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General Discussion on any topic relating to CPAP and/or Sleep Apnea.
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shanobeigh
 
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TERRIBLE Anxiety trying to breathe against pressures

Postby shanobeigh on Wed Apr 19, 2017 3:38 pm

New here. Sorry this is long, but I'm trying to get the back-story with this so you see where I'm coming from... Bear with me.

Was diagnosed with severe OSA in Oct 2011. I've been claustrophobic pretty much my entire life, per my mom. Said I'd lose my mind if I was mummy wrapped, if my hands were confined, if I was placed in the backseat of a car & couldn't see where we were going. It's 100% a control issue & I get that. I'm ok in an elevator but if that elevator gets stuck between floors, I'd need to be institutionalized. Tried for 10 months to make CPAP work. Had a respironics machine & used swift fx nasal pillows. I couldn't tolerate the pressures - felt like I was being smothered & suffocated by them (they were 15 at that time.) Got tangled up in the tubing more times than I could count & work up in an utter panic because it attached on the front & I sleep on my stomach a lot. I gave up in July of 2012 - had no support from the pulmonologist. Every time I mentioned problems it was, "You're just going to have to get used to it." Just flat gave up & prayed the OSA would just kill me. Fast forward to now. Almost 3 years ago, I left a very abusive relationship where he knew restricting my movement, pinning me down, confining me, etc was terrifying for me & used it as a weapon. A lot. The parting gift he left me with was a mild case of PTSD but with my claustrophobia extremely magnified. Today, the PTSD has been dealt with through counseling & hard work. I'm dating a wonderful man that I've been friends with for 5 years that also has OSA. He is 100% compliant with CPAP. Has been encouraging me for years to deal with it - since long before we started dating. He's spectacular. Unbelievably so. He makes me want to do better & become a better version of myself. I talked to my Dr at my physical in Dec. She said we had an amazing new sleep specialist join the group & wanted to send me to her. So I went. Fought with my ins to get the in lab sleep study approved because since the one in 2011, I've lost about 60 lbs, don't smoke cigs anymore & have eliminated a ton of stress from my life & she was pretty sure things had changed with my OSA. First sleep study was a dismal failure. My insomnia kicked in hard core in the middle of the study - was up for 3 & 1/2 hours & they weren't able to do any thing with a mask. Got enough data to say that yes, I have OSA, that it has significantly improved to "moderate" but not much more. So I fought my ins again for the 2nd in lab study. It was terrible... At the Feb sleep study, the tech had me try on a new mask called Dreamwear. She said she felt it would help with the mask claustrophobia since it takes up very little real estate on my face & the tubing attaches at the of the headgear & swivels so there's very little chance I'll get wrapped up in the tubing like before. My bf had me wear the mask she sent home with me - just the mask not attached to anything - & sleep with it on. I still hated it & tore it off in my sleep, but didn't feel panicked by it - just terribly annoyed. So at my last sleep study a week ago with full titration, I swallowed 0.75mg of Xanax so I'd sleep & not panic. I wore that mask. In the morning, Tech told me it went "perfect" - no leaks in the mask. How is it that perfect resulted in my being just as tired as I am every single morning without CPAP??? That didn't happen at the very first one in 2011... This time, I woke up the same # of times that I do without CPAP - 3 - 4 times, difference is this time, I could feel myself panicking trying to breathe against the pressures. I almost took more Xanax. I went home in tears. This isn't perfect to me. I don't see the point in using something that made no difference in my quality of sleep that requires me to take benzo's to tolerate it. This isn't good long-term solution.

My question is, what in the world do I do about the anxiety from the pressures??? I literally can't control it. I know this is a knee jerk reaction that has been intensified by abuse & PTSD. I know the panic is worse now from those things because when I tried CPAP in 2011-2012 it was bad but not this bad. It's WAY worse now. The only time I experience this PTSD panic now is when trying to breathe against the pressures & feeling smothered by them. I can't do this every night. I can't take benzos to sleep for the rest of my life. They're dangerous & addictive. I feel defeated. My dr has prescribed a new sleep med that supposedly helps with anxiety but isn't addictive. It's stupid expensive, but I'll try almost anything that won't end up with an addiction. I should have a new machine within a week. I don't know what to do... I just feel like giving up. :( :( :(

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Re: TERRIBLE Anxiety trying to breathe against pressures

Postby LSAT on Wed Apr 19, 2017 3:43 pm

What machine are you using? What are the pressure settings? Many machines have exhale pressure relief....do you know if you are using it? What did your sleep study say? With some detail, we might be able to help.

