Panic at thought of CPAP.

[Snoopchic]

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?

[katiebandit417]

hi There
I know how you feel I have battling with all kinds of masks since 2005. They say the contour of my face is hard to fit, just tighten it up more when it leaks. HA Have you tried any nasal pillows? I am tryin a resperonics true blue but I can only stand it for an hour. I dont panic that must be bad. I just have a mental block and its a pain!! I was so happy to see your message but hated to see what you are going through. They say I have central sleep apnea that its due to a short signal in my brain to the breathing center . Its crazy Good luck If I can think of any pointers I will let you know Panic attacks are bad
Sincerely Karen

[Snoopchic]

Thank you for the kind thought. I can't stand anything touching my face. I did not sleep more than a few minutes at a time (with and hour or more in between) during the sleep study because they had this super gross hose with prongs touching my nose. It was all I could do to not throw up, it bothers me that much. I just have to know if there are any other options, because I'm sick of medicating all night to try to sleep, then medicating all day to try to wake up. So far nothing is working. I haven't even seen the CPAP thing. I'll have to deal with it on Monday when I go back, which means I have to try to make it through the weekend with all this panic. It's horrible. The only time I've ever had panic problems is the dentist, because they touch my face. I can't stand any thing near my face at all. I feel like I'm choking I called the office today and they said to just tell the people at the study. But, I feel like I'm trapped in some kinda of horrible prison cell, and no one will listen

[chunkyfrog]

Ask for an anti-anxiety drug. Cpap can save your life,
But not if you dwell on fear instead of logic.
You should fear dying of a stroke, not quickly, but slowly, over years of time, sapping the joy from your family.
Think of existing for years with no memory, unable to speak or control your bodily functions.
Do you wash your face, or wear makeup? Who scratches your nose when it itches? You.
You touch your own face many times a day.
Some masks are so small, they touch less area than a tissue when you blow your nose.

[robysue]

Snoopchic,

Try not to panic over this.

First, you need to get the full results of your sleep test. That means the whole report with the summary graphs, not just the final diagnosis. You need to know what "some evidence of apnea" means. In particular, you need to know what the diagnostic (untreated) AHI was. You also want to know what the minimum O2 saturation was. If the apnea is on the severe side, finding out those numbers is enough to make CPAP seem reasonable. If the apnea is very mild (an AHI between 5 and 10 with a min O2 well over 90%), the doctor may be able to make some suggestions for alternate treatment---i.e. you might be a good candidate for an oral appliance. But until you know all the results of the sleep test, you're working in the dark.

Next: You write

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.

Did the tech come in during the night and put the mask on your face? If so, then what you had is referred to as a split sleep study. The criteria for split sleep studies is pretty stringent: They're done when the OSA that is detected during the first half of the night is extremely severe---either in terms of overall AHI or in terms of scary-low O2 desats that are associated with respiratory events.

So again, you absolutely need to get a copy of your sleep study and find out how bad your apnea actually is.

If it is bad enough to warrant a split study, then you will need to accept the fact that the best way of treating the OSA is CPAP. And then you need to understand that you are not alone: A lot of newly diagnosed OSA sufferers panic at the thought of CPAP. The good news (such as it is) is that there are things that can be done to help you adjust to CPAP therapy.

First: It may be worth talking to your doctor about taking an anti-anxiety medication during the first few months of PAPing.

Second: It may be worth exploring alternate mask styles. What kind of mask was used in your sleep study? If it covered your nose and mouth (i.e. a "full face" mask), you might be better off trying a smaller nasal mask or a nasal pillows mask. If the mask was a nasal pillows mask that touches your nostrils, you might be better off with a nasal mask or a full face mask that does not directly touch your nostrils.

Third: If the problem is the feel of the plastic/silicone in the mask and the hose, you might try using mask liners so cloth is touching your face and a hose cozy so the hose is not touching your skin. The hose can also be hung overhead to minimize how much of it is touching your body.

Fourth: You may want to work with a cognitive behavior therapist who has experience working with people who have anxiety problems. There are strategies for helping your body to acclimate to doing something that triggers the panic when you know that you absolutely have to do the thing that triggers the panic.

