Panic at thought of CPAP.

[Pesser]

I am desperate to find some answers. I've been crying all day since my sleep study when they said they "found some evidence of apnea" I have very few symptoms of apnea, I'm not over weight, I snore very little (I was very sick when they did the study last night, so I snore when I'm sick!) I'm always freezing all night (it is said you are normally hot) I had headaches when I wake, but I have them all day every day because of neck damage. I was told they were going to do the extended day time test, but they decided not to after seeing "some evidence of apnea" now I'll have to pay a lot more money if they decide to do it later (which I guess I'll be back to no sleep, because I will refuse when it would have been free today!!!! Plus, I can't take off work again, which I had to waste today for!) anyway! The main problem is I cannot wear a CPAP, I barely made it through the study because that nasty hose was touching my nose, and I was panicking. I can't even breath when I change my shirt because it's touching my face. I can't stand anything near my face or I start choking. Is there no other option!?! I can't continue not functioning all day (I sleep fine during the day and actually dream during 15 min naps ) I have read every "how to not panic" I can find out there, but I had to take a Valium after reading about something being on my face. I think I would rather not breath then have these panic attacks. I have no history of panic attacks or depression, it's just the thought of a CPAP that is horrible. Most of it is the thought that I feel like I'm failing as a human if I can't breath and sleep. I feel like a complete failure. I've never felt anything as horrible as this in my life. What can I do?

I know I'm right on this one......Forget all this advice. You get a comfortable mask. I like the Airfit P10 nasal. Then you start watching TV with your machine. You read with your machine. Get an extension cord and walk around the house with your machine. Start very slow this way. You'll get to where I am right now. This is where I am: If they told me I had no sleep apnea I would never give up my machine. It becomes like a Teddy bear. It is sooooo comfortable. Call secondwingcpap.com. They will sell you a good machine for very little money. That's it....no problems any more....go to sleep!

[Julie]

"I know I'm right on this one......Forget all this advice."

You may be right for you, but I wonder how responsible it is, warm and fuzzy as it may feel, to tell someone to forget all the advice given, some of it from really experienced and knowledgable people.

[OkyDoky]

Snoopchic, do you have the same reaction to the possibility of glasses, or contact lens, or do you wear earrings? I can not see without my glasses and would certainly be looking for help if I could no longer see. While the need for cpap may not seem the same now it is, because without therapy your health will deteriorate.

[Wulfman...]

I am desperate to find some answers. I've been crying all day since my sleep study when they said they "found some evidence of apnea" I have very few symptoms of apnea, I'm not over weight, I snore very little (I was very sick when they did the study last night, so I snore when I'm sick!) I'm always freezing all night (it is said you are normally hot) I had headaches when I wake, but I have them all day every day because of neck damage. I was told they were going to do the extended day time test, but they decided not to after seeing "some evidence of apnea" now I'll have to pay a lot more money if they decide to do it later (which I guess I'll be back to no sleep, because I will refuse when it would have been free today!!!! Plus, I can't take off work again, which I had to waste today for!) anyway! The main problem is I cannot wear a CPAP, I barely made it through the study because that nasty hose was touching my nose, and I was panicking. I can't even breath when I change my shirt because it's touching my face. I can't stand anything near my face or I start choking. Is there no other option!?! I can't continue not functioning all day (I sleep fine during the day and actually dream during 15 min naps ) I have read every "how to not panic" I can find out there, but I had to take a Valium after reading about something being on my face. I think I would rather not breath then have these panic attacks. I have no history of panic attacks or depression, it's just the thought of a CPAP that is horrible. Most of it is the thought that I feel like I'm failing as a human if I can't breath and sleep. I feel like a complete failure. I've never felt anything as horrible as this in my life. What can I do?

To rephrase a response to your post in another thread (with some additions).........

After reading your other post in another thread and now reading your posts in this thread, I have to wonder........Why are you here?
Are you interested in making this therapy work or are you looking for people to agree with you that it's OK to not use it?
If it's the latter, you came to the wrong place. We TRY to help people with their therapy........PERIOD!!!

