Getting discouraged

[tisket]

Without CPAP, I never wake up at night (that I remember anyway), I am not the type who gets up to go to the bathroom or anything. I fall asleep very quickly and stay asleep until morning. I took the sleep test because I have low energy and my girlfriend says that I snore, gasp etc. which indicate sleep apnea.

With CPAP, I wake up constantly, sometimes with air blasting out of my mouth, sometimes with the nasal pillows being pulled out of position by the headgear straps interacting with my sleeping pillow thus causing air to blast out of my nose, sometimes being tangled up in the hose, sometimes I don't know why. Getting back to sleep takes a long time and involves fiddling with the hose position, activity which makes me more awake and makes it harder to resume sleep. Have tried a chin strap, very itchy and felt like it was squeezing every part of my face except my chin, which it did not hold closed very well.

Frankly I am amazed anyone can sleep at all with this equipment on. The experience has been awful. I have a suspicion that the minority of people who can tolerate CPAP (I have read a lot of PUBMED studies about compliance and how low it is, even at the 4 hour per night level) are people who sleep on their back/on a couch and don't move around much. My girlfriend sleeps on a couch due to GERD problems and hardly moves at all when asleep which is why I think she can tolerate her BIPAP better, but after four+ months she feels no better than before the therapy.

Things like medications, bedtime, etc. are a constant and can be eliminated from consideration. The only thing that changed was using CPAP and it made me feel terrible. I expected an adjustment period, but going from 30+ AHI (I was mistaken before when I said 29, I was thinking of the cutoff, I definitely was diagnosed with "severe obstructive sleep apnea") to 3 or less every night has not made me feel better at all, instead I feel lucky I haven't had a car accident yet due to sleep deprivation.

[Julie]

First, I suggest your girlfriend try just half a TUMS before bed (I only use 1/4 and not of the XL size) and see if it helps... been doing it for yrs after trying 'fancier' stuff that actually created a backlash effect, and it works very well.

And why haven't you tried other masks that would hopefully fit better - other sizes, etc? There are so many out there, why put up with one that isn't working? If you do try FF ones (and you may need them) try them while lying down, as your face changes a lot then.

There are loads of people who 'tolerate' Cpap, but you don't hear about them because they're happy with things, and there are many who don't realize they have options re different equipment, settings, etc. (like yourself?). Google Hose Buddy to see if you can improve that part of things, or rig something (loose) at the headboard or even ceiling to deal with the hose.

Compliance at 4 hrs is for insurance purposes, but does not give you enough therapy to appreciate or benefit from using the machine all night, so don't let yourself think all you need is 4 hrs or you're likely to never feel a lot better.

[Pugsy]

Some medications can make the wake ups more likely to happen for any number of reasons. They can make an already bad problem worse.
Which is why I asked. No, we can't always do anything about them but sometimes we can.
I take a pain pill that I have to take but is messes with my sleep...knowing that it can mess with my sleep helps a little and gives me an edge on what I can do to minimize the problem. When a person is already having sleep maintenance insomnia issues...some meds can make it worse and you definitely are having sleep maintenance insomnia issues.

Sleep maintenance insomnia...where we wake often during the night for whatever reason and/or have trouble getting back to sleep.
The bulk of your sleep maintenance insomnia is most likely related to the cpap stuff...either mask, hose, pressure etc.
Your sleep is fragile and the least little thing is messing it up.

How to fix it...takes detective work and probably a lot of trial an error. Gotta figure out the exact cause and then try various things to minimize or eliminate the cause.
Everything you have complained about is fixable...not necessarily easily fixed but fixable.

Fragmented sleep for any reason is going to really mess with our sleep architecture and we are going to feel like crap simply from poor quality sleep.

So..the question is...do you want to continue and try to fix the problems or give up?

The hose thing...try some sort of hose management system...you can buy them or make your own.
viewtopic.php?t=10640

Finally talk with your doctor about your sleep difficulties...sometimes short term medication intervention is needed so that the chances of the frequent wake ups are lessened.

If you feel you just have to give up....that's your choice but not one of your problems hasn't been faced by someone here and worked through.
Is it easy...hell no. If it were easy we wouldn't be reading about 50% of the people who start cpap abandon it.