Fifth: If/when you get the CPAP machine, you may need to take very small baby steps. One strategy that sometimes works for people in your situation is this:

• Step 1. During the daytime, hold the mask as close to your nose as possible for as long as possible without triggering too much anxiety. Try to increase the length of time each time you do this. Try to decrease the distance between the mask and the hose each time you do this.
• Step 2. Eventually you should be able to hold the mask next to your nose without triggering too much panic. At that point, try putting the mask on (and turning the machine on if you start to panic about not having enough air to breath). See if you can keep the mask on for a very short time without panicking. Once you can stand to have the mask on for a few minutes at a time, start working on increasing the time you keep the mask on. Again do this far away from bedtime.
• Step 3. Eventually you should get to the point where you can tolerate having the mask on your nose for 30 minutes or more. Once you can tolerate having the mask on for at least 30 minutes, then start trying to get to sleep with it on. If you can avoid panicking during the time it takes you to fall asleep, you'll probably find that you keep the mask on after you are asleep for a pretty long time. At that point, you can start working on learning how to keep the mask on all night long.

[robysue]

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.

There are a lot of us on the board who were atypical in terms of OSA symptoms.

Me? I'm a very small female: 5'1" and 110 lbs, so I'm not even close to being overweight. I had no daytime sleepiness before being diagnosed, but I did have some fatigue/pain issues. Lots of different types headaches that had been (correctly) diagnosed as migraines, tension headaches, tmj headaches and sinus headaches. I was freezing all the time, including at night. Never woke up at night gasping for breath. And woke up in the morning with some strange hand and foot pain that had been (incorrectly) diagnosed as mild arthritis.

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!!!!

Sounds like the doc who sent you for the sleep test was thinking that you might have narcolepsy.

But here's the thing about a narcolepsy diagnosis: They have to rule out other potential causes of excessive daytime sleepiness. Excessive daytime sleepiness is the primary symptom of both OSA and narcolepsy. And if the patient has OSA, the current medical thinking is that it's the OSA that's the primary cause if the excessive daytime sleepiness. And so they treat that first. Now it is possible to have both OSA and narcolepsy, but it's unusual to have both. If the OSA is properly controlled by CPAP but the narcolepsy symptoms persist in spite of CPAP therapy, then it may be appropriate to send the patient back for another lab study where the patient sleeps at night with the CPAP and then does the daytime test.

In short: Since there's evidence of OSA on the night time part of your sleep test, the daytime part of the sleep test would not have been valid in terms of determining whether you have narcolepsy or not. Hence there was no reason to do it.

(I sleep fine during the day and actually dream during 15 min naps )

This is a common symptom of both OSA and narcolepsy.

The differential diagnosis between the two conditions is to look at the night time sleep breathing: If you're not sleeping at night because your airway is constantly collapsing (i.e. you have OSA), then it's quite likely that the OSA will cause you to wind up taking naps during the daytime. If the OSA is severe enough to prevent you from getting into REM and staying in REM at night, it's quite likely that you'll wind up going into REM pretty quickly during those daytime naps. But if your night time sleep is not being constantly interrupted by respiratory events, then the cause of the daytime naps is more likely to be narcolepsy.

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 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.

If your anxiety is this severe, then you need to talk to a doctor about getting the anxiety under control. You may want to look into cognitive behavior therapy as well as continuing to take the Valium. You may also want to ask about whether Valium is the only antianxiety drug that is appropriate for you.

think I would rather not breath then have these panic attacks.

It is possible that the obstructive apneas you are suffering at night is making your panic attacks worse. There are people here who have posted that getting their OSA under control has lead to a huge decrease in the panic attacks.

I have no history of panic attacks or depression,

Then why was the Valium prescribed??

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?

A lot of us have been there and done that. I spent the first 2 or 3 years of PAP therapy beating myself up for "not being a full human being" because I had OSA. I actually went to therapy to address this issue. It helped me a lot at the time.

Here's the thing you need to keep in mind: Would you feel like you were a failure as a human being if you'd just been diagnosed with diabetes? What if you'd just been diagnosed with high blood pressure? What if you'd just been diagnosed with asthma?

OSA is no different than any other chronic condition: We don't ask to be sick, but we are. Unlike many other chronic conditions, there is no drug to take that "fixes" or "manages" the disease. But CPAP does "manage" the disease. Unlike drugs, CPAP is just a bit of extra air being blown down the airway at night. So once we conquer the negative emotions tied to the necessity of sleeping with a six foot hose attached to our nose, there are no long term (or short term) drug-related side affects to deal with.

Finally, would you really have rather been diagnosed with narcolepsy than OSA? The drugs used to treat narcolepsy are pretty serious drugs in terms of side affects, some of them are very expensive, and some of them have very stringent dosing schedules. One of them (xyrem) has a dosing schedule that requires you to set an alarm and take a dose in the middle of the night, every night.