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Re: TERRIBLE Anxiety trying to breathe against pressures

Postby Wulfman... on Wed Apr 19, 2017 3:51 pm

You keep mentioning "pressure", but you don't tell us what pressure(s) you're using.
(Edit: Just saw LSAT's post and agree with all his points/suggestions)

But, try using your equipment in a chair/recliner/couch while you watch TV.
If the pressure is set way too high, try turning it down until you become accustomed to it.
Monitor your therapy with software (if your machine collects data).


Den

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Re: TERRIBLE Anxiety trying to breathe against pressures

Postby shanobeigh on Wed Apr 19, 2017 4:00 pm

Sorry. In lab it was the same Resmed S8 or S9 model I had in 2011. Tech said my max pressure at the study last week was 12. I still felt like I was being suffocated at 12. I have no idea what machine the new sleep dr will order... Does that help???

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Last edited by shanobeigh on Wed Apr 19, 2017 4:03 pm, edited 1 time in total.

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Re: TERRIBLE Anxiety trying to breathe against pressures

Postby Wulfman... on Wed Apr 19, 2017 4:08 pm

shanobeigh wrote:Sorry. In lab it was the same Resmed S8 or S9 model I had in 2011. Tech said my max pressure at the study last week was 12. I still felt like I was being suffocated at 12. Does that help???


Which specific model machine do you have? The "S8" and "S9" are essentially "generations" of ResMed machines. Within those generations are specific models.......Autoset, Elite, Escape, Escape Auto, etc.

Do you know how to get into the setup menu?


Den

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Re: TERRIBLE Anxiety trying to breathe against pressures

Postby rick blaine on Wed Apr 19, 2017 4:09 pm

Hi Shanobeigh,

I'm sorry to read that you've been having a difficult time. And I agree, anxiolytic drugs should only be taken for a short time.

You are, it seems, having to deal with two things ar the same time - getting used to CPAP and dealing with psychological residue - and one is getting in the way of the other.

There are plenty of people here who can guide you through the to-be-expected gradual adjustment to CPAP, but I think your distressing psychological patterns need something else.

There is a new form of psychological treatment which you might want to investigate - it's called Havening, and I would say it is ideal for what you present.

Havening makes use of some simple but very powerful built-in-to-every-human 'mechanisms' to evoke non-stressful and calm reactions in the amygdala part of the brain - and have them replace or extinguish anxious, fearful ones. (The amygdala is one key part of the emotional framework of the brain.)

Havening is not only effective, it's also quite quick - for most problems, half a dozen sessions, rather than years or months.

I can't give you a contact in the US (I'm assuming because you say 'pulmonologist' that you are posting from somewhere in the US) as easily as I can point people to Havening practitioners in the country where I live. But I'm sure if you do a little digging on the internet, you will find some suitably-trained people sufficiently near where you are.

At some point, once those troublesome reactions are no longer present then you can advance with your CPAP treatment.

Best wishes.

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Re: TERRIBLE Anxiety trying to breathe against pressures

Postby CarpeNoctum on Wed Apr 19, 2017 4:39 pm

Shaneobeigh,
The obvious and practical suggestion is that you try BiPap rather then cpap. Bipap machines operate at different pressures for inhale and exhale. And both pressures are adjustable. Much easier to exhale for those who have a problem with that.

So beg borrow or steal (well not that last part) a bipap machine to see if that makes a difference. If insurance or your Doc won't go for it...buy used off Craigslist. People here will help you get it set up if your Doc refuses.

