My melodrama

[BeadyEl]

This is sort of a confession. By the end you'll probably roll your eyes and say “oh come on! Really?”

All I can say is: things seem worse when I'm tired, and today I am very, very tired. With that in mind, here's how things look to me, today.

This is something that I thought I'd put behind me, and which I didn't discuss with my sleep doctor (actually he's a CPN, not a doctor, but you know what I mean.) It didn't even occur to me that it'd be important, but now I see that it is.

In a nutshell: I can't go sleepless for weeks to adjust to my CPAP. I'll lose my mind. Here's why.

A little over ten years ago I had my first sleep study. The results were: no significant sleep apnea.

However, the reason I had the study done was because I was suffering from insomnia, and it was ruining my life.

What's more, it was a particularly cruel flavor of insomnia. It wasn't your typical “damn, I just can't get to sleep” insomnia – that I could have handled. No, this insomnia would wait until I was just dozing off, peaceful and happy – and then suddenly I would snap awake, my pulse racing. For no apparent reason. Over and over and over and over.

All night.

Night after night.

It was like living with a sadistic little devil that would wait until I was halfway asleep and then jump up and poke me in the face with a sharp stick. It wasn't just sleeplessness, it was real torment.

In time, it grew to overshadow every moment of each day and night. Every hour I was either in bed struggling with it, or else I was up woozily struggling through my days – desperately tired but knowing I might not get any rest that night, either. I watched the hours of each day advance with a sickening dread: bed time was coming.

I was desperate for bed time.

And I was terrified of bed time.

My emotional and psychological state deteriorated immensely. I needed sleep but had no way of knowing when – or if – I would get any. Still I had other obligations to fulfill; working full time, driving myself to and from work, trying to seem like a functional human being. Wondering if things would ever change.

I never got a diagnosis. I tried many medications, and I became dependent on Paxil – which seemed to help some, but it didn't entirely fix it. Today I have my own ideas about what was really causing it – and I've found a highly effective treatment - but the medical establishment was no help.

Anyway - over time it gradually just went away. I had escaped from hell. I was able to sleep again – and if I'm really honest, my current (confirmed) apnea-fueled weariness became sort of comforting; it was my VIP pass to dreamland each night.

Now, ten years later, I've had to admit that my apnea is dragging me down, badly. Last year I sought treatment. I had three sleep studies, confirming my apnea and that a CPAP could potentially help. I slept well in the labs. All looked good. This machine was what I needed by my bedside, I thought.

Then I got my home machine – and discovered that, far from enriching my sleep, it's stealing it away. In fact, it prods me awake nearly every time my breathing rhythm changes (you know, like you do when you're first dozing off?) Other times it blows my mouth open – again, usually just moments after I doze off.

That's what last night was like. Today I spent virtually every minute (and I mean after getting out of bed) fighting panic. In all seriousness, I couldn't concentrate for anything today. I could think of almost nothing except what will happen when I get in bed tonight.

The little devil with his stick is back, and this time his name is ResMed. And if I don't dutifully strap him on again tonight and every night for the foreseeable future - everyone, family, friends, doctors and people on the web – will cluck their tongues at me and say I didn't give it a fair chance.

When most people have a sleepless night, they're cranky the next day. Me? I want to f------ die.

So – any cause for hope?

Yes. Today I learned how to access the secret menu that lets me turn down the pressure. It's the only thing I've heard or read that has calmed me in the least. Maybe I can still salvage the situation. Just find a place where the air doesn't quite blow my doors off. I'll do what I can to adjust - with a goal of returning to a setting of 17 - but damn it, during the adjustment period the infernal machine can bloody well meet me halfway for a while. Plus, it's Friday – tomorrow I can sleep in as much as I want.

Also, I've requested a chin strap, which is on its way. Once I have that in hand, I'll try the higher settings again.

And if those don't work, a conversation like this may be ahead:

“So Doc, I guess there's something we should have discussed earlier: any treatment plan that hinges me 'toughing out' a wholly unpredictable number of sleepless nights – is just plain out of the question. For most people it'd be an inconvenience, for me it's a first-class ticket to gibbering madness. I literally can't take it.

So, what else you got?”

[kaiasgram]

I'll do what I can to adjust - with a goal of returning to a setting of 17 - but damn it, during the adjustment period the infernal machine can bloody well meet me halfway for a while.

