Quantcast

Bookmark and Share
General Discussion on any topic relating to CPAP and/or Sleep Apnea.
herefishy
 
Posts: 950
Joined: Sun Oct 30, 2005 8:24 am
Gender: Female

Re: TERRIBLE Anxiety trying to breathe against pressures

Postby herefishy on Thu Apr 20, 2017 7:41 am

If you're worried about getting wound up in the hose, get a "hose management system" which might be no more than a "command hook" fastened to your headboard, so you can hang your hose up out of your way.
Seems nobody mentioned EPR - exhale pressure relief, so that when you breathe out, the pressure diminshes. If you're breathing in, you shouldn't be breathing against anything.
Hope this helps.

_________________
Mask: Mirage Activa™ LT Nasal CPAP Mask with Headgear
Additional Comments: pressure 10-12

User avatar
shanobeigh
 
Posts: 12
Joined: Wed Apr 19, 2017 1:23 pm
Gender: None specified

Re: TERRIBLE Anxiety trying to breathe against pressures

Postby shanobeigh on Thu Apr 20, 2017 11:55 am

Wulfman... wrote:
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

.


Hi Den,

No, I do not have a CPAP any more. I gave my old one away about 3 & 1/2 years ago. From looking at pics on line, it may have been one of the Resmed S9 models. I don't think it was the auto one though. Once pressures peaked at 15, they stayed there for the duration. I have no clue what my new sleep dr will prescribe yet. She's working in the ICU this week & won't be back in the office until Monday. :(

_________________
Machine Mask Humidifier 

User avatar
shanobeigh
 
Posts: 12
Joined: Wed Apr 19, 2017 1:23 pm
Gender: None specified

Re: TERRIBLE Anxiety trying to breathe against pressures

Postby shanobeigh on Thu Apr 20, 2017 12:22 pm

CarpeNoctum wrote: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


Hi CN,

Thank you!!!! I had no idea how it was different. I just knew that it adjusted pressures but that was it. Besides, my initial dr in 2011 said it wasn't a good option for me (my original pressures were set at 15 in 2011 & I was told after my sleep study this week that they maxed out at 12, so I have improved.) I will call my Dr's office today & talk with the PA & let her know this has been suggested to me. I am trying to deal with this & am not trying to be difficult. The monster I was with for 2 years took my problems with claustrophobia & exploited them, which I know is driving my overall issues now. The fight or flight response I'm having is FAR worse than it was in 2011 which was prior to our relationship. I recognize the connection, just not sure what to do about it. Talked with my counselor that I've been seeing since I left & he agrees that my primitive amygdala is taking over & flooding me with the sensations of being strangled - which is what the monster would do to me - since that part of the brain isn't "rational", it feels the same, and it's kicking into high gear. That part of the brain can't tell the difference between today & the feelings of terror I had while actually feeling threatened & smothered or confined, I have to find a way to shut it down so I can deal with breathing against the pressure of the machine. The Dreamwear mask that I used in the study isn't making me freak about getting tangled in then tubing like the ones where the hose connects in front. I still hate it, but it's not making me hyperventilate. If BiPAP will help, I'll try it.

_________________
Machine Mask Humidifier 

User avatar
shanobeigh
 
Posts: 12
Joined: Wed Apr 19, 2017 1:23 pm
Gender: None specified

Re: TERRIBLE Anxiety trying to breathe against pressures

Postby shanobeigh on Thu Apr 20, 2017 12:35 pm

palerider wrote:
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.


Thank you so much. This is an interesting perspective. I will commit this to memory & see if it helps. I have a new sleep med that's supposed to make me not care (not a benzo, not addictive - Belsomra is what it is) & keep me asleep so I can maybe adjust to the new machine, once I get it. Problem is, I woke up all night on it anyway, so I don't know. Your perspective, though may help me push past it. I certainly hope so. I've never heard it explained this way. Thank you. :)

_________________
Machine Mask Humidifier 

dlby
 
Posts: 27
Joined: Wed Jan 25, 2017 7:00 pm
Gender: None specified

Re: TERRIBLE Anxiety trying to breathe against pressures

Postby dlby on Thu Apr 20, 2017 2:36 pm

I turned mine way down since it was to much for me & i have no claustrophobic issues.
I run an auto machine between 4.2 - 8.
Im supposed to be much higher but this works great for me.
12 just cranks me up & i take it off in my sleep.
Feel good next day etc.
So to me numbers arent always practical

Sent from my SAMSUNG-SM-G920A using Tapatalk

User avatar
CarpeNoctum
 
Posts: 73
Joined: Tue Nov 01, 2011 7:40 pm
Location: Ilwaco WA
Gender: Male

Re: TERRIBLE Anxiety trying to breathe against pressures

Postby CarpeNoctum on Thu Apr 20, 2017 6:10 pm

shanobeigh,
I hope that the bipap idea helps with at least some of your apnea issues. Just a little heads up. Just like with cpap and auto cpaps...there are also auto bipap machines. With your issues related to exhale anxiety...having fixed exhale pressure would be better then having the machine boost pressures on you. Even if you are issued an auto bipap, it can be adjusted to either disable the auto component, or severely limit the pressure range. Setting up an auto bipap is really an issue for your provider...but make sure he/she understands the goal. And of course there are many knowledgible and helpful folks here on the forum.

