Last Night Was First Night

[ozij]

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 why not seek other options while you're still on CPAP therapy?

You've been here for three months. And every few days you change your mind about continuing with the therapy
Two and a half months ago Robysue1, who is taking you very very seriously, suggested you keep a sleep log.
When she repeated that, two months later, your response was

2) Keep a simple sleep log. This can be done on paper or in an Excel spreadsheet. Each row of the log/spreadsheet is divided into two basic parts: Part 1 is to be completed just before you go to bed each night; part 2 is to be completed when you wake up and get out of bed the next morning.

I need to be better about this one.

A sleep log is an option to help you understand CPAP therapy and its effect on your sleep and wake experience.
Do you realize how much a serious sleep log will help your professionals give you a good recommendation?

[Iancdub88]

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.

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.

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.

You've been here for three months. And every few days you change your mind about continuing with the therapy
Two and a half months ago Robysue1, who is taking you very very seriously, suggested you keep a sleep log.
When she repeated that, two months later, your response was

2) Keep a simple sleep log. This can be done on paper or in an Excel spreadsheet. Each row of the log/spreadsheet is divided into two basic parts: Part 1 is to be completed just before you go to bed each night; part 2 is to be completed when you wake up and get out of bed the next morning.

I need to be better about this one.

A sleep log is an option to help you understand CPAP therapy and its effect on your sleep and wake experience.
Do you realize how much a serious sleep log will help your professionals give you a good recommendation?

I have actually finally started keeping a sleep log.

[ozij]

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.

"Psychological" is just as real as other things.
Ask yourself:
What kind of dangers are you thinking of, that may appear if you stop CPAP, to get yourself out of this hellish situation?
What dangers are you ready to accept as the price of stopping? Which dangers, on the other hand, would make you say "Oh. If that's the case, then I better stay on CPAP no matter what".
It's your call, not anyone else's.

[Iancdub88]

"Psychological" is just as real as other things.
Ask yourself:
What kind of dangers are you thinking of, that may appear if you stop CPAP, to get yourself out of this hellish situation?
What dangers are you ready to accept as the price of stopping? Which dangers, on the other hand, would make you say "Oh. If that's the case, then I better stay on CPAP no matter what".
It's your call, not anyone else's.

With an AHI of 59.6, there are obviously numerous health issues that could arise. But wouldn't those likely occur later in life? If there are serious health issues that can arise now, I would say that I need to stay on CPAP. When I'm thinking clearly, I do realize that I SHOULD probably stay on it but it seems so difficult.

[ozij]

With an AHI of 59.6, there are obviously numerous health issues that could arise

That's much too general.
Name 4 specific health issues that could arise now, yet you're ready to pay the price of having them, in order to break out of you hellish situation.

[robysue1]

Iancdub88,

First please re-read what ozij wrote to you. She said a lot of good things in her last three posts, particularly this:

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.

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.

[robysue1]

"Psychological" is just as real as other things.
Ask yourself:
What kind of dangers are you thinking of, that may appear if you stop CPAP, to get yourself out of this hellish situation?
What dangers are you ready to accept as the price of stopping? Which dangers, on the other hand, would make you say "Oh. If that's the case, then I better stay on CPAP no matter what".
It's your call, not anyone else's.

With an AHI of 59.6, there are obviously numerous health issues that could arise. But wouldn't those likely occur later in life? If there are serious health issues that can arise now, I would say that I need to stay on CPAP. When I'm thinking clearly, I do realize that I SHOULD probably stay on it but it seems so difficult.

With every single chronic health problem there are "obviously numerous health issues that could arise". But no-one can predict when (if ever) a particular problem is going to arise for a particular patient.

With severe untreated OSA? Some of those numerous health issues include:

1) Insomnia and bad sleep caused by the body's need to constantly arouse itself to jumpstart the breathing. This often, but not always, leads to excessive daytime sleepiness, brain fog, and general fatigue. All of which can then lead to general snarliness to the people around you. As I've suggested before, you ought to find a copy of Sound Sleep, Sound Mind by Dr. Barry Krakow. While the first half of the book is about plain old insomnia, the second half of the book is all about how untreated OSA can cause insomnia and the kinds of physical stress that the body undergoes each night when a person with untreated OSA goes to sleep.

