diagnosed with sleep apnea, need some advice

I was directed here by a good friend of mine, who is herself active here under the nom de net "Kiralynx", because I have a problem and she thinks you can help. I don't know if you can help me or not, but I don't have anywhere else to go. I'll try to keep this short, but I can provide details on request.

For years people have been telling me I should get tested for sleep apnea, and I've always resisted. But my sleeping has been getting noticeably worse, and this summer I finally decided I really do need to do something about it if I can. So I made an appointment with the local sleep center: an initial consult with a pulmonologist, then a home sleep test. The consult had some warning signs, but I went ahead with the home test anyway.

The test was a complete disaster: I had my worst night of not-sleeping in years, and very nearly gave up on the whole idea when it was three in the morning and I had logged perhaps one hour of sleep and one hour of extremely shallow, erratic dozing. But I managed another couple of hours of sleep and sent the test device back to the lab the next morning, along with a set of notes telling how bad the night was and emphasizing that it was completely atypical for me.

Last week, exactly three weeks after the test, I got a callback from a nurse at the sleep center. She skimmed quickly over the results in a rushed and rather disinterested tone, then said their analysis found both obstructive sleep apnea and something to do with "your brain not telling your airway to open when it should." (Huh? They're diagnosing brain damage from a heart rate and blood-oxygen levels?) And they wanted me to make a second appointment for an in-lab "titration" session based only on those few bits of information. (Again, huh? "Titration" is something you do with a chemistry experiment, not a human being.)

Over last weekend I sent the pulmonologist a strongly worded note making it plain that I didn't believe what the nurse told me, I didn't see how they had gotten any trustworthy results out of the sleep test, and I needed more information – a lot more – before I could even consider doing anything more. The note got results: Tuesday night the pulmonologist called me and we talked about my note and the test results for about 30 minutes. I now have a little better understanding of the test results, but my BS-meter is still well into the yellow zone. He did give me some solid numbers – he saw two to three hundred "obstructive events" over the course of the night, oximeter readings below 88% for about 40% of the time, the lowest reading was 65%. But there was still something very wrong about his attitude – it felt like he was trying to answer my questions and at the same time tell me as little as he could get away with.

My problem, simply put, is what do I do next? I have not yet agreed to the titration session. Why not? To start with, I don't trust what the doctor is telling me. I don't think he's lying, mind you – I think that he's suffering from an assembly-line mentality: a one-night test, a perfunctory analysis, get 'em on a pap machine, and on to the next one. Well, that won't work with me. I know they got incomplete and atypical data. I know I'm different from their usual patient in multiple ways. I know their analysis is subjective, based on assumptions that may or may not apply to me.

Then there's the casual attitude that everyone involved seemed to have – everyone except me. They didn't tell me everything about how the test equipment worked. They don't seem to have paid any attention to what I told them in the initial consult about my rather erratic and abnormal sleeping patterns, and my chronic congestion that forces me to breathe through my mouth, rendering the nasal tubes in the test gadget useless. And I strongly suspect that what they analyzed wasn't the raw data, but a cleaned-up and computer-enhanced version of it. Computers are wonderful things, but they cannot turn bad data into good data no matter what TV claims. The whole thing feels like assembly-line medicine – something I hate and do my best to avoid.

Finally …. well, to be quite blunt about it, I find the whole idea of using a pap machine revolting. I know it works well for many people, and more power to 'em, but for me … well, imagine that your doctor has just told you that you have some newly-diagnosed gut disorder, and the only known treatment is to drink a glass of raw sewage with every meal, for the rest of your life. That's roughly how I feel about using some machine to breathe for me every night for the rest of my life.

I want to do something to improve my sleep – but what do I do when the only therapy any doctor is willing to offer is one I can't use?

With that negative attitude CPAP may be a problem for you. You have to want it to work.

As previously said, you're going to need to commit to this journey -- but only if you want to.

Yes, it's bizarre, scary, weird. I get it. It's also the gold standard in treating sleep apnea. And if you think about it, it's not surgical, it's 'reversible' (stop using it), it's not painful.

It will be uncomfortable at first, and there isn't a "right' mask I can tell you to go get that will work for you - all the interfaces are very personal; what works for one will be terrible for another. Initially you won't sleep well and will want to quit. It will take days, maybe weeks to start getting comfortable with it.

There's a lot to absorb.

But in the end it was life changing for me - I couldn't focus, could sleep for 10+ hours and wake up exhausted. I also snored terribly and I would gasp for air as I slept. I'm incredibly grateful I found it (as is my spouse).

So if you want to do this, there are people here willing to try to help.

Go get the titration; it will figure out what pressure (in cm H20 - will most likely be a number between 4-20) works best for you. Ask your doctor to prescribe a sleep medication to help at the clinic, or perhaps it will be a take home test (I have no idea).

