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[Health] Negative/Adverse Reaction to BiPAP Need Help
#1
Negative/Adverse Reaction to BiPAP Need Help
Hello everyone and thank you for your time and attention. I had posted the following message on Reddit and was told that I should seek help on Apnea Board. 

I'm having a really bad time with this whole CPAP/BiPAP experience and it really has me stressed out. I did a sleep test about a year ago, with terrible sleepless nights for weeks after, and I just had my device fitting today, wore it for a couple minutes as the technician set the straps (full face mask), and now I'm having what I feel like are breathing problems all over again - like after my sleep test.

It's a number of things that combine to make this an overall horrible experience for me, here are two big ones:

  1. I have such a hard time adapting to the pressure - I feel this sensation of drowning, when I first try to put it on and it freaks me out. It's like I'm waterboarding myself with air;
  2. After wearing the device, like even for a couple minutes while getting fitted today, my lungs feel wrecked. My breathing feels ragged and weak. I can't stop yawning. I've been burping a lot. I feel like I can't get air. I feel like I'm on the verge of an asthma attack and like there's something in my lungs that I just can't cough out. I really want to emphasize that post-device-wearing, I feel physically beat up. I don't think this is supposed to happen.
And now, I can't sleep. I dread putting this device on. I still feel physically and mentally drained and sick from my fitting today. I didn't have a problem falling asleep before this, but I can't now. I also noticed, while walking around today that I 'snored' while just regularly breathing. This is not typical.

I'm just so freaked out about the experience. I tried lying there in bed and now I'll feel like I can't breath. And then I start panicking.

Some Relevant Background:

I was prescribed a BiPAP (E0470) for my obstructive sleep apnea (full face mask). Pressure setting is 25. I'm 40 yrs old, male, 6'2" 230 lbs a little overweight. Have asthma and a deviated septum. Mouth breather. Been physically active most of my life, including a lot of sports into college, until having children in my early 30s, going back to school, and then dealing with sports injuries and a somewhat stressful 9-5 made me a bit sedentary. Caught COVID in April 2022, I was double-vaxxed before, and I feel like I have had long-COVID since then, and my breathing has been pretty fragile. I hadn't had an asthma attack since I was a kid, but I was starting to find that my childhood asthma seemed to have returned. Post-COVID, I have had pre-hypertension, pre-diabetes, been going in for all kinds of tests to figure out why I feel a general sick feeling most days.

After my quarantine, I did my overnight sleep test and it was a horrible experience for me. I recall just having the feeling of ragged breathing, shortness of breath, sleepless nights, for weeks after. My apnea was worse than it had been before. It felt like it took weeks for my breathing to get back to feeling like how it was pre-sleep test.

In fact, the worst of my current health conditions (listed above), really started to surface in the weeks after this sleep test. It's like COVID did a number on me, but the sleep test just exacerbated it all.

My Current Problems:

Yesterday morning, I went in to get my BiPAP fitted and the technician had me demo it. I had the hardest time getting used to the pressure. The technician had to significantly ramp down the pressure just to get me to be able to endure it - from 25 down to between 7 or 11. Again, it feel like I was drowning on air - I know it's a silly concept, but that's how it feels for me. And I only wore it for like 2 minutes.

Probably the worst part of this experience is post-device-wearing sickness - or what I feel like it is. When the device came off, I feel like I'm down one lung. I feel like it's so much harder to breath, like the atmosphere is suddenly so heavy. The feeling was such a shock that I immediately asked the technician if it's possible for your brain/body to form a dependency on the device. It felt like my lungs were starved of oxygen.

In addition, my lungs felt wrecked, beat up. My breathing felt ragged, like my inhale was weak and I couldn't take in air. I immediately kept yawning and it would go on like that for hours. I felt lethargic, drained, really weak, and sick. About a half-hour to an hour later, I kept having to burp. I have this feeling like I have a fist in my chest, upper ab, right below the sternum... like I have to give a big belch, but I just can't. I mentioned earlier that I noticed I would occasionally "snore" during non-sleep breathing - this is not typical for me. I also notice that when I yawn, I feel like the air is even more restricted going in. I feel like this is device-related. I remember feeling horrible like this after my sleep test and it took weeks to recover to pre-sleep test status.