It saddens me to hear about your abuse history. But hopefully your new guy can help support you as you recover. It takes time.
Best wishes,
CN

User avatar
robysue
 
Posts: 7440
Joined: Sat Sep 18, 2010 2:30 pm
Location: Buffalo, NY
Gender: Female

Re: TERRIBLE Anxiety trying to breathe against pressures

Postby robysue on Thu Apr 20, 2017 6:37 pm

shanobeigh,

First let me say that I'm sorry that you've had so many struggles in your life and that the first time round with CPAP went so badly.

Next a few comments about couple things that you've stated more than once in your posts.

First you write:
Now my hurdle is finding a way to not feel suffocated by the pressures of the CPAP.

It's important to figure out what you mean when you say that you feel suffocated by the CPAP.

Do you mean that there is so much air coming into the mask that you find it hard to properly exhale? Or do you mean that there is so little air coming into the mask that you find it hard to properly inhale?

People describe both problems as "I feel suffocated by the machine" but the approaches to fixing the problem are quite different. And the things that fix "too much air" are likely to make the "too little air" problem worse and vice versa.

Next you write:
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.

Dealing with the combination of insomnia and difficulties with adjusting to CPAP when you've got OSA can be difficult. I know that all too well---check out the "Taming the CPAP-induced insomnia monster link" for a bit of what I'd gone through and my standard set of suggestions on how to deal with it. The fact that you've got some PTSD problems, a history of claustrophobia, and a previous bad CPAP experience in past means that it is reasonable to expect that you will likely take longer to adjust to CPAP than many new CPAPers. But that doesn't mean you won't be able to adjust.

If you can get to the point where you can put the machine on your nose at the beginning of the night, fall asleep without more than your normal problems, and stay asleep all night, then chances are after a few weeks to a few months you will be feeling better than you do right now. You might never have a morning where you wake up feeling WONDERFULLY BETTER all of a sudden. For many of us the improvement in how we feel is gradual---sometimes it's gradual enough that a CPAPer may not even notice it until or unless s/he is forced to sleep without the CPAP for a night or two. So reasonable expectations are needed.

But getting to the point where you can put the machine on your nose at the beginning of the night and fall asleep in a reasonable amount of time may very well take some time. I'd suggest that you have a long chat with the new sleep doc (if possible) about all of your sleep issues---including the long history of insomnia and what you know makes it worse and how you've tried to manage it in the past. It may be that you will need to consider using medication (either anti-anxiety medication or sleep medication) for a few weeks to get over the hump of your initial anxiety about starting CPAP. It could be that you might want to use a combination of cognitive behavior for insomnia techniques, possibly combined with medication. If you don't want to take the medication every night for a few weeks, you could plan on taking the medication only after you've had a disastrous night. In other words, if you didn't take medication on Sunday night, and you had a real disaster that night (you define "disaster"), then take the medication at the start of Monday night. On Tuesday night, skip the medication if you slept ok (or even "sort of ok") on Monday night.

Good luck as you begin this adventure.

_________________
Machine: DreamStation BiPAP Auto Machine
Mask: Swift™ FX Nasal Pillow CPAP Mask with Headgear
Additional Comments: PR System DreamStation and Humidifier. Max IPAP = 9, Min EPAP=4, Rise time setting = 3, minPS = 3, maxPS=5

User avatar
shanobeigh
 
Posts: 12
Joined: Wed Apr 19, 2017 1:23 pm
Gender: None specified

Re: TERRIBLE Anxiety trying to breathe against pressures

Postby shanobeigh on Thu Apr 20, 2017 8:31 pm

robysue wrote:shanobeigh,

First let me say that I'm sorry that you've had so many struggles in your life and that the first time round with CPAP went so badly.

Next a few comments about couple things that you've stated more than once in your posts.

First you write:
Now my hurdle is finding a way to not feel suffocated by the pressures of the CPAP.

It's important to figure out what you mean when you say that you feel suffocated by the CPAP.

Do you mean that there is so much air coming into the mask that you find it hard to properly exhale? Or do you mean that there is so little air coming into the mask that you find it hard to properly inhale?

People describe both problems as "I feel suffocated by the machine" but the approaches to fixing the problem are quite different. And the things that fix "too much air" are likely to make the "too little air" problem worse and vice versa.

Next you write:
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.

Dealing with the combination of insomnia and difficulties with adjusting to CPAP when you've got OSA can be difficult. I know that all too well---check out the "Taming the CPAP-induced insomnia monster link" for a bit of what I'd gone through and my standard set of suggestions on how to deal with it. The fact that you've got some PTSD problems, a history of claustrophobia, and a previous bad CPAP experience in past means that it is reasonable to expect that you will likely take longer to adjust to CPAP than many new CPAPers. But that doesn't mean you won't be able to adjust.

