Claustrophobic Having a Hard Time

Hey all

I'm sorry if this seems like a big moan but I am having real problems with my CPAP and my mask along with my diagnosis of Sleep Apnea.

I am a 28 year old male, with two kids, and a wife. I was diagnosed with severe sleep apnea, stopping breathing almost 50 times an hour, I feel so bad every day so tired, falling asleep in traffic, and feeling like Ozzy Osborn.

I was given the sleep apnea full face mask as I am a mouth breather, I have been sleeping with the mask a week now, and been ripping it off subconsciously 2 hours into my sleep almost every night, I hate the way it looks to my wife, I hate the way it feels (like a face hugger) and I really dislike the thought of it, I am very claustrophobic so wearing it gives me crazy anxiety and makes it very upsetting and hard for me to sleep with it, the one night I did sleep through the night with it, I did feel amazing the next day... But alas it still did not make the next nights any easier.

I don't know what to do, I know I should not stop using it, but I hate it so much, l hate sleeping now, I hate going to bed, I hate that pipe coming out and the sounds it makes... I feel like a lung cancer survivor and look like one.....



How did you guys manage to sleep with it every night, I need some advice and help, this machine has put me in a very dark place, and the thought that this is for life scares me.


Sorry for the long moan... Thanks for reading.

Hi, what model of which machine do you have please? And what mask? At what pressure settings?

I have a Dreamstation, Fisher & Paykel Simplus Full Face , I think its a bad fit, as it's only a Medium and feels small but i dunno, i can put the pressure to 4 for 30 mins then it goes up to 8.4 normally, but has been high as 16 - it sits around 12.5

You apparently are using the ramp feature at 30 mins, but do you realize you're asking it to take all that time to reach the lowest possible (machine default) setting there is? And of course not being treated much all that time. I strongly suggest you raise your low pressure to e.g. 7 and stop using the ramp altogether. Prescribed settings for the machine are not the same as settings for the ramp, so it's important to understand the difference as you don't 'need' the ramp, or certainly would only do so if your settings were high (e.g. above 10) and you couldn't take the initial blast of air as some can't, but even then a much shorter 'climb' time vs 30 mins would be better. Most of us don't use the ramp at all beyond a week or so once we start Cpap and deal with prescription settings as they are programmed until we feel the need to tweak them (as I suggested you do), or until software like (free) Sleepyhead shows us that it's a good idea. If you'd like more info on SH please say so.

As far as the mask goes, you should push to try others (there are many) and always try on FF ones while lying down because your face changes a lot vs what it is when sitting up.

Julie wrote:You apparently are using the ramp feature at 30 mins, but do you realize you're asking it to take all that time to reach the lowest possible (machine default) setting there is? And of course not being treated much all that time. I strongly suggest you raise your low pressure to e.g. 7 and stop using the ramp altogether. Prescribed settings for the machine are not the same as settings for the ramp, so it's important to understand the difference as you don't 'need' the ramp, or certainly would only do so if your settings were high (e.g. above 10) and you couldn't take the initial blast of air as some can't, but even then a much shorter 'climb' time vs 30 mins would be better. Most of us don't use the ramp at all beyond a week or so once we start Cpap and deal with prescription settings as they are programmed until we feel the need to tweak them (as I suggested you do), or until software like (free) Sleepyhead shows us that it's a good idea. If you'd like more info on SH please say so.

As far as the mask goes, you should push to try others (there are many) and always try on FF ones while lying down because your face changes a lot vs what it is when sitting up.

Some good advice here. Your best bet is to download Sleepyhead and use it to get the data from your machine. Then post here so you can get some more detailed advice on recommended settings. Have you tried using a nasal pillows mask like the Resmed Airfit P10 (my favorite) with a chin strap? You may find it easier to tolerate as it is much less obtrusive and lighter on the face. Besides that, there is an adjustment period you need to push through. The advice here to remove your ramp setting and to adjust your base pressure higher is a good one.

Actually with Respironics machines the use of the ramp doesn't necessarily mean that apnea events won't get treated.
It depends on the mode and/or which choice of ramp.
In Auto mode...the machine will respond even during ramp if the airway tries to close.
And even in CPAP mode if Smart Ramp is chosen it will suspend ramp and go about increasing the pressure to try to prevent the airway from closing...within whatever setting parameters have been set up.