Then come back in this thread with results and the suggested next steps.

I told my doctors for 25 years, I am so tired after I sleep. Not one of them suggested sleep apnea. At the age of 60, my life fell apart when I was diagnosed with a damaged tricspid valve in my heart. My heart is enlarged and I am in heart failure. My left kidney is atrophied and my right is at stage 3B failure. If I had been put on cpap 25 years earlier, I would not be looking at a short life. Sleep apnea is a slow death but a certain one. Get over yourself and choose to live.

In the U.S., you have a legal right to see your sleep study. Ask the clinic for a copy asap. Then blank out identifying information and scan it. Then use a hosting site like Imgur to post the image and give us the link. We'd be happy to take a look and comment. This could really help you with your next steps.

PhotoWolf wrote: ↑

Fri Dec 08, 2023 6:23 am

Finally …. well, to be quite blunt about it, I find the whole idea of using a pap machine revolting.

as this is forum is titled CPAPTALK, you're not going to get anything but recommendations to use cpap.

dunno what to tell you, but i'd look elsewhere.

maybe drinkingrawsewage.com?

Why torture yourself, the sleep center, and the doctor? If you don't want to do it, don't do it. You don't need anyone's justification.

Once I was you. I was in total denial about my sleep apnea (but deep down I knew I had "some"). I could not possibly imagine sleeping with a CPAP. Revolting is a great word for it. No way I was going to wear something strapped to my face in bed!!!

My poor husband had to sleep on the couch for nearly 3 years because my snoring was so bad he couldn't sleep in our bed. He was so sweet about it. He had a wardrobe of warm, footie PJ's because it was COLD in our living room. He never complained. I would fall asleep anytime I was sitting and not doing anything--in the car, trying to watch TV. And--embarrassed to admit it now--sometimes micro sleeps behind the wheel with my children in the car. I couldn't even drive to the next town without pulling over in a parking lot to take a short nap.

I finally agreed to a test for my husband and children. I did a home test (Kaiser) and thought I had a really good night. My test results were SHOCKINGLY bad (and not nearly as bad as yours!). And I knew it was time to stop playing games.

We have a saying here "Denial isn't just a river in Egypt". You suspect an ulterior motive from a system that has nothing to gain except not having to provide you with a lot more expensive treatment for your stroke, heart attack, or dementia if you don't start treating sleep apnea. That's the height of denial. I've been there, done that. I get it and you have my absolute sympathy. But it's time to put on your big girl panties.

I'm a "show me" kind of person, so I VERY RELUCTANTLY went to the group meeting (I really hate Kaiser) where they give you the results of your sleep test and talk about CPAP. They show you a graph from your sleep test. You don't have to share it with the group, but blue lines on the graph are apneas, white spaces are no apnea. The people in the group willing to share were showing a white graph with some blue lines. Mine was nearly solid BLUE. A very few thin white lines here or there. My O2 was down to 78% a significant part of the night. Time to stop denying.
So Miss Emerita's suggestion to ask for a copy of your sleep study is a good one. You need to see for yourself.

Then you may need more "show me" because you don't trust the source. Normal oxygen saturation is 94 - 100%. Below 92% they want you on supplemental oxygen. Anything in the 80's for a significant period of time is pretty bad. Your brain needs oxygen. You can buy yourself a recording pulse oximeter for cheap https://a.co/d/16yUrL0. Get one and see for yourself. Prove to yourself whether the sleep clinic you're working with has an agenda or not. If your O2 stays above 94% all night, no erratic pulse, then they can go pound sand.

If and when you are ready to face this, we can help. Nobody is going to lie and tell you it's easy. It was harder than even I imagined. I struggled for months to be able to sleep through the night with CPAP on. I fought anxiety, claustrophobia, sensory issues, skin issues, embarrassment and HUGE anger. But I couldn't keep putting my marriage, my kids, my life, my livelihood at risk. So I fought myself to succeed. Every night was a battle.

But every night I worked at it--got advice from here--and it became less and less of a battle over time. One night I slept all the way through to morning. I woke up feeling like I last remembered feeling when I was a toddler in my crib. Calm. Peaceful. Comfortable. Safe. It was like waking up on a cloud. It was like I'd taken the best drug ever. And no, it wasn't like that all the time. There were more bad nights than good. Then the good nights started to win. And then, it just was. I get into bed, put on my mask, go to sleep. Instead of an AHI in the 100's, it's 0.1. I wake up calm and rested instead of angry and like I fought a lion all night long. I actually LIKE to lie there with my mask on for a while when I wake up, enjoying the calmness before the stresses of the day start hitting me. When I stopped revolting against CPAP, it was no longer revolting to me.