I'm not rolling my eyes, not at all. Believe it or not many of us understand all too well the long-term torture of broken sleep.

I think your plan is a good one -- we often talk here about a stepwise adjustment to those higher pressures. If you need a "sub-therapeutic" pressure while you're getting adjusted, then so be it. It's still better than no therapy and if it ultimately helps you to work up to your prescribed pressure and stay there, then it's a very successful approach.

I would encourage you to use software to watch what's happening each night as you get started -- or restarted with a lower pressure -- and use this forum to get support and feedback as you go along. It's not unusual that the pressure you're prescribed right after a sleep study is not what you'll ultimately end up needing once you're sleeping at home in your own bed. Some people need to fine-tune to a higher pressure and others find they can get by quite well with slightly lower pressure than was originally prescribed. I was able to slowly bring my max pressure down when I started, without compromising my AHI, with feedback and help from the good folks here. It made a positive difference.

Hang in there.

[kteague]

Hello fellow Buckeye. Few things to mention.. If 17 is your prescribed pressure, using an exhalation relief setting to make it easier to exhale may help. And if that doesn't help over time, maybe a bi-pap would make tolerating the pressure easier. It is not without hope, as you haven't yet exhausted all your options that may make this experience better for you. Hopefully the slightly lower pressure you are now using will be enough to help you adjust. I have never had to use that pressure so I can't say I understand, just that sometimes the pressure woes improve with time. don't give up yet. Hope we can be of some help if you run into glitches.

[robysue]

A little over ten years ago I had my first sleep study. The results were: no significant sleep apnea.

However, the reason I had the study done was because I was suffering from insomnia, and it was ruining my life.

What's more, it was a particularly cruel flavor of insomnia. It wasn't your typical “damn, I just can't get to sleep” insomnia – that I could have handled. No, this insomnia would wait until I was just dozing off, peaceful and happy – and then suddenly I would snap awake, my pulse racing. For no apparent reason. Over and over and over and over.

All night.

Night after night.

It was like living with a sadistic little devil that would wait until I was halfway asleep and then jump up and poke me in the face with a sharp stick. It wasn't just sleeplessness, it was real torment.

I wonder if 10 years ago your sleep disordered breathing was what is now called UARS---and the sleep test didn't pick it up because no one was really looking for UARS ten years ago.

In UARS, the person arouses or wakes up before the airway has collapsed enough for it to be scored as an apnea or a hypopnea. And for some people with UARS, those wakes can be associated with pulse racing.

In time some people's UARS seems to deteriorate into full fledged OSA and oddly enough part of this deterioration is the body's losing its ability to arouse before the events become full-fledged apneas and hypopneas, and in some people once that happens, they don't tend to remember the arousals or wakes any where near as much.

I never got a diagnosis. I tried many medications, and I became dependent on Paxil – which seemed to help some, but it didn't entirely fix it. Today I have my own ideas about what was really causing it – and I've found a highly effective treatment - but the medical establishment was no help.

It would help us help you deal with the CPAP adjustment woes if we knew what your ideas about this previous nasty insomnia devil are and what you found to be a highly effective treatment for it.

Then I got my home machine – and discovered that, far from enriching my sleep, it's stealing it away. In fact, it prods me awake nearly every time my breathing rhythm changes (you know, like you do when you're first dozing off?) Other times it blows my mouth open – again, usually just moments after I doze off.

That's what last night was like. Today I spent virtually every minute (and I mean after getting out of bed) fighting panic. In all seriousness, I couldn't concentrate for anything today. I could think of almost nothing except what will happen when I get in bed tonight.

The little devil with his stick is back, and this time his name is ResMed.

This could have been written by me back in Fall 2010. My first three months of PAPing were hellish and my daytime functioning took a nose dive. The next three were purgatory. And it wasn't until I'd been using the machine for 9-12 months before I felt like I was actually functioning as well in the day time as pre-CPAP

So I get what you're saying.

Unfortunately, you won't like the only suggestion that I have: You have to muddle through as best you can. It may take several months before you'll notice anything at all remotely positive about using the machine. And if you're not keeping notes you may not even notice the first signs that something good is happening. In my case, the first thing positive about PAP was when the phrase, "Woke up with no hand or foot pain" started to appear several times a week in my insomnia log.