Your sleep apnea isn't mild...it's severe and what it does to your body you may not realize right now but it will do long term damage.
Have you seen this video.
https://www.youtube.com/watch?v=-gie2dhqP2c

[Wulfman...]

Without CPAP, I never wake up at night (that I remember anyway), I am not the type who gets up to go to the bathroom or anything. I fall asleep very quickly and stay asleep until morning. I took the sleep test because I have low energy and my girlfriend says that I snore, gasp etc. which indicate sleep apnea.

With CPAP, I wake up constantly, sometimes with air blasting out of my mouth, sometimes with the nasal pillows being pulled out of position by the headgear straps interacting with my sleeping pillow thus causing air to blast out of my nose, sometimes being tangled up in the hose, sometimes I don't know why. Getting back to sleep takes a long time and involves fiddling with the hose position, activity which makes me more awake and makes it harder to resume sleep. Have tried a chin strap, very itchy and felt like it was squeezing every part of my face except my chin, which it did not hold closed very well.

Frankly I am amazed anyone can sleep at all with this equipment on. The experience has been awful. I have a suspicion that the minority of people who can tolerate CPAP (I have read a lot of PUBMED studies about compliance and how low it is, even at the 4 hour per night level) are people who sleep on their back/on a couch and don't move around much. My girlfriend sleeps on a couch due to GERD problems and hardly moves at all when asleep which is why I think she can tolerate her BIPAP better, but after four+ months she feels no better than before the therapy.

Things like medications, bedtime, etc. are a constant and can be eliminated from consideration. The only thing that changed was using CPAP and it made me feel terrible. I expected an adjustment period, but going from 30+ AHI (I was mistaken before when I said 29, I was thinking of the cutoff, I definitely was diagnosed with "severe obstructive sleep apnea") to 3 or less every night has not made me feel better at all, instead I feel lucky I haven't had a car accident yet due to sleep deprivation.

Considering your pressure fluctuations all night long with a range of pressures, I'm not at all surprised.
I would suggest trying a straight pressure of 7 cm. and see what things look like.
You said your doctor prescribed "CPAP", and you chose to try APAP with a range of pressures.
Try a fixed pressure and see if it helps. Some people have their sleep disturbed by pressure changes and all that goes with it.
Set the minimum and maximum pressures to the same pressure and you'll have a fixed pressure......."CPAP".


Den

.

[tisket]

The doctor has no idea what he is doing. I complained of daytime tiredness and said my girlfriend had observed snoring and gasping for breath and wanted a sleep study.

He ordered a home sleep study. No pressure titration was involved. He got the results and wrote a scrip for "CPAP device" and threw me to the tender cares of the DME company, who did not return my calls.

I obtained a copy of the sleep study myself from the doctor's office. It recommended an APAP machine with pressure set to between 4 and 20, heated humidification, mask of the patient's choice. So that is what I ordered after deciding to cut the DME company and insurance company (who also gave me no useful information about rental vs outright payment) out of the loop. The whole thing would have come out of my deductible anyway with me having no choice of equipment or access to the controls or data (if they even gave me a model with data capabilities, which is doubtful).

My girlfriend has a bipap from the same DME so I am aware of how useless they are in terms of patient care and information. She cannot change her own settings nor apparently access any sleep data. She has to do irritating compliance checks to boot. She made what she thought was a one time copay but turned out to be the first of many monthly rental payments (no one informed her of how these things are handled).

The doctor's prescription for "CPAP device" was based entirely on the sleep study, which as I said recommended an APAP device with variable pressure.

I appreciate your efforts to help, but I don't think pressure is the problem. My AHI has gone from 34 to under 3 on average, so the pressure seems adequate to prevent apneas. There is just this minor problem of it being impossible for me to get a decent night's sleep with this thing on, and a decent night's sleep was the whole point. I consider the therapy a failure, as I would any therapy where things actually were worse months into it than they were before starting the therapy. It's time to cut my losses and move on, and feel better.

The next time I see this doctor I will ask about oral appliance therapy. No doubt I will end up being told to go to a dentist. In the meantime, I am going to start a diet, with "avoiding CPAP" as a strong motivator.