I think I'm alive today because of CPAP. I'm pretty sure I was circling the drain, slowly, inevitably. My life got so much better when I had enough sleep and enough oxygen all night to think clearly during the day.

Ultimately it's up to you. WE can't fix your attitude. WE can't tell you what to do. But I suspect you wouldn't have posted here if you didn't believe, deep down, that maybe there is something to this and you need to pay attention.

We're here if you want help. Otherwise, best of luck to you.

PhotoWolf wrote: ↑

Fri Dec 08, 2023 6:23 am

That's roughly how I feel about using some machine to breathe for me every night for the rest of my life.

The members here are very forgiving. If you change your attitude and need help, the members will give you excellent advice.

BTW, CPAP machines do not "breathe for you". They simply splint the airway open so that YOU can breathe.

What are you doing to address the chronic congestion?

I've had upper respiratory and sinusitus issues my whole life up until I had sinus surgery. It was so bad that it hurt to fly. The takeoff was fine, but the landings made my eardrums feel like they were going to rupture.
In addition to the surgery, it was helpful for me to get sugar out of my diet.

My night at the sleep study "hotel" was just like yours. Pretty much the worst night of my life without someone dying. I slept two hours. The score came out 30, Moderate/Severe.
Fast forward about 12 years and I'm just fine with the machine keeping my airway open every single night of those years. I'm one of many here who would tell you: Even if we found out tomorrow that we no longer have sleep apnea, or it was all a hoax, we'd keep using CPAP anyway. Because our sleep quality is way, way better than without it.

Being referrred by an esteemed member gives you some grace. Most of us didn't go into this having a ball. I wanted to give up. Oh how I wanted to give up. But I was scared to go to sleep so I had to figure something out. Without CPAP I was waking with my heart pounding and gasping for breath. My dreams were full of ways for people or animals to suffocate, drown, get choked, etc. I got a lot of hand holding here for which I'll be eternally grateful. Eventually I made peace with the treatment, and would never even consider laying down in bed without it. Getting better sleep enabled my brain to recover enough to safely resume driving and cooking again. My only regret is for the years lost and the damage done. In thinking about your test, certainly a horrible night would make one doubt the reliability of the results. But being mostly awake or sleeping restlessly should not make your oxygen drop. That part would give me pause. Get whatever further info you need to feel satisfied. Surely something caused you to get tested in the first place. Only you can decide what you are willing to do to help yourself. BTW, there are other treatment options, but as was already mentioned, CPAP is considered the gold treatment. There are dental devices, which in the opinion of most here should only be considered after extensive information gathering. There are stimulators that are surgically implanted, but they are still new, so the jury is still out on them in my opinion. It would be easy for you to find a doctor willing to cut out some of your tongue and throat, but you won't find many proponents for that here either. I had 3 personal friends who had surgery because they said they couldn't use CPAP and they all still had sleep apnea after surgery, but then had trouble managing sinus drainage and one snorted drinks up his nose. So, there are other options but they are not for everyone or to be entered into lightly. Best wishes going forward.

Miss Emerita wrote: ↑

Fri Dec 08, 2023 12:27 pm

In the U.S., you have a legal right to see your sleep study. Ask the clinic for a copy asap.

This is useful information; and I'll put it to use this afternoon. Thanks.

Curious_Steve wrote: ↑

Fri Dec 08, 2023 8:25 pm

What are you doing to address the chronic congestion?

At the moment, I live with it. At its worst it's like a bad cold -- not a problem except when I'm lying down and the drainage goes into my throat. I have had a sinus MRI that found nothing; without a course of extremely expensive allergenic tests, the best any doctor can tell me is that I am sensitive to multiple allergens. Anything from pollen to extremely dry air can start my sinuses going. I can't use most over-the-counter decongestants; they're all contra-indicated for someone with a history of a-fib. When it gets bad I use a plain-saline nasal spray that was recommended by my cardiologist. Sometimes it helps, sometimes not.

My thanks to the rest of you for offering your thoughts. Oh, one thing @janknitz: you might want to be more careful with your assumptions. I'm a him, not a her. Always have been.

PhotoWolf wrote: ↑

Sat Dec 09, 2023 1:17 pm

My thanks to the rest of you for offering your thoughts. Oh, one thing @janknitz: you might want to be more careful with your assumptions. I'm a him, not a her. Always have been.

I don't think that was being assumed, she was simply speaking from her personal experience, from her point-of-view.

Being on CPAP is not as bad as it seems up front. Getting through the tests and first getting fitted for a mask are the worst part, that's over soon. Settling on a mask can be challenging. After that, it's something you only use while sleeping and doesn't negatively impact any other day to day activities. I consider that non-invasive. I'd recommend going with the flow (pun intended). You can always change your mind later on if you like.

Jim