I rather die a slow & painful death than wear a CPAP mask!

by Shelly
(USA)

I hate the sleep masks & refuse to wear them. I'd much rather die a slow & painful death than wear one. They are uncomfortable, all of them.


It always feels like too much air & I wake up with a painful headache. I already can't hold a job because I'm too tired & has always been that way.

What difference does it make to me at this point if I die a slow & complicated death because of a stupid mask?

I hate the sleep masks & refuse to wear them. I'd much rather die a slow & painful death than wear one. They are uncomfortable, all of them.

It always feels like too much air & I wake up with a painful headache. I already can't hold a job because I'm too tired & has always been that way.

What difference does it make to me at this point if I die a slow & complicated death because of a stupid mask?

Answer

Dear Shelly,

Did you know that untreated sleep apnea causes clinical depression? Furthermore, the depression may worsen when you start the CPAP, because you have a difficult time adjusting to CPAP therapy.

I'm telling you this to be clear that this is not unusual to have such difficult times instead of getting better. There are many patients with this kind of CPAP problems, but fortunately there are many solutions.

Shelly, you just need someone to help you, because you've lost the power and the will to continue finding the right way to adjust to CPAP or finding an alternative.

Do you know what is so unfair with this annoying CPAP treatment? Some people lose their will to continue finding a solution or asking for help, and they give up, waiting to die.

Others, loose their will but somehow the family, the doctor or a friend is so pushing and trying everything for them that in the end they will improve the CPAP treatment. And when these treated patients feel alive again, they couldn't believe they've chosen to die.

The clinical depression is doing this thing to you: it leaves you without your will to fight for your life. It leaves you without your motivation. So, what's the point to continue? What's the point to read all the tips from here, if you don't want to live anymore?

Well, I've already answered to this question: you have a side effect of untreated sleep apnea, called clinical depression. Many untreated patients with sleep apnea have this problem. I PROMISE you, that when you will sleep better, the depression starts to improve (slowly), and in the end you will feel born again.

Without the will to live, you won't find a solution. But the solution is there.

I've had the depression myself, and now I can't believe what I could think about in those bad days of untreated sleep apnea.


Shelly, it is possible to be treated. You just need help. Help from us, from other patients with same problems like you, from sleep doctors, from family, from friends... You just need to ask for help, and you already did...right here:)

I would give you many tips to help you if I would know more info about your problems. Can you help me and everyone else to understand your difficulties?

We can offer more help if you can give more information about your CPAP mask, your reasons for hating CPAP, your type and causes of sleep apnea, etc.

From your submission, I understand that the main problem is the CPAP mask. I've already wrote an article about the uncomfortable CPAP mask, so you could find some helpful information there.


Another helpful article is about CPAP mask and anxiety.

But you gave me another important clue for your problem: It always feels like too much air...

There are simple solutions to this problem...only if I knew what type of CPAP mask you have. However, there is something helpful if you feel too much air coming: your CPAP machine may have a ramp feature, which can be very helpful for you.

Actually, the ramp feature helps you get acclimated to mask and pressure. How? Your CPAP machine will start at a lower pre-set pressure (configurable by your doctor or you) and gradually increase (or ramp) the pressure over a pre-set time until it reaches the prescribed pressure.

The idea is to let you start the CPAP machine at a lower setting and gradually ramp up to the prescribed pressure while you fall asleep. Some people (like you) have a difficult time falling asleep at higher pressures.

So, does your CPAP machine has a ramp feature?

Another helpful thing if you are on a regular CPAP machine, is to ask your doctor and DME to switch you to a CPAP with C-flex, EPR or to a BiPAP, where they can make it so you're not getting the full pressure when you exhale. This way you should fill up with less air.


About your headache... Did you know that patints with untreated sleep apnea wake up in the morning with painful headache?

It's not the CPAP that causes you painful headaches, but the untreated sleep apnea. CPAP should be the saver.

Here are some questions about sleep apnea headaches and the answers:

Other reason you still feel bad - beside depression - is because you have not been able to consistently use your CPAP, therefore, you have never recovered your sleep debt or the damage to your body that has accumulated.

Therefore, have you considered surgery? Surgery will only help with obstructive sleep apnea and usually requires a multiphasic approach for most cases, except for those that are very mild.

If you have time, you can check this article to learn more about surgery for sleep apnea.

The other alternative for obstructive apnea - which is 100% successful and a fairly simple surgical procedure - is a tracheotomy. But it doesn't help with central sleep apnea.

