathing other than chest/diaphragm motion.

Sounds like you were wearing a respiratory effort belt? That tells the testing device whether or not a person is trying to breathe during an apnea event. When you stop breathing, if your airway has collapsed your chest will still register movement on the respiratory effort belt. Your body is trying to breathe but you can't get air. If there is no respiratory effort when breathing has stopped, that's a central apnea -- the airway is open but the person is not breathing and not trying to breathe. The belt is not all by itself measuring the apnea events, it is just differentiating between obstructive and clear airway (central) events. You were likely also wearing a pulse oximeter on your finger. Did you also have equipment under your nose or mouth?

Your question about requesting a lab study -- would have to be answered by your employer.

Home sleep tests are not perfect -- an attended (in lab) sleep study could clarify things one way or the other.

It was a device that mounted center sternum with the resp. effort band holding in place with little wires. There was a nasal cannula as well. It had a small tube over my mouth. I think, for me, it basically measured accurately my sleeping position. Like the gyroscope in a cell phone. Yes there was an oximeter on my finger as well.

I have been using the machine for 24 of 26 days. @4.5 hrs a night. OAI is .42, HI is .21 CAI is .63 I have never had sleep issues or energy issues the next day. For me it's more a huge inconvenience and basically drives me to lose enough weight to bring the bogus measures of BMI to a level under that criteria and have a MD determine the SA therapy is unwarranted. Or I change careers.

[js12278]

js, I'm curious -- what is the AHI that puts a person in the "must get treatment" group by your employer?

The information I was given was an AHI of 15-17