Many users have extricated themselves from the whole MD, DME, insurance hassle and just purchase from the aftermarket. Myself included.
CN

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Re: TERRIBLE Anxiety trying to breathe against pressures

Postby shanobeigh on Wed Apr 19, 2017 5:05 pm

rick blaine wrote:Hi Shanobeigh,

I'm sorry to read that you've been having a difficult time. And I agree, anxiolytic drugs should only be taken for a short time.

You are, it seems, having to deal with two things ar the same time - getting used to CPAP and dealing with psychological residue - and one is getting in the way of the other.

There are plenty of people here who can guide you through the to-be-expected gradual adjustment to CPAP, but I think your distressing psychological patterns need something else.

There is a new form of psychological treatment which you might want to investigate - it's called Havening, and I would say it is ideal for what you present.

Havening makes use of some simple but very powerful built-in-to-every-human 'mechanisms' to evoke non-stressful and calm reactions in the amygdala part of the brain - and have them replace or extinguish anxious, fearful ones. (The amygdala is one key part of the emotional framework of the brain.)

Havening is not only effective, it's also quite quick - for most problems, half a dozen sessions, rather than years or months.

I can't give you a contact in the US (I'm assuming because you say 'pulmonologist' that you are posting from somewhere in the US) as easily as I can point people to Havening practitioners in the country where I live. But I'm sure if you do a little digging on the internet, you will find some suitably-trained people sufficiently near where you are.

At some point, once those troublesome reactions are no longer present then you can advance with your CPAP treatment.

Best wishes.


First of all, Rick: Thank you for your kind words.

Yes, I am in the USA :) I searched for Havening practitioners within 100 miles of me (161 km if my math is correct) & needless to say, I came up empty. Sometimes, the US is behind the curve when it comes to treatment of mental health issues, sad to say. There may be some in the Seattle, WA area, but that's an almost 5 hour drive from here. I was hoping there would be at least one within 50 miles (approx. 80 km,) but alas... I am still seeing the same counselor that helped me escape my abusive relationship. We're no longer focusing on the fall-out from my leaving the monster & rather poke at it from time to time just to be sure there aren't any lingering effects. Now we're focusing on where I want my life to go & how to get there. Overall it's been the best thing I've ever done for myself. I will mention this treatment to him & see if he knows of anyone in the area we can tap into that may have some expertise in this technique. I'd never heard of it before & thank you for mentioning it. :) The monster brought enough trauma to me & stole enough from me & if that technique helps me from losing anymore, I'll do it.

I'm fortunate that the man I am dating is so supportive. He's been so understanding of my issues with this. Has helped gently push me with the new mask - which I've finally come to the conclusion won't allow me to get wrapped up in tubing. Plus with it's overall design, I don't feel trapped by it. Now my hurdle is finding a way to not feel suffocated by the pressures of the CPAP. It was pretty bad in the sleep lab while on a fairly good dose of Xanax. I can't take that forever - it's far too dangerous. To further complicate things, I have severe insomnia on top of the OSA - the insomnia has been a life-long issue. There have been a few occasions when I've been up for 36 hours or more straight. Not recently, but it has happened. Generally, I just can't fall asleep. It's not every night, but when it happens, it's frustrating. I can't fall asleep & when I do, the apnea events wake me up, then I have to fight to fall back asleep & it starts all over. It's a vicious cycle. I'm doing all I can to figure it out, but I honestly feel very overwhelmed & just want to quit. I shared the back-story with my sleep specialist the day after my sleep study last week - I wanted them to understand that I'm not being difficult - I'm really trying to find a solution, but there are issues that I just cannot control right now that are getting in the way. I failed to do share my whole story on my first visit with her. I've had the same primary care dr for 17 years & she knows my entire back-story so I've gotten used to not having to dredge all that up. My sleep specialist was very sweet & said that when she receives the results from my sleep study (which should be today,) she will take all of those things into account when coming up with a treatment plan & machines & the like. I just know that in the lab the other night, the panic rose fast & furious when I would wake up trying to exhale against the pressure of the machine. I need to know what to do to handle this. I want my life back. But waking up feeling like I'm being suffocated will not help me stay compliant with CPAP, that I know. :(

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Re: TERRIBLE Anxiety trying to breathe against pressures

Postby shanobeigh on Wed Apr 19, 2017 5:11 pm

Wulfman... wrote:
shanobeigh wrote:Sorry. In lab it was the same Resmed S8 or S9 model I had in 2011. Tech said my max pressure at the study last week was 12. I still felt like I was being suffocated at 12. Does that help???