2) Chronic morning headaches caused by O2 desats during the night and/or the body's fight-or-flight response to every one of the mini-suffocations that are occurring all night long. Untreated OSA headaches are often described (in retrospect) as "extreme fatigue and pain behind the eyes". It's not like a tension headache. Or a migraine. Or a sinus headache. It sometimes is accompanied by a TMJ headache caused by grinding the teeth in response to all the cortisone being shot through the body by those fight-or-flight responses to each and every apnea. And while the OSA headaches will dissipate with time, they are still a source of daily pain. And no-one wants to live with daily pain if they don't have to.

3) Weight gain. Some people with untreated OSA wind up gaining weight during the years their OSA is left untreated, and anytime they try to lose the weight? They find it harder and harder to lose. In other words, untreated OSA can change the body's metabolism and make it easier to gain weight and harder to lose it. Along with weight gain comes a higher risk for a whole bunch of chronic health problems that are not easy to live with, including both diabetes and high blood pressure.

4) Cardiac problems. Yes, it's probably unlikely you will drop dead of a heart attack in the next year or two. But the damage untreated OSA does is comparable to a death by a thousand cuts: Each bit of damage adds up. And over the years, the damage can become substantial. Waiting until cardiac problems related to the untreated OSA finally develop makes those problems harder to treat.

5) Stroke and TIAs. Again, it's probably unlikely you will drop dead of a stroke in a year or two. But again, the damage to the arteries and veins in your brain is cumulative. And waiting until the risk of stroke becomes significant will make it harder to reduce.

[Iancdub88]

ozij and robysue1:

You are both right. There don't seem to be many other great alternatives. I am sorry to keep venting on here and to keep waffling between continuing or not. I do need to address these concerns with doctors that will listen. All of the help you have all given me is more than I could have ever asked for. I need to find the strength to continue and to find out what works best for me.

I will say that I have started to try certain CBT-I techniques and they have caused my anxiety to spike. For instance, when I try to set the same wake up time every day, i find that I lay in bed stressing that I have to get up at that time. Is that normal and something that I just need to push through? Or is there possibly an alternative to CBT-I out there that may be geared more toward folks with anxiety disorders? I'm mostly just thinking out loud here but any ideas are appreciated. You're all so helpful and I'm sorry if I come across as a burden in any way.

It is my 7th wedding anniversary so I am going to go and try to enjoy the evening and not stress too much about sleep. Thank you!

[robysue1]

I will say that I have started to try certain CBT-I techniques and they have caused my anxiety to spike.

Have you ever considered working with a CBT psychologist (not psychiatrist) on the anxiety problem? There are a lot of behavioral patterns that we do that cause anxiety to spike or grow worse as soon as we start feeling anxious. There are also behavior patterns that can be learned to help reduce the anxiety when we start to notice it and help prevent it from growing out of control. A good CBT psychologist can help you learn what behavior patterns you have that feed the anxiety and help you select behavior patterns to replace them with that will help manage the anxiety at a tolerable level.

Because when I go back and review everything you've written, I think learning how to manage the anxiety---both about your sleep and your more generalized anxiety---may be a critical part of learning how to sleep well as well as sleep with the CPAP mask on your nose.

For instance, when I try to set the same wake up time every day, i find that I lay in bed stressing that I have to get up at that time. Is that normal and something that I just need to push through?

Your anxiety problem is causing you to overthink the whole situation about that goal of having a set wake up time for all seven days of the week. That is, of course, the nasty thing about anxiety: It causes you to overthink about all kinds of problems and potential problems, including the anxiety itself.

Yes, working on establishing a set wake up time helps to consolidate your badly messed up sleep cycles. But it's a process. And you should expect some "two steps forward, one step backward" stuff as part of that process. You don't have to be perfect every single day of every single week for the rest of your life.