I would suggest you take a dose of reality and develop an attitude to make this work. What would you do if you had to wear prosthetics (artificial limbs), use a wheel chair, crutches, walker, cane, carry around an oxygen tank or various other items that would help you to exist in this life? With CPAP therapy, you only have to wear it at night when you sleep. And, therein lies the problem......you don't breathe properly when you sleep and these devices help you do that. It's not like you have to wear it everywhere you go......just when you sleep.


Den

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[Snoopchic]

I have tried to see a councilor before for my OCD, my neurologist thought it may be causing me anxiety. When I saw the councilor she said there was nothing wrong with me. I have tried 3 different councilors over my life time (once in college because many unrelated things were going, and the lady living on my floor asked me to go, but I was told she had never seen anyone as control as I was, and she said to never come back :/) then the lady I was just talking about and once years later because I felt like I was too hard on my daughter, insisting on great grades and all. She told me it was just because my daughter is smart and it's normal :/ all 3 of them said I have no anxiety (the last last even told me I don't have OCD, I just like things is 2's?) anyway! I have tried to seek help several times to learn how to relax, to no avail. I have read many how too's and books about it, and nothing has ever helped. I just need to not panic until I can see results, but it's a lot easier to say, or type than do. I don't know if it was this post or the other, but yes, I would feel just as much less of a human if I had diabetes or a heart condition. I have epilepsy and that already makes me feel like a horrible person, like damaged goods. :/ I'm sure my husband telling me how stupid the apnea stuff is makes it worse, but he wants nothing to do with me/it.

[Wulfman...]

I have tried to see a councilor before for my OCD, my neurologist thought it may be causing me anxiety. When I saw the councilor she said there was nothing wrong with me. I have tried 3 different councilors over my life time (once in college because many unrelated things were going, and the lady living on my floor asked me to go, but I was told she had never seen anyone as control as I was, and she said to never come back :/) then the lady I was just talking about and once years later because I felt like I was too hard on my daughter, insisting on great grades and all. She told me it was just because my daughter is smart and it's normal :/ all 3 of them said I have no anxiety (the last last even told me I don't have OCD, I just like things is 2's?) anyway! I have tried to seek help several times to learn how to relax, to no avail. I have read many how too's and books about it, and nothing has ever helped. I just need to not panic until I can see results, but it's a lot easier to say, or type than do. I don't know if it was this post or the other, but yes, I would feel just as much less of a human if I had diabetes or a heart condition. I have epilepsy and that already makes me feel like a horrible person, like damaged goods. :/ I'm sure my husband telling me how stupid the apnea stuff is makes it worse, but he wants nothing to do with me/it.

That tells me a whole lot about your situation. I'm sorry to hear that.
If I may pose a question to you....... What if it was your daughter who needed this therapy to make her life better? What would you say to her? If you knew her health would seriously deteriorate, would you tell her it's OK to not use it?
It's really very simple. This therapy helps a person breathe while they sleep and get more oxygen in their systems. When a person stops breathing when they sleep, their oxygen levels drop and that puts stress on their organs and hormones. Many of the folks with sleep apnea have diabetes and other medical issues. Try to look at it as a "preventive" therapy.
And, if your husband is that way, he's a jerk and doesn't care about your health.


Den

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[robysue]

I know I'm right on this one......Forget all this advice.

Pesser, please re-read my advice. A big chunk of what I told Snoopchic was the same as what you told her: If you need to, go slow. Get comfortable wearing a mask. Take very small steps. Until you are comfortable enough trying to get to sleep with the mask one night.

I also added something else that's very important that you've ignored: Snoopchic has a real generalized anxiety of anything touching her face. It's to the point where it's causing real problems in her life, and in my opinion, she really does need to seek some help in addressing this anxiety issue---regardless of whether she decides to try PAP or not.

You get a comfortable mask. I like the Airfit P10 nasal.

And what should Snoopchic do if she cannot find any mask that is "comfortable"? That's a real potential issue here. And nasal pillows that touch the nostrils may actually make her anxiety worse. She really needs to do some serious thinking about what kind of mask is least likely to trigger the anxiety. Or rather, what kind of mask will trigger a manageable amount of anxiety.

