CPAP Anxiety clausterophobia etc

[sleepcrapnea]

Hi all,

I tried using a CPAP for the first time last night and it was really quite awful.

I did not actually manage to get to sleep at all - which is normally not the problem normally my problem is waking up. So thus far, the CPAP has made my sleep worse.

I actually have clausterophobia and I was experiencing this on a few occassions throughout the night. I had to take the mask off momentarily to calm down. Its only a nose mask rather than one for the mouth too but it still gives me anxiety.

Also I found the sensation of air pushing in really awkward and uncomfortable so this stopped me getting to sleep too.

And it felt awful when you open your mouth at all like as though you are suffocating.

Im not completely sure that sleep apnea is whats causing my sleeo loss either. As the sleep loss seems mainly due to waking up casued by dry mouth and sore throat and blocked nose and mouth breathing. My nasal passages swell at night. But Im avoiding turbinates reduction surgery with every avenue first due to possibility of Empty Nose Syndrome.

Im now more tired that ever and am dreading going to bed tonight because of the CPAP.

Anyone have any tips? Also im keen to hear from other people on your experience. Has the CPAP transformed your life and allowed you to sleep again> How was your first week?

Grateful for any help

Many thanks
Rhys

[chunkyfrog]

First night is always the worst.
Just keep getting back on the horse, and he will get to be your friend.
Three months from now, you will wonder how you ever slept without it.
I mask up, the machine starts, and I set to "sawing logs".

[sleepcrapnea]

@chunkyfrog - thanks very much for your feedback.

Im pleased to hear its hard at first and gets really good.

Im half tempted to forget it tonight and take a sleeping pill I dont think I can cope with two nights zero sleep. I might do that and try again tomorrow night. Sleeping pills are the only thing that works for me.

[esel]

Welcome to this family. (where is Zonker ? our welcome Master ...

Starts are difficult to terrible making things first worse than they already are.

The journey is not easy with claustrophobia. But you will succeed. One good trick is to put on the whole thing and go watch TV. Get used to this horrible alien thing now stuck on your face. You are the little prince the alien horror is the fox. (Le petit Prince de St Exupery)

[jimbud]

Anyone have any tips? Also im keen to hear from other people on your experience. Has the CPAP transformed your life and allowed you to sleep again> How was your first week?

Many examples:

viewtopic/t14494/Newbie-would-like-to-h ... lease.html

Start at the end, start at the start or start in the middle and go both ways. It's all good.

JPB

[zonker]

Welcome to this family. (where is Zonker ? our welcome Master ...

meerkat.gif

[zonker]

Hi all,

I tried using a CPAP for the first time last night and it was really quite awful.

and welcome to the zoo! you aren't alone. many of us have gone through a bad start on the machines. this is pretty much why this forum exists. not too many long term members will say they did well right off. in fact, i can only think of forum friend palerider who says he took to it right away.

for stories of success, see this link from this very forum-

viewtopic/t14494/Newbie-would-like-to-h ... lease.html

now, in order to give you help as well as encouragement, we'll need info from you. please see the links at the bottom of my reply for some reading up you'll want to do.

we don't all use the same machine. or the same mask. so we need to know that first off. it will color what advice you're given. if you could go to the control panel and fill in your equipment, it will show up at the bottom of each post you make.

do you know what your settings are? it's possible they aren't set properly, even if it WAS a doctor that prescribed it.

and you'll want to grab the free software, oscar, which will help you get data that can be used to tweak your settings.

whoo! that's a lot. but do come back and tell us what you can and we'll get you going.

good luck. you can DO this!

[roadcycler]

Something that helped me during the first couple of weeks was to put the mask on without connecting it to the machine and go watch a good movie and breath through your nose as you do not have a full face mask. This helped me get use to having this alien thing on my face.

[khauser]

Something that helped me during the first couple of weeks was to put the mask on without connecting it to the machine and go watch a good movie and breath through your nose as you do not have a full face mask. This helped me get use to having this alien thing on my face.

This is excellent advice, and something I have done with each new mask I've tried.

You can also add using the machine while awake, once you get used to the mask.

But I am hopeful you'll adjust faster. Choosing a nasal mask was wise (compared to a full face mask), but I suspect you should try nasal pillows.

Two in particular:

• https://www.cpap.com/productpage/bleep- ... -cpap-mask
• https://www.cpap.com/productpage/tap-pa ... k-improved

Two benefits:
1) They are rather minimal, and there's nothing you can see that might make you feel trapped.
2) There's no pressure on the outside of the nose, which in my case made it feel like I had some trouble breathing.

Hope this helps!

[sleepcrapnea]

Thanks very much for the feedback and advice.

