My story so far...and a question

[tripledee138]

I'm a youngin here - just turned 28. I've been overweight since I was 7 (I was a preemie and wore a size 4T at 6..and then within a year I ballooned). I've had high blood pressure since sophomore year of college and I've been on medication ever since. I had a sleep study done about the same year but was diagnosed as mild OSA, so no treatment was prescribed, except for 'lose weight'. Well, I did that..and it seemed to work for a while, but then I stopped doing what I was doing and the weight came back. And then so did the sleepiness, always wanting to take a nap and all the other 'classic' symptoms. I had switched insurances at work and had a high deductible, so I was a little hesitant about spending the bucks for another sleep study, but I couldn't take it anymore. Constant tiredness, heartburn all night, waking up choking, still high blood pressure while on some new fancy expensive pills that "always works in everyone else!". So I took the plunge and got the sleep study.

And it was the best thing ever! I told the doc beforehand that I wanted a split-study - I couldn't afford to do two. He said it was perfectly okay and that's what happened. He had also mentioned that I should be getting a call from his office within 3-5 days with the results (that's how concerned he was!). However, the call never came (I lost track of it..I blame it on my sleep deprived brain) so I didn't end up going back until a month later. He was annoyed I didn't get the call (not at me, at the staff), but when he went over the results with me, I was a little..surprised and also a bit scared.

He showed me the numbers, the graphs and the charts. Then he showed me the AHI number and explained what it was. It all made sense.

During the sleep study, my baseline AHI was 90 (yes nine-zero). I'm no math major, but that's more than one time per minute. He also showed me my blood oxygen level chart - at one point it went down to 58% (Aren't there alarms in hospitals when your oxygen goes below 90%?) No wonder I could hardly function during the day. (I HATE coffee, so I didn't even have that to help me stay awake!) Before I left the doc's office, I had talked to him about APAP vs. CPAP and he said he would like me on CPAP - he said that due my size (ugh!), an APAP might not function as well. Whether that's true or not, I still don't know, but by that point, my sleep deprived brain was ready to go and start getting treatment.

When I got to the sleep apnea supply store, I mentioned that I had a high deductible for my health plan, but she (the tech) didn't seem too interested/worried. That annoyed me a little, but I'm 28. I know how to use the Internet and I know how to do research. So I went with it. She showed me a few machines, and we talked about masks. My entire life, my nose has been nothing been a stuffy mess and when it isn't, I still can't rely on it to breathe. (Turns out I have a deviated septum..) So I went with a full face mask. I had done some research beforehand (while waiting for the doc call) and was pretty much set on a full face mask. I do have to say though - I was very grateful for the tech for taking me on such short notice.

When I left the supply store, I was now the proud owner of a ResMed S9 Autoset and a Quattrao FX Full Face mask. I almost couldn't wait to go to bed to see how much better I would feel.

It's now been 31 days since I started using my machine. On the little screen readout, it says I've used it for 31/31 days, every night greater than 4 hours. I got myself a copy of the ResScan software, looked at my data and had the card read by the DME (I asked them about reading the card on my own - they told me "Well you need special software.." - I just played dumb and said, "Oh okay..." - hehehe ).

I have an appointment with my sleep doctor coming up..and I still have some concerns. I did get my "download" (i.e. printout) from the DME, so I'm going to use that as question time with my doctor.

I guess my major question is...how do I 'take charge' of my treatment without sounding like I know more than the Dr.? (I also don't want to give away that I've read the clinician manual and have the resscan software - not sure of the reaction to that).

My AHI started off at about 20 (once I started using the machine) and has now been (for the past week) been below 5 every night. I know that below 5 is 'normal'..but shouldn't i be at 0 or 1 with CPAP? I don't want "good enough" - I want better.

Maybe that's how I'll phrase it. Spending close to $3000 for everything..I don't want "good enough". I want more than that.

Any advice/comments are appreciated and thanks for reading my story. I hope that as I progress on this journey (with an understanding and caring partner) that it may help others as well.

[builta]

Welcome. Your on the right path to taking charge of your therapy just by finding and starting to interact with this forum.

First, let your sleep doctor do their thing. Let them know that you would like to actively help them control your therapy and recovery from long term Severe Obstructive Sleep Apnea. See how the doctor responds to your request. You don't have to push them, there are many members of the forum that can help tweak things if needed.

Just realize that this is a long term project and recovery can truly take months.

As for your AHI, the machine's report of the values are "estimates." Many members have been able to improve the machine's reported AHI. Mine are very low (about 0.2). But, theses are mechanical algorism estimates. Each different manufacturer and different models of XPAP machines use different software and they "score" the values differently.

Many members consider their treatment a continuing "Work in process" after years of treatment.

Cheers

[W_HAMILTON]

Others are probably better equipped to answer your questions, but I was wondering ... as someone also new to CPAP, how do you feel overall since starting treatment? Have you noticed many changes?

[tripledee138]

Others are probably better equipped to answer your questions, but I was wondering ... as someone also new to CPAP, how do you feel overall since starting treatment? Have you noticed many changes?

I am feeling better - I can now make the drive to & from work without feeling like I'm going to dose off..and I can stay awake for most of the day at work, except for the most boring meetings!

The only thing is that I don't think I remember what 'good' feels like, so I'm not sure if I'm there. I still get pretty tired at night (usually around 10:30pm) but I'm not sure if it's general fatigue or just more like "bedtime".

I will discuss more with my doc when I visit.

[tripledee138]

So I promised an update.

