Panic disorder

I have had my CPap for 2 weeks. I have been fighting a panic disorder for 43 years. This thing is horrible! I feel like I am being suffocated, the nose mask hurts my teeth, the few hours I do sleep, I wake up with my teeth clenched so tightly I'm afraid I'll break a crown and every muscle in my body hurts from being clenched all night. I am exhausted and when it starts getting dark I start getting panicky knowing I"m going to have to put that torture machine on. I don't think I could be much more anxious if I were going to be executed. I have tried tranquilizers and Ambien but nothing works. The headgear makes my hair sweat and pulls my hair and wakes me up every few minutes. I thought about getting the nasal pillow but when they tried that on me at the sleep lab I went into full freak out mode. Just looking at a picture of them upsets me. Has anyone got any ideas? I am about to the point where I am just going to take my chances. Before I got this thing I so looked forward to going to bed at night. Now, no.

I'm sorry you have this reaction.

When I reach for my mask I start to yawn. I associate cpap with sleep apparently because I am always asleep soon after turning it on. I panic at the thought of not having my cpap. I really hope you can find a solution because the difference between treated and non treated apnea is amazing. There are many knowledgeable people here so maybe someone can give advice.

I was feeling pretty good before I got this thing. Now, I'm tired all the time and so depressed I can barely cope. I was not expecting this. I thought I would have more energy and be out and about but I'm so tired all I do is sit around. I will keep trying since everyone says it takes a while to get used to - I don't see how. I will give it a month at least and if it isn't any better, go back to my doctor. I really miss being able to sleep.

Try wearing the mask with the machine on during the day while you are wide awake. Read, watch TV, listen to music or even while you are on the computer. The idea is to take your mind off the mask and machine. You may only be able to do this for a short while in the beginning, but try to increase the time each day(a couple of times a day is even better). Eventually you will become accustomed to the mask and machine.
Which mask do you have? Maybe we can help you tweak it for comfort.

Brenda

Welcome to the board, Tunifer. Sorry you're having trouble.

Please sign up for an ID and fill in your equipment on the profile. There's a link at the bottom of this post. There are techniques and tricks to adjust many masks if we know what equipment you have.

You might try the standard acclimatization techniques. Just try holding the mask in your hand. Then work your way up to holding it to your face without putting it on. Then wear it without it hooked up to the hose. (Don't hook it up to the hose unless the machine is on.) Then try wearing it hooked up to the machine during the day. Read or watch TV and see if you can wear it for a few hours.

If you have apnea, you may already be panicky about sleep. I know when I had my CPAP machine screwed up, I subconsciously dreaded going to sleep. Apnea causes oxygen deprivation and lots of stress. Both are bad for the brain.

Your insurance may have "compliance" requirements. If you don't use the CPAP for 4 hours a day for a certain number of days in the month, they may not be willing to pay. Just turning the machine on won't count, but if you use the CPAP while reading or watching TV, that does count towards the total. If you wear it in bed and can't sleep, that counts, too. The machine can't tell whether you're asleep or not.

Tunifer,

Welcome to the forum.

You have a panic disorder and the mask is triggering it to go into overtime. So that's really the first issue: How do you desensitize yourself to the mask so that it triggers less panic?

First: You say you've been fighting the panic disorder for over 40 years. Have you ever received any actual therapy or treatment for it? Or have you been dealing with it piecemeal on your own for all these years?

I ask because I think that if you are under treatment for the panic disorder, it's time to call the person treating you for it and have a long heart to heart talk about what to do concerning the CPAP mask and it's affect on you. Your current therapist/doctor is likely to be able to suggest some modification of your current therapy to help you get over this hump of CPAP-mask panic.

If you are NOT currently receiving any professional help for the panic disorder in general, then it's time to ask your PCP for a referral to someone who deals with panic disorders. My guess is that the referral would be to either a clinical psychologist or a psychiatrist. Before choosing between them, you need to do some thinking about what you want to get out of the therapy. A psychologist will focus treatment on cognititve behavior and teaching you how to control the panic (as well as you can) by focused relaxation, consciously calming your mind, and learning how to desensitize yourself to things that you know trigger the panic. A psychiatrist may (or may not) use many of those same techniques, but will also likely want to prescribe prescription anti-anxiety medication.