Which specific model machine do you have? The "S8" and "S9" are essentially "generations" of ResMed machines. Within those generations are specific models.......Autoset, Elite, Escape, Escape Auto, etc.

Do you know how to get into the setup menu?


Den

.


Hi Den,

I honestly can't remember. I don't even have the other machine anymore. Gave it away. I know it was silver with a humidifier & supposedly had a ramp feature but that did nothing to help me. I had no idea how to adjust anything - only knew how to turn it on & off. Like I said, had zero support from the pulmonologist then. Pressures were still way too high (15 then) & I couldn't tolerate them when they hit their peak & he offered me nothing more than, "just get used to it." Might have been the S9 Autoset from looking at pics on line. They just gave it to me & said use it. Was a dismal failure...

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Re: TERRIBLE Anxiety trying to breathe against pressures

Postby shanobeigh on Wed Apr 19, 2017 5:12 pm

CarpeNoctum wrote:Shaneobeigh,
The obvious and practical suggestion is that you try BiPap rather then cpap. Bipap machines operate at different pressures for inhale and exhale. And both pressures are adjustable. Much easier to exhale for those who have a problem with that.

So beg borrow or steal (well not that last part) a bipap machine to see if that makes a difference. If insurance or your Doc won't go for it...buy used off Craigslist. People here will help you get it set up if your Doc refuses.

Many users have extricated themselves from the whole MD, DME, insurance hassle and just purchase from the aftermarket. Myself included.
CN


I was told BiPAP was only for those with central sleep apnea & wasn't an option for me so I quit asking about it. My insurance sucks. So far though, my sleep dr seems really good. She's gone to bat against my insurance co. Next step is fighting for an oral appliance should the CPAP still be intolerable in a couple months. I've hit my deductible & out of pocket max with 2 sleep studies so there'd be zero out of pocket should we go that route. She just wants me to try everything non-surgical that's available to give her ammo against their complaints.

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Re: TERRIBLE Anxiety trying to breathe against pressures

Postby LSAT on Wed Apr 19, 2017 5:17 pm

shanobeigh wrote:
CarpeNoctum wrote:Shaneobeigh,
The obvious and practical suggestion is that you try BiPap rather then cpap. Bipap machines operate at different pressures for inhale and exhale. And both pressures are adjustable. Much easier to exhale for those who have a problem with that.

So beg borrow or steal (well not that last part) a bipap machine to see if that makes a difference. If insurance or your Doc won't go for it...buy used off Craigslist. People here will help you get it set up if your Doc refuses.

Many users have extricated themselves from the whole MD, DME, insurance hassle and just purchase from the aftermarket. Myself included.
CN


I was told BiPAP was only for those with central sleep apnea & wasn't an option for me...


Whoever told you that had no idea what they were talking about...If it was your doctor..find another.

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Back up mask is another Quattro FF and an F20
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Re: TERRIBLE Anxiety trying to breathe against pressures

Postby shanobeigh on Wed Apr 19, 2017 5:26 pm

LSAT wrote:
shanobeigh wrote:
CarpeNoctum wrote:Shaneobeigh,
The obvious and practical suggestion is that you try BiPap rather then cpap. Bipap machines operate at different pressures for inhale and exhale. And both pressures are adjustable. Much easier to exhale for those who have a problem with that.

So beg borrow or steal (well not that last part) a bipap machine to see if that makes a difference. If insurance or your Doc won't go for it...buy used off Craigslist. People here will help you get it set up if your Doc refuses.

Many users have extricated themselves from the whole MD, DME, insurance hassle and just purchase from the aftermarket. Myself included.
CN


I was told BiPAP was only for those with central sleep apnea & wasn't an option for me...


Whoever told you that had no idea what they were talking about...If it was your doctor..find another.