There are many alternative treatments for sleep apnea, but the treatment should treat the cause and not the symptom.

For exemple, many patients with sleep apnea have been treated or their sleep was improved with positional therapy. You can try this therapy even tonight, with your CPAP on, or without it, to see if you have good results.

There are also new solutions which will be available in the future, like the Targeted Hypoglossal Neurostimulation (THN).


Shelly, I don't want you to start right now doing surgery, or something in a rush with bad results. All I wanted to say in this page is that you have many options, and there is a solution for every patient.

You have the most common problem: the CPAP mask problem. We have to work with this and try everything, before choosing something else.

Please Shelly, don't give up. Sleep apnea is a very serious condition, and not an easy thing to live with. And each individual is different. What works for one person will not necessarily work for another. There is a lot of trial and error. There is a solution for you, but you have to keep digging until you find it. We're here to help, and the more information you can provide, the more we can do.

Try to take it one step at a time. Break it down into manageable pieces. What is the one thing bothers you the most? Let's work on that first. Is your mask uncomfortable? Are you having leaks? Is your machine data capable, and if so, how is your treatment working when you are using the machine?

Four hours with CPAP may be all that is necessary for compliance, but you will need to be able to use it every second you are sleeping for it to really do its job.

I know you said that you don't care anymore, because you refuse to wear the mask, you want to give up. But I promise you again: if you find the right mask for your face, you will feel alive again. And you will enjoy life.

No more tiredness, no more sadness, no more crying!

So hang in there!

I hope it helps. Don't be afraid to comment back.

Remy Thierry
Founder of Sleep Apnea Guide


Comments for I rather die a slow & painful death than wear a CPAP mask!

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May 18, 2011
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This actually works
by: Missme

If you feel it's too difficult get used to the cpap mask, try the old trick of using your mask during the day. Take the machine and mask out of the bedroom, set it up next to your favorite place to relax. Watch TV, read, listen to music while using your equipment.

This actually works ...it helps you desensitize to the mask/machine, learn exactly what the issues are, where the leaks are etc...it takes the pressure off 'having to fall asleep'.

May 18, 2011
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sleep apnea and insomnia
by: Blinky

In all honesty, it is likely to get WORSE before it gets BETTER. In my case I've got TWO things going on: CPAP adjustment and Insomnia with sleep apnea.

CPAP adjustment is bad enough by itself. I spent the first two weeks of CPAP feeling like a walking zombie. I spent the first two months feeling significantly worse than I felt before CPAP. I've had a lot of work to sleep better again.

May 18, 2011
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Really?
by: Daniel

You say that you'd rather die than deal with the machine. Really? I suggest you take a field trip to the nearest rehab facility and see what the aftermath of a stroke can be like. While you're at it, visit the cardiac unit of the hospital and see the effects of a heart attack, another possible consequence of untreated apnea. There are a lot worse things than having to use a cpap.

Lest you think that I am unsympathetic and don't know what you're going through, let me assure you, I do. I was on bipap for over a year, with virtually no results. I have severe complex apnea, and finally was switched to an asv machine. And while there was some improvement, it still wasn't working as well as it should.

So I made an appointment at the nearest big teaching hospital, with the director of the sleep lab there. He looked at my sleep studies and immediately saw that my leg movements were a problem, and prescribed Mirapex, a med for restless leg syndrome. Finally, I am getting quality sleep, and am slowly starting to feel like my old self. So, the sleep apnea was not the only problem, and it is takiing a combination of asv and Mirapex to deal with it.

If you are not seeing a qualified sleep specialist, then you might want to consider doing so. My former doctor was a pulmonologist, and a very nice person. But in the year that she was treating me, she never once mentioned that the leg movements might be affecting my sleep. She was concentrating only on the apnea, and that just wasn't enough. It took another pair of eyes to see what else might be wrong.

If you are going to get along with CPAP, you are going to have to adopt a different attitude, one of, "I can overcome this" rather than feeling you would rather die of a heart attack.

The folks here are wonderful and can help you through this, so hang in there!

May 20, 2011
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No Easy Way Out!
by: Harry

Shelly:
I fully understand your helplessness.However,ignoring
the Sleep-Apnea will only precipitate a heart-condition.Believe me,I know!
TRY this simple solution,instead:Get a Nasal-Pillow mask,and,a CPAP with a card-reader & ramp-setting.Limit the higher pressure to 10-12 to start with.Monitor the AHIs,etc.,periodically,and,you'll soon be trusting the treatment & your equipment.