And note: Sedatives, sleeping pills, and tranquilizers are NOT the same as anti-anxiety medication.

Next, what can you do as "self-help" measures until you can start properly treating the panic disorder in general and its current serious implication in adjusting to CPAP?

Here are some things I think you should try:

1) Well far away from bedtime work on gradually desensitizing yourself to the mask. Baby steps may be needed. And how do you do this task of desensitizing yourself to the mask?

Start by dragging the equipment out to the living room and near a comfortable chair. Then hold the mask in your hand and put it up as close to your face as you feel comfortable doing. And hold the mask there for five minutes or as long as you feel comfortable. If you start to panic before the five minutes are up, place the mask back down on the machine and go do something else for a while. When you are calm enough to try again, come back and again try to hold the mask near your nose for five minutes. While you are holding the mask near your nose consciously remind yourself that the mask is there to help you sleep and to keep you healthy for a very long time to come. Remind yourself that the mask is not a torture device even though it is not particularly comfortable. And remind yourself of the consequences of not treating your apnea: Much higher risks of stroke, heart disease, diabetes, severe obesity for starters. Repeat this trying to hold the mask up towards your nose for five minutes several times during the day or early evening.

Once you can comfortably hold the mask up near your nose for five minutes without panicking, try putting it on and adjusting the straps. Again, use positive imagery to help you envision the mask helping you get into a deep, sound apnea-free sleep night after night once you learn how to use the mask. Take the mask off just as soon as you start to panic. Repeat this several times a day until you can comfortably tolerate putting the mask on without it triggering a panic and keep it on for five minutes or so without panicing.

Once you can wear the mask for five minutes without panicking, then it's time to attach the mask to the long hose attached to the machine. And turn the machine on. Again, leave the machine on just until you start to panic. It may be that at the start you'll turn the machine on and then off immediately. But you should be able to slowly work your way up to being able to tolerate having the machine on with the mask on for five minutes at a time several times a day without feeling an overwhelming sense of panic.

Once you can wear the mask with the machine blowing for five minutes or so, start to slowly increase the amount of time you wear the mask with the machine on and blowing. Try to read or watch tv with the mask on so that you have something else to think about. Work on slowly but steadily increasing the time you use the machine in the daytime when you wear the mask. Eventually, you should find that putting on the mask doesn't immediately trigger the sense of panic any more. And by that point, it should be easier to mask up each night at bedtime.


2) Get stuff ready WELL before bedtime. What I mean is that once you're done with the desensitization work for the day, take the equipment back into the bedroom and get it all set up for the night. Pre-fit the mask if possible. Make sure the humidifier tank is full. Put the mask and hose together and attach to the machine. Also wash your face well before bed. If you are using mask liners, nose sprays, lanolin, chapstick, or anything else to deal with the incredible amount of sensory overload coming from the machine, get all that stuff lined up and dealt with well before bed time. Heck, when I was a newbie, I even found I needed to brush my teeth well before bedtime. The idea is that you want to give yourself an hour or two of time before bed to focus on a pleasant enjoyable ways to relax and allow yourself to get sleepy. Once you are sleepy enough go back and try to mask up. If you start panicking, leave the bedroom and go back into another room to settle yourself down and relax and get sleepy again. You may need to do this several times at the beginning of the night, but remember it will get better as you become more used to the sensations.


3) Take some of the medicinal look of things out of the picture Hose snugglies and mask pads and liners do a great job of making the equipment feel less medicinal. Some of the hose snugglies come in wild colors or patterns. As silly as it sounds, naming your machine may help: It's much harder for me to be afraid or be mad at Kaa than it is to be afraid or mad at that damned machine.


4) Try aroma therapy (if you like it) or soothing music playing all night long to get your mind off the machine at night. I found that playing Gregorian chants on my iPod in an iHome all night allowed me to focus my attention on this ethereal music which helped get my mind off the machine every night. I also found I did have to play the music all night long (by looping the play list). Otherwise, I woke up the instant the iHome turned itself off and I was back at square one for the night.