It was the very first dr in 2011. My current insurance sucks - I've had to fight since January just to get new sleep studies done. So far though, my sleep dr seems really good. She's gone to bat against my insurance co. Now that she has my whole back-story, which I failed to give at my first apt wit her, she said she's going to take all of it into consideration when putting together the treatment plan. Next step is fighting for an oral appliance should the CPAP still be intolerable in a couple months & she will fight for that too. I've hit my deductible & out of pocket max with 2 sleep studies so there'd be zero out of pocket should we go that route. She just wants me to try everything non-surgical that's available to give her ammo against their refusals.

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Re: TERRIBLE Anxiety trying to breathe against pressures

Postby Wulfman... on Wed Apr 19, 2017 5:29 pm

shanobeigh wrote:
Wulfman... wrote:
shanobeigh wrote:Sorry. In lab it was the same Resmed S8 or S9 model I had in 2011. Tech said my max pressure at the study last week was 12. I still felt like I was being suffocated at 12. Does that help???


Which specific model machine do you have? The "S8" and "S9" are essentially "generations" of ResMed machines. Within those generations are specific models.......Autoset, Elite, Escape, Escape Auto, etc.

Do you know how to get into the setup menu?


Den

.


Hi Den,

I honestly can't remember. I don't even have the other machine anymore. Gave it away. I know it was silver with a humidifier & supposedly had a ramp feature but that did nothing to help me. I had no idea how to adjust anything - only knew how to turn it on & off. Like I said, had zero support from the pulmonologist then. Pressures were still way too high (15 then) & I couldn't tolerate them when they hit their peak & he offered me nothing more than, "just get used to it." Might have been the S9 Autoset from looking at pics on line. They just gave it to me & said use it. Was a dismal failure...


Do you actually have a machine NOW?
If so, which one?
Go to this link and see if you can figure out which one. Look at the one you have (if you have one) and find the model name and model number on it.

https://sleep.tnet.com/cmd

If you had/have a pressure of 15 cm, you could lower it till you become accustomed to it.


Den

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Re: TERRIBLE Anxiety trying to breathe against pressures

Postby palerider on Wed Apr 19, 2017 6:23 pm

shanobeigh wrote:My question is, what in the world do I do about the anxiety from the pressures??? I literally can't control it. I know this is a knee jerk reaction

I don't know if this will help or not, but getting a little perspective on the pressure might help.

you mention a pressure of 12. what that means is, 12cm of water. 12cm is right about 4.75 inches. so, get a glass, put 5" of water in it. then stick a straw down to the bottom of the glass, put your lips on it, and blow... you've just exhaled against more than 12cm/h2o pressure.

that's exactly what 12cm is, the pressure that 12 centimeters of water exerts against the air... or how hard you have to blow, to push that water in the straw down 12cm/4.75 inches.

it's really not much pressure, but it's easy to think that it's a lot, especially when people are just throwing around numbers that you don't have any reference to understand.

I hope this helps.

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Re: TERRIBLE Anxiety trying to breathe against pressures

Postby CarpeNoctum on Wed Apr 19, 2017 9:09 pm

shanobeigh,
I'm posting again because the whole Bipap idea seemed to have gotten lost in the shuffle.

It's certainly something worth trying before resorting to surgery or quitting treatment altogether.

Most Doctors really don't know that much about cpap/bipap machines. Thet rely on the practitions and RT's.

BiPap (a respironics phrase for a bilevel machine) doesn't treat central apnea unless they are a specialized bipap such as the bipap st or ASV.

A bipap is prescribed for a couple of reasons. In COPD patients (emphysema and related conditions)...having the lower exhale pressure helps them expel CO2 better...which is a problem for them.

The other reason to use Bipap is for patients who don't tolerate cpap. And this means YOU.

So don't dismiss the idea completely. Secondwind cpap is a totally reputable company that many on this forum have used. Here's a link to a variety of Bipap machines...low hour, for under $600 Just as a possible source.

http://www.secondwindcpap.com/Used_CPAP ... Aj1g8P8HAQ

I know you're feeling overwhelmed and are suffering. There's no magic pills in all this, but if exhaling against pressure is a major issue, this will help.
CN

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