Exactly which model DreamStation do you have? If unsure what is the model number....look for a sticker that starts with DSX and 3 digits.

I was thinking more along the lines of comfort rather than treatment efficacy. I wonder what his flex settings are at too? Anyhow, if he posts the Sleepyhead date it will answer a lot of questions.

KarlDD wrote:I don't know what to do, I know I should not stop using it, but I hate it so much, l hate sleeping now, I hate going to bed, I hate that pipe coming out and the sounds it makes...

attitude does play a big part in having success.

KarlDD wrote:I feel like a lung cancer survivor and look like one.....

my grandfather 'survived' lung cancer for a couple years... gasping for breath after they'd taken one lung...

I really don't think you feel, or look like a lung cancer survivor.

Certainly, claustrophobia will be worse with a mask that fits poorly, or with the wrong pressure set on the machine.

You may also want to try lessening the ramp-up time, raising the initial ramp pressure, or even disabling the ramp altogether. See if that helps.

BTW, you didn't say which DreamStation model you have (there are at least four).

About that ramp, even if it does attempt to address impending events, I believe the same principle applies as with the treatment pressures - you don't want it to start so low as to take too long to get to the needed pressure. It's that old ounce of prevention thing. Your description of feeling claustrophic makes me wonder if inadequate pressure is causing that sensation. The brain can have a hard time relaxing and sleeping if it feels threatened by suffocation, which too low of a pressure can cause. Why not err on the side of caution and increase the starting point for both ramp and treatment pressure as long as the increase has no adverse effects? Hopefully you'll pursue monitoring your data so you can better know you are making the right choices regarding your settings.

About the full face mask, do you mouth breath even when you are awake? If your nasal airway is obstructed and you mouth breathe out of necessity, then the full face mask will be necessary unless something changes. But if you can nose breathe when awake, there's a good chance over time you will be able to train yourself to stop mouth breathing. You may not ALWAYS need a full face mask. Even if you do, some are less cumbersome than others.

It's not unusual to go through some mental changes when dealing with the idea of CPAP treatment. Sleep life as we knew it is gone, and that can bring on a grieving process just like with any other loss. I hope you'll reach a point of being able to focus more on the positives the treatment can bring into your life. The well treated you will likely be much more enjoyable company and your wife could even come to be very grateful for the mask on your face that gives her hubby a renewed zest for life. Be patient with yourself in regards to how you feel about this. We all come to grips in our own time. But be very clear that how you feel about having to use this should be separated from your commitment to its use. Don't allow your feelings to taint the fact that you need this. Many of us did not have an easy time early on. I've been known to throw the mask against the wall in the middle of the night. But working through all that is one of the best things I've ever done for myself. You are so new in this process. Please know that a rocky start does not mean a rocky forever.

To start off thank you all for your positive words, This all made me a little emotional, i find it hard to talk to anyone who is not using the mask as they don't really understand.

Yes the adjustment phase is very hard, i have been having nightmares regarding suffocation.

My model is the dreamstation-auto-cpap-machine-with-heated-humidifier-by-respironics

I am not sure how i can get use to this but i will try all your advice, it normally takes at the moment up too an hour to go to sleep so the machine ramps up before i actually doze off, but i will start with a higher setting a little and see how i feel (nothing to lose right!) and everything to gain.

Its just such an unnatural feeling, i dunno, i thought i would have no problem adjusting, but its making me very upset... (i have to use the full face mask) as i am a full on mouth breather, and the dr said if i get the surgery 9/10 the scar tissue will grow back and i will have to use the machine anyway...

Does no one else get self-conscious how they look to their partner? or is it just me?, also can i like never going camping again?..


My wife tells me to not look at it so negatively but look at the positives, but i am finding that very difficult and i find that it is easier to say than actually do.


i have bought a new hybrid mask, thinking it might help with my claustrophobia (fingers crossed)

Thank you all for your lovely words

KarlDD wrote:Hey all

I'm sorry if this seems like a big moan but I am having real problems with my CPAP and my mask along with my diagnosis of Sleep Apnea.

I am a 28 year old male, with two kids, and a wife. I was diagnosed with severe sleep apnea, stopping breathing almost 50 times an hour, I feel so bad every day so tired, falling asleep in traffic, and feeling like Ozzy Osborn.