5) Consider going back to the DME to either exchange the mask or have them show you how to refit the mask again. I add this to the list of things to try because you wrote:

Tunifer wrote:the nose mask hurts my teeth, .... The headgear makes my hair sweat and pulls my hair and wakes me up every few minutes.

These are signs that you may be adjusting the mask too tightly. You may also need to look at masks with different styles of head gear than the one you are currently wearing. I know you said that the very idea of nasal pillows sets you on edge, but the pillows are the masks with the least amount of headgear and the least contact with your face. If you'd like to try a nasal pillows mask because of the much more minimal headgear, but feel the pillows themselves will trigger the panic, you might ask the DME (or even somebody here) if they could give you a pair of pillows that you could try to use for desensitization work: As in try to hold the pillows to your nostrils for five minutes at a time until you get comfortable. It might be that if you worked on desensitizing yourself to the notion of the pillows resting against your nostrils, that when it's time to get a new mask you might be comfortable trying a pillows mask and that in turn might make the head gear more bearable.


6) Learn about your particular machine and whether it records efficacy data. If it records efficacy data, find the software and learn how to use it to track your progress. For me in the early tough going, checking my data every morning and finding out that the machine was doing its job was comforting in a weird, but important way: I knew that if I could somehow learn to tolerate the air blowing down my throat and tickling the back of my throat and (often) triggering problems with aerophagia and that if I could learn to fall asleep with the machine more easily and learn to trust the machine so that I could sleep more deeply, that I would eventually start to feel better. The data was a very powerful motivator for me to keep using the machine in spite of how much worse I was feeling than I had immediately prior to starting CPAP.

Finally you write:

Tunifer wrote:I will keep trying since everyone says it takes a while to get used to - I don't see how. I will give it a month at least and if it isn't any better, go back to my doctor. I really miss being able to sleep.

I could have written this exact same sentence a year ago. Heck I wrote an awful lot of entries that boiled down to this statement.

You'll stick with it if you tackle the problem of masking up one night at a time. Just focus on tonight: Tell yourself that you'll put the mask on one more time---just for tonight. If you tell yourself that every night, the nights start to add up. I still use this when I start to feel ovewhelmed by the long-term implications of an OSA diagnosis.

But do be aware that since you are having trouble with the panic attacks and the sensory overload, it may take you several months before you are really feeling fully adjusted. It is a process and when you've got lots of things you have to work on just to be able to tolerate the idea of sleeping with the hose, it takes even longer. For me it took a good six months before I started to notice some positive affects of xPAP. And it took about nine months before I was feeling better with CPAP than I'd felt pre-CPAP on at least 50% of the mornings. Keep up the work and you'll get there.

Robysue has given similar advice before, and it seems to work-- it's worth a try.

I want to second the tight mask angle. I had a panicky night just after cleaning my mask and putting it back together too tightly. I finally figured it out about 4 am. It was actually pushed into my nose and cutting off oxygen. Quite a relief when I loosened it. When I first started on cpap I tended to keep it too tight as well because I thought it would leak but they really can be worn very loosely and keep a seal.

No matter how bad it seems, you don't have to assume you have no chance to succeed. It is hard to give you specific advice without knowing anything about you, but we can share some experience and maybe that will get you started.

I should start by saying that after years of being on CPAP, I started getting panic attacks last year! No one is immune to that phenomenon and it can happen in connection with just about anything. At least with me, the thought that I have to try and fall sleep with it was the main issue, not as much the mask/machine (after all, I had been doing that for many years prior). So, the advice you already got to try and use the device without actually having to go asleep, might be the best. Try easing yourself into it (much before you actually need to fall asleep) and see at what point the panic sets on - that should help you isolate the reason and maybe find a way to fight it.