It's been about 20 hours or so since I did my BiPAP fitting and I still feel these horrible feelings. I tried going to sleep and I can't. When I lay down, I feel like I have a weight on my chest and my lungs are having to work harder to inhale. As I sit at my computer typing this, I notice that I have to try to inhale deep because it feels like I'm not getting air. My blood oxygen readings on my Apple watch and my pulse oximeter show between 95%-100%. But, for some reason, I feel like I can't catch a breath. On top of all the physical problems I get left with, I have now developed some mental health issues.

I dread wearing the device. It freaks me out and I've never been this scared of something before - I hate feeling sick like I did post-sleep test and like I do now, post-device wearing. Just the breathing issues alone and this sick struggling feeling that I've been feeling all day, post-device-wearing, it has scared me into not wanting to wear it. It only took 2 minutes of wearing the device to make me feel this terrible.

And I really don't think claustrophobia is playing a part in this. I'm fine with wearing masks. The biggest problems is dealing with the drowning on air feeling (when trying to adjust to the device) and then this horribly persistent sick, wrecked, ragged, feeling that I get after wearing the device - which is, again, how I felt like after doing the sleep test.

Has anyone out there had a similar experience? Could my adverse experience have been connected to COVID?

Thank you.
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#2
RE: Negative/Adverse Reaction to BiPAP Need Help
Hi zuriaki!  -  :welcome;

First, the "E0470" is a billing code and not a particular CPAP make or model.  In order to better help, we need to know the exact brand and model that you have.  This will allow us to see if you can use the free analytical sleep software, OSCAR. By using a analysis software (if possible), will provide insight to aid in fine adjusting it to your needs.

- Red
Crimson Nape
Apnea Board Moderator
www.ApneaBoard.com
___________________________________
Useful Links -or- When All Else Fails:
The Guide to Understanding OSCAR
OSCAR Chart Organization
Attaching Images and Files on Apnea Board
Apnea Helpful Tips

INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#3
RE: Negative/Adverse Reaction to BiPAP Need Help
Thank you. Let's see... It looks to be a Philips DreamStation BiPAP Pro / Auto BiPAP. 

I've only tried it for a couple minutes during my fitting and could only endure it when it was ramped down from 25/21 to 11/7. And even then, I have had all these adverse affects after having it on for just those two minutes at mostly 11/7. 

Thank you again.
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#4
RE: Negative/Adverse Reaction to BiPAP Need Help
I believe you are feeling a combination of several real effects and side effects.  Including, at least: post traumatic stress, COVID lung recovery, and known side-effects of higher pressure PAP such as air swallowing, burping, uncomfortable lungs, air starvation.

it is natural to have post traumatic effects, especially in the case that you describe.  Fight or flight is real! You cannot be talked out of it.  But, you can talk yourself into calmer and then eventually resolve the trauma.

If we know the model (thank you) we can point you also to the manual you can use to set pressures that can be temporarily used to (1) regain trust in the positive pressure environment (2) prevent air swallowing and (3) allow you to drop off to sleep.  All will take time.

At this point, I believe what you are saying is you cannot even use it at the current settings when you are awake and sitting comfortably.

You need to get familiar with the positive effects of the treatment, and adjustments to the device settings can get you to a suitable starting point.

============================================================================================
It is usually asked of new PAP users to post the results of sleep tests, so please do that as soon as possible.  You will want to cover up or block out the user identification related data, like name, address.

QAL

by the way, if you were swallowing air, you have air in your stomach. And, if there is air in the stomach, you may also get air in the digestive track, so feeling bloated may be another symptom.

QAL
Dedicated to QALity sleep.
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#5
RE: Negative/Adverse Reaction to BiPAP Need Help
You're off to a good start.  You need to do 6 things.
1. Download a copy of OSCAR for your computer type. The download link is in the name and in the black ribbon at the top of every page here.
2. Make sure you have a good SD card, 2 GB to 32 GB in size. (Actually, I don't know the upper limit of the newer DS2 models)
3. Read the Installation Wiki: http://www.apneaboard.com/wiki/index.php...stallation
4. Read the links in my signature to help you get going.
5. Make sure the SD card is in your CPAP when you are using it. In order to get the detailed sleep data, the SD card HAS to be in the CPAP.
6. Update your profile to reflect your exact equipment. This helps when making suggestions.  Here is a quick link to your profile:
http://www.apneaboard.com/forums/usercp....on=profile