[palerider]

He ordered a home sleep study. No pressure titration was involved. ... It recommended an APAP machine with pressure set to between 4 and 20, ... The doctor's prescription for "CPAP device" was based entirely on the sleep study, which as I said recommended an APAP device with variable pressure.

some people like to always push their agenda, and grasp at anything like 'your doctor said", totally ignoring the facts of the case, or the fact that titration studies... (for the people that have them) aren't the end all be all that some like to think they are.

the recommendation for a 4-20 setup is just the defaults, and without a titration study to at least get a ballpark idea of pressure needs, is acceptable for starting out, but then the machine needs to have the minimum raised to what's appropriate for that person.

In the meantime, I am going to start a diet, with "avoiding CPAP" as a strong motivator.

just keep in mind that for many people, weight gain is a side effect of sleep apnea.

My girlfriend has a bipap from the same DME so I am aware of how useless they are in terms of patient care and information. She cannot change her own settings nor apparently access any sleep data. She has to do irritating compliance checks to boot. She made what she thought was a one time copay but turned out to be the first of many monthly rental payments (no one informed her of how these things are handled)

she can change her own pressures, all she needs to do is request the clinical manual for the machine from apneaboard, and take charge of her therapy.

[EdNerd]

When I first started CPAP about 2 months ago, I was often irritated and felt I was sleeping worse. One night after about 20 minutes of trying to get to sleep, I ripped the mask off, threw it on the floor, and crashed out solid! Felt like good sleep to me. Then I started falling asleep at my desk.

It dawned on me that the biggest contributor to my getting to sleep is my attitude of acceptance of this CPAP. If I moved to a house next to the train tracks, I'd have to get used to sleeping with the noise. Same with CPAP - I have to get used to sleeping with the mask and machine noise. And wrestling with the hose, and dealing with finding the right mask (including how to adjust it and deal with air leaks), and so forth.

All of this is a journey. What makes the difference is whether it's a journey into self-torture or a journey to better health. And that's in your attitude. People have posted here just angrily complaining - they rarely make it. Others (like a neighbor I talked to recently) stare at their mask and machine like it's an enemy they must be friends with.

With OSA and disturbed sleep, there are so many health issues, and many you will not see but they're waiting for you. As my sleep doctor said, "This is one reason why people have heart attacks during the night!" As I've progressed into this, not only trying to make friends with CPAP but embrace it as one of the answers for better health, I've found I can drop off to sleep much easier and sleep much better. Give it some time and an honest embrace. I'll bet your 40 pounds would require some long term lifestyle changes too. Maybe it will help with your CPAP therapy. But maybe not. Then what??

We get it about the poor doctor and DME service - there's a hundred of those stories on the forums. But now that you have the tools, it's up to you to learn about them and how to use them to help you. And to give it the time. Your 40 pounds didn't get there overnight, and won't go away overnight either. How your body has learned to adapt to poor breathing will take some - and effort, especially mental - to overcome.

We are all here to help each other along the same journey.
Ed

[robo2084]

Just to follow up, I haven't read all the posts here, I but I would say that there are three major things to consider:

1) There are many variations in settings which could dramatically shift your experience; so it's worth playing with them

2) There are hardware differences that could be tweaked that make a dramatic difference (e.g. I had bad luck until I switched to the Resmed P10 nasal pillows, which have a complete seal and don't come off when I move around, plus they are pretty comfortable)

3) It can take a while to get used to sleeping with something new - sort of like the first night in a noisy apartment. Eventually you adapt.

You also do have the option of exploring other sleep apnea solutions (like a mouthpiece) but in my experience, it was worth persevering for a while - maybe a period of months. You'll likely ultimately be glad that you did. And you may find that sleeping WITHOUT CPAP is ultimately what you really can't stand!

[Guest]

The next time I see this doctor I will ask about oral appliance therapy.

If you can't sleep with something on your face just imagine how it will feel trying to sleep with something in your mouth (painfully) cranking your mouth open. Get a sports mouth guard (or two - 1 for upper & 1 for lower) to sleep with - a cheap enuff experiment.
Then keep in mind most insurance will not cover the ~$2500 cost (for obvious reasons) but do check with yours first. You will end up with a car payment book for something you won't use and still need a cpap or still have a problem. When sleep deprived none of us are good at making choices.

No doubt I will end up being told to go to a dentist. In the meantime, I am going to start a diet, with "avoiding CPAP" as a strong motivator.