May 30, 2011
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You Need To Work At This!
by: Kath

I am so sorry you're feeling like this, and has already been mentioned, you're probably suffering from depression due to the severe sleep deprivation you're going through, so the first port of call needs to be to your doctor to get help for this.

When you're feeling better I hope you'll start to come to terms with your treatment. I run a business in the UK for sufferers like myself called Hope2Sleep, and I supply comfort accessories for CPAP (which you'll easily be able to locate if you're in the US as that's where I import them from).

I deal with people who have to use CPAP, but value life highly, and want help in order to use their CPAP's more comfortably. I also offer a help service and a forum (www.hope2sleepguide.co.uk)for these people.

When you're feeling better about your depression, you can join forums like mine for support, but please, I encourage you to be thankful that sleep apnoea can be easily treated, unlike some other conditions and illnesses.

The masks aren't great, but some poor people have to wear masks during the day as well. At least ours are behind closed doors. Contacting this site is the best thing you did, and tells me that you don't really want to die a slow death.

Perhaps you feel isolated at the moment, but don't, because the chances of many of your family and friends having sleep apnoea is very high, so maybe you can use your limited energy in spotting them and helping them.

When I was first diagnosed and saw the awful images on the internet of people wearing masks I truly felt sorry for myself. However, at the time my Dad had been diagnosed with bowel cancer, so this helped me to get things in perspective. Hope you can too!

Mar 25, 2012
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Have not seen this option mentioned
by: Dr. Tom Armstrong

Shelly,

I have read through the various answers proposed, and they all are encouraging you to work through your CPAP problems.

How about putting your CPAP away forever? An Oral Appliance, provided by a properly trained and experienced dentist, may be a good approach. I am not talking about $50 snore mouthpieces that state in their "fine print" they are not for sleep apnea (these companies conveniently fail to mention that snoring is part of sleep apnea).

True, FDA-approved (not "FDA cleared", a meaningless term by the way) Oral Appliances are endorsed by the American Academy of Sleep Medicine, and have been proven in actual published medical studies to be equally effective as CPAP for many patients, and are far, far more comfortable to use.

No more mask, hoses, noisy machine, major daily maintainance procedures, or hassles with travel.

Now, you will see a lot of complaints about cost of this approach, especially when many medical insurances will pay more for CPAP than Oral Appliance treatment. It definitely makes no sense - the cost of not treating apnea can more than double someone's health costs. When you research "real" Oral Appliances, do not be confused. The secret to success in not the appliance, it is the follow up. A good dental office will included anywhere from 6-8 visits in the cost of treatment. Those visits insure the appliance is correctly fitted and adjusted to the maximum effective position.

Dentists who are actually treating patients are almost all members of the American Academy of Dental Sleep Medicine, aadsm.org, and you can put in your zip code to get names of members in your area.

Don't put off getting some treatment for your sleep apnea. The risks to your long-term health are significant. You talk about rather dying a slow death than use CPAP, but that pathway may include things like heart attack, stroke, diabetes, worse depression, hypertension, possibly cancer, and other medical problems that are caused by inadequately or untreated sleep apnea. Good luck to you!

Nov 10, 2012
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not clinical depression!
by: Tordealach o braoin

my doctor tried to tell me i was depressed BEFOREI was diagnosed with severe apnea[30+ episodes]so,its a bit of a red herring to tell Shelly she may be clinically depressed,sheer frustration,and not depression is a human reaction to a very debilitating dis-ease,and not a 'symptom'.

To Shelly,I say keep trying with the cpap treatment,have more patience,but more importantly,have a discussion with your gp/tech.advisors about settings on your machine e.g. ramp settings etc'.

It was a long haul for me before I settled on my present settings,and it took years of mis-diagnosis by various g.p.'swho simply had'nt the answers to my symptoms because they were ignorant of o.s.a.!

After some time and perseverance your quality of sleep,and the headaches will lessen.

Before bipap treatment,I had those headaches etc'every day for two years+,the sleep debt[others mention]is the cause of this,and slowly decreases over time,with constant use of the bipap.

Hope this helps..all the best T.