If you can get to the point where you can put the machine on your nose at the beginning of the night, fall asleep without more than your normal problems, and stay asleep all night, then chances are after a few weeks to a few months you will be feeling better than you do right now. You might never have a morning where you wake up feeling WONDERFULLY BETTER all of a sudden. For many of us the improvement in how we feel is gradual---sometimes it's gradual enough that a CPAPer may not even notice it until or unless s/he is forced to sleep without the CPAP for a night or two. So reasonable expectations are needed.

But getting to the point where you can put the machine on your nose at the beginning of the night and fall asleep in a reasonable amount of time may very well take some time. I'd suggest that you have a long chat with the new sleep doc (if possible) about all of your sleep issues---including the long history of insomnia and what you know makes it worse and how you've tried to manage it in the past. It may be that you will need to consider using medication (either anti-anxiety medication or sleep medication) for a few weeks to get over the hump of your initial anxiety about starting CPAP. It could be that you might want to use a combination of cognitive behavior for insomnia techniques, possibly combined with medication. If you don't want to take the medication every night for a few weeks, you could plan on taking the medication only after you've had a disastrous night. In other words, if you didn't take medication on Sunday night, and you had a real disaster that night (you define "disaster"), then take the medication at the start of Monday night. On Tuesday night, skip the medication if you slept ok (or even "sort of ok") on Monday night.

Good luck as you begin this adventure.


Hi Robysue,

First off, thanks for your kind words. They mean a lot. This has been a nightmare this time. I knew it would be rough with my claustrophobia & insomnia like my past experience in 2011 but I didn't expect to have panic flare like this. I know it's connected to my past abusive relationship where these triggers were exploited to no end. I really thought I had done the work to beat back the fall out from the abuse, but it's shown me that there's more work to be done in that area. I guess that's maybe a silver lining - I've identified an area that is still not healed & could cause problems in the future so I can now try to kill it at the source. My counselor is reaching out to a colleague that specializes in trauma recovery / PTSD & is certified in EMDR therapy so we can tackle the remaining issues there using that model for a bit.

Second, I should have been clearer regarding the pressures. They're too high. I feel like I have a pillow over my face when I try to exhale. It's terrifying for me. :( In 2011 they were at 15. Monday night during the study, they topped out at 12. Improved it seems, but exhaling against the machine was awful nonetheless.

Third, the insomnia is only making this worse. Fortunately, this was shown to be very severe during my sleep study in Feb. This new doctor could clearly see my issues there. I've had the same primary dr for 17 years & she's amazing. Knows all the backstories & has really become intuitive with me. I was using Trazodone, but it a) made my snoring WAY worse & b) didn't seem to do a thing for the CPAP anxiety. Now we're trying Belsomra (which is STUPID expensive even with insurance, but I'll try it) because it's non addictive & she said people report not having anxiety on it. She said to give it a week & see if it helps. It took me a little over an hour to fall asleep last night & I did wake up at 3:00 a.m. but did manage to fall back to sleep. I'm thinking that because this is a hypnotic, it may have been an apnea event that woke me up since I don't have a machine yet (will within a week I would think) & these drugs are known to make untreated apnea worse because they relax the back of the throat allowing the tongue to block the airway. I may use a sleep app tonight that I have on my tablet to see if I can hear an apnea event if I wake up & connect the 2 together. She said if it doesn't work for me, we'll try something else & keep trying until we find what works. She knows I don't want to take benzos long term. Heck, I don't want to take anything long term - THAT'S where I'm a difficult patient, but in order to figure this out, I'm trying anything that could work. My new sleep dr (not the same one who was very dismissive in 2011) seems to want to do whatever she can to help. So far, so good. She also seems to have a very good staff that is very focused on coordinated care & patient support. If I start to feel the way I did in 2011, I will bounce to another sleep specialist though. And if after a couple of months of trying I'm still needing anxiety meds to sleep, I will start pushing for an oral appliance that requires no PAP machine. That one thing would kill all birds with one stone, but since my insurance co sucks so bad, she wants me to try everything non-surgical to give her ammo to force them to pay for the appliance.

As far as the adjustment period, I have a wonderfully supportive boyfriend (prob fiancée soon, tbt) who also has sleep apnea, is on CPAP & had PTSD from 2 combat tours in the Gulf. To say he understands what I'm going through would be an understatement. He's the reason why the mask itself doesn't freak me out because he made me wear it - just the mask - to sleep so I could see that I wasn't going to get tangled up in anything. I tore it off my face in my sleep only because it was annoying. It's been nice to feel supported & loved enough by him that he's pushing me to deal with the apnea without being a jerk about it. He said he'd move me in & work with me every night until I was able to use it without anxiety meds & was compliant. I'm pretty blessed for sure right there.

Again, thanks so much for your kind words & advice. They help a lot. :)

_________________
Machine Mask Humidifier 

User avatar
shanobeigh
 
Posts: 12
Joined: Wed Apr 19, 2017 1:23 pm
Gender: None specified

Re: TERRIBLE Anxiety trying to breathe against pressures

Postby shanobeigh on Thu Apr 20, 2017 8:34 pm

CarpeNoctum wrote:shanobeigh,
I hope that the bipap idea helps with at least some of your apnea issues. Just a little heads up. Just like with cpap and auto cpaps...there are also auto bipap machines. With your issues related to exhale anxiety...having fixed exhale pressure would be better then having the machine boost pressures on you. Even if you are issued an auto bipap, it can be adjusted to either disable the auto component, or severely limit the pressure range. Setting up an auto bipap is really an issue for your provider...but make sure he/she understands the goal. And of course there are many knowledgible and helpful folks here on the forum.

