What the Hell?

Queen of Darkness wrote: I am scared to put the provided mask back on, as my first experience really frightened me.

You just had your first breakthrough (baby step?) by saying 'I am scared'. Congratulations. I love to see this turn of events with a newbie. You also have your first awesome challenge/insight... you now know where the insomnia beast gets its power and where its lair is. Let us know how it goes and good luck. We want more breakthroughs. Also: Tell your family to stop screwing around with this demon possession talk. It's messing up your health, distracting you from your task and it's not helping their karma at all. What goes around comes around, et al.

Queen of Darkness wrote:
I may try using the cpap with a surgical mask, with the tube duct taped in place. That way, if the machine stops, I can still breathe. I am scared to put the provided mask back on, as my first experience really frightened me. The machine malfunctioned. I felt like I was being smothered

That is the worst thing you can do. Do not try to reinvent the mask. All masks come with anti asphyxiation valves and are specially designed to allow CO2 to vent AND to provide the correct pressure. The sensation of being smothered was purely mental/emotional.

What you need to do is find a nice interesting movie, put the machine and mask on and sit back and enjoy the movie. Let your mind get used that this is ok and safe to use.

Thank you for giving me some things to consider. Now, what are we all doing up so late?

This is a global forum, not everyone lives in the same time zone where you do.

Sir NoddinOff wrote:

Queen of Darkness wrote: I am scared to put the provided mask back on, as my first experience really frightened me.

You just had your first breakthrough (baby step?) by saying 'I am scared'. Congratulations. I love to see this turn of events with a newbie. You also have your first awesome challenge/insight... you now know where the insomnia beast gets its power and where its lair is. Let us know how it goes and good luck. We want more breakthroughs. Also: Tell your family to stop screwing around with this demon possession talk. It's messing up your health, distracting you from your task and it's not helping their karma at all. What goes around comes around, et al.

I agree. Admitting fear is a good starting place.

My first night at home on the cpap (wow, I was ever on a cpap???) in November 2009. I went back early to get masked up and try to get used to the thing before trying to sleep on it. I was using a nasal mask that first night (Damn, I ever used a NASAL mask???) and my son came in to see how I was doing. He was about 13 I think. When I tried to talk to him with all of that, it came out very strange, like I was choking and that poor kid ran screaming and crying out of my bedroom, yelling to his dad that "Mommy's choking on that thing!"

I was okay (cannot say fine because who can possibly be fine with all that) and he hugged me, crying his poor eyes out. He was SO scared and he said "I just need you to be okay, Mommy." And I told him that I needed these machines to be and stay okay.

As I said in my other post -- there is so much help and support available here, if you take advantage of it. I hope you will so that you, hopefully, can eventually be okay.

Queen of Darkness wrote: I may try using the cpap with a surgical mask, with the tube duct taped in place. That way, if the machine stops, I can still breathe. I am scared to put the provided mask back on, as my first experience really frightened me. The machine malfunctioned. I felt like I was being smothered

All cpap masks are safe. Any mask that covers both the nose and mouth have a special valve built in so that it will open any time the air flow from the mask stops. It is not comfortable to wake up when the machine is off, but it won't hurt you. My machine has shut off 3 times in a year and a half. I suspect my cat had something to do with it. But each time, I woke up, realized my air was reduced, and turned the machine back on. Which mask do you have? We can help you with it. Even low pressures have a smothering effect for most people. Not dangerous, just not comfortable either. And it can be scary until you know what it feels like and understand what is happening. A surgical mask isn't designed for use with a cpap, so it could be anywhere in the range from useless to dangerous. You may need a different style cpap mask, and there lots of them. Don't let the equipment provider (DME) try to convince you that there are only a few. They may push what they carry and make the most money on, but you have the right to get a mask that fits you well and is comfortable.

Appliances often malfunction in my house. Things seem to switch on and off by themselves. The tv will turn itself on in the middle of the night. I think the wiring may need to be checked.

My husband died a few years ago, and my kid

If I were you, I would hire an electrician to check the wiring. At the very least, get at least one updated outlet that you can use with your cpap machine. It is a medical necessity. The wiring in our house is not fully updated in all rooms. But my dad ran a special extension cord into my bedroom that has a grounded plug. I use this for my cpap, computer, etc.

Thank you for giving me some things to consider. Now, what are we all doing up so late?

