HELP - feeling overwhelmed and like I'm going to fail

[DMacKU20008]

I have been trying to get used to wearing my mask for a little over two weeks now, and am having panic/claustrophobia issues. I've read posts on here with tips on how to get used to using CPAP - wearing mask during the day/removing ramp time (which has helped a little before falling asleep) - but I experience a huge panic attack when I wake up after sleeping for a couple hours. I actually am becoming anxious just while writing this post (and also feel like that when I'm simply discussing the topic during the day).

I also have started using some trazodone which I was prescribed previously for insomnia as suggested by a couple people. I don't like using trazodone because I have a sensitivity to most meds due to having mast cell disease - but I was desperate so I tried it. I slept for about 5 hrs the first night I used it - after averaging about 2-3 hrs for the previous three nights - but then it went downhill from there. Thursday - 1.13 hrs/Friday - 1.29 hrs/Saturday - 2.54 hrs. Those hours, obviously, include time to fall asleep. I did sleep a couple more hours after ripping my mask off on Thursday, and about 1 1/2 more hours last night (Sat).

The combination of having serious sleep problems due to other health issues prior to bei diagnosed with sleep apnea, plus being very anxious/panicky while wearing my mask, I am a MESS. My claustrophobia stems from a sexual assault several years ago. I have made an appointment with a cognitive behavioral psychologist (doctorate degree) who is an industry leader in the field of pain management. I am currently working with him re: pain management skills because I absolutely HATE using prescription meds. He believes that a person must draw on his/her physical, emotional, mental and spiritual resources in order to manage chronic pain without medication. I have resisted discussing the sexual assault with him up to this point. Having a dad who went to West Point definitely had a big impact on causing me to not want to show any weakness. This was further solidified due to my career choice - being a female attorney at a 600+ law firm made me feel like I had to always act like i was in control and strong. I know that everyone is probably thinking "TMI" - but being sleep deprived, coupled with anonymity, caused me to open up a little bit about it. Also, I think that some people that I've discussed the anxiety I'm feeling with either don't understand (i) how it feels to adjust to having a CPAP, and/or (ii) the severity of my claustrophobia because mine doesn't manifest itself as the classical "I can't be in a crowded elevator" type. So, I guess I'm hoping that some people here will understand what I'm going through instead of just dismissing me.

So - all suggestions as to other masks I should try, and/or additional tips to help me overcome my anxiety, are greatly appreciated.

I'm very tired and emotional right now. I apologize if any of this comes across as me whining. Also, please excuse any typos/grammatical errors - im too tired to go back and preview it before posting even though I should. Thanks.

[Pugsy]

Welcome to the forum.
I am so sorry you are having such difficulty sleeping with the cpap/mask stuff.

Can you clarify a couple of things for me please? Would you be having such difficulty if you weren't using cpap? Meaning it sounds like you are having insomnia issues even without cpap/mask and I am trying to figure out if the mask is causing the insomnia or just making existing insomnia worse.

You say you have made some adjustments to pressure and ramp.....what pressure settings are you using now and did you just decide not to use the ramp or did you start the ramp at a higher pressure?

Did you wake with similar panic attacks after a couple of hours without cpap? The reason I ask this is I am trying to figure out if your therapy pressure settings are optimal or not and if maybe you are having apnea events happen which could cause the wake ups and maybe trigger the anxiety?
Have you used the available software to see just exactly what might be going on right before the wake up?
If not..get it and use it.
https://sleep.tnet.com/equipment

While the Wisp is an okay mask IMHO...it's not one that I would recommend for someone with potential claustrophobia type of issues.
Just more stuff in terms of the headgear mainly than I would care for (and I have tried it but IMHO there are other masks out there that are better).
If you like the cushion type of thing over the nose....you might look at the ResMed Swift FX Nano...less headgear but has a similar cushion.
Or go with the nasal pillow mask that I use (see link in my equipment profile) as it is a barely there type of mask. Much less chance of triggering claustrophobia issues IMHO.

Don't beat yourself up over your difficulties. You aren't alone.
You might read RobySue's blog about insomnia and cpap making it worse.
http://adventures-in-hosehead-land.blog ... er_19.html
In it she mentions a couple of books that helped her.....you might also look at those books.

Finally....do you have copies of your sleep studies (in lab or at home) that tells you just how bad your OSA is and whether it is worse on your back or during REM sleep? If not...get them.

Meds sometimes have their place in helping us sleep but the drawback is they often lose effectiveness after a period of time and of course we don't want to be on meds all the time just for sleep. Unfortunately it sounds like for you they lost effectiveness much sooner than normal for some reason..
You mention other health issues ....do you take any other meds that might be a potential culprit in terms of making insomnia worse?

[nolongersleepless]

sorry to hear about all the problems that you are having. It is difficult if you come from a family that emphasized "toughness" over self expression and those are really important issues to discuss with your therapist, especially those regarding trauma from sexual assault. It sounds like you are having a hard time separating these issues from technical issues regarding your cpap but honestly it does take a few weeks to get used to sleeping with it and that is totally normal. I use a nasal pillow because I also don't like my whole face covered, you might want to try that. Don't give up. It takes real courage to confront painful things in one's past. Try to think of it as a process. There will be lots of learning in the next few months, think about how things will be a few months down the road and just keep moving forward.

