freaking out over the mask

I had my sleep study recently and got the results yesterday. Shows 18 times per hour I stopped breathing. Dx moderate sleep apnea syndrome. The secretary to this company called me saying I needed ANOTHER sleep study ( titration) with the cpap machine and all those wire and cords. What? I was never told this. No one EVER told me I had to go through that again!

The sleep study was a traumatic awful experience. To have to go through that again WITH a mask on my face is frightening. I have a true phobia to masks and I need to acclimate myself to this whole ordeal. I asked her if I could rent a mask and wear it at home in my daily life so I can get used to it. NOT having the tech come wire me up, put the mask on my face when I am lying flat in bed. That is terrifying for someone who has a mask phobia and panic attacks.


I told her then I would be sedated and she said no as that skews the test. OMG- please help. I dont know what to do. I will call today and try to get back into my doctor whom I told all about my panic attacks.


She said "No we dont offer any type of acclimation training. Maybe you could get therapy for it? " Well, I was taken aback that she felt qualified to suggest that, but any therapist is going to need me to bring the mask and learn how to be in control of it. I can't do that unless I have one in my hand! HELLO! Why won't this company offer me a mask? Am I really the first person to have an anxiety disorder and panic attacks who needs a cpap? Should I buy a cheap mask on eBay?


My neighbor wears an oxygen mask and I tried it for the heck of it. Within 30 seconds, my eyes were tearing and my heart racing so fast I could feel it. I hate this feeling!

I am beside myself.


I have TMJ so I dont know if I am eligible for the oral appliance. This whole ordeal makes me want to shrivel up and die. I cried so much last night. Yes I am sounding melodramatic, but only another person with true panic disorders can relate. I ONLY have this problem with things on my face- scarrves, blankets, any kinds of masks. Of course I end up also having apnea. Poetic justice.

If there is anyone else out there who struggled with this, please let me know. Right now I feel like a total freak.

paws wrote:
I told her then I would be sedated and she said no as that skews the test. OMG- please help. I dont know what to do. I will call today and try to get back into my doctor whom I told all about my panic attacks.

I'm surprised by her response. When I went in for both sleep tests, my first and titration, they said it was OK for me to use a sleeping pill. In fact for my first test, my doctor recommended it. I wonder how it could skew the test? I have to say that when I used the sleeping pill along with the mask at titration, I truly felt the effects of the CPAP machine the next morning. It was the greatest feeling I had felt in years because it was the first time in a long time that I had truly had restorative sleep.

Novatom's right - one lousy little e.g. Ambien (the most used) is not going to skew anything! The titration is so that they can find out what level of air pressure to prescribe for Cpap... it'll probably be shorter than the first night when they needed to get a fixed amount of time to diagnose apnea (or anything else), but the titration is different. If you haven't had treatment for phobias (it's generally a pretty quick fix if done by the right person) you should really look into getting it... whether or not you do Cpap.

Since you clearly have low tolerance for the clinical tests, ask your doctor to simply prescribe an Auto CPAP so you can self-titrate at home. Many people are able to use auto titrating CPAPs which not only save the extra cost and stress of another test night, but usually provide a better therapy experience. The only catch is you have to be a bit more involved to get it right.

+100 to the auto machine.
Even though my titration was uneventful, they got it WRONG!
--by around 3 cm. pressure!
With TMJ, I would recommend you avoid a full face mask if at all possible.

I would say seek out another sleep doctor.... it is sort of like masks.. .sometimes you have to try a few before you hit the right one.


Also.. I know I can't tolerate them... but have you considered nasal pillows?

Best of luck!

thank you so much!

What is the auto cpap? Please tell me more. I will research today.


THe tech who comes out to do the titration sleep study, how does he determine which mask to put on my face?

is it possible I can order one BEFORE the test to get myself used to it?

There are SO many kinds of machines? How do they know which one is best? Or does the dr do that?

This is the company the sleep study people use is called resmed

I was not told which one is used for the titration study. How do they determine? I have asked that question and have not gotten a reply yet.

Why is a full mask not suggested for TMJ?


I am seeing my doctor at the end of the week and will ask if I can get the mask now and try to do the titration at home on my own. Will my insurance let me get the mask and machine if the dr recommends it based on the first study? Or must I have the titration sleep study?


Looking at these photos, I think the nasal pillow seems the least intrusive, but I don't know if I would like it. I am concerned about that TMJ too.

For TMJ, you don't always want something pressing on your chin/lower jaw.
Some may tolerate it, but nasal cushions and nasal pillows are less on your face.
Easier to seal, easier on the psyche.

I have TMJ and I use a FF mask.. I think it's fine if you don't need to make it too tight.

And you should not need to wear it too tight or else you'll end up with leaks, etc.

Home titrations with APAP machines are common and in fact some insurance would prefer that way because it's cheaper than an in lab study. It all depends on the insurance company.

For a mask that is less likely to provoke the panic attacks...look at the mask I have in my profile (just click on the link) as it's just about as next to nothing as a mask can be and trust me ...I have tried a bunch of them.
Will you like it? That's an unknown right now but you have to start somewhere and if you have problems I bet you won't be the first one to have them and we all know some hints to help the adjustment.

paws wrote:I am beside myself.

You didn't do any research or reading about sleep apnea (to prepare yourself) BEFORE you had your sleep study?

We ALL went through this (sleep studies) in various ways before we started our therapy, too.
Start reading and educating yourself and in particular searching this site for various words and phrases. There's virtually nothing new about this therapy that hasn't been discussed thousands of times before on this forum.


Den

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Wulfman... wrote:

paws wrote:I am beside myself.

You didn't do any research or reading about sleep apnea (to prepare yourself) BEFORE you had your sleep study?

We ALL went through this (sleep studies) in various ways before we started our therapy, too.
Start reading and educating yourself and in particular searching this site for various words and phrases. There's virtually nothing new about this therapy that hasn't been discussed thousands of times before on this forum.


Den

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What Den said ! between the search window at top of this page & the yellow light bulb beside it, plus all the info youtube/internet on cpap you have no excuse to not educate yourself....HUGS , now get busy
tim

I HAVE been educating myself! I have watched a dozen youtube videos. I read the literature online. I found a facecbook support page, but so much info is conflicting and is individualized. One lady in the support group told me CPAPs are awful and I need the BIPAP.

Another said the oral appliance will cause headaches. Another said they are the best for TMJ.

The doctors office staff had different information than the sleep study secretary. Then my allergist told me even different information.

So I AM trying to do my research, but everyone is a snowflake and unique. I just was NOT told about having two sleep studies.

I am sorry if I am aggravating some of you with my naive questions, but as you know lack of oxygen during sleep affects ones ability to concentrate.

I am very sensitive and feel like I have been reprimanded. If my questions, are not welcome, I will graciously leave.