[jonny515]

Not everyone has the full range of symptoms. I am also not at all overweight (I think at this point that this is somewhat of a myth, or at least that there are still thin people that have sleep apnea). I am not tired during the day (unless I don't sleep), do not have headaches, etc.etc. I have not read that not having day time symptoms makes you less prone to heart disease or strokes (etc), though. I've heard some people here say we are the "lucky", though perhaps it is a bit harder to take it seriously or be as motivated.

I think the fear of having something on your face, is perhaps something like a fear of being smothered or something. Most fears are treated now thru desensitization where you handle it by gradually increasing the amount of stimuli. I don't know whether you might need a professional to deal with this. However the discussions on how to do this are essentially correct.

This guy shows how to do this, but he may be going to fast for you. He uses a full face mask. If you don't need one no reason to go that way, they aren't "better". I think you might look into a minimalist design-- FX Swift Nano, Airfit 10, Dreamwear (though there is more contact with the face with this one it is very lightweight and doesn't attach on the nasal piece).
https://www.youtube.com/watch?v=CtmCJxMvsuM

Also ramp up can be hard to take. I actually like the pressure the machine is set at over ramp up.

[Snoopchic]

Hopefully I can answer everyone. I haven't ever been to a forum, and have no idea how to do that copy stuff :/ anyway. I am prescribed Valium because of going to the densit, I thought I had said that? Maybe I missed it. Because they touch my face I have full on panic attacks. They did not come in during the night to do anything with a mask. During the study I had all the wires and some super nasty plastic hose thing with horrid prongs that was touching my nose to see if my breathing stopped. It was why I couldn't sleep at all. My doctor did think I had narcolepsy. The problem is I won't be able to use the CPAP to rule anything out. I called them and the office just said to tell the study place when I go back in on Monday, but I won't see the doctor until Tuesday. I have no desire to go in until after I see my results. I'm super frustrated I can't see my results first

[Snoopychic]

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

[Boyce]

the thought of a CPAP is horrible

For me, the thought of no CPAP is horrible.

Keep working with your doctors and tell them everything you have said here. There are some solutions besides CPAP.

[robysue]

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.

[Snoopchic]

I'm glad that people like their machine and it's not horrible for them. But it can't get me past the horror. I have screen shotted everything on so many posts to try to explain the terror to my doctor. I just don't know how get it through to him before he makes me do the "fitting" study. I can't imagine paying all that money to be tortured, at least not without more info. But,he wants my appointment AFTER the fitting study. I don't think I can do that. I want proof that the numbers are high enough to be worth it from the anxiety. I don't trust anything they say since I was sick and sleeping on my back (which is always worse) I never sleep that way. Always on my side, and I am normally not sick. It's just too much.

[Snoopchic]

I have had panic at things near my face since I was a very small child. I haven't ever been able to breath when changing my shirt or anything (I have to hold my breath to change clothes) It doesn't have anything to do with apnea :/ I have had sleep studies done before, and never had any apnea issues. I grit my teeth is why I had the mouth guard. I had slight tmj, but it was treated by my chiropractor. It's actually all gone now

[chunkyfrog]

The TMJ may be a contraindication to some oral devices,
so it is even more important you be ready to push for an interface you can tolerate.

[Diamondminek]

do you have any experience of meditation or mindfulness, or even relaxation exercsies? id try to keep working on that until you see your dr again. like literally, do some kind of exercise every time you do start to feel the panic or anxiety building, ro find your self in a rabbit warren of negative thinking.
you dont have the information to think about diagnoses or life as it is or how your body is working... the extra anxiety worrying about it is causing wont help which is why id try the exercsies above to help you stay in the moment, not worrying about what is or is not to come.
try to avoid the nagative self talk 'i wont be able to use CPAP' 'im failing as a human' - think about if you would talk to a friend the way you talk to your self.
if you are diagnosed with sleep apnoea, and do need a cpap, it is a big adjustment for some people, it can change your view of your self - but at the end of the day it saves you from serious disability and death, so you will be supported by the right dr and the board to overcome any obstacles - there are plenty of success stories on the board relating to practical chalenges and psychological ones.
could well be your anxiety over things touching your face comes from having apnoeas - which is a feeling of suffocating or choking or just a sense of danger after all. if its not apnoea related, then the suggestion of therapy is a good one - even if you dont need cpap, you want to take this anxiety out of your life.