Dec 14, 2012
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Testing and CPAP
by: George

First off when I was tested for sleep apnea, I was made to come in at 7PM even though I was working second shift and normally didn't go to bed until about 2AM or 3AM.
I tried to be allowed to come in at say Midnight but was told that they don't do testing then and I was out of luck.
It took three nights to do two nights of testing, a tech no showed the second night.
When I got the results at the Neurologist Office, I was told that I snore every night.
My wife looked at the Neurologist and told him that I hardly ever snore, so what were they looking at.
The machine to me is a joke and I have been through more masks than I can count, from half mask to full face mask.
They irritate my face, it is almost as if I am allergic to the mask.
Finally I told them that they could take there stupid machine back, which they did not.
I found that I sleep the same with or with out the stupid machine.
My only problem is explaining to Doctor's why I don't use the machine.

Jan 02, 2013
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An at-home sleep study may work for you!
by: Dr Tom Armstrong

George,

Sorry to hear about your poor experiences with the sleep lab. Because of the problems, your sleep study results may not be accurate.

Why not ask your physician to prescribe a take-home (or ambulatory) study. While not as comprehensive or detailed as a full lab study, they can provide enough good data to evaluate oxygen levels, breathing, pulse, and snoring to see what is really happening when you are asleep.

Obviously, your physician is concerned about sleep apnea. A home study that is correctly analyzed by a sleep specialist will let you know if you have sleep apnea and how severe it is.

With a home study, you hook it up when you go to bed, whatever time that is. It would work with your schedule.

Since you were put on CPAP, your sleep study showed some level of apnea. Snoring is a common warning sign of this, but keep in mind that not all apnea patients are loud snorers.

If your apnea is mild or moderate, why not ask about using an FDA-approved Oral Appliance provided by a specifically trained dentist? It would be way more comfortable than a CPAP mask to use.

Whatever you do, if you have sleep apnea, its not something to joke about or ignore.

Good luck to you.

(see my previous answer for more information)

Jan 02, 2013
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CPAP Machines
by: George

Tom,
Regarding your comments. I have made the decision that I would rather live without a machine period.

That testing lab was a joke. I got told that they will test people who work day shift and work midnights, which by the way I am now working midnights.

When the Neurologist pulled out some sort of stupid chart to try and scare me with by saying you have severe apnea and you snore all night long.

My wife looked at him and said "my husband only snores when he is really tired".

I looked at the Neurologist and said something to the affect of "if you turn your chart this way it shows that I have no apnea at all". He did not like that comment.

I had trouble with his office staff and one day I called to talk to the office manager only to find out that she had been left go. Turns out all of his and his brother(who is also a Doctor) had fired there entire staff and brought in contract workers, it was cheaper that way.

I got mad and cancelled all of my future appointments, the staff just laughed at me.
I find it ironic as they did cancel all future appointments for my wife but not me.

They tried to bill me for a missed appointment, that I had already cancelled, I refused to pay it saying that I had given them three weeks notice of my cancelling that appoint and if they screwed up then they had to pay for the appointment.

I am now seeing a Neurologist, who is at a major Medical Center/Medical School/Trauma One Facility.
If she wants me to go through testing again, I will discuss it with her.

Jan 11, 2013
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Sleep Apena
by: George

Let me clarify some things that I said earlier.
Like I mentioned earlier, I have tried more masks than I want to count.
When I was on a half mask I would wake up and I would find that during the night I had ripped the mask off.
The Neurologist who was treating me then put me on the full face mask.
Every time I used that stupid machine and mask, it would feel like something was irritating my face.
Again that would wake me up and finally I would take the mask off.
None of those things worked for me.
I was told by that Neurologist that I had severe sleep apnea and Restless Leg Syndrome, the Neurologist basically told me he could basically tell just by looking at me and my body build. And this was before the testing even began.
Even my now former PCP, who sent me to this Doctor, told me that based on my build that I had sleep apnea and this was before any testing was done.
It was like someone judging a book by its' cover before they even had read the book.
Years earlier, when I lived in the Bay Area, I saw a Doctor who told me that based on my body size that he knew that I had high cholesterol.
He ran lab tests on me for the above only to find that when the labs can back I was low or border line low for cholesterol.
The Doctor was stunned and amazed.
This is why I have some complaints about the PCP and the Neurologist.
Another thing I noticed in the Neurologist Office was that nearly every patient who saw the Neurologist that I saw or his brother who is also a Neurologist, was diagnosed with Sleep Apnea. It was almost like the testing lab, which was part of there office, was told that everyone who comes in for testing has to have sleep apnea.

