Newbie with Phobia - HELP!

BiggieB · Post by **BiggieB** » Fri Mar 03, 2006 12:34 pm

I received my CPAP Machine last Friday the 24th (RESMED S8 Escape CPAP, Humidaire H3i Heated Humidifier). I have been using a full face mask because I am a mouth breather. Since Friday the average sleep time I have been able to stand with the mask has been 3-5 hrs. Once I wake up I can't start the treatment again due to my growing Phobia to the machine. The last 3 nights I have not been able to get to sleep with the mask at all and had to give up and sleep without it knowing I'm having about 90 episodes an hour and my blood/oxygen level goes down to 60.

I know it's between life or death that I have to do this and I'm having a real hard time dealing with that fact I may have to wear this for the rest of my life. I will be joining a support group at my Sleep Center in Dover, NJ to help with the Phobia.

Is anyone else going through this? Any suggestions? My biggest fear in life in NOT being able to breathe - and that’s exactly what I feel like when I put the mask on.

Need help before it's too late.

_________________

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NightHawkeye · Post by **NightHawkeye** » Fri Mar 03, 2006 12:52 pm

I started out with a full face mask for the same reasons as you, but switched to a nasal mask and now that is my preference.

I perform nightly nasal irrigations to get my sinuses open at bedtime (using a Grossan irrigator). I use the Swift nasal pillows interface which is much less intrusive than a full face mask, and also much more comfortable. Also, it was apparent my first full night with the Swift that the air being blown directly up my nostrils kept my sinuses absolutely clear all night long. Amazing, really! My other two masks hadn't had that effect at all. (Tonight I'm even gonna skip the nasal irrigation to see if the Swift alone can keep my sinuses open.)

Just some thoughts for you to think about. The trick with XPAP is to find what works for you. Most folks seem to change masks before settling on one that really works for them.

Regards,
Bill

Linda3032 · Post by **Linda3032** » Fri Mar 03, 2006 12:55 pm

My suggestion would be to contact your doctor. Perhaps he might prescribe some mild sleeping pills to use until you are more comfortable with your therapy.

Also, full face masks can be claustrophobic. Even though you are a mouth breather, you might be able to use the nasal pillows. Many people have learned to nose breathe, or to tape their mouths. The nasal pillows are much less invasive and more comfortable. It never hurts to ask for the pillows and try them.

Good Luck.

Snoredog · Post by **Snoredog** » Fri Mar 03, 2006 12:55 pm

Forget about the ability of not being able to breathe, that is a total myth. Should the power go off during the night, your natural reaction will be to breathe from your mouth or remove anything from your face even if asleep. If your using a Full Face mask, they are are equipped with a anti-asphyxia valve.

If you want to get used to wearing the mask quicker, try wearing the mask without the hose and the machine for 10-15 minutes while your awake like watching tv, reading a book etc.

If you can only use the mask/machine for 1hr a night for the first week that is fine, but try and use it every night if you can work up to longer use if you can. If it comes to 2-3AM and your not sleeping then take the mask off and sleep on your side or stomach. Try a Tylenol or ExcedrinPM if needed the first few nights.

Keep your nasal passages clear (suggest a saline only spray like Simply Saline etc.).

Allow yourself a good 4-6 weeks to get used to wearing the mask/machine.

hecate · Post by **hecate** » Fri Mar 03, 2006 1:32 pm

I too was a mouth breather, but hated the full face mask. On the suggestion of others here I started using a nasal irrigration device before bed and am training myself to breath through my nose. I'm managing quite well and I'm only in my second week of treatment.

The first couple of night I did use sleeping pills (OTC) to get used to sleeping hooked up. I also spent the evenings watching TV hooked up to get familiarized with the feeling. It does get easier.

Liz

snorzalot · Post by **snorzalot** » Fri Mar 03, 2006 2:03 pm

The advice that helped me most was simple yet POWERFUL for overcoming my anxiety or "rage against the machine."

This sounds too good to be true but give it a try.