Which brings me to this:

You have some serious pre-existing problems still hanging around from the insomnia devil from 10 years ago and you're starting to feel as though the insomnia devil has moved back into your bedroom. You wrote this about the insomnia from 10 years ago:

In time, it grew to overshadow every moment of each day and night. Every hour I was either in bed struggling with it, or else I was up woozily struggling through my days – desperately tired but knowing I might not get any rest that night, either. I watched the hours of each day advance with a sickening dread: bed time was coming.

I was desperate for bed time.

And I was terrified of bed time.

My emotional and psychological state deteriorated immensely. I needed sleep but had no way of knowing when – or if – I would get any. Still I had other obligations to fulfill; working full time, driving myself to and from work, trying to seem like a functional human being. Wondering if things would ever change.
...
When most people have a sleepless night, they're cranky the next day. Me? I want to f------ die.

In light of this history, you're at high risk of having insomnia problems during the CPAP adjustment period, but you already know that. The question is: How much of this history does your current sleep doctor know? Because the sleep doc needs to know about this history since it is highly relevant to helping you get through the hump of adjusting to CPAP.

You also write this:

So – any cause for hope?

Yes. Today I learned how to access the secret menu that lets me turn down the pressure. It's the only thing I've heard or read that has calmed me in the least. Maybe I can still salvage the situation. Just find a place where the air doesn't quite blow my doors off. I'll do what I can to adjust - with a goal of returning to a setting of 17 - but damn it, during the adjustment period the infernal machine can bloody well meet me halfway for a while. Plus, it's Friday – tomorrow I can sleep in as much as I want.

Also, I've requested a chin strap, which is on its way. Once I have that in hand, I'll try the higher settings again.

Keep your doc in the loop if possible.

That said: There are ways of making the "infernal machine" meet you half way for a while. One is accepting sleeping with a less than effective pressure as a temporary measure. The idea, however, works only if you have a plan for increasing the pressure back up.

So: Once you find a pressure that doesn't "quite blow your doors off", you'll need to decide how long to use that pressure before increasing it. Don't increase the pressure all the way back up to 17cm in one fell swoop. Rather come up with a plan of increasing the pressure by 0.5 or 1 cm every 3-7 days until you manage to get back up to 17cm. And if an increase creates problems, then lower it back down for another 2-3 days before trying yet again.

And finally you write:

And if those don't work, a conversation like this may be ahead:

“So Doc, I guess there's something we should have discussed earlier: any treatment plan that hinges me 'toughing out' a wholly unpredictable number of sleepless nights – is just plain out of the question. For most people it'd be an inconvenience, for me it's a first-class ticket to gibbering madness. I literally can't take it.

So, what else you got?”

In my humble opinion, you need to have that conversation with the doc SOONER rather than LATER. As in I'd suggest calling the doc's office on Monday morning and requesting that he or his nurse or PA call you back because you are having some serious problems with adjusting to CPAP and that the problems are so serious that you are not sure you can do this.

Among other things: If the doc can be made to understand just how hard you are finding 17cm to deal with, he may be open to the idea of switching you to a bi-level machine. They are more expensive, but for folks with high pressures (like yours) they can be much more comfortable because they can be titrated where the EPAP is significantly lower than the IPAP, and this can make it feel much more natural to breath with the machine.

Your sleep doc may also be very willing to prescribe a prescription sleeping pill such as Ambien. Depending on whether you are open to the idea of a prescription sleeping pill, that may prove to be a critical tool in getting you over the hump. If you're not wild about taking a prescription sleeping pill, then the doc may be willing to either work with you on some cognitive behavior therapy for helping you get over the hump of learning how to sleep with the machine or refer you to someone who can work with you. CBT for Insomnia and CPAP adjustment is not easy and it's not for everybody, but for some people it can be a very powerful tool in learning how to make this crazy therapy work.

Best of luck in keeping the insomnia devil out of your bedroom and figuring out a way of turning the "infernal machine" into an ally instead of an enemy in your quest for a decent night's sleep.