- Red
Crimson Nape
Apnea Board Moderator
www.ApneaBoard.com
___________________________________
Useful Links -or- When All Else Fails:
The Guide to Understanding OSCAR
OSCAR Chart Organization
Attaching Images and Files on Apnea Board
Apnea Helpful Tips

INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#6
RE: Negative/Adverse Reaction to BiPAP Need Help
(02-17-2023, 01:38 PM)quiescence at last Wrote: If we know the model (thank you) we can point you also to the manual you can use to set pressures that can be temporarily used to (1) regain trust in the positive pressure environment (2) prevent air swallowing and (3) allow you to drop off to sleep.  All will take time.

At this point, I believe what you are saying is you cannot even use it at the current settings when you are awake and sitting comfortably.

You need to get familiar with the positive effects of the treatment, and adjustments to the device settings can get you to a suitable starting point.

Thank you for your comment. I'm hoping I'm reading this correctly, but I believe the model# DSX700S11F. 

And yes, I just can't even use the device based on the current level. Just the couple minutes I was wearing it at a much lower pressure has left me feeling pretty beat up. Going on day two since my fitting and I still feel like I have "uncomfortable lungs," "air starvation," as you put it. 

Thank you again.
Post Reply Post Reply
#7
RE: Negative/Adverse Reaction to BiPAP Need Help
(02-17-2023, 02:22 PM)Crimson Nape Wrote: You're off to a good start.  You need to do 6 things.
1. Download a copy of OSCAR for your computer type. The download link is in the name and in the black ribbon at the top of every page here.
2. Make sure you have a good SD card, 2 GB to 32 GB in size. (Actually, I don't know the upper limit of the newer DS2 models)
3. Read the Installation Wiki: 
4. Read the links in my signature to help you get going.
5. Make sure the SD card is in your CPAP when you are using it.  In order to get the detailed sleep data, the SD card HAS to be in the CPAP.
6. Update your profile to reflect your exact equipment. This helps when making suggestions.  Here is a quick link to your profile:



- Red

Thank you. I'll get on this as soon as I'm able to get this device down to a manageable pressure. At the current pressure (25), I really can't bring myself to it... it's just too overwhelming and the after effects are still affecting me over 24 hours later.
Post Reply Post Reply
#8
RE: Negative/Adverse Reaction to BiPAP Need Help
Please list all your settings. We can help get it down to a manageable pressure.

- Red
Crimson Nape
Apnea Board Moderator
www.ApneaBoard.com
___________________________________
Useful Links -or- When All Else Fails:
The Guide to Understanding OSCAR
OSCAR Chart Organization
Attaching Images and Files on Apnea Board
Apnea Helpful Tips

INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
Post Reply Post Reply
#9
RE: Negative/Adverse Reaction to BiPAP Need Help
Once you post an Oscar chart, we will see the settings as well as the problems. I'm sure you are way over-titrated, and if you can get a graph onto the forum, we will see it right-away. Tutorials for Organizing Your Oscar Charts and Attaching Files are linked in my signature below. My guess is you were talking to Gideon on Reddit and he could be along any time now.
Sleeprider
Apnea Board Moderator
www.ApneaBoard.com

____________________________________________
Download OSCAR Software
Soft Cervical Collar
Optimizing Therapy
Organize your OSCAR Charts
Attaching Files
Mask Primer
How To Deal With Equipment Supplier


INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
Post Reply Post Reply
#10
RE: Negative/Adverse Reaction to BiPAP Need Help
you get to decide in the mean time what the pressure is that you can stand.
consider sitting up in a chair, and watching TV or reading a book, with the mask on. set a goal of xx minutes.
my guess is that the pressure band that will not cause issues with lasting pains or trauma could be fairly low.  
suggest for the time being you change your settings to PS of 3, IPAPmin of 6 IPAPmax of 7.  If you have IPAP too low you will feel starved for oxygen.
obtaining a result to post is going to be important in suggesting settings (once you can comply with keeping the mask on.)  
We are rooting for you.

QAL
Dedicated to QALity sleep.
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