This is where I am: If they told me I had no sleep apnea I would never give up my machine. It becomes like a Teddy bear. It is sooooo comfortable.

This is where you and I differ. After 5 years of PAPing, I can't image myself ever sleeping without my mask and my trusty Kaa (i.e. BiPAP). But if somehow I had a miracle cure and a sleep study actually showed that I had no sleep apnea, I'd gleefully toss all my PAP supplies away and I would really enjoy sleeping in a way that I don't enjoy it right now.

That said: I am happy that I stuck with this crazy therapy for a long enough time to get through the very dark days of my difficult adjustment period. But it's still a pita to do every single night. And while I'm comfortable enough sleeping with my Swift FX mask, I'd never describe it as sleeping with a Teddy bear.

Some people may get to where they look forward to sleeping with a PAP, but not everybody gets that far. But we do get used to it if we stick with it long enough. And we get used to feeling better than we did pre-CPAP if we stick with it long enough. And that's enough to keep most of us PAPing every night even if it remains a pita to do so.

[Snoopchic]

Thank you all so much! You are very right, if it was my daughter I would do anything I could to make it work for her. When it comes to me I rarely do what I need to. I never remember my meds or anything else I need to be doing. I have been taking screen shots of everything on here to take to the doctor. My anxiety is so much better today after all the advise I've read! It's very new for me to get freaked out about things (other than the dentist!) I wore contacts growing up but bad lasik so I wouldn't have to do it any longer, but that is a valid point. It's mostly anything near my nose and mouth that bothers me. I feel like I can't breath if anything is there. My eyes and top of my head have never been a panic factor for me just mouth and nose. I don't have the tight chest reading about them right now that I did, and I've only cried 3-4 times today about it, but we were very busy! I guess I just can't understand why it came back saying I needed it, when it just doesn't appear that way from research, as in not fitting in the standards. Thank you all so much!! Especially regarding my daughter. I tend to be a control freak, and really want to see my results, I think that would make me feel more in control. I had no problem sleeping this afternoon (I never do during the day, just can't sleep at night, I lay there for hours and I wake constantly) but, I do great all day!! Again, thank you all! I'll update after I see if they will fax me the info on Monday before the study!

[Wulfman...]

Thank you all so much! You are very right, if it was my daughter I would do anything I could to make it work for her. When it comes to me I rarely do what I need to. I never remember my meds or anything else I need to be doing. I have been taking screen shots of everything on here to take to the doctor. My anxiety is so much better today after all the advise I've read! It's very new for me to get freaked out about things (other than the dentist!) I wore contacts growing up but bad lasik so I wouldn't have to do it any longer, but that is a valid point. It's mostly anything near my nose and mouth that bothers me. I feel like I can't breath if anything is there. My eyes and top of my head have never been a panic factor for me just mouth and nose. I don't have the tight chest reading about them right now that I did, and I've only cried 3-4 times today about it, but we were very busy! I guess I just can't understand why it came back saying I needed it, when it just doesn't appear that way from research, as in not fitting in the standards. Thank you all so much!! Especially regarding my daughter. I tend to be a control freak, and really want to see my results, I think that would make me feel more in control. I had no problem sleeping this afternoon (I never do during the day, just can't sleep at night, I lay there for hours and I wake constantly) but, I do great all day!! Again, thank you all! I'll update after I see if they will fax me the info on Monday before the study!

Just try to stay calm and logical about all this. The vast majority of us went through various degrees of the same thing when we were first diagnosed, too.
For me, it was a relief that I found out why I was so darned tired all the time and I couldn't seem to sleep enough to be able to get through the days. I did lots of research on the subject and found that the therapy was really pretty simple. It's just a matter of getting used to something new in the daily/nightly routine. Hopefully it will extend my life much longer.


Den

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[Snoopchic]

I think I just feel taken advantage of since they didn't do the other test. If I knew the results, and they were severe, I wouldn't feel that way...I just hate that he doesn't want me to come to the apt until after they do the CPAP test with shoving stuff on my face. If I knew everything first, I would feel like I could work with it. If he won't fax my results Monday, I feel like I will have to post pone the test. I need to know there is a true reason. I just don't trust anyone to just say it. I have to see it for myself. You guys have helped so much today! Thank you

[chunkyfrog]

Everything you need to do for yourself you need double for your child.
She needs a healthy, strong parent. You can do it.