Think about it this way: What's the worst case scenario if you don't manage to get up at your chosen wake up time?

I'll tell you what it is from my own experience: You get up out of bed when you wake up, even though it is after your chosen wake up time. And once you are awake and out of bed, you don't try to analyze why you overslept and you don't beat yourself up about the fact that you overslept. You just get up and start your day and don't allow yourself to dwell on "failing" to get up at the right time. And if you feel rested when you get up, you tell yourself, "Gee I guess the body needed that bit of extra sleep and it got something positive out of that extra sleep."

If you give it some time and if you don't beat yourself up when you oversleep, the body will start to acclimate to waking up around your chosen wake-up time as long as that wake up time is something that fits both your circadian clock and your life style.

Or is there possibly an alternative to CBT-I out there that may be geared more toward folks with anxiety disorders? I'm mostly just thinking out loud here but any ideas are appreciated.

As I said before, I think some CBT for the anxiety would help you cope better when something that you are trying to do with the CBT-I starts to trigger the anxiety.

My understanding about serious anxiety problems is this: One major root of anxiety is fear, and in particular fear of failure. Another major root of anxiety is a sense of not being in control of things; in other words when there is something that you can't properly control in your life, that triggers the anxiety because it triggers worrying about the thing you can't control simply because you know you can't control it and the feeling that you can't control it is difficult to deal with. And another major characteristic of anxiety is that the more you worry about X, the more you are afraid you can't control X, and the more you become afraid of what might happen if you "fail" at X, whatever X might be. And that process all too often leads to the anxious mind running away with all kinds of anxious thoughts that are impossible to turn off in your head---by that point the anxiety is feeding on itself and it's easy to feel overwhelmed by it all.

And I think in your case X = "sleeping with the CPAP" (among other things). On the one hand, you are desperate to "fix the problem" so that you can sleep well with the machine. On the other hand, you are afraid of failure---i.e. you're afraid you will never be able to do this thing that has been imposed on you by the OSA diagnosis. And because you know you need to work on the insomnia monster that's moved in (since the data indicates the machine is controlling your OSA), you're now afraid that you will fail at CBT-I, and in particular, you're afraid that if you oversleep your desired wake up time, then you've somehow failed at CBT-I and as a result, your anxiety kicks in and you lay in bed worrying you won't be able to get up at the set wake-up time and that in turn makes it ever so much harder to get any sleep at night. In other words, the anxiety about 'bad sleep' and 'failing to get up at the set time' becomes a self-fulfilling prophecy, and you beat yourself up about it the next morning when you oversleep after an awful night's sleep triggered by the worrying about the wake up time and the quality of your sleep.

The only way out of this trap is to quit beating yourself up when you fail. Failure is part of CBT---any kind of CBT, including CBT-I. But for CBT to work, after you've failed at some agreed part of the CBT, you pick yourself up, brush yourself off, and get back up on that horse you're trying to ride. You don't try to analyze why you failed (i.e. why the horse succeeded in bucking you off), you just get back up and try again. And again and again. As many times as you have to. Once you give yourself the freedom to fail and you realize that some failure is expected in CBT, it becomes easier. And slowly things will start to improve.

It is my 7th wedding anniversary so I am going to go and try to enjoy the evening and not stress too much about sleep. Thank you!

Happy anniversary. Enjoy the evening. And when you go to bed, think pleasant thoughts about your wife and how much the marriage means to you and how much the marriage enriches both of your lives.

Pleasant dreams for when you do go to bed.

[Iancdub88]

I'm sorry I kind of disappeared. I realized I was obsessing over all of this way too much. I have been sleeping better on the settings my sleep tech recommended. Im still getting pretty tired and getting mild headaches at around 4pm. I know there are still several arousals. I did message my sleep doctor because I have these periods of what look like super shallow breathing but he hasn't responding. I do have the trigger set to very high. I'm wondering if that could cause it? Any insight would be appreciated!

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