It saddens me to hear about your abuse history. But hopefully your new guy can help support you as you recover. It takes time.
Best wishes,
CN


Hey CN,

Again thank you for such kind words. I didn't get a chance to call my sleep specialist today, but will tomorrow & will bring up all of your suggestions & ask that they be documented & considered. This is more helpful than you know. I appreciate it so much!!!

Shanobeigh

_________________
Machine Mask Humidifier 

User avatar
robysue
 
Posts: 7440
Joined: Sat Sep 18, 2010 2:30 pm
Location: Buffalo, NY
Gender: Female

Re: TERRIBLE Anxiety trying to breathe against pressures

Postby robysue on Fri Apr 21, 2017 8:25 am

shanobeigh wrote:Second, I should have been clearer regarding the pressures. They're too high. I feel like I have a pillow over my face when I try to exhale. It's terrifying for me. :( In 2011 they were at 15. Monday night during the study, they topped out at 12. Improved it seems, but exhaling against the machine was awful nonetheless.

I kind of thought that might be the case.

For what it's worth, I know the feeling you're talking about way too well. And I started out with straight CPAP set at 9cm, which is hardly a high pressure around here. There are some things to keep in mind to help minimize this problem once you get your equipment. They include:
  • Exhalation pressure relief systems. EPR on Resmed and Flex on the PR machines reduce the pressure at the beginning of each inhalation. EPR is more predictable and provides up to 3cm of pressure relief on each and every exhalation. It (or Flex) can be a godsend. And for some people, that's all that's needed.
  • Use of the ramp. Yes, a lot of people around here frown on using the ramp. But if used correctly, the ramp can provide a lot of help for someone who has real trouble getting to sleep because they find it difficult to exhale against their prescribed pressure. Both the Smart Ramp on the PR Dreamstation and the AutoRamp on the Resmed AirCurve wait for a period of time before they start increasing the pressure from the beginning ramp pressure to the prescribed pressure. The two ramp algorithms differ a bit in how and when they decide to start increasing the pressure, but those differences can be talked about later. And either one of them should be useful to you. Using the ramp will allow you to lower the pressure when you are awake and trying to get (or get back) to sleep. You can start the ramp much lower than your prescribed pressure. (But beware, if you set the ramp really low, a lot of people around here will immediately tell you that the ramp pressure is set sooo low that it's causing your feeling of 'suffocation'.)
  • Use of APAP vs. CPAP. Try to make sure your durable medical equipment provider (DME) sets you up with an APAP rather than a CPAP. This allows you to set a minimum pressure level that is above the ramp pressure, but below the prescribed pressure. The machine will only use the higher pressures when your apnea warrants the additional pressure---as long as few or no events occur and as long as there's no snoring, the pressure stays at or near the minimum pressure range after the ramp period ends.
  • Change of mask style. With the claustrophobia, it makes sense to start out with a nasal pillows mask. But some people find the intensity of having air blown directly into their nostrils more than a bit bothersome. But if they switch to a nasal mask (or even a full face mask), the air bothers them a whole lot less. My hubby was that way. There's absolutely no evidence that he's a mouth breather, and yet he has a strong preference for a full face mask. Of course, the bigger the mask, the bigger the footprint on your face, and the more likely it may be to cause the claustrophobia to kick in. Nonetheless, there are now some pretty minimal nasal masks out there that don't have forehead supports, and trying one of them may make it a bit easier to exhale for you.
  • Temporary use of a (max) pressure that is lower than the prescribed pressure. If it turns out that you can breathe reasonably comfortably at, say 9cm, but can't at 12cm, then it's worth starting out at 9cm and monitoring the data. If the AHI at 9cm turns out to be effective, then there's no need to increase the pressure further. If the AHI is still too high at 9cm, then after a week or two of using 9cm, you can start gradually increasing the pressure up to the prescribed 12 cm. Yes, you'll have less than effective therapy while you do this, but some therapy is often better than no therapy.
  • Trial a bilevel machine if nothing else helps enough. It's true that not all sleep docs are willing to switch an OSA patient to bilevel because of prolonged problems with adjusting to CPAP. But if you're feeling worse after a couple of months of PAPing and the insomnia is getting worse, then it's worth asking about. In my case, I was switched to bilevel at the suggestion of a PA in my first sleep doc's office after 2.5 months of trying very hard to adjust to CPAP and then to APAP without much success. Aerophagia was a huge issue, but so was the growing insomnia and the fact that even at very low pressures I was having real problems exhaling against the pressure. The switch was a major step forward for me becoming a compliant PAPer.