Some of it is different time zones. Some of it is simply different sleep times. I live in Washington, so pacific time zone. But I am a severe night owl, so I typically go to bed between 4 and 6 am.

In response to several remarks here, I would like to say that I haven't changed my mind, changed my opinion, changed my position, from start to finish, all through this string. I simply provided more information because a few people were actually providing some positive input for me.

There is somebody calling himself backsplinter who seems to like to spew a lot of imperious bullshit, spread false information, and make a fool of him/herself. And put lots of effort into it, too.

People like that make those who are wise and sincere afraid to post anything. I appreciate hearing from people who had positive things to say.

No matter. I got some surgical masks. I will bring the machine back from my office tomorrow. I will see if I can make that work. If not, i will go to a patient advocate to help me return the machine.

I told the nue when she was setting me up that plastic masks make me edgy. I have had a few sugeries, including a nephrectomy. The last thing they do before putting you under is snap a mask on you (shudder). I hate the mask, and as I discussed the problem with my engineer friends, came to realize that was my biggest hangup.

I wish a pleasant evening to you all.

Queen of Darkness wrote: There is somebody calling himself backsplinter who seems to like to spew a lot of imperious bullshit, spread false information, and make a fool of him/herself. And put lots of effort into it, too.

Because you make such an ass of yourself, you deliciously little twit. I haven't had so much fun in ages. None of what I said is false - you just want it to be false.

Queen of Darkness wrote: I told the nue when she was setting me up that plastic masks make me edgy.

There are all cloth masks available. Check out the SleepWeaver masks by Circadiance:

https://www.cpap.com/productpage/sleepw ... -cpap.html
https://www.cpap.com/productpage/sleepw ... -mask.html
https://www.cpap.com/productpage/sleepw ... -mask.html
https://www.cpap.com/productpage/single ... -mask.html

Queen of Darkness wrote:
No matter. I got some surgical masks. I will bring the machine back from my office tomorrow. I will see if I can make that work. If not, i will go to a patient advocate to help me return the machine.

I told the nue when she was setting me up that plastic masks make me edgy. I have had a few sugeries, including a nephrectomy. The last thing they do before putting you under is snap a mask on you (shudder). I hate the mask, and as I discussed the problem with my engineer friends, came to realize that was my biggest hangup.

I wish a pleasant evening to you all.

I've been using CPAP for a little over a year. Three months ago, I had surgery. As I was laying there on the table he put an oxygen mask on me and that pressure was too low from what I am now accustomed to, and I nearly ripped it off my face. Fortunately, I was quickly put under and then they used an airway so it didn't matter. I don't know if that is the type of surgical mask you're referring to, but if the pressure is not high enough you'll still feel as if you were suffocating.

My first few nights using CPAP were very difficult. I struggled with my pressure being too low, and then the ramp which I ultimately turned off. I remember waking in the middle of the second night and ripping it off thinking it was suffocating me. I got lots of help here on this site, and now I am 14 months post treatment with 100% compliance and my life is markedly better. I hope you try again with the CPAP mask.

Queen of Darkness wrote:In response to several remarks here, I would like to say that I haven't changed my mind, changed my opinion, changed my position, from start to finish, all through this string. I simply provided more information because a few people were actually providing some positive input for me.

Thank you. Being willing to do that shows that in spite of what you written, you really do care about the outcome.

No matter. I got some surgical masks. I will bring the machine back from my office tomorrow. I will see if I can make that work. If not, i will go to a patient advocate to help me return the machine.

Give it a try. At least you're willing to try something, anything, and that is a positive move. Just be ready for it to not work, but try it anyway. And do not be surprised, nor upset, if the patient advocate urges you to give the CPAP another try.

I told the nue when she was setting me up that plastic masks make me edgy. I have had a few sugeries, including a nephrectomy. The last thing they do before putting you under is snap a mask on you (shudder). I hate the mask, and as I discussed the problem with my engineer friends, came to realize that was my biggest hangup.

Even though the mask causes an irrational fear to flare up, your reaction is real, obstructive, and probably destructive to your well being. This is something you really need to talk to some counselor about. Do you have someone like a minister you can talk with? Be brave, and take a gamble, and talk to your doctor about it. He/she very well may be able to tell you where to turn. You said you work for the Fed. They have an Employee Assistance Program available. Tap into that. I know it's there, or at least was 15 years ago when I used it one time.