[Pesser]

Everything you need to do for yourself you need double for your child.
She needs a healthy, strong parent. You can do it.

1+

[jonny515]

I agree with this. If nothing is small enough, you're going to need some sort of therapy (and CBT would be the choice). I don't believe not acting is a serious solution to your situation. This post is really insightful re root of suffocation panic, btw. Don't know if it is true but it sounds really spot on.

Thank you all for the advise. It's all things I've read, and so far nothing is easing the panic. But, I don't know how bad it will be until I get them Monday...I almost left Thursday night when I panicked because of the small plastic nose piece. Nothing is "okay" nothing is small enough. I don't know about a mouth piece, but I know I gag with my very tiny mouth guard

Snoopychic,

Ask your primary care physician for a referral to a CBT therapist who has experience in helping people overcome phobias and anxiety issues.

Seriously: Even if you never use CPAP, this panic at anything being close to your face is adversely affecting the quality of your life and you need to deal with that.

Not only is this anxiety making the thought of properly treating your OSA seem impossible, it's also seems to be preventing you from treating some TMJ issues---or at least I presume the mouth guard was prescribed to treat TMJ.

And keep in mind: The anxiety and fear of suffocating if anything touches your face may be rooted in your OSA: Each time you experience an apnea when you are asleep, your body reacts as though it is being smothered. Because in fact the collapsed airway is leading to a very real, albeit very short, suffocation event. You don't consciously remember all these events that happen every single night after you go to sleep, but your body does. And that may be part of the cause of your overall anxiety issues with anything covering your face.

Treat the OSA with a CPAP successfully, and your body may just learn to relax and not be so fearful of suffocation.

[palerider]

Everything you need to do for yourself you need double for your child.
She needs a healthy, strong parent. You can do it.

I think what you're saying is "in the event of an emergency, oxygen masks will drop from the ceiling, if you have a small child, or someone that needs your assistance, PUT YOUR MASK ON FIRST (so you don't pass out before you can help them)."

[robysue]

Thank you all so much! You are very right, if it was my daughter I would do anything I could to make it work for her. When it comes to me I rarely do what I need to. I never remember my meds or anything else I need to be doing.

I say this as a middle aged woman who has raised two kids: We women often "forget" to take care of ourselves when there are other people to take care of: We often think it's "selfish" to put our needs first, but it's a mistake to always put our needs last. Sometimes the best thing we can do for the people we love is to actually take care of ourselves and do what we need to do for ourselves. Taking care of our health needs is one of those things: When we don't take care of our own health, in the end we make it harder to take care of those whom we love.

It's mostly anything near my nose and mouth that bothers me. I feel like I can't breath if anything is there. My eyes and top of my head have never been a panic factor for me just mouth and nose.

I still wonder whether the stress your body endures during each apnea/hypopnea when you are asleep is contributing to the anxiety you get when anything comes close to your mouth or nose. In other words, I wonder if you have some kind of an unconscious (or maybe conscious) fear of suffocation that is grounded in the fact that you are indeed experiencing small, but real mini-suffocation episodes every night in your sleep. If that is the case, then starting CPAP may actually decrease your anxiety in the long term: Once your body realizes that it can go to sleep and get into REM at night without experiencing repeated mini-suffocation episodes, your anxiety of not being able to breathe if there's something around your mouth or nose might start to decrease.

I guess I just can't understand why it came back saying I needed it, when it just doesn't appear that way from research, as in not fitting in the standards.

I spent the first couple of years moaning and bitching to my husband about how unfair it was that I, a physically active, skinny small female had this disease that is so often associated with sedentary old fat men. I was lucky that my hubby was very understanding and patient with me. (Then again, the only reason I had a sleep test done was because he was tired of waking up to the sound of me snoring, or even worse, the sound of me NOT breathing for a long enough time to be alarming.)