First off, thanks for your kind words. They mean a lot. This has been a nightmare this time. I knew it would be rough with my claustrophobia & insomnia like my past experience in 2011 but I didn't expect to have panic flare like this. I know it's connected to my past abusive relationship where these triggers were exploited to no end. I really thought I had done the work to beat back the fall out from the abuse, but it's shown me that there's more work to be done in that area. I guess that's maybe a silver lining - I've identified an area that is still not healed & could cause problems in the future so I can now try to kill it at the source. My counselor is reaching out to a colleague that specializes in trauma recovery / PTSD & is certified in EMDR therapy so we can tackle the remaining issues there using that model for a bit.
You have a remarkably positive attitude towards the fact that you and your councilor realize that you have a lot more work to do with the PTSD issues. Your willingness to keep working on them bodes well. As the PTSD is treated, your anxiety about the CPAP should go down. And as you finally start sleeping well with the CPAP, that should help with the PTSD therapy. In other words, it sounds like you're at the beginning of trying to establish a positive feedback loop between the PTSD therapy and the CPAP therapy. I wish you well on addressing both the PTSD and the OSA and the insomnia.


Third, the insomnia is only making this worse. Fortunately, this was shown to be very severe during my sleep study in Feb. This new doctor could clearly see my issues there. I've had the same primary dr for 17 years & she's amazing. Knows all the backstories & has really become intuitive with me. I was using Trazodone, but it a) made my snoring WAY worse & b) didn't seem to do a thing for the CPAP anxiety. Now we're trying Belsomra (which is STUPID expensive even with insurance, but I'll try it) because it's non addictive & she said people report not having anxiety on it.
It took me a very long time to become comfortable with long term use of sleeping pills after my insomnia became intransigent and morphed from just sleep onset to a combination of sleep onset, sleep maintenance and delayed sleep phase issues. But in the end, I think my current sleep doc was correct when he suggested long term use of Ambien (before Belsomra came on the market) and then Belsomra.

Yes, Belsomra is ridiculously expensive as a new medication that is patented. But Ambien was causing some side effects for me (mostly daytime sleepiness and lots of constipation issues), and the Belsomra does not do that.

She said to give it a week & see if it helps. It took me a little over an hour to fall asleep last night & I did wake up at 3:00 a.m. but did manage to fall back to sleep.
What time did you get to sleep? If you woke up about 90 minutes or 3 hours after going to sleep, that wake may have been a perfectly normal post-REM wake. The critical idea with normal post-REM wakes is to NOT worry and obsess about them since that turns a 1-5 minute long wake that doesn't really disturb your sleep into a major 10-30 minute wake that does.

Has the new sleep doc suggested keeping a sleep log for the insomnia? That played an exceptionally large role in my conquering the CPAP-induced explosion in my insomnia problems after starting CPAP. When the insomnia gets bad enough to start interfering with my sleep, I often go back to keeping the sleep log for a few weeks. It turns out that a sleep log can provide a lot of insight into both what's bad and what's good with your sleep. And it helps you focus on the good and how to increase the good. If you're interested in learning more about sleep logs, just let me know.

I'm thinking that because this is a hypnotic, it may have been an apnea event that woke me up since I don't have a machine yet (will within a week I would think) & these drugs are known to make untreated apnea worse because they relax the back of the throat allowing the tongue to block the airway. I may use a sleep app tonight that I have on my tablet to see if I can hear an apnea event if I wake up & connect the 2 together.
My advice to just chill out about trying to tie the wakes to the apnea events. You'll be getting your CPAP soon. In the meantime don't get so worked up about worrying about whether each and every wake is somehow caused by an apnea event. Some of them probably are, and some probably aren't. My point is you've been sleeping poorly for many years now, but you weren't lying awake wondering about the anpea and your breathing all that time. Allow yourself the luxury of not worrying about the apnea until you get the CPAP. Focus on the insomnia for now. Focus on the OSA and CPAP adjustment once you have that CPAP.

And do you know what make and MODEL of CPAP your DME is intending on selling you? That's critically important. Make sure it records full efficacy data, not just summary data. Ideally fight for an APAP rather than a CPAP. An APAP can always be set to CPAP mode, but a CPAP can't be used as an APAP.

She said if it doesn't work for me, we'll try something else & keep trying until we find what works. She knows I don't want to take benzos long term. Heck, I don't want to take anything long term - THAT'S where I'm a difficult patient, but in order to figure this out, I'm trying anything that could work. My new sleep dr (not the same one who was very dismissive in 2011) seems to want to do whatever she can to help.
Having a quality sleep doc whom you trust is critical. But do keep in mind that it took years for your sleep to deteriorate to where it currently is now and it may take several months to straighten out your sleep issues. Also if possible have a chat with your sleep doc about setting goals for your sleep: You may never get to the point where you go to bed at 10:30pm, fall asleep by 10:45, and sleep without any wakes until 7:00AM. So with the help of your doc, set some reasonable goals for what a good night's sleep for you actually looks like.

It took me four tries to find a keeper of a sleep doc who I could trust. We worked hard for over a year before he revisited the issue of long term use of sleeping medications. By that time I was willing to trust him enough to consider it. It hasn't totally fixed all of my issues, and indeed my sleep doc and I are currently doing some experiments with both the Belsomra and my pressure settings because my sleep deteriorated over the winter substantially. We've stopped the negative spiral and stabilized my sleep. Now we're working together on getting it back to where it was a year ago when I felt pretty good when I woke up most mornings and had plenty of energy to get through my days.