[Gary_UT]

Hello fellow Buckeye. Few things to mention.. If 17 is your prescribed pressure, using an exhalation relief setting to make it easier to exhale may help. And if that doesn't help over time, maybe a bi-pap would make tolerating the pressure easier. It is not without hope, as you haven't yet exhausted all your options that may make this experience better for you. Hopefully the slightly lower pressure you are now using will be enough to help you adjust. I have never had to use that pressure so I can't say I understand, just that sometimes the pressure woes improve with time. don't give up yet. Hope we can be of some help if you run into glitches.

My prescribed pressure is 16, after the first few nights I was desperate to find a way to make this work. A Google search led me to this community and I spent most of one Saturday reading. I looked at my machine settings and discovered that it was not set to the best method of exhalation relief. Another search led me to the setup menu so that I could change the method of exhalation relief.

I learned that exhalation relief can go a LONG ways to increasing comfort. I also turned off the ramp function, I found that when the pressure went up the mask started leaking and woke me up.

Please update your profile to show the machine you are using, someone will be able to guide you through getting it set to improve your comfort.

Hang in there, it will get easier.

Gary

[TangledHose]

I read your post and all I could think was that was me!!!

When I started my CPAP adventure years ago my sleep study indicated the need for 12 cm pressure from my straight CPAP machine. Now I know some here would say 12 is nothing, but when I tried and tried to use my machine for the first two weeks I just felt like I was being blown out of my own bedroom by this hurricane strapped to my face. I complained to my wife that I was getting far less sleep with the machine than without it, and this whole thing was ridiculous and just a scam for the medical establishment to make money from my insurance company and me! I basically would give up half way through the night and rip the damn thing off in total frustration. And after ripping the Mask off I always felt better because I didn't have to deal with all the noise and hassle of the machine and mask. I finally quit, and put the machine in the closet.

But my wife liked to travel and I got tired of her waking me up in hotel rooms telling me that my snoring was keeping her from sleeping I got to the point that I would force myself to stay awake at night so she could get some sleep, and of Course that was miserable and totally impossible to keep up night after night, as you can imagine. So I decided on my own that I would travel with the CPAP machine, and I would turn down the pressure to a point that was livable for me and hopefully keep my snoring at bay for her to sleep. After experimenting with the machine I found that lowering the pressure to 8cm was much easier for me to actually use the machine and keep my nasal mask on through the whole night - I figured: hey some positive pressure was better than no pressure, and if I got used to 8cm maybe I could slowly inch the pressure up inch by inch and gradually get it up over time to my prescription pressure. So off we went on another trip and Bingo - no more wife waking me up to tell me to quit snoring, and no more pillows chucked at my head in the middle of the night, and believe me when I say my wife can really chuck a pillow! I left the machine at 8cm with great success in terms of the snoring, and I knew nothing about AHI - I was just happy I could sleep and my wife could sleep because I wasn't snoring. My next step was to get a full face mask because sometimes my mouth would fall open and the rushing air flowing out of my mouth would wake me up - the FFM solved that problem (I didn't know about chin straps at the time).

Then after time I was able to gradually get my pressure up to 12cm and now 12 seems like nothing to me - when I look back now I am very glad that I took it upon myself to tackle the beast and start by lowering my pressure to get it done. I am not here to advocate that people do this, but it worked for me, and I still feel that some positive airway pressure is better than none at all, especially if it keeps someone from giving up all together - the CPAP does little good in the closet collecting dust!

Now years later I can easily tolerate my prescription pressure, and now armed with an Auto machine it will sometimes get me up past my prescribed 12cm and I tolerate it just fine. At this point the 12cm that used to seem like an intolerable hurricane now seems like a comforting breeze - like others reporting here, sometimes I have to put my hand in front of my exhaust ports to even tell if the machine is really on. Now the mask gives me a sense of comfort when I strap it on and my mind immediately calms down knowing I am going to get some real restorative sleep. My AHI averages about 1.5 for the last several years and I feel well rested and full of energy.

So I hope you can find a way to stick with it and overcome all the issues that you face because in the long run it's really well worth the effort.

[BeadyEl]

I've updated my profile now - my equipment is there. I'll have to read up on the software everyone is using for tracking.

As for my thoughts about the difficulty I had 10 years back (and on very rare occasions since) - I don't discount a respiratory component, but I believe the insomnia was caused primarily by IBS, irritable bowel syndrome.