Keep in mind it is much easier to exercise and loose weight when you are sleeping and well rested. That should be a motivating factor in adapting to cpap. If I can do it - so can you.

And if your problem is your jaw structure weight loss won't help or if central apneas are your problem a dental appliance simply will not work.

[tisket]

It's interesting. I was just reading a study on the National Institutes of Health site (I read a lot of peer reviewed studies about CPAP, among other things - I am not casual about health information).

None of them ever mention the concept of taking six, eight, or ten months to "adapt" to CPAP. That is a concept I only hear on forums and from anecdotes. As far as the doctors are concerned, if you aren't improving in a matter of weeks, the therapy isn't working. Which makes sense, since it is the same reasoning applied to every medical therapy - double blind clinical trials are almost always twelve weeks (or much less), for anything.

Some interesting quotes:

"In particular, we aimed to establish the proportion of patients who, while appearing to have optimal continuous positive airway pressure (CPAP) adherence, did not normalize their daytime sleepiness or neurocognitive function after 3 months of CPAP therapy despite effective control of OSA."

At the end of three months, "Forty percent of patients in this trial had an abnormal Epworth Sleepiness Scale score at the conclusion of the trial."

"Our study suggests that a greater percentage of patients achieve normal functioning with longer nightly CPAP duration of use, but a substantial proportion of patients will not normalize neurobehavioral responses despite seemingly adequate CPAP use. It is thus crucial to adequately assess patients after CPAP therapy and seek alternate etiologies and treatments for any residual abnormalities."

https://www.ncbi.nlm.nih.gov/pmc/articl ... ort=reader

I just don't buy the "you'll eventually feel great" concept. I think, like most therapies, this therapy will not work for everybody, in fact it has been shown not to work for a huge percentage of people, and even people who "stick with it" often cease therapy after one or two years. The guy who invented CPAP based his work on the fact that his subjects felt better the very next day. It was never intended to be a grueling year long process, nor was it sold that way to the FDA.

I was 100% compliant for 68 straight days and feel far worse than before I had my sleep study. I think at some point you have to stop banging your head against the wall and look for the door.

I also think the apnea epidemic, like the diabetes epidemic, is a direct result of the obesity epidemic, but the money is in selling people drugs and equipment, not in telling them to lose weight. I needed more motivation to drop the excess weight; now I have it.

[palerider]

I was 100% compliant for 68 straight days and feel far worse than before I had my sleep study. I think at some point you have to stop banging your head against the wall and look for the door.

you can be 100% "compliant" and yet 100% ineffective.

it's like wearing a pair of eyeglasses with the wrong prescription in them, you can wear them every second of the time you're awake and still not be able to see worth shit.

so, being 100% "compliant" means little.

I also think the apnea epidemic, like the diabetes epidemic, is a direct result of the obesity epidemic, but the money is in selling people drugs and equipment, not in telling them to lose weight. I needed more motivation to drop the excess weight; now I have it.

whatever works for you, though you're woefully undereducated on that subject. (in both respects)

[AirPump]

Hi Tisket -
So sorry to hear you're having trouble. I started CPAP therapy in January 2013, and I started with the Swift FX nasal pillows too. And for the first week I was having problems. I was irritated by the nasal pillows and the hissing air blowing into my eyes with that setup, so I tried other masks and found that the ResMed Mirage FX small nasal mask made a huge difference for me. (and being quieter, also for my wife). The therapy improved greatly, I felt energized and much more rested.

A year after starting CPAP, I joined Weight Watchers and lost 35 lbs over the following seven months. WW program works well because you don't have to stick to a certain limited diet. You just work to develop better eating habits for frequency, snacking and meal portion control. I think your idea to lose weight will also help you a lot.

As you are new to CPAP, you probably have a followup with your physician. Talk to him about your experience.
But also, try some different masks. It can make a big difference in your comfort level.

Best of luck to you.

[Guest]

being 100% "compliant" means little.

+1

I have to agree 100% and unless tisket is willing to post some Sleepyhead graphs there is little anyone can do to help.

[Soothest Sleep]

Hi, Tisket,

Good for you for researching hard data from the NIH collections about CPAP use. Reliable information can be a good support. As a retired librarian, I would caution you, however, about overinterpreting what you read, particularly in regard to experimental timelines. It costs a lot of money to mount experiments, so a 12-week window, though short, is not uncommon. The reports you read have given you data to support your imminent decision to quit CPAP, but have not taken into account any results beyond the 12-week timeframe. What is needed are funded longitudinal studies that follow patients over a number of years. Much more meaningful data would then be available about compliance rates and experiences.