So far, so good. She also seems to have a very good staff that is very focused on coordinated care & patient support. If I start to feel the way I did in 2011, I will bounce to another sleep specialist though. And if after a couple of months of trying I'm still needing anxiety meds to sleep, I will start pushing for an oral appliance that requires no PAP machine. That one thing would kill all birds with one stone, but since my insurance co sucks so bad, she wants me to try everything non-surgical to give her ammo to force them to pay for the appliance.
I would urge you to have a bit more patience with CPAP. A lot of people take more than 2 months to fully adjust to CPAP and you may be setting yourself up for failure by giving yourself a deadline.

And here's the thing about oral appliances: Not only are they expensive, but they have their own whole set of issues. A lot of oral appliance users complain about serious jaw pain since they work by moving your jaw out of position for substantial periods of time. It also can take some effort to get used to sleeping with a rather large thing in your mouth---a thing that essentially changes how much control you have over your jaw movements. Oral appliances have to be adjusted over a multi-week period where each adjustment moves your jaw further out of where it wants to be. Finally keep in mind that an oral appliance is considered "effective" if it reduces the AHI by 50%. That probably won't reduce your AHI down to below 5.0 on a nightly basis, so it may not led to as much improvement of your daytime symptoms as you might hope. Still, after 6-12 MONTHS of unsuccessful PAPing, looking into an oral appliance may be worth it since some therapy for OSA is better than no therapy for OSA.

As far as the adjustment period, I have a wonderfully supportive boyfriend (prob fiancée soon, tbt) who also has sleep apnea, is on CPAP & had PTSD from 2 combat tours in the Gulf. To say he understands what I'm going through would be an understatement. He's the reason why the mask itself doesn't freak me out because he made me wear it - just the mask - to sleep so I could see that I wasn't going to get tangled up in anything. I tore it off my face in my sleep only because it was annoying. It's been nice to feel supported & loved enough by him that he's pushing me to deal with the apnea without being a jerk about it. He said he'd move me in & work with me every night until I was able to use it without anxiety meds & was compliant. I'm pretty blessed for sure right there.
Yes, it does sound like you have a keeper. My hubby (who was NOT a CPAPer at the time) was wonderfully supportive and I would not be here today as a compliant PAPer if it had not been for his support and patience during my difficult 9-12 month long adjustment period.

Still I want you to keep in mind that with your history of PTSD, insomnia, prior bad experiences with CPAP, and claustrophobia, setting reasonable expectations about starting CPAP and how long it might take to fully adjust to CPAP is going to be critically important.

It could easily take you anywhere from 2 months to a year before you are genuinely sleeping well with the machine, where sleeping well means more than just using the dang CPAP. By sleeping well with the CPAP I mean all of the following:
  • Going to bed at a time that is reasonable for your lifestyle and getting to sleep in a reasonable amount of time in your opinion.
  • Putting the mask on each and every night with no dread, no anger, no anxiety, no worrying about how bad things will be tonight.
  • Keeping the mask on all night long without fighting to do that.
  • Waking up no more than once every 90 minutes or so, keeping the mask on through the wake without thinking about taking the mask off, and getting back to sleep within 5 minutes most of the time.
  • Getting somewhere between 6 and 9 hours of sleep each night, where the actual total depends on what makes you feel best. Some of us actually do function better on 6 or 7 hours of sleep than on 8 or 9 hours.
  • Having a sleep efficiency of 85% or better almost every night. Ideally you sleep efficiency should be more like 90% on most nights. Note that Sleep efficiency = (Time asleep)/(Time in bed). If you are lying in bed for 9 hours, but only managing to get 6 hours of sleep, your sleep efficiency is a pretty lousy 66.67%
  • Waking up feeling rested and even refreshed most mornings.

_________________
Machine: DreamStation BiPAP Auto Machine
Mask: Swift™ FX Nasal Pillow CPAP Mask with Headgear
Additional Comments: PR System DreamStation and Humidifier. Max IPAP = 9, Min EPAP=4, Rise time setting = 3, minPS = 3, maxPS=5

User avatar
esel
 
Posts: 77
Joined: Fri May 20, 2016 3:35 am
Location: switzerland
Gender: Male

Re: TERRIBLE Anxiety trying to breathe against pressures

Postby esel on Mon Apr 24, 2017 9:33 am

robysue wrote: When the insomnia gets bad enough to start interfering with my sleep, I often go back to keeping the sleep log for a few weeks. If you're interested in learning more about sleep logs, just let me know.


Dear robysue,

I would be very interested in what to record in a sleep log.

And to shanobeigh, there is maybe one more interesting approach to treat anxiety.

Virtual reality exposure therapy of anxiety disorders. It integrates real-time computer graphics, body tracking
devices, visual displays, and other sensory input devices to immerse patients in a computer-generated virtual
environment.

This therapy has developed for many types of anxiety ask your doc about it.

Don't ever give up. and good luck.