But stereotypes are usually not true and even though OSA is statistically correlated with being overweight, there are a lot of OSA sufferers who are not overweight--I think it's usually cited as about 30% of OSA sufferers are of normal weight. And there's some real evidence that many overweight OSA sufferers may have gained the weight due to metabolic changes caused by their untreated OSA rather than the other way round. (Most OSA sufferers suffer from OSA for years before they're diagnosed as having OSA and receive a CPAP.) Men do out number women, but not by as much as most people think.

I tend to be a control freak, and really want to see my results, I think that would make me feel more in control.

Given that you are a bit of a control freak, you're going to need to insist on a full efficacy data machine. If you have a full efficacy data CPAP, then you will be in a position to take control of your therapy. You will be able to see whether the machine is doing its job when you use it. And if the data doesn't look good, you'll be able to post it here, get suggestions on what to do to fix the problems, and figure out how to make this crazy therapy work for you. With a full efficacy machine, you'll be able to approach CPAP as something that you can use to gain control over the OSA---you'll be able to be a full partner in your therapy. But if you get stuck with a machine that does not record full efficacy data, it's just going to add to the feeling that CPAP is something that is being done to you and that you have no control over what's happening to your own body with respect to the OSA.

When you meet with the doc you do need to insist on seeing the whole sleep study report. And request (insist) on getting a copy of the report for your own records. If you don't understand anything in the report and the doc didn't explain it clearly enough for you to understand, post your questions here and we'll help you get the knowledge you need about this condition so that you can feel like you're in control of taking care of yourself.

I had no problem sleeping this afternoon (I never do during the day, just can't sleep at night, I lay there for hours and I wake constantly) but, I do great all day!!

The "I just can't sleep at night" may be another OSA symptom that you've been attributing to "just insomnia" or "maybe narcolepsy" or "whatever the heck it is that's wrong with me". People with untreated OSA often have real problems getting to sleep at night---some of them have developed an unconscious fear of going to sleep because of the physical stress the repeated apneas and hyponeas cause the body.

Since you have a long term pattern of sleeping in the daytime and not at night, it's going to be important for you to remember that you'll need to use the CPAP for those daytime naps when you are consciously deciding to take a nap.

Again, thank you all! I'll update after I see if they will fax me the info on Monday before the study!

One word of advice: You've mentioned taking Valium earlier in this thread. You should let the doc who is ordering the sleep study know that you are very, very anxious about it. He should be able to arrange for you to be able to take your normal anti-anxiety medication as needed the night of the study. Sleep tests are hard enough to do in the first place. When you don't sleep much (or well) at night AND you're anxious about the idea of having a mask put on your face, it's even harder to try to get some sleep.

Some things that may help you on Monday night's study:

First: Let the tech know as soon as you check in that you have real anxiety problems with things around your nose. See if the tech will let you have several masks of different styles to play with and try on well before bedtime. Spend some time holding the masks in your hands and just trying to get used to the way they feel. Put each one up close to your nose and see if any of them are easier for you to tolerate near your nose. Even though the nasal pillows masks have more minimal headgear, they may be tougher for you since they actually touch your nostrils. But they don't cover your nose, and that may make them easier for you to bear. It's a very personal thing. Hubby (who is also a PAPer) can't stand nasal pillows because they're touching his nostrils, but he has no trouble with either a nasal mask or a full face mask because they don't touch his nostrils even though they do go over his nose. I can't stand to have the tip of my nose covered by the mask, but the nasal pillows touching my nostrils has never been much of an issue. If I can scratch my nose, I'm ok.

Next: Read everything they ask you to sign. Do NOT sign any paper that gives the sleep clinic or the doctor's office the authorization to fax a copy of your CPAP script to an equipment provider (DME) that you've never heard of or talked to. A lot of DMEs set newbies up with bottom of the barrel CPAP machines that record no efficacy data; these CPAPs are referred to as "bricks" around here. With your need to for a sense of control, you will NOT be happy with a brick.

You will want to shop around for a DME. Call your insurance company and try to get a list of approved, in-network DMEs who supply CPAP equipment. It's also useful to know how the insurance payments for the machine will work: It's often very different from the way prescription drugs are covered. Insist on either getting a script in your hands or tell the doc that you want to select the DME and that you will tell the doctor's office/sleep clinic where to send the script once you have found a DME that you want to work with.