Saw the sleep doc this week. I had a 'download' (OMG - it's a printout!! not a download oy...forgive me, I tend to overreact when people misuse geeky terms.. ) from the DME place sent to the office.

Kinda went something like this:

Doc: How's the treatment?
Me: Meh, it's not so bad. Take some getting used to..but I'm doing alright.
Doc: Glad to hear it. You even sound better (takes blood pressure). Pressure's good too!
Me: Didn't think I sounded better..but my nose is definitely less stuffy.
Doc: Yep..no longer beating on that airway is helping.
Me: Cool! I have a question about my charts from the DME..what should I be paying attention to? AHI..?
Doc: No! AHI is BS. All I look at is your usage. You should be getting the same amount of sleep every night. Let your body regulate the amount of sleep. Notice these days where you slept in? Don't do that!
Me: But why?
Doc: Because then you mess up your rhythm. 15 minutes more sleep at 'night' is better than a 1 hour nap during the day. It's all about cycles..
Me: Okay..but sometimes when I wake up I look at the clock...
Doc: Don't do that either!! That will definitely mess you up and prevent you from getting the sleep your body is craving right now. Just look anywhere but the clock. Then go back to sleep.

That's mostly the convo. I thought it was odd that he wasn't so concerned with the AHI numbers...for the past month, I've been below 5 everyday..so it's definitely working.

I have another appointment in 3 months. We'll see how it goes then.

[Wulfman...]

I would be ditching that doctor if I had one with that kind of attitude.

Come to think of it, that's what I did six years ago.


Den

[GumbyCT]

I have another appointment in 3 months. We'll see how it goes then.

Why bother? Have extra money?

[M.D.Hosehead]

Doc: No! AHI is BS. All I look at is your usage.

If he actually said that, I suspect he's unwilling or unable to help you. You'll get far better help here. I did.

[SleepingUgly]

Good that you've learned so much. You already know the doctor is wrong about the AHI being irrelevant. You're on the right track.

[Gerald]

I've been tested by three different "sleep doctors" and none were impressive. I've done much better on my own....and I owe it all to the fine people on this forum. I haven't dismissed any of my "doctors"....simply because I may want a prescription change in the future. Other than that, I consider them worthless.

With just a couple of months on the hose, I think you're doing just fine. I do have one suggestion, however.

I disagree with the medical industry's "standard" that says an AHI under 5.0 is OK. Based on my experience, I believe that one must keep the AHI under 2.5 to obtain effective therapy. Over the years I've been on the hose, I've tweaked my system so that I rarely ever have an AHI over 1.0. My pressure averages around 10.5 cm and my therapy is very comfortable.

With your attitude, you'll do well. Over time, you'll adjust and adapt in such a way that it'll all be simple to achieve a good night's sleep with zero difficulties.

Do your own thing....use the doctor for the "formalities". He's just working the herd.....running the bovinely complacent thru the chutes....and milking the herd for as much cash as he can extract.

Save your money....invest in good equipment......and continue to experiment with different masks.

G

[idamtnboy]

Doc: No! AHI is BS. All I look at is your usage. You should be getting the same amount of sleep every night. Let your body regulate the amount of sleep. Notice these days where you slept in? Don't do that!
Me: But why?
Doc: Because then you mess up your rhythm. 15 minutes more sleep at 'night' is better than a 1 hour nap during the day. It's all about cycles..
Me: Okay..but sometimes when I wake up I look at the clock...
Doc: Don't do that either!! That will definitely mess you up and prevent you from getting the sleep your body is craving right now. Just look anywhere but the clock. Then go back to sleep.

Saying AHI is BS is like saying make sure you check your blood pressure every day, but what the numbers are doesn't matter. But just like blood pressure, the ideal number for each of us is different and finding it may be nigh impossible. If it takes very little effort to get down to an AHI of 5, good. If 50% more effort gets you down to 2 or 3, and you're quite willing able to exert that effort, then go for it. But if you have to expend another 100% increase in effort to go from 2 to 1, then is it worth it? I think probably not. I'm down to around an AHI of 1 most of the time, but I got to that number with very little, if any, extra effort. In my case simply putting on the mask dropped me below 5! Do I want to get to zero? It would be nice, but I doubt the additional benefit would be noticeable. Why get wrapped around the axle for a theoretical goal with little practical benefit? But if you can get to zero without consternation, then go for it. Only you can decide for yourself where the balance point is between effort and benefit.

There's a lot of research, so I've heard, that shows naps can be very beneficial, even for the young and healthy. Sleep professionals don't agree about naps. My sleep doctor said no naps is the goal. His NP, who I visited with last time, said she doesn't agree, that naps can be very good. I still take a nap up to an hour long most every day. But I also find I can go all day without one and just get sleepy earlier in the evening. My veterinarian brother has taken a short midday nap his entire career, starting back in his 20's. He said it always refreshed him and made it easier to get through the rest of the day.

Rhythms and number of sleep hours is probably something to consider, but I don't agree at all with the the emphasis your doc places on it. Interestingly, I find I function very nearly the same most every day whether I get 6 hours or 8 hours of sleep, although I can't go days on end without a 7 1/2 or 8 hours night. I attribute that to the effects of using a CPAP. I say when you need to get up early, get up early. If there's no need to get up, and the bed feels 'soooooo good', stay there until you're good and ready to get up. When your body is rested, you'll wake up and won't go back to sleep. I believe that to some extent one can condition their body to sleep more hours than necessary. That you don't want to do.

Do what makes you feel good. And in spite of what you want, this very well may be one time where 'good enough' is good enough!