confused by son's new diagnosis

I have sleep apnea and advised my very overweight grown son who apparently snores badly to have a sleep study as my normal weight dad also had it and it can be genetic too.

He took my advise and called saying he had a sleep study and he was having 80 apneas an hour. I am stunned it is so high. (I think over 40 is considered severe according to a site I saw.

How can he have so many..that's one about every 45 seconds..how much is he breathing. I know they can last a while. What is the average length of time an apnea event lasts before one breathes.

He is 33 years old. What is interesting, he says he is not fatigued or sleepy (while I have continual fatigue). I haven't noticed any cognitive decline..he seems sharp as ever. He says he thinks sleep is not that necessary and that he only sleeps 5 hours a night, He joked maybe with a cpap he'll get by on 2 hours. This has me concerned. Why doesn't he have symptoms (other than snoring)? and what are the symptoms/effects of untreated sleep apnea.

The only thing I notice is is he is real irritable but he says it's only with me cause I stress him out. Now that I think of it, he did say his blood pressure is high and I think that's a symptom.

What machine might be best. I recently learned of autopap and auto bipap or will straight cpap be fine with that high number of events. I would think that he would need a high pressure and might retain CO2 with a cpap.

Are there any important questions he should ask the doctor (he is going for a 2nd study to find the pressure and get machine after doctor visit). I don't want him to go through 15 years using cpap and then finding out the pressure was wrong and other things and that's why you aren't better.

Since he doesn't seem to feel tired, he may not notice if cpap is not working. Please talk to me. Isn't this really a high number--80 an hour. Will the machine fix it?

Thank you.

Please tell me if you have sleep apnea and were not fatigued or sleepy as I thought this was common to have.

80 is high but there are several people on here who had numbers in the 100s per hour. Just because his number was that high, don't assume he will need an astronomically high pressure to correct it. So don't assume he will need a bipap machine to fix it either as those are highly expensive.

I didn't know I had sleep apnea (Tested at 40 events per hour). Yea I was always tired, as I always seem to be for past 10 years or so, but nobody told me I snored, I never woke up in a panic unable to breathe, in fact I never woke up at all until the alarm clock went off. Occasional bouts of insomnia, poor sleep habits, stress and depression, I figured is what kept me tired all the time. I don't have problems with high blood pressure. The only key factor was the fact that I woke up every single morning with a headache. Thats what clued my Dr. into sending me into a sleep study, with the fact that I had gained significant weight in the past 2 years.

Everyone is different, and everyones reasons for gettting a sleepstudy is different.

Pressures you are titrated too seem to be linked to more anatomical structures, etc. You see people that had 170 events doing well at a pressure of 8 and people with 30 events at 15 pressure.. and vice versa... Its all about what amount of pressure it takes to keep your airway open as you relax and sleep.


as far as retaining carbon dioxide in your lungs, I have no idea how u would even know that.... suffocation feelings at pressures above 10 surely is a mental thing.... strap it on and get over it... kinda like claustrophobia.. strap it on and get used to it.. Wear it and live, don't wear it and risk dying... Choice is yours.

He is young and might not realize he is fatiqued or maybe he just isnt. I have had sleep apnea for many many years but only recently got help.

When I was 33 I was full of energy. I wonder how much more energy I would have had if I was on the hose then.

Sleepyjane, I'd be willing to bet that your son has suffered sleep apnea all his adult life and he has no basis for comparison to know how it feels to be well rested. Perhaps he's simply been "running on empty" all his life, and doesn't realize that's not normal.

sleepyjane wrote:Are there any important questions he should ask the doctor (he is going for a 2nd study to find the pressure and get machine after doctor visit). I don't want him to go through 15 years using cpap and then finding out the pressure was wrong and other things and that's why you aren't better.

In my opinion, the single most important thing he can do is to take personal responsibility for CPAP therapy himself. He should simply tell the physician that he wants to monitor his therapy himself, and would like the doc to prescribe a machine which provides monitoring capability. (He might also ask the doc if the doc monitors the ongoing AHI of any of his patients. That should be an eye-opener for everyone. Please report back here on what excuses the doc provides to justify not monitoring his patients.) In other words, he should make sure that he doesn't get a dumb, cheap, bottom line machine which is very likely to be of so little use to him that he's more likely to quit therapy rather than giving therapy a chance to benefit him.

Regards,
Bill

I am one of those people with a 100+ per hour. A lot of people think that the higher your numbers the higher the pressure needs to be. This isn't the case. The pressure needed to keep your airway open varies from person to person which is why during the titration portion of a sleep study or home study determines a good starting point. By having the right equipment allowing you to monitor your therapy and make adjustments accordingly is the best way to get the pressure settings for you. Your son should insist on a machine that will allow him to record and download data nightly. Most insurances won't pay for the software and that would have to be purchased out of pocket. He should also join this board and read, read, read so he can intelligently discuss OSA with his doctor and DME. And get tips on how to demand and get the proper equipment.

Getting the proper treatment for OSA will assure him of good quality sleep to help him on the road to a longer life.

BTW...my current AHI: 0.05 or lower with a pressure of 10, thanks to this board and the special help of Wulfman....(thanks Den!)

Mine was 102 but I think I have had apnea for the past 25 years or more ... that is when I was first told that I snored like a chainsaw. I did not become so fatigued that I noticed it affecting my life until a couple of years ago. I had never heard of sleep apnea before until my PC doc had me take a sleep study last summer.