Also, please see this interview from 2009 with Colin Sullivan, the inventor of CPAP, at https://sleepfoundation.org/ask-the-exp ... uture-cpap. He makes some telling points about the forward development of CPAP after his initial experiments. Yes, he did say: "At the time of the first experiment, nasal CPAP as a treatment looked like a useful rescue therapy to give us time to find a surgical cure." But he also says: ". . .in the early days, patients would use the treatment as it had such a dramatic effect on their daytime function – their personal feedback was the key to CPAP’s continuing acceptance. We now know sleep apnea can cause all of the common vascular diseases, so we are asking people with less severe symptoms to use CPAP to prevent having a heart attack or stroke. However, the comfort of the systems has improved. I often ask my patients to think of CPAP like reading glasses. They are a nuisance but you can’t do without them. Unlike other therapies, they don’t have to worry about drug side effects."

And relevant to your situation, I believe, is this quote from Dr. Sullivan: ". . .there is robust evidence that the best compliance only occurs if the introduction of the patient to CPAP is done with well trained experts, and if the patient is closely followed and supported by those people. Within the noise around the various debates on ambulatory at-home versus full in laboratory PSG, this point is often missed. What matters is that experienced people manage the patient at the beginning, and then compliance can be excellent. "

Clearly that follow-up and support is not happening for you. Nor for many other members of this forum. As a community, we are trying to fill that gap by helping each other understand and make changes to optimize our therapy; minimize the fussy nuisances of pillow comfort (nasal OR head, take your pick), trapped hair in headgear, itches, humidity, et al.; and encourage ongoing use of the machines and equipment. I encourage, even challenge, you to become a detective in your own health care to find out just what you can do to keep going with CPAP therapy.

You don't say how long you may have been living with apnea symptoms. Your body has been coping with it for however long that is; surely you can give your body more time to get used to the new regime. Your body processes need to become used to behaving normally again instead of always being in "code red" mode as the apneas cause suffering. For some people, it may well be an overnight success; for others (and I'm one, too), it can take some months to feel better even with lower AHI scores.

Calm yourself down. Change doctors/DME/resp.tech./whatever to get some better answers from your medical team. Be willing to read/hear others opinions and ideas to help you. Take one issue at a time to work on. Practise patience as you work it through. Trust that you can do this.

Ultimately, do you want to be right, or do you want to be happy (i.e.,sleeping in better health)?

Keep on keeping on,
Jean

[Soothest Sleep]

. . .unless tisket is willing to post some Sleepyhead graphs there is little anyone can do to help.

Tisket posted a graph yesterday (see page 1 of this topic). I don't remember seeing a review of it, though. (I'll go back to look).

Edited: Still didn't see a clear review, but here are a couple points I will make (and Pugsy, or another of the Collected Guru gang, can correct me if I go off track):

- I didn't see your Resp. Rate graph. Can you please re-post? Just swap it for the Snore graph, by click/dragging the graph title at the left to the new position in the array. Resp Rate can give clues (only clues) as to your awake/asleep status that may be useful. Snore is not as important.
- Your AHI for the night was 3.6, with most of your Events falling in the Hypopnea, RERA, and Flow Limitation categories. You could try raising your Min Pressure to something like 6 so the machine doesn't have to work so long to get up (as from 4) to deal with Obstructives. If that seems like too big a jump, try up to 5 first, then move up to 6. Try any change for several nights (not just one) to get a good sense of how you feel in the morning. (Such a change made a big difference for me; I still felt crappy with AHI at 3-4/lots of Hypops., RERAs, FLs; and better when it got down to 1-2 range with a higher Min Pressure setting.)
- Does the midnight/1 a.m. bedtime work well for you? (Personally, I feel much better rested when I go to bed a couple hours earlier than that. . but that's just me. . it means I can get 8-9 hours sleep optimally.) And/or review your other sleep hygiene practices to see if anything could be tweaked? We all have individual preferences, but it's a good idea to review them from time to time as a variety of circumstances can change how well they suit us.

Jean