Iancdub88,
First please re-read what ozij wrote to you. She said a lot of good things in her last three posts, particularly this:
ozij wrote: ↑Sun Sep 22, 2024 11:17 pm
Iancdub88 wrote: ↑Sun Sep 22, 2024 9:59 am
I want to seriously ask how dangerous it would be to stop PAP therapy for now and seek out other options?
Strange you should think we can answer that question.
The only
serious reply to that can come from a physician who knows all about your medical status. And they should consult with your psychiatrist and psychologist of course.
We may have thoughts and opinions, even very firmly held opinions, by you have no reason to trust us on those, since only you and your doctor / psychiatrist / psychologist know about
you specifically.
And keep this in mind: The folks who stick around this forum long term in order to advise the new CPAPers are folks who swear by CPAP therapy
because CPAP works and works well for us. In other words, you aren't going to find folks around here who are going to tell you to just give up on CPAP and seek out some other way of dealing with the OSA---even though many of the long time posters, including me, went through our own hell before figuring out how to make it all work
for us in our bedrooms every night.
Now when we were in our own hellish adjustment period, some of us may have given serious thought to finding alternative treatments, but for one reason or another, we stuck with figuring out a way to make CPAP work. In my case? It was plain old fashioned stubbornness combined with an inherent distrust of the other therapies available at the time of my diagnosis. And I think for many other of the long time posters who had serious adjustment problems to CPAP, the answer was much the same: Those other available options didn't seem any more attractive than CPAP itself.
What are those other potential therapies for OSA? Well, the ones I'm aware of include various surgeries, oral appliances, and the Inspire device.
The surgeries that some docs claim are effective for treating for OSA are highly invasive and have a pretty high failure rate, meaning the OSA is still significant after surgery and the need for CPAP is still there and the surgery can actually make adjusting to CPAP even harder.
Oral appliances? First, they can mess up the teeth if they're not fitted correctly. Second, they may not be enough to bring the OSA under good control by themselves. Third, there's no data, so another sleep test should be suggested to see how effective the device is, but this is often not done and so all you've got to go on is whether you feel OK during the day or not. Fourth, some people find the oral appliance just as uncomfortable to sleep with as a CPAP mask. Fifth, insurance may or may not pay anything towards getting an OSA oral appliance. Finally, sometimes an oral appliance is best used in conjunction with CPAP therapy: The oral appliance can allow the person to use less pressure than would other wise be needed and using less pressure may help the person sleep better, particularly if aerophagia is a problem.
The Inspire device? First it requires invasive surgery to be implanted. Second it only works if tongue relaxation is the primary cause of the OSA. And since it works by zapping the tongue with a small electrical charge when the tongue starts to relax, there's an important question of whether all those tongue zaps lead to unwanted arousals and bad sleep.
So if you are really interested in learning about other non-CPAP approaches to dealing with your OSA, you really need to start with your doctors---plural. They're the only ones who have all of the necessary information to answer your question about the benefits vs. risks of discontinuing CPAP therapy for your OSA while making an informed decision about what else you might be willing to try.
And as ozij pointed out: You can keep PAPing (for now) while investigating these other alternative OSA therapies. But folks around here will have limited experience with them, and what experience they have is likely to be
negative. And so they're back to using the PAP machine to treat the OSA.
Iancdub88 wrote: ↑Mon Sep 23, 2024 8:01 am
I think a lot of people come to boards like this because they're hitting dead ends with their physicians. I am pleading with them to take things more seriously and in contact with them most days but it's hard to even get a response sometimes. I am looking into a different psychiatrist at the moment for this very reason.
Yes a lot of folks come here because they are getting little or no meaningful support from their sleep doc or the DME when it comes to figuring out how to solve the basic newbie problems of learning how to sleep
well with the machine.
But we're not doctors. And when someone has a bunch of interwoven medical problems that all affect each other, we really can't provide the magic bullet that fixes everything.
In your case: We know that you've got depression, anxiety, OSA, CPAP adjustment problems, and an insomnia problem. All of those conditions are tightly interwoven together, and they all affect each other. Left untreated the OSA will definitely make it harder to treat the depression, anxiety, and insomnia. And the hard adjustment to CPAP is also affecting the depression, anxiety, and the insomnia. But the flip side is also true: Your current anxiety about the quality of your sleep and your depression is making it harder to adjust to CPAP and making it harder to rein in the insomnia monster. Added to this whole mix is the fact that the needed medication for the depression may be adding to the insomnia. And the insomnia is definitely making the depression and anxiety worse, as well as making the adjustment to CPAP much harder. In other words, you've got a Gordian knot of problems and cutting through it is going to be difficult.
In a perfect world, your psychiatrist, sleep doctor, and primary care physician would all be working together to figure out a course of treatment for
all of your problems. But we don't live in a perfect world and you have to work with the doctors that you do have.
Having said that, however, you do need to know that you have the right to fire any doctor who you think is insufficiently responsive to your needs. Back when I was a newbie, I went through 3 sleep docs before finding a keeper in sleep doc #4, who has, alas, since retired. Before it was all over, I also had to fire my PCP, albeit for a different reason. And I had to formally request a switch to a different headache doctor when the PA I trusted was switched from Doc A to Doc B at the same neurological practice And I also needed care from both a psychiatrist and a psychologist---they're not the same and they play very different roles in helping people with mental health issues.
Was it easy doing all of this? No. However, one of the roles the psychiatrist played was in giving me the knowledge and courage to start firing doctors who were not willing to work with me at the place where I was. He also is the one who suggested seeing a CBT psychologist and gave me a decent recommendation so that I would have someone who could work with me on learning how to control my emotional reactions to all the negative crap that was being thrown my way at the time.
And why not seek other options while you're still on CPAP therapy?
Because it's making things hellish. It's worsening my depression, it's affecting my wife, it's making sleep time and wake time miserable. I realize a lot of this is psychological but it doesn't change the fact that it is how I'm feeling.
As ozij points out:
psychological problems are just as real and just as important as physical ones are. But we're not sleep docs and we're not psychiatrists. All we can do is tell you what worked for us and give you a shoulder to cry on when you need one.
Because you know much of your current hellish situation is
psychological, it is critical that you find a psychiatrist or psychologist (or both) that you trust and that you feel like you can work with. Regardless of what you decide to do about CPAP therapy, I think you ought to find a psychologist who specializes in CBT to help you with unlearning behavior patterns that contribute to the anxiety which then feeds the depression and the insomnia. But you also do need to accept that your depression is severe enough that medication is most likely needed and that any prescribed medication is going to come with trade-offs in terms of the side effects, including how it might affect your sleep patterns.
I have actually finally started keeping a sleep log.
Good. Now you just have to find the strength to keep filling in the sleep log while not expecting the fact that you are keeping a sleep log is going to fix your problems all by itself. But the data you put in that log every day for at least 2-3 weeks will help an interested doctor or psychologist make decent suggestions on where to go from here.
The data in your sleep log may also help your doctors (all of them) understand the severity of your situation. And that in turn may make them more responsive to you. But I will add this: Don't just dump the log on the people treating you at the start of the visit. Contact them through the patient portal and tell them you want them to look through your sleep log
before your next appointment and politely ask them for the best way of getting the sleep log to them in time for them to have a chance to really study what you've written in it.
Joined as robysue on 9/18/10. Forgot my password & the email I used was on a machine that has long since died & gone to computer heaven.
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