I have set out some stats now on my equipment.

The advice about just wearing the mask without the attachment to the machine was a good one. I spent a couple of hours last night just going about my business with the mask on and I think it psychologically normalised it for me.

The second night I was too sleep deprived and stressed to use it again. So last night I tried the cpap again for the second time. Great news is that I am 98% over my clausterophobia.

However, it is still really hard going. I didnt get all the anxiety this time but just the discomfort. I was wide awake for the night The difference is that I did fall asleep for 2 to 3 brief periods, but probably only 20 minutes each time. Im not used to sleeping this way with a machine and mask pushing air in. And also having to keep my mouth shut. Which is a huge retraining. Mouth breathing has been a big part of the problem. Due to nasal congestion when sleeping. For some reason I dont get nasal congestion while wearing the mask This is a good sign. It might be the air pressure pushhing the nasal cavities open. Or it could also be that I havent been sleeping so the nasal cavities havent been collapsing.

I hope that I can get used to wearing the mask and being able to get to sleep with it on. The primary problem is actually getting to sleep. This is NEVER a problem with me normally. The problem is waking up. So my hope is once I can get into a proper sleep then Iwont wake up. God I hope thhis works.

I will need to alternate night on CPAP night off as I cant cope with this much sleep loss in succession.

The clinic also made some adjustments which made it more comfortable last night. They turned on some thing which allows you to breathe out without getting resistance. Which is quite clever. Much easier and less anxiety inducing when the air doesnt push against you breathing out and making you feel like you are suffocating. Also they told me how to turn the humidifier on.

[khauser]

Keep working on it.

That exact experience you describe is why I don't use nasal masks and require some form of nasal pillow or the new Bleep mask (best, IMO).

[sleepcrapnea]

@khauser - maybe I could get the nasal pillows. Are they expensive? Are they comfortable to wear? Would definitely feel less clausterophobic

[khauser]

@khauser - maybe I could get the nasal pillows. Are they expensive? Are they comfortable to wear? Would definitely feel less clausterophobic

I don't know where you are and can't really decide what is expensive for you.

Are you working with a local DME? I will tell you up front that many *local* DMEs have little interest in these products. They probably don't make enough money.

If you click on the links provided in my first reply to you they'll take you to those products on CPAP.COM, where you can see their prices. They do not file with insurance, though you can. I think that since you have a mask and it isn't 3 months old, you could have trouble getting insurance to pay for another right away. If the DME could provide one of those 2 masks they might be able to work around the insurance issue, but I think that's kind of at their expense.

And all of this assumes you're in the US.

[sleepcrapnea]

Ok tried my third night on the CPAP.

THere has been a success of sorts but a very minor one. So my first success was getting over clausterophobia. Yay.

The second successs was actually getting to sleep. Last night that was achieved. Yay. But it was a very tiny triumph. I recorded my sleep so I could see what was going on. I fell asleep twice but Im sure it was probably for about only ten minutes each time. Then I woke up both times. Ultimately I took the mask off the second time.

What woke me up was breathing through my mouth. Its such an awful anxiety provoking feeling when you open your mouth with a CPAP on. LIke you are suffocating. So both times I did that I woke up. As I said it sounds like it didnt take long for me to do that. Only about ten minutes.

Its going to be really hard for me to avoid opening my mouth. Normally I am a huge mouth breather which is the problem. This is because I have enlarged nasal turbinates in my nose when tend to come out at night. So my mouth opens so that i can breathe. But, funnily enough, I am pretty sure that when I wear the CPAP my turbinates do not swell like normal. So its actually easier to breathe through my nose. Which is great. It must be the air pressure encouraging them to stay open. But i think Im so trained to mouth breathe that I will.

Im not sure how to deal with this. I dont know if I could tape my mouth shut as with that plus hte CPAP my closterophobia will go through the roof and might keep me awake anyway. I guess another option might be a full face mask but that might do the same. Ugh this sucks.

Im doing a CPAP trial so if I send the CPAP back withing 30 days I only pay $250. Rather than $1,800. Its so much money and so far I am feeling like I will send it back. I dont want to spend so much money for something that doesnt help me and adds no enjoyment to my life. I wish the trial was longer. I dont feel I will get to the bottom of it by then.

Im thinking that my only option might be to address the root cause and get my nasal turbinates surgically reduced. This freaks me out due to Empty Nose Syndrome risk. But I might have no option and cant go on like this.

[Julie]

The feature allowing you to exhale more easily is EPR - exhale pressure relief - and you can set it to 1 (lowest), 2 or 3 and try them out. I don't know on your machine though what the feature is actually called (read the manual) because EPR is a Resmed thing.