I absolutely have IBS - it runs in my family - and I have all the common symptoms. When I was having my old variety of insomnia, I eventually began to notice that the worst nights were almost always accompanied by a few specific IBS symptoms also. It was a long time before I considered that the IBS might be the cause of the insomnia; at first I assumed it was the other way around. IBS is usually exacerbated by emotional stress - but I began to wonder if it might be the cause of this particular stress.

The treatment I've found: Bentyl (aka Dicycloverine or dicyclomine hydrochloride) It's a smooth-muscle relaxant and it is quite effective at shutting down many IBS symptoms. On the rare (pre-CPAP) occasions when I've felt really wound up and had trouble sleeping (like a very mild version of the old problems I had) one Bentyl tablet usually does the job.

With that, I head off to bed. Got my fingers crossed.

[BeadyEl]

Well - I dialed down from 17 to 9 last night. Slept like a log!

This would seem to demonstrate that the sound was not a problem, nor the comfort of the mask, nor the presence of the hose.

I just wasn't able to deal with that much pressure.

So, tonight I'll try a 10 and see how that goes.

[robysue]

Well - I dialed down from 17 to 9 last night. Slept like a log!

That's good news!

Out of curiosity, how were the leaks and the AHI at the lower pressure?

If the AHI was way, way to high, then a working strategy would be to leave the pressure at 9cm for several days and then bump it up to 9.5 or 10 and see if you can handle that. And repeat the cycle until the pressure is high enough to bring the AHI down to where it should be and you're still able to tolerate the pressure.

So, tonight I'll try a 10 and see how that goes.

I'd say go slower than that. Leave the pressure at 9cm for at least 3 or 4 days so that you know last night was not a freak "good night". Get good and used to 9cm before bumping the pressure up to 10.

[BlackSpinner]

Like Robsue said Leave it at 9 for a week and track your data. If the AHI is over 5 dial it up .5 to 9.5 for a week. repeat.

[BeadyEl]

I was just going to say that this site could use a glossary of terms (AHI?) - but it looks like there's a good one here:

wiki/index.php/Category:CPAP_Definitions

I'll have to go and look up the AHI and get back to you.

[chunkyfrog]

Sleep labs are not always perfect; nor are their titration studies.
I was titrated at 14 cm, but I rarely go over 12 with my Autoset.
They must be right some of the time--but they missed the mark in my case.

[BeadyEl]

WOW. I just installed SleepyHead and imported my data. I have 3 nights worth on there.

Night 1:
Hours: 8:12
Pressure 17
AHI Peak: 40 (!!)
AHI Average: 12.07
Note: I took a muscle relaxant to help me sleep (actually prescribed for occasional back spasms)

Night 2:
Hours: 4:18
Pressure 17
AHI Peak: 8
AHI Average: 3.49
Note: No sleep meds. Slept very little, less than an hour.

Night 3:
Hours: 6:41
Pressure 9
AHI Peak: 3
AHI Average: 0.75
Note: No sleep meds. Slept like a log!!

Good god.

[ems]

WOW. I just installed SleepyHead and imported my data. I have 3 nights worth on there.

Night 1:
Hours: 8:12
Pressure 17
AHI Peak: 40 (!!)
AHI Average: 12.07
Note: I took a muscle relaxant to help me sleep (actually prescribed for occasional back spasms)

Night 2:
Hours: 4:18
Pressure 17
AHI Peak: 8
AHI Average: 3.49
Note: No sleep meds. Slept very little, less than an hour.

Night 3:
Hours: 6:41
Pressure 9
AHI Peak: 3
AHI Average: 0.75
Note: No sleep meds. Slept like a log!!

Good god.

Good god is right! Isn't it amazing when you take control of your own health! I'm so happy for you. You are well on your way to good health and good sleep.

[kaiasgram]

WOW indeed! That is sweet! I really encourage you to follow the advice to just stay at 9 for at least a week. It may turn out that there's no compelling reason to push the pressure setting much higher but a week or longer will let you start seeing patterns you can rely on.

Your Autoset breaks down the AHI into event types -- I'm really curious how much of your high AHI on nights 1 and 2 were due to central or 'clear airway' apneas. If that number is high, it may mean that 17 was actually too much pressure for you.

Sounds very hopeful.