Queen of Darkness, before I was diagnosed with sleep apnea I tried to go snorkeling with my wife and son in SeaWorld. I panicked with the mask on because I couldn't get enough air (or so I thought). Eventually I was able to calm myself down enough, but boy was I ever relieved to get out of that water!

Fast forward a few years. I ended up collapsing on the floor of the bathroom, and the only thing the docs could suggest was that I possibly had a sleep disorder. The diagnostic study showed an AHI of 31/hour. Oh dear, I thought. The mask will not go well. However, the technician had me try a couple of masks with no connection to the machine. I picked the one I was OK with - it turned out to be a nasal mask, although later I changed to nasal pillows. The connection to the machine was made, and I actually slept well. Between the diagnostic and titration study I had told myself over and over that this darned thing that was being stuck on my face would actually help me breathe at night, and keep me from having a repeat collapse. I knew that if a repeat occurred I could lose my driver's license, etc.

I got my own machine, and went to bed wanting to make it work. However, they had started the ramp at 4, and I felt like I couldn't breathe - suffocating. I changed to start at 6, and I felt better - after a short while I did away with the ramp altogether and have never tried to use it since. At that time I was at a pressure of 8, since increased to 10. I will be asking my doc if I can be allowed to go up to 12 in small steps if I need it when I see him on Tuesday.

Sorry this is such a long post, but I want you to know that your fears make perfect sense to me. However, to be able to overcome them, you need to persist with the pain in the tush machine/mask. Don't accept the first mask they gave you, and don't accept their instructions for how to fit it. It must be comfortable for you, in your sleeping position. Don't accept the ramp settings, or the humidity, or the breathing assistance (where the machine gives you a slightly lower pressure when you need to breathe out). I only use the humidity when I have a cold/allergies, and don't use the other things at all.

Good luck, listen to what your body tells you (not your brain), and ask for help if you need it. You have been prescribed the machine for a reason, and that reason may result in your premature death if you do not use the machine. I hate the machine, but I hate the way I feel if I don't use it more.

Key words you "felt like you were being smothered". Apparently it was a feeling and not reality as you lived to tell the tale. Feelings and facts are two distinct different things. Decades of engineering has gone into xpap mask technology but based on water cooler talk you feel you can do better with duct tape? I am simply stunned. You need to be treated for insomniaμ apnea and maybie some other disorder. I will let you choose the other disorder. In 2.5 years my pap machine has never turned off unless I pushed the button. If you have such severe electrical issues you will probably die in a house fire due to bad wiring long before you suffocate in a factory made xpap mask. Fear is an odd thing. You can adjust to bad wiring and ghosts but one night on cpap and you are sure the mask is dangerous. I see so many disorders lurking in the shadows it boggles my pea brain. Fix the stinking wiring tomorrow, get professionally fitted for a mask, see the doctor again, leave the duct tape in the drawer, maybe see a counselor for the attitude and the grandious imagination that thousands of people care about your phobia developed in a night. I too have checked this thread 10 to 12 times as I originally marked you as a troll but opinion has shifted to the nuttier side of the scale. So do some simple division and you probably have less than 100 separate viewers. Now coming from someone with over a dozen electrical licences from low voltage to residential, commercial and on up to air traffic contr xevices and radar. GET YOUR WIRING FIXED BEFORE YOU GET ELECTRICUTED OR BURNED TO DEATH. If after that you still feel the need for duct tape it may not be a home made mask as its first priority. Sorry but I just cant take such drama over such a non issue when you have issues much more ominous than a "feeling" of suffocation.

Would a Federal government employee have insurance that would allow a sleep study, but not the follow-up titration study?

viewtopic/t61785/Especially-for-newly-d ... hange.html

Excellent information.

robysue wrote:

Queen of Darkness wrote: I told the nue when she was setting me up that plastic masks make me edgy.

There are all cloth masks available. Check out the SleepWeaver masks by Circadiance:

https://www.cpap.com/productpage/sleepw ... -cpap.html
https://www.cpap.com/productpage/sleepw ... -mask.html
https://www.cpap.com/productpage/sleepw ... -mask.html
https://www.cpap.com/productpage/single ... -mask.html

Excellent suggestion for someone with a fear of the plastic masks.

Q of D:
The people here are right. You already know it. You are angry, because you hoped it would be otherwise.
Now you have to make a decision: are you ready to dig in and fight for your life; or lie down and wait for the inevitable.
You sound spunky--maybe you have it in you.