So... I got a call from my sleep doctor the other day. It was a little bit of good news couched in bad news. First, some background...
I have severe sleep apnea. I was first diagnosed with it by one doctor in the early 2000s... then again with another in about 2010.. and then again with still another in 2018.
Why did I go to three different doctors for the same diagnosis? Your first thought might be that I didn't believe the first two. But I knew I had it before it was confirmed through the first sleep test I experienced (which was a nightmare, by the way, as was all the others).
Switching doctors had nothing to do with the diagnosis. It had everything to do with the treatment, or lack of useful treatment, to be specific. Nothing the doctors encouraged me to do worked for me, and not for lack of trying.
The first doctor immediately prescribed a CPap. I tried so hard to use that CPap but had no success. It was more than not liking the way it felt... I literally felt suffocated.
Somehow I found out that an ENT could help figure out what was going on. I'll never forget the end of that visit. The ENT was so mad, telling me at the end of the appointment something along the lines of, "These sleep specialists make me so mad. They never check with us to make sure that a patient is able to handle a CPap before they prescribe it."
Yes, I was one of those he was thinking about in that statement. I actually had several issues that made a CPap not a good fit. These issues were structural, not just emotional/mental (like I just didn't like using it). So I gave up and figured I'd just have to deal with it somehow.
A few years later I was so incredibly tired that I knew I couldn't ignore it. I found a new neurologist and went through all of the testing again. I told him at the first appointment that I literally already knew that CPAP wouldn't work, that an ENT had confirmed it.
What did he do? He told me that I should try another type of CPAP (BiPAP) with the newest, latest mask would make it work. And he prescribed it for me anyway.
So I bought another CPAP unit and went through all the hassles of trying it again. The newest, latest mask didn't work so I tried other kinds (which I had tried the last time). Was it really too much for him to believe that my physical issues didn't just go away in that period of time?
One thing, though, he did listen to me when I told him I tried it but it didn't work. He suggested a mouth guard, an appliance to keep my lower jaw forward, which would help open my airway.
This appliance was a pain to obtain and it wasn't covered by insurance, so it was extremely expensive on my meager salary. But if it worked, it would be worth it.
It wasn't fun to use, but I was able to tolerate it. I did yet another excruciating sleep study to check for its effectiveness. I knew I wasn't as tired during the day so I was ready to hear some great news.
It wasn't. I still had severe sleep apnea. So I figured why go to all that trouble to use the thing if it wasn't helping me? I abandoned that treatment too.
Fast forward even more years... I had a couple of people who saw me sleep say that I stopped breathing, a lot. I heard of a new surgery for sleep apnea that totally bypassed the oral/nasal routes that I had tried to compensate for before. So I decided to try again.
Thankfully, this time I found a truly amazing sleep specialist. For one, she didn't make me go through a sleep study to confirm what I already knew I had. Furthermore, she really, really read through my records and figured out some issues that the other doctors hadn't found.
We looked into the surgery that I was hoping to get, but I'm not a candidate due to some other health problems. So she convinced me to try the CPAP once again, with an even better model, a brand new, just came-on-the-market mask, and settings that would accommodate my physical issues.
I was again encouraged that this treatment would work. But once again, it didn't. I just couldn't do it. I really tried, but it was to no avail.
But my doctor didn't give up on me. She asked if I wanted to try an oral appliance. I told her that I tried it before and it didn't help. She told me that the other doctor had misrepresented the data from that sleep study... it had helped but was not helping the numbers get to a point where it wasn't a problem.
That really upset me. If I had known that it was helping, even a little, I would have kept wearing that mouth guard. But that's in the distant past. It was time to see what I could do now.
Again, the process of getting a new, custom-fitted mouth guard was a royal pain. I won't go into all the details, but it took almost a year to get it done (COVID didn't help but it wasn't the only obstruction).
So, finally, I get it and start using it. It seems to be helping and I have more energy than before. So I had yet another sleep study to see how much it was helping.
And that brings me to the day earlier this week. I got a call from this doctor explaining the results of my sleep study. Her first words were, "What am I going to do with you?"
My heart sank. It turns out that it is helping, but again, not nearly enough. Because I know it is helping, I'm going to wear it, even though it's not curing anything.
But it's really discouraging. If you read this blog any at all, you know that I'm extremely overweight. The sleep apnea is part of the reason I'm so overweight, as being really tired all the time makes it extremely hard to exercise consistently. But on the other hand, being overweight makes the sleep apnea much worse.
It's a chicken and egg situation. If I lost weight, the sleep apnea would improve. But until I get the sleep apnea under control, it's extremely difficult to lose weight.
This is why I sometimes wonder if I can keep going on like this. Every time I get something fixed or treated with my physical and mental issues, something new pops up, often from the treatment itself.
However, I will. I have too much to live for to give up. It's hard, so very hard, to keep dealing with the myriad of diagnoses that I have, but the other choice is not an option. I'm not a quitter.
I'm also very thankful that she's not giving up either... on me. She's still trying to figure out something that will help, even with all of my other physical and mental issues that makes this thing so hard to treat.
I hope that if you are going through a similar struggle, you'll know you aren't alone.