Of course, the best help with something psychological, such as panic, comes from psychotherapists, but you might not be able to resort to that (availability, financial limitations, etc.), so you might have to find a way to overcome it on your own. In my case, the reason was rooted in a technical problem - having upper airway obstructions, I wasn't getting sufficient flow to be able to feel like I can breathe easily. I eventually got that resolved and I don't get those panic attacks anymore. But I should note that, judging from the data from my machine, when I am about to fall asleep, I actually use a lot more air than after I am asleep, so it takes more to satisfy our mind than our body actually needs; keep that in mind.

Finally, remember that sometimes there are things in our lives that put undue stress on our psyche and often an unsuspecting aspect of our lives takes the actual hit - in your case, that could be CPAP use. So, do also take a look at what else is going on with your life and see if you can straighten all that, first.

Good luck and keep us posted on your progress.

McSleepy

Thank you all for your help and hints. First, yes, I have received treatment for panic disorder. I rarely have a problem any more and when I do it is related to something like being in a dentist chair where I feel trapped an unable to leave. Also hair salons. I am unable to test try the machine during the day because it is upstairs in my bedroom and because of some unrelated issues, once I come downstairs I rarely go back up until bedtime. Also, installing the machine was a problem due to the fact that I had to put the cord behind the bed and use an extension cord to be able to plug it in. One of the problems IS the odor of the mask - very medicinal. So I tried putting a small dab of cologne on the end of my nose. Big mistake. My insurance does, indeed, record the time I use the machine and I do know that it can tell if it is actually being used. What is a hose snugglie? I am not familiar with that. To me, the mask is extremely uncomfortable because I like to sleep almost face down on my pillow and there is just no way to do that. I will perservere but it is not going to be easy.

Hi - I'm going to send you a PM about tummy sleeping in a few minutes, so keep an eye out for it... J.

PS. I don't know if any of you are old enough to have ever had surgery using ether as an anesthetic but it is extremely traumatic. They physically hold you down while you scream and fight, and put a mask on your face that has the ether on it. It is a horrible smell and it makes you sick and dizzy before it finally puts you out. When I was a child, I had two separate surgeries where they did that: tonsils and later appendix. My adult mind tells me that at that time, that was all they had but the little girl inside of me still does not like anything on her face like that.

Tunifer wrote:I have had my CPap for 2 weeks. I have been fighting a panic disorder for 43 years. This thing is horrible! I feel like I am being suffocated, the nose mask hurts my teeth, the few hours I do sleep, I wake up with my teeth clenched so tightly I'm afraid I'll break a crown and every muscle in my body hurts from being clenched all night. I am exhausted and when it starts getting dark I start getting panicky knowing I"m going to have to put that torture machine on. I don't think I could be much more anxious if I were going to be executed. I have tried tranquilizers and Ambien but nothing works. The headgear makes my hair sweat and pulls my hair and wakes me up every few minutes. I thought about getting the nasal pillow but when they tried that on me at the sleep lab I went into full freak out mode. Just looking at a picture of them upsets me. Has anyone got any ideas? I am about to the point where I am just going to take my chances. Before I got this thing I so looked forward to going to bed at night. Now, no.

yes, I have an idea: go see a shrink, especially one who deals with getting on or off drugs. If you were near my place I could PM you a suggestion. As to having panic attacks I had them in the past causing me to take the longer route via Charleston bridge in Boston instead of Sumner Tunnel during the mid 1960s. But these days most panic attacks are easily fixable. Except probably Social Phobia which I suffer from (being a male and pissing next to someone in public).

I have seen a shrink and as I said earlier, I mostly have it under control. I am not addicted to drugs, I merely have tried a couple of things to see if they would help me to relax and be able to go to sleep while I am trying to adjust to wearing this mask.. The only phobia I have is spiders and I have no social problems, including the one you mention.

Tunifer wrote:Thank you all for your help and hints. First, yes, I have received treatment for panic disorder. I rarely have a problem any more and when I do it is related to something like being in a dentist chair where I feel trapped an unable to leave. Also hair salons.

Ahh.... Is the problem with the CPAP that you feel tethered by the hose? So you feel trapped and unable to leave?

I am unable to test try the machine during the day because it is upstairs in my bedroom and because of some unrelated issues, once I come downstairs I rarely go back up until bedtime. Also, installing the machine was a problem due to the fact that I had to put the cord behind the bed and use an extension cord to be able to plug it in.