1. Go to bed at 10 PM
2. Turn on the lights in the bedroom
3. Turn on the TV
4. Turn on your machine and hit the ramp feature to reduce your pressure setting
5. Hold your mask in your hand (straps lying over your wrist but NOT on your head)
6. Just hold the mask gentle up to your face (no seal) and breath in the air
7. Watch some tv
8. Place the mask against your face and make a seal
9. Breath natural ... watch TV
10. Take the mask away anytime you feel like it and add it back again as often as you like
11. Around 30 minutes into this holding the mask against your face
12. Get a significant other, wife/husband/child/friend/etc. to help you strap the gear on your face
13. Don't worry the lights are on and the TV is still going
14. Wear the mask, breath normal, watch TV
15. Relax

You'll find that it's now 10:30 or 10:45 PM, you're much more comfortable with your mask, the ramp feature has nearly or is all the way built up to its target range and hey you are still alive, and contrary to what you thought initially, you're doing ok.

Turn off the TV, have someone flip on a night light so the room isn't completely darkened and go to sleep.

For many, overcoming the sense of that feeling of claustrophobia takes awhile. You are already wearing your equipment 3-5 hours per night. That's nothing to scoff at! Most insurance companies ask for 4 to 4.5 hours per night in order to pay for the equipment so you are already close.

In only 14 days (this round) i'm up to 7 hours of compliance a night and as soon as I change my lifestyle a little more I plan to work in 8 hours of sleep a night and maybe 9.

The rule here is that you don't just turn on your equipment at a perceived bedtime, hook it up and turn out the lights to go to sleep. It takes "getting used to at first." I can now without a ramp and a 16 cm H2O pressure turn off the lights, hook it all up in the dark, go to bed in 5 minutes and wake up once if at all most nights.

A month ago, I woke up after starring at the clock for nearly one full hour making myself wear the equipment fully awake to just be compliant and then tearing it off and getting out of bed and sitting in a chair literally near tears because I wanted to be complaint but I could not. Don't give up friend, there's hope and when you get used to the equipment, loose the anxiety and find a happy medium with your pressure and mask leaks, keep the right attitude (I will win), you WILL!

Good luck!

Jim Eads · Post by **Jim Eads** » Fri Mar 03, 2006 3:15 pm

Biggie,

Since you've worn the mask 3-5 hours already, you've actually gotten over the hard part.

Before you go to bed, relax for awhile to get your reparation slowed down. Put on the mask and turn on the machine but just sit there and relax with the lights on and the TV if you like. If you're using ramp, make sure it's not set too low or it will feel like you're not getting enough air. (You are but it may not feel like it.)

The mask is kind of like a toothache. They are always worse in the middle of the night in the dark.

If you wake up and need to take off the mask, go ahead but don't go back to sleep. Sit and relax until your respiration slows down again and start over. After awhile your subconscience will get tired of this routine and you'll surprise yourself and sleep through.

Don't give up. Stop, relax and start over.

Jim

Guest · Post by **Guest** » Sun Mar 05, 2006 10:11 am

Jim Eads wrote:Biggie,

If you're using ramp, make sure it's not set too low or it will feel like you're not getting enough air. (You are but it may not feel like it.)

Thanks for all of your help and suggestions! It’s nice to know I am NOT alone with this problem and that there are people I can talk to about this.

Yesterday afternoon I decided I needed a nap before the big 30th birthday party they were throwing for a friend of mine. All morning, after I woke from a night of no CPAP, I could not stay awake and just keep crashing watching TV. I could not see me making it through the day so I decided to give it another try and apply some of the suggestion from this thread. The first one I tried was to reduce my Ramp from 30 mins to 15 mins. I noticed immediately when I put the mask on it was much easier to breathe and was not scared. Within a few minutes, I fell asleep and what seemed to be 30 secs later was actually 3 hrs later when my wife woke me to get ready for the party. IT WORKED!!

I went all day at the party without being tired much and when I got home and went to sleep at 11:00pm the same setting helped again and I slept for 6 hrs straight with the mask before I woke up (my 3 year old boy was crying and needed help). After I put my boy back down I attempted to go BACK to sleep with the CPAP which, for a week I was not able to do, I found myself easily falling back to sleep for an additional 3 hrs!!!

Ok… so how to I fell right now?!?!?!?!?! I am ready to run a marathon!!!

THANKS everyone. I will be trying everyone’s suggestions so that it’s second nature to use the CPAP. I have 2 twin boys 3 years old – I wanna live to see them grow up and make me a great, great Grandfather!!

BiggieB · Post by **BiggieB** » Sun Mar 05, 2006 10:13 am

opps.... posted as guest. The post above is actually from me!.(newbie)

ozij · Post by **ozij** » Sun Mar 05, 2006 11:23 am

Hey, Biggieb,
That is such wonderful news - and it's so nice of you to report it in such detail.
Keep it up !

O.

Mask