_________________
Machine: AirCurve™ 10 VAuto BiLevel Machine with HumidAir™ Heated Humidifier
Mask: Forma Full Face CPAP Mask with Headgear
Additional Comments: AirCurve 10 CS PaceWave, Full Mask, sleepyhead, ASV Min EPAP 5 Max IPAP 10.4 PS 0.4-5.4

User avatar
robysue
 
Posts: 7440
Joined: Sat Sep 18, 2010 2:30 pm
Location: Buffalo, NY
Gender: Female

Re: TERRIBLE Anxiety trying to breathe against pressures

Postby robysue on Mon Apr 24, 2017 6:56 pm

esel wrote:
robysue wrote: When the insomnia gets bad enough to start interfering with my sleep, I often go back to keeping the sleep log for a few weeks. If you're interested in learning more about sleep logs, just let me know.


Dear robysue,

I would be very interested in what to record in a sleep log.

My basic sleep log template is one that is an edited version of the one Excel spreadsheet my sleep doc from 5 years ago had on their website. My empty printed out two week template for a sleep log looks like this (Click on the image and you'll be taken to a bigger version of the image over at imgur):

Image

If you want a copy of the Excel file, pm me with your email address and I'll be happy to send it to you.

If I'm not trying to track anything except the insomnia, I pretty much stick to this format. I have the date column set up so that if I edit the first date on the template, all the other dates automatically update correctly. The Total time in Bed column and the Sleep Efficiency columns are automatically computed from data that I enter by hand.

I use the time I turn by BiPAP on and off for "Time to Bed" and "Time out of Bed" rather than trying to record that directly by looking at a clock. The "Time to Bed" entry has to be on a 24-hour clock in order for the Total time in Bed column to be computed correctly.

The Evening recordings should be added shortly before going to bed. I use a simple 0-5 scale to rate the day overall. The column that I have labeled "Exercise?" was originally a "Nap column" where you were suppose to record both when you started the nap and how long it lasted. But I don't generally take naps unless I've got a monster migraine. Since exercise is something that I know affects my sleep, if I'm tracking the insomnia, I want to jot down a note or two about what I did and how intense it was. The evening Comments column is for whatever I wan to remember about the day---good or bad. If my headaches are acting up, that's noted in the Comments column. If I was really sleepy or really tired or had a lot of brain fog, that's noted there. If I had a lot of energy and got more done than normal, that's noted there.

Ideally the Morning recordings should be done shortly after getting up. (I try to do them while eating breakfast.) Ideally they should not take more than 5-10 minutes to record.

As I said before, I just use the time the BiPAP was turned on and off for Time to Bed and Time out of Bed. It's easy and consistent and I don't have to look at the clock right before I go to bed and try to remember what time I went to bed.

The time in the Times to Fall Asleep is supposed to beestimates. There's no need to stare at the clock while you are in bed trying to make this estimate more accurate. I believe that when I did the serious CBT-I, I was told that estimating with 10-15 minute intervals was plenty accurate enough. I do tend to use 5 minute intervals for Time to Sleep now because when I'm sleeping well my latency to sleep is often less than 5 minutes, and seldom more than 10 minutes.

The number of wakes is also an estimate. There is no need to try to document each and every wake you happen to have most of the time. And indeed, part of CBT-I is to teach your brain to NOT worry about every single wake. It's fine to give yourself some wiggle room here too: If you're not sure if you remember 3 or 4 wakes, just say 3-4 wakes in that column.

The time in the Total Sleep Time is also supposed to be estimated. But it needs to be entered in time format (hh:mm). In other words, don't bother trying to watch the clock during the night to keep track of how long you are awake after each wake. This estimate can be derived in a couple of different ways. You can just base it on your gut feeling---if you think you only sleep for about 4 and a half hours, just say 4:30 and be done with it. Or if you remember a couple of short wakes and one longer restless period, you can estimate the total time you were awake (including the Time to Sleep), and subtract that from the Total Time in Bed figure. Generally you can assume that a wake that you barely remember was no more than 5 or 10 minutes long since most people do not remember wakes that last less than 5 minutes. Longer wakes? Just guess based on how long you think you were tossing and turning and struggling to get back to sleep. Do NOT intentionally clock watch to try to figure out how long you are awake---that will typically make the insomnia worse.

As an example: If I think it took me about 15 minutes to get to sleep, and I vaguely remember 2 or 3 wakes and more clearly remember one long wake where I struggled for what felt like 20 minutes to get back to sleep, I'll assume that my total wake time during the night was probably close to 15 + 3*5 + 20 = 50 minutes. If I was in bed for a total of 7:36 according to the CPAP, I'll enter 6:46 for the Total Sleep Time. The Excel spreadsheet will automatically divide 6:46/7:36 to calculate the Sleep Efficiency number. There used to be a sleep tech who posted here a lot under a variety of names, among them both Muffy and NotMuffy. He helped me a lot when I was dealing with really severe CPAP-induced insomnia. He was the one who suggested that I keep track of the Sleep Efficiency number. He indicated that those in the sleep profession typically assume that insomnia is not a severe problem if the Sleep Efficiency is greater than 0.85 (85%), but that he personally thought most people feel better if their sleep efficiency is above 90%. Anecdotally, I agree with him: I certainly feel better when my sleep efficiency is > 90% than I do when it's consistently running around 85%.