[quiltybe]

I had that same claustrophobic problem when I first started on Cpap. after 2 weeks of trying to adjust, I packed up the Dreamstation and took the machine back to the DME, called my pulmonologist and made an appointment.. I asked for other options, she prescribed the ResMed Autosense 10 and have not had a problem since... I'm new at this as well..don't give up...
Bev (^..^)

[DMacKU20008]

Can you clarify a couple of things for me please? Would you be having such difficulty if you weren't using cpap? Meaning it sounds like you are having insomnia issues even without cpap/mask and I am trying to figure out if the mask is causing the insomnia or just making existing insomnia worse.

I have had difficulty falling asleep for awhile due to pain prior to CPAP usage.

You say you have made some adjustments to pressure and ramp.....what pressure settings are you using now and did you just decide not to use the ramp or did you start the ramp at a higher pressure?

My pressure settings are min 7 - max 11. The ramp was set up to start at 4 - 30 mins. I changed that after reading some posts on here because I felt like I couldn't get a good breath the very first time I tried to use my machine. Right now I start at 6 and ramp up to 7 over 30 mins. That was after a few in between starting pressures.


Did you wake with similar panic attacks after a couple of hours without cpap? The reason I ask this is I am trying to figure out if your therapy pressure settings are optimal or not and if maybe you are having apnea events happen which could cause the wake ups and maybe trigger the anxiety?
Have you used the available software to see just exactly what might be going on right before the wake up?
If not..get it and use it.

I did not wake up with panic attacks prior to using CPAP. My panic attacks are triggered when I feel like I can't move freely when I want to. For example, I have been told REPEATEDLY by my two daughters and my significant other that I give "bad hugs" - I tend to shrink away from them. This started after the attack. I think the mask has such a dramatic effect on me because during the attack, a hand was put over my mouth - and because I was crying, my nose was partially blocked and I couldn't take a good breath. I already had some claustrophobia type issues from way back when I was little and thought I was going to drown at the beach (I was 3 and I wasn't really in danger but I can still picture looking up and seeing the surface of the water and feeling like i couldn't reach it).

I plan on downloading the sleepyhead software on my computer at home tonight.

While the Wisp is an okay mask IMHO...it's not one that I would recommend for someone with potential claustrophobia type of issues.
Just more stuff in terms of the headgear mainly than I would care for (and I have tried it but IMHO there are other masks out there that are better).
If you like the cushion type of thing over the nose....you might look at the ResMed Swift FX Nano...less headgear but has a similar cushion.
Or go with the nasal pillow mask that I use (see link in my equipment profile) as it is a barely there type of mask. Much less chance of triggering claustrophobia issues IMHO.

I originally thought i would want a nasal pillow mask, but when i did my in-house titration study when i tried the nasal pillow one, the amount of air pressure freaked me out so I immediately took it off. I'm thinking that was a bad move on my part.

Don't beat yourself up over your difficulties. You aren't alone.
You might read RobySue's blog about insomnia and cpap making it worse.
http://adventures-in-hosehead-land.blog ... er_19.html
In it she mentions a couple of books that helped her.....you might also look at those books.

Thank you for the recommendations.

Finally....do you have copies of your sleep studies (in lab or at home) that tells you just how bad your OSA is and whether it is worse on your back or during REM sleep? If not...get them.

I will get a copy of my sleep study tomorrow. I do know that my AHI was 19.3. I had a slightly higher number when lying on my right side vs being on my back (I never sleep on my left side).

Meds sometimes have their place in helping us sleep but the drawback is they often lose effectiveness after a period of time and of course we don't want to be on meds all the time just for sleep. Unfortunately it sounds like for you they lost effectiveness much sooner than normal for some reason..
You mention other health issues ....do you take any other meds that might be a potential culprit in terms of making insomnia worse?

I read last night that non obese chronic opioid users have a much higher percentage of OSA vs general population. I am 5'7" and weight 116 lbs so my BMI is pretty low. As I already wrote above, I am working on pain management/stress management/relaxation exercises in order to get off of all of my meds. Stress is a HUGE aggravating factor for my health issues - one of them is interstitial cystitis confirmed by a cystoscopy. IC is where the protective lining of your bladder has cracks/holes in it. This allows MANY things to penetrate through to the nerves (food and drinks - I have to eat a fairly restrictive diet). There are couple different types - fortunately I don't have any incontinence, unfortunately I have severe pain which can be debilitating at times. My IC hurts all the time, and when i have a severe flare, I end up in the hospital. The pain makes it difficult to sleep (hard to fall asleep and my bladder feels like it's on fire when I wake up - sometimes I have to use the restroom 8-10 times/night). But I am determined to get off my medication because I absolutely HATE taking it. I was actually about halfway there - until the OSA diagnosis (emotional and physical stress both aggravate my IC). I was NOT expecting a diagnosis of sleep apnea. I didn't not have the typical risk factors. A sleep study was ordered due to slight thickening of the ventricle wall of my heart. I dismissed what the doctor told me (because apparently I thought I was smarter than a cardiologist - stupid i know) - so, i waited 2 1/2 years to have one done. I did it because of my insomnia - but to be completely honest, if i wouldn't have met my max-out-of-pocket for insurance this year, i probably wouldnt have.