The human body is amazing at adapting ... but at some point, a critical point is reached and the body can no longer cope with the abuse and neglect of an unhealthy condition.

I was lucky I did not have a stroke or heart attack before being diagnosed with OSA ... others are not so lucky. In addition, your son's inablility to loose weight may be related to his untreated OSA. He needs to accept the treatment and get with the program if he wants to maximize the length and quality of his life.

With the help from this forum ... I have reduced my AHI from 102 to 0.4 and the difference it has made in my life is like night and day ... pun inteneded

sleepyjane,

I have to chime in here.
It's true.
I never had drowsiness.
I had rage.
I drank a lot of coffee to compensate.

I found it very annoying that so many of the Apnea screening tools are based on DROWSINESS when you do this and when you do that because that sure wasn't me.

-Bev

Get him on a machine ASAP! The longer he waits, the more damage it will do to his system.
And, like the others have said, make sure he gets a machine that gives him data so he can monitor his own therapy.

Best wishes,

Den

SleepyJane,

I was one who was able to remain high functioning for many years even with multiple sleep disorders. Ditto to what others said about the body's amazing ability to somehow compensate for shortcomings, and that sometimes the changes are so longstanding or with subtle progression that one does not recognize how far from feeling well they really are. Mine "slipped in" under the radar during a 3 year struggle with another illness, so it took a while to realize that what was affecting me was not residual effect of the other illness.

Funny, but as I was writing this I thought of something for the first time in over 20 years. My ex told me I snored (didn't believe him). I was young, trim and athletic. In the early 1980s the doc ordered a CT scan of my head due to chronic headaches and memory glitches. I assumed it was the stress of having my head knocked up against the wall from time to time. (Notice I said "ex") Wonder if I had sleep apnea even then...

Reminds me of the oft used illustration of a frog in water with gradually increasing temperature that will stay in till it dies because it doesn't recognize impending danger. (Wonder if that's really true?)

Hopefully your son will discover a new normal and the years to come will be better than he even imagined.

Kathy

Ask your son to read the articles under the light bulb above, starting from the top including Are You Sleeping with the Enemy? You, too.

thank you, everyone, for your comments. I will respond more fully to your comments soon. Modem was broke. I need to leave right now though.

Kathy,

Your post rings really close to home with me. I was also young and athletic in the 80's and had chronic headaches and my memory was not good.

I recently dug through some boxes (you comment on you ex is my situation now and I believe a lot is due to the snoring and not recognizing it) and I saw a thyroid test from 1998.

I couldn't really pinpoint when I started feeling tired, but I know the thyroid test was for that (as well as anemia tests in there somewhere) and I know the headaches were going on in 1989 at least. I also wonder how long I had apnea and the snoring that was disrupting my sleep. My soon-to-be ex only recently (past couple years) started complaining about my snoring. I also disregarded his complaining since it "wasn't bothering me so how could it be bothering him"? Neither of us knew what CPAP was until 2006.

I am with you on the son getting treatment. I wish I had known sooner, my health might be better and I might still have had a marriage.

NightHawkeye wrote:Sleepyjane, I'd be willing to bet that your son has suffered sleep apnea all his adult life and he has no basis for comparison to know how it feels to be well rested. Perhaps he's simply been "running on empty" all his life, and doesn't realize that's not normal.


That is a very good point. My son did not realize his vision was so bad and one day he got glasses and was totally shocked at what normal was and what he saw. I can identify with that..didn't think my distance vision was THAT bad then got glasses and am shocked at how well people with normal vision see. I was 20/20 once but didn't recognize the slow decline till the glasses. I guess kind of like seeing someone who lost a lot of weight hits you more dramatically than if you see them everyday.

This is an excellent point.

sleepyjane wrote:Are there any important questions he should ask the doctor (he is going for a 2nd study to find the pressure and get machine after doctor visit). I don't want him to go through 15 years using cpap and then finding out the pressure was wrong and other things and that's why you aren't better.

In my opinion, the single most important thing he can do is to take personal responsibility for CPAP therapy himself. He should simply tell the physician that he wants to monitor his therapy himself, and would like the doc to prescribe a machine which provides monitoring capability. (He might also ask the doc if the doc monitors the ongoing AHI of any of his patients. That should be an eye-opener for everyone. Please report back here on what excuses the doc provides to justify not monitoring his patients.) In other words, he should make sure that he doesn't get a dumb, cheap, bottom line machine which is very likely to be of so little use to him that he's more likely to quit therapy rather than giving therapy a chance to benefit him.


this is also a good idea..can one monitor cpaps and bipaps or only autopap and autobipaps?

Regards,
Bill

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thanks Bonnie,

I will pass that information on to him and I think I will email him this link.

In order to operate the software, does anyone know the following info
as I also am thinking of doing this.

I have the card and an autobipap m series with biflex I got today.

What do I need to read my nightly data? ..I think I need software and a reader..is there anything else? Do I need any wiring to the computer or anything..I am not sure what it means by a free UVF port (I forget what initials it was maybe not UVF..someone probably y knows what I mean but do I need adaptor or additional cords and such.

Do you have the links to the reader (I have that one someone gave me but please report it), software and any additional things I might need,

I am trying to figure how much the whole sheebang is.

Also will I be able to interpret it..is it hard. Do they give adequate instructions?