I use the morning Comments column to keep track of things like if I forgot to take the Belsomra or to make a note if I remember any prolonged periods of restlessness. I also make notes about whether aerophagia was a problem. On the rare occasions when I remember fighting leaks, I'll mention that.

You should also note what is NOT included in this basic sleep log: There's no spot to list the times of the wakes you remember. That's because trying to track the times of each wake would typically require you to both look at a clock AND make the conscious effort to remember what time the clock said. That can create a situation where you are worrying too much about your sleep during the night. If you are really interested in figuring out when the wakes happen, the easiest method I know is to just turn your CPAP off and then back on. The end of one session and the start of the next is clearly visible in the Sleepy Head data. This can be useful if you suspect that you are waking up a lot more than you remember waking up. (That DOES happen to me when my sleep maintenance insomnia is acting up.) You can handle this situation in the sleep log by either creating a NEW column (Number of CPAP wakes) or making a note that the Number of Wakes is based on the CPAP data. I've done it both ways in the past---it depends on what I am trying to figure out.

If you track the number of wakes that show up in your CPAP data, you may be surprised that it does not agree with the number of wakes you actually remember during the night. The difference can be explained in several ways. If you remember more wakes than the CPAP data shows, then the most likely explanation is that you didn't turn the machine off and back on at every wake. If the data shows more wakes than you remember, then the CPAP data indicates that you may indeed have more very short wakes than you remember. Is that necessarily a problem? Probably not if you are feeling pretty good when you wake up. If you're feeling lousy a lot of the time and the AHI is where it's supposed to be, then there's a chance that the number of wakes that you don't remember may be problematic.

Hope that helps.

_________________
Machine: DreamStation BiPAP Auto Machine
Mask: Swift™ FX Nasal Pillow CPAP Mask with Headgear
Additional Comments: PR System DreamStation and Humidifier. Max IPAP = 9, Min EPAP=4, Rise time setting = 3, minPS = 3, maxPS=5

xxyzx
 
Posts: 1545
Joined: Mon Apr 03, 2017 2:42 pm
Gender: None specified

Re: TERRIBLE Anxiety trying to breathe against pressures

Postby xxyzx on Mon Apr 24, 2017 7:23 pm

shanobeigh wrote: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. :( :( :(



you should be breathing with the pressure
and exhaling against a lower pressure

you may need a bipap instead of cpap
or change the pressures on the bipap

you need an auto type machine that times the pressures to when you need them as well as adjusting the length of in/ex hales to match you

User avatar
esel
 
Posts: 77
Joined: Fri May 20, 2016 3:35 am
Location: switzerland
Gender: Male

Re: TERRIBLE Anxiety trying to breathe against pressures

Postby esel on Tue Apr 25, 2017 3:50 am

Dear robysue,

Thanks a lot. This really helps :D

I have been adding columns, changing things around and got no structure in it.

I tried PM you and got stuck with not secured connection. It just won't let me post a PM :( Does this happen to others ?

_________________
Machine: AirCurve™ 10 VAuto BiLevel Machine with HumidAir™ Heated Humidifier
Mask: Forma Full Face CPAP Mask with Headgear
Additional Comments: AirCurve 10 CS PaceWave, Full Mask, sleepyhead, ASV Min EPAP 5 Max IPAP 10.4 PS 0.4-5.4

User avatar
robysue
 
Posts: 7440
Joined: Sat Sep 18, 2010 2:30 pm
Location: Buffalo, NY
Gender: Female

Re: TERRIBLE Anxiety trying to breathe against pressures

Postby robysue on Tue Apr 25, 2017 7:22 am

esel wrote:Dear robysue,

Thanks a lot. This really helps :D

I have been adding columns, changing things around and got no structure in it.

It is important to have some structure to the sleep log. My biggest problem at times has been trying to track too many things at once. That's why I posted my most basic log. I only add columns to this one if I have a specific idea of what additional data I want to track and why I want to track it.

But for dealing with insomnia, this log is a good starting place. Particularly if you also remember that one part of dealing with insomnia is to teach your body that being in bed means it's time to be asleep. The less time you spend worrying about the insomnia during the night, the more likely you are to sleep in long enough chunks to get a full sleep cycle in between the wakes.

I tried PM you and got stuck with not secured connection. It just won't let me post a PM :( Does this happen to others ?

I ran into the same problem trying to PM you last night. I just clicked an authorization to continue in spite of the unsecure connection message and it *looked* like the pm went through. Did you get it?

Alternatively you could *temporarily* post your email address here, wait for me to respond, and the edit your message to eliminate the email address OR give me written permission to use the my spam button to remove your post as soon as I see it.

_________________
Machine: DreamStation BiPAP Auto Machine
Mask: Swift™ FX Nasal Pillow CPAP Mask with Headgear
Additional Comments: PR System DreamStation and Humidifier. Max IPAP = 9, Min EPAP=4, Rise time setting = 3, minPS = 3, maxPS=5

PreviousNext

Return to CPAP and Sleep Apnea (CLICK HERE TO READ POSTS)

Who is online

Users browsing this forum: nickdanger1, NorthTexas_CPAP, TASmart and 33 guests