I was given the sleep apnea full face mask as I am a mouth breather, I have been sleeping with the mask a week now, and been ripping it off subconsciously 2 hours into my sleep almost every night, I hate the way it looks to my wife, I hate the way it feels (like a face hugger) and I really dislike the thought of it, I am very claustrophobic so wearing it gives me crazy anxiety and makes it very upsetting and hard for me to sleep with it, the one night I did sleep through the night with it, I did feel amazing the next day... But alas it still did not make the next nights any easier.

I don't know what to do, I know I should not stop using it, but I hate it so much, l hate sleeping now, I hate going to bed, I hate that pipe coming out and the sounds it makes... I feel like a lung cancer survivor and look like one.....



How did you guys manage to sleep with it every night, I need some advice and help, this machine has put me in a very dark place, and the thought that this is for life scares me.


Sorry for the long moan... Thanks for reading.

I've been on CPAP for three weeks and it's gone well so I'm not the expert but imho:

- FFMs suck. Can you breathe out of your nose or is it stuffy? Have you tried a nasal mask or nasal pillows with a chin strap to keep your mouth closed. I use the Dreamwear and like it.

- All masks look stupid. I hate that too. The improvement to your health and well-being are what will make you more attractive to her.

- I got a FFM as a backup and I think the cushion is too small. I ordered a larger one. See if your vendor will let you try on as many masks as it takes. Try them on laying down with your machine on if possible.

- You might have to buy more than a few masks before you find the best one.

Best of luck!


Sent from my iPhone using Tapatalk

Thank you wrote:can i like never going camping again?..

Sure you can...it's easy to rig up a battery power set up for even primitive camping. Takes a little planning but lots of people do it and we have one forum member who uses batteries for months at a time when he is living on his boat.

As for being self conscious...I was more self conscious about my snoring and the effect it was having on my husband and his worrying about my stopping breathing all night long. He didn't get much sleep worrying about me and listening to me snore like a freight train all night. Heck, I was waking myself up with my own snores.
Besides...you can't see much with the lights out and the eyes closed.

To help you get more used to your new best friend wear it while awake watching TV or reading. Make a game of it with the kids...your new fighter pilot gear or something along those lines. It's real easy to find negatives if that is all you are looking for. The positives are there if you just start looking for them. Maybe not very many at the beginning but they are there.

We even had a couple of forum members (husband and wife) who were both on the machine and they decided to have sex while masked up...go figure that one. I bet those were some wild reports from their machines.

It will get better with time and experience.

KarlDD wrote: I hate the way it looks to my wife, I hate the way it feels (like a face hugger) and I really dislike the thought of it, . . .the thought that this is for life scares me

Treat yourself gently while you go through this transition period. Everyone takes their own time to adjust to this new sleep lifestyle. There are lots of details to learn, to accept, to accommodate ; just take it one thing at a time. There's a whole process to navigating change, and it can be a great learning period. Your confidence will increase as you go through the experiences.

Now you may think your mask looks unattractive to your wife, but I think a very attractive aspect in men is when they take concrete action to improve their health; alive and gaining health is so much more sexy than the alternative. Ask your wife what her opinion is. With better sleep, you will gain more energy and interest in being the best You in all your varying roles.

Look for the humorous moments: for example, my son announced that I looked like a pig, with my nasal mask on. I said, "watch the pig turn into an elephant" and clipped on the hose. We both laughed--what else can you do?!--and he says he is really glad I'm taking care of the apnea because he wants me to be well and happy. I like your vision of the mask as a face "hugger"; who doesn't love a hug?--and it's more friendly than calling it an "alien."

"This is for life" is such a big concept. Change your daily mantra to "this is for tonight", which is much more do-able. Soon enough you'll develop routines and familiarity will set in until a time comes when you'll realize you're actually more comfortable sleeping with your gear on than without it.

Welcome to the forum, and keep on keeping on!
Jean

(7 months in, and learning to tweak the humidity to deal with the change of seasonal weather)

Thank you again, this will be my first sleep now since i posted this morning, I will take what everyone said into consideration, as i try to sleep with the face hugger again! ... I love the thought of being able to view the machine as fun and friendly, just when i go upstairs i know these thoughts will come back... but i will try to think positive.
I am not sure what is to come, but i will keep you all updated.

Some of your comments made me laugh out loud, and one made me think my actual Mum had made an account and tried to say nice things to me ... bless

Thank you all for taking some time, it has really helped me.


also i am very interested how i am going to hook this up camping!