Now I have other medical conditions which are being addressed more than what I perceive to be the questionable diagnosis of Sleep Apnea.
One condition that I have which I feel is more important is that I have been diagnosed with Non-Alcoholic Steato Hepatitis(NASH) for which I am being followed by the Liver Transplant Team at a major Medical Facility. I have regular appointments, every six months, for this condition and for which I have now been given a MELD score.
I think Dr. Tom Armstrong understands what I am talking about.

Sep 12, 2014
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Altered thinking from sleep depravation
by: Anonymous

It sounds like you are in a very depressed state of mind from sleep depravation. Please take it from me as I am living proof that it is a monumental mistake to ever stop using it. I stopped using the CPAP due to mask frustration and other issues that should not have been issues, and now I regret it more than I can express.

Dec 31, 2014
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Chest pain the morning after 1 1/2 weeks of CPAP therapy
by: Jerry

You mention headaches as a side effect.I started on a cpap machine 12-22-14 i'm having problems w/ chest pain at the age of 60 and i'm a-fib (heart arithmia)and the pain i have lasts at the least so-far 1 to 4 hours how can you tell the differences in chest pain when that's what the CPAP causes me to have . I was very positive about the treatment til the morning after wearing it for 8 hours 3 days in a row caused me so much pain i came very close about going to the emergency room w/ my heart symptoms or the CPAP SYMPTOMS it's very scary at first signs of these Symptoms ! That's where i'm at and it's New Year's Eve experencing these problems w no DR.s advice on how or what to take care of . I can fall asleep w/o it also !Scared of the chest pain but was advised by the Machine distributer telling me you may as well keep using it cause the CPAP is needed reguardless if my chest pain is severe or not because the first thing the paramedics would do is put me on a CPAP anyway so it's New Years and i'm home alone after starting the CPAP a week and a half ago.

Jul 07, 2015
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I use the Cpap now!
by: Anonymous

I thought I could never ever get used to the machine. The doctor allowed me a short dose of sleep meds to get me started. It is like sucking your thumb.

Finally you not only get used to it, you feel it is part of going to sleep, like curling up. You need a long ramp period to start. I sleep easier now and have confidence that I won't have a stroke. I hated it at first, now I don't even think about it. Good luck. Save your life.fiance

Nov 27, 2015
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CPAP made me feel worse!
by: Julia

I multiple issues like insomnia, PTSD, Anxiety, and both central and obstructive apnea. I was put on Auto CPAP with 02, knowing all my issues, and are shocked when I can't keep the dang thing on because the pressure is too high. I can't breath! (No I don't have ramp, it's auto with a min of 4 and a max of 10). Why can't they make a machine that can come on once you start to have an issues? I can't get to sleep, the mask is uncomfortable and my insurance will only give me a new one after a month. This has been happening for the past three weeks, when I started this hell ride. I go to bed tired, put the thing on, have an anxiety attack, up for the rest of the night. That's my life now. One time I slept with it after drugging myself, I woke up with a headache and a nose bleed. (yes I have a humidifier). I don't have many other options because I have to be on 02. I'm at the point where I'm about to return the damn thing. Why won't they make a CPAP that turns on after the patient is asleep. That would solve so many issues. Also yes, I have tried using it while watch TV, just give me another attack.

Dec 31, 2015
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Cpap
by: Anonymous

I used cpap for over a year and a half. I Dieted exercised and lost 90 pounds. I am 50 and can now run up to 5 miles where I could not even walk that far before but even with these gains in health I still need the dam thing. I feel all the work I did is for nothing. Who wants to live depending on a machine to keep you breathing. This is the best medicine can offer me a life time of torture?



Sep 12, 2016
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CPAP is a trigger
by: Anonymous

CPAP is a PTSD trigger. Until sleep specialists recognize this and come up with a therapy that does not feel exactly like oral rape/being choked (not hyperbole, as someone who has experienced both) regardless of the settings on the damned thing, there will continue to be noncompliance. Its purpose is to force the throat open. How many people do you think have experienced that? 1 in 4 women. Fuzzier statistics on men.

Saying slowly and calmly to the many people who have this experience "Stick with it. It will be fine." is NOT A SOLUTION. Its like telling a person with depression, anxiety and PTSD to "get over it". Unfair. Unkind. Willfully ignorant. That doctor needs to come up with better alternatives. This treatment is cruel.

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