Ok, so moving the machine is not that easy. But why don't you at least take the long hose off them machine and bring the mask downstairs with you? That way you could at least work on getting used to the idea of putting the mask on your face. Then take it back upstairs some time during the evening.

One of the problems IS the odor of the mask - very medicinal. So I tried putting a small dab of cologne on the end of my nose. Big mistake.

Yikes. I can see how the cologne on the end of the nose would be a mistake. But dealing with that medicinal smell is a real issue. That's actually part of why I found the nasal pillows easier than the nasal mask. With the pillows there's a whole lot LESS mask and it just smells a bit like silicon at the start. I find that if I soak it in a weak vinegar-water mix for a day or so after opening up a new set of pillows most of the odor goes away. I don't know if it would work for the nasal masks; all I know is that when the tech tried to put a nasal mask on me at my titration study, I started sneezing uncontrollably in part because of the smell.

How do you clean the mask? And how often do you clean it?

As for aroma therapy: The standard way to do it is to put a few drops of the scent on a cotton ball and place the cotton ball by the air intake vent. So if pleasant smells help relax you, you can try that for masking the odor of the mask.

My insurance does, indeed, record the time I use the machine and I do know that it can tell if it is actually being used.

The insurance company can indeed tell whether you are "using" the machine in the sense of whether you are breathing through the mask while the machine is on. But they really won't look very closely at whether those hours are at night or during the day---after all you are supposed to use it for naps too. Moreover, it is known that some folks do have to desensitize themselves to the whole idea of wearing the mask at night. So wearing it during the day is not a big issue as far as establishing compliance is concerned.

What is a hose snugglie? I am not familiar with that.

A hose snugglie (or hose cozy) is a fabric cover for the hose. They help insulate the hose and reduce rainout---i.e. condensation in the hose that has a nasty habit of trickling down onto your nose and waking you up. You can find out what they look like by going to Padacheek's website for her latest hose cozy or our host's site for a link to the much cheaper snuggle hose. You can also add a hose cover for the short hose as well so that none of that horrid "plastic medicinal tubing" touches you at night. If you poke around Padacheek's site and cpap.com's Comfort and Cleaning pages you'll also get links to mask liners and pads to make the headgear more tolerable.

To me, the mask is extremely uncomfortable because I like to sleep almost face down on my pillow and there is just no way to do that. I will perservere but it is not going to be easy.

Ah yes, the need to find a new sleeping position seems almost universal amongst new CPAPers who don't sleep on their back. I sympathize: Pre-CPAP I'd snuggle into my hubby's underarm. Yes, I mean his underarm. No place for a hose and a mask there. It took me a long time to figure out that with the hose I can have my head under the covers all night long without the need to wake up and "come up for air". Once I realized that, I was able to switch to snuggling into the small of my hubby's back (he's mainly a stomach sleeper).

In your case: You might want to try the following tricks to preserve as much of your preferred sleeping position as possible:

• Try sleeping with your head right at the edge of the pillow and let the mask drop over the edge (and if need be, rest lightly on the bed). You'll need to figure out if you want to route the hose out over the top of your head (a hose hanger helps) or just around the top of your head. However: If the hose is on the pillow with your head you might pick up more noise: The extra noise will be that conducted directly from the hose to the pillow and then to your skull and into your inner ear.
• A special CPAP pillow with cutouts for the mask might help---if they are not too thick for your neck.
• Consider getting a very smooshable pillow to replace your current one. Some people have had good luck with buckwheat pillows or Sobakawa cloud pillows. Here is a recent link to a thread discussing these these pillows.

Me? I use an ancient, worn out down pillow that's lost half its feathers through the years. It's held together by being enclosed in two "mite proof" zippered pillow cases, which is then placed inside a regular pillow case for sleeping purposes. The idea with these super smooshable pillows is that you can smoosh them around and make an indentation for the mask and hose where ever you want them to be. Just be sure to make sure the mask's vents aren't shoved right up against the pillow: Leave a pocket for them to vent into.