I also am waiting on a bunch of tests from my oncologist/hematologist which is causing me more stress.

[DMacKU20008]

I had that same claustrophobic problem when I first started on Cpap. after 2 weeks of trying to adjust, I packed up the Dreamstation and took the machine back to the DME, called my pulmonologist and made an appointment.. I asked for other options, she prescribed the ResMed Autosense 10 and have not had a problem since... I'm new at this as well..don't give up...
Bev (^..^)

I appreciate your encouragement!. It's nice to know that making adjustments can help. I'll try to keep the faith.

[DMacKU20008]

sorry to hear about all the problems that you are having. It is difficult if you come from a family that emphasized "toughness" over self expression and those are really important issues to discuss with your therapist, especially those regarding trauma from sexual assault. It sounds like you are having a hard time separating these issues from technical issues regarding your cpap but honestly it does take a few weeks to get used to sleeping with it and that is totally normal. I use a nasal pillow because I also don't like my whole face covered, you might want to try that. Don't give up. It takes real courage to confront painful things in one's past. Try to think of it as a process. There will be lots of learning in the next few months, think about how things will be a few months down the road and just keep moving forward.

I grew up trying to be the boy my dad never had (four daughters- I'm the third oldest). I've needed to address the issues i have related to the sexual assault - but i put it off. Maybe my OSA diagnosis will have a silver lining by "forcing" me to get some help dealing with it. Thanks.

[Pugsy]

Okay, that helps me understand a bit more.

Let's get SleepyHead up and running and see what's happening.
Opiates can makes OSA worse and can also increase the chance of the respiration being suppressed and some unstable breathing develop and have central apneas pop up.

I know you don't have a lot of time on the machine in one solid block but we gotta start somewhere.
Might read this when you have time
viewtopic/t103468/Need-help-with-screen-shots.html
https://sleep.tnet.com/reference/tips/imgur
orginization of images https://sleep.tnet.com/resources/sleepyhead/shorganize

I do understand how pain can affect things and I have some experience with dealing with OSA, pain and opiates. We can chat about that later.
I also can understand how the attack can mess with how you feel with the mask on....any chance you could try a different mask?
And yes..nasal pillows can seem like a LOT of air blowing up your nose and some people can adjust and some can't.
If you don't like how they feel....do look at the Swift FX Nano cushion but the nasal pillows will have the least amount of footprint on your face so maybe consider revisiting them at some time in the future.

[CharlyAndy]

I've been using apnea machines for over 20 years now and I know I would just be an old guy dozing in a rocking chair without one. My current machine is a Hoffrichter Trend II. It usually works very well. The settings were established by sleep studies conducted by professionals. I wouldn't recommend fooling around with these settings on your own. At this point I really don't need a ramp and my machine allows me to bypass it.

A few weeks ago I noticed that in the day time I was extremely tired and unsteady on my feet. Then one night I had a dream that I couldn't breathe. You know, the kind of dream that seems very real. I awoke suddenly and took off my mask to breathe. The machine had stopped. This isn't supposed to happen. It is supposed to help me when I stop breathing! It turns out that the return "spring" for the on/off button had degraded and that was the cause of the problem. I was able to take the machine apart and fix it. The problem is that I had to deduce the problem. When sleeping I didn't experience directly. Let me tell you, the symptoms during the day were significant.

Whatever problems you are having getting used to the machine or the mask, it is well worth it to persevere!

[stevezoller]

Back to the comments about nasal pillows.

1) I find I can use a lower pressure with a nasal pillow than with a full face mask. You may be able to back off the pressure a little bit with a nasal pillow.

2) You don’t have to get to the lowest possible AHI. Just an improved AHI is better than nothing. This concept may also let you go to a lower pressure.

3) Have you considered an oral appliance? I used one for seven years and this would eliminate the issue of things on your face and air pressure.

Good luck.

[Lucyhere]

DMac... I'm truly sorry for all that you are dealing with right now. I think you are doing all the right things... seeing your doctors, being open to suggestions, etc. I thought I would mention two masks that you might consider: the Airfit P10 and the Swift FX with Bella Loops. Both are minimal masks. The Swift FX with Bella Loops go around your ears, not your head. Best of luck and keep us posted.

[Muse-Inc]

...am having panic/claustrophobia issues...

I have claustrophobia and a fear of suffocating...lovely right LOL! I started with a pillow mask, then became a mouth breather ugh. Terrified of taping and horrified by the looks of the nasal and full face masks (FFM), I am so glad people here pointed me in the direction of the Innomed/RespCare Hybrid mask It is a hybrid-style FFM that covers the mouth and has pillows; there are 2 other hybrid-style masks: Liberty and AmaraView. Hooray, th Hybrid mask worked -- that was in summer of 2009 & I still wear it. I cannot see it when it's on (hooray) and I can easily breathe through my nose or my mouth. Click on it in my signature to see it. Our host sells it.