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DESPERATE & TERRIFIED-Need BiPap or Cpap HELP
#1
Last night after my usual crying and shaking and freaking out for 6 hours after i wake up terrified I tried to write a sane question to get help with my new bipap and humidity.  I think that was a bad idea.  I need to be more honest.

DESPERATELY need a bipap person or knowledgeable general cpap person to help me get though the next days, weeks, or months it will take for the "medical" or "sleep" people to help me.  We all know it can take forever.

REALITY of using Aircurve VAuto for a few weeks.  Tried every type and a few brands of masks - humidity either has NO moisture or drowns me (with the F&P ones). 

WAKING UP IS GETTING WORSE - bolt upright gasping for breath in a complete panic, take xanax (not working because it is a cpap problem not an anxiety one), cry and shake for over 3 HOURS every morning.  Finally am so exhausted and freaked out by 2 p.m that I gradually calm down and just sit and am non functional the rest of the day until I try again to go to sleep with the bipap. the numbers are ok - ahis are 2-4 but something is wrong with the humidity or maybe i am completely mouth breathing and fooling the machine somehow.

I DONT KNOW IF I CAN FACE ONE MORE NIGHT OF THE BIPAP

REALITY is the sleep studies were done by a 3 party contracted company with new technicians that knew so little they tried to put every mask on upside down!  According to results, they could eliminate the apneas with a BIPap around 13-17 pressure and could not quite get there with an apap, but I have no confidence they knew anything about either machine since they know nothing about any mask - nasal/pillow/face - could not figure out straps and insisted on putting every one on upside down - thankfully I have been on a cpap for years and tried many masks or I don't know what would have happened......

I have been checked for heart problems, labs, lungs, abdomen, etc. by medical doctors - no major issues. No major heart problems showed in the sleep studies.  I am 66 and overweight and have used cpap/auto for over 10 years with AHIS of 6-10 usually - somewhat tired but could function in daily life.  DID NOT wake up in a PANIC convinced the world was ending or CALLING 911 thinking it was a heart attack (hospital said it was not - it was a PANIC attack - had flown out of bed gasping for breath and could not control racing heart or catch breath)

**REALITY - my sleep "doctor" really isn't one I found out later.  My neurologist said they were starting a sleep center, and I was excited, and scheduled a sleep study since last one was 7 years ago.  Found out when the 3rd party called that the sleep "doctor" is NOT ONE - only a NURSE PRACTIONER with some sleep training, and they don't even have a sleep center or sleep technicians!!!!  STUPIDLY (because it takes Forever to get to a sleep doctor and get sleep study/results/etc), I went ahead and did the sleep studies.  She said Medicare required a base study without anything (crazy) and I do still have 60-80 episodes an hour.  Then the 2nd study was done with about half auto and about 2-3 hours on the bipap. I felt I slept ok with the bipap for those 2 hours but I don't know what variations they may have been doing to the machine while I was asleep.

IMPORTANT QUESTION:  Does someone without COPD or major lung or heart issues, with confirmed ok pressures of anywhere from usually 13 - 16 each night really need a BIPAP???  Is there any REMOTE CHANCE that this BiPap could be a HUGE NEGATIVE FOR ME because of some WEIRD REASON?? - maybe those other 3 settings on the machine that the sleep "doctor" knows NOTHING about and said to leave HOWEVER THE DME SET IT?? It scares me that she doesn't even know what all the settings on a Bipap are!!

SUMMARY:  I CANNOT Go on Like This - I Cannot face One More Night knowing what will happen in the morning waking and feeling that world is ending and drying and shaking for hours (I woke up at 8 and am Still Crying and Shaking).  If it wasn't for my husband making me eat something each day I would be in the hospital because I cannot do anything but sit in a chair and shake and cry and freak out for the last couple of weeks.  It started out pretty bad, but it has gotten worse and worse until now I am almost completely hopeless, feel "out of body", and can barely get to the bathroom or to my chair or to the bed where I Definitely do Not want to go anymore.  Maybe it's better to be a fairly functioning fairly sane person with not great numbers on an Auto than end up in the Hospital or Mental Ward where obviously they can't fix the problem - it's a BIPAP Problem or SETIING Problem or whatever, not a Physical or Mental Problem.  Anxiety meds used to work fine for me - they are not working at all - probably because that's not the base problem.

DOES THIS MAKE SENSE:  Go back to my S9 Autoset - old but works pretty much ok and just go through the awful process of finding a Qualified Sleep DOCTOR and probably getting another Sleep Study with Qualified Technicians to really verify if Bipap if even appropriate and then work with Qualified Doctor/Technician/DME to get the most appropriate machine.  It could well be the one I have, but since NO ONE understands the settings or is maybe not even trained well enough to understand sleep machines/OSA, that it could be set in some way that is triggering something awful in me despite "pretty" AHIs and causing my horrible wakeup up response. I can return the machine to the DME to be checked and I will, but don't have much hope with them - their "technician" doesn't seem to know anything or care - when I picked up my machine, she literally shoved it at me and said "here - what mask do you want?"  I said "could you at least show me where the "On" button is"!!!!!! She snorted at me, and said "well you use an auto - you can find it - what mask do you want?"  I was so Shocked, I was dumbstruck and said "aren't I able to try a couple and discuss fit (just to see if there was something that might work well for me), etc?!!!  She snorted, rolled her eyes, and said "if you absolutely have to, but I have people waiting to get their machines and it will take too much of THEIR time"  OMG. She had Literally allowed a total of 5 MINUTES to set someone up on Bipap that they had NEVER BEEN On!!! I just pointed to the ResMed Mirage nasal, took the machine and walked out, found the clinicians manual, checked the settings I understood - pressure ranges and support and left the other ones as set.  My "doctor" had changed the report recommendations of 9-25 with pressure support of 5, to 11-20 which I agree with - I have never (and wasn't in the study needing to go above about 18 briefly and 9 is too low.  The first few nights I felt I couldn't breathe against the support of 5 and gradually lowered to 2 which felt better (on the auto I only used an EPR of 1 and most people have said they found their pressure support on the Bipap to feel best at a similar level).


There are no good or even adequate Medicare network DMEs anywhere within hours of me, it that.  There is a great one that is non-Medicare, and I am going there asap and meeting with their Experienced Technician and paying to have them check the Bipap and trying different types of masks with him (with APAP and Bipap) and asking for advice and help in the meantime  (and paying for it) until I find a new ACTUAL SLEEP DOCTOR, and speak to them about the situation.  There are some in my area - takes weeks to get in, but if I could function with this non-network DME helping me, it really seems like the Only Logical steps to take to be able to function and not go completely insane from fear and desperation. Just looking at that Bipap sends me into a major panic attack now...


Anyway, for those who read this too long post, thank you for listening.  It helped me to put in writing what is Actually Happening and try to outline a plan of steps to get help. (I've been in Pollyanna mode - thinking each night will be better and putting up with horrible medical and equipment support, and trying to keep a positive attitude while falling completely apart each day)  I know I need local in-area qualified help and support to work my way out of this.  I think I remember being to change machines if necessary through Medicare, since they do it like a rental situation, and I will check on this in case they find it be best to return to an auto machine.  

Thank you again - you have helped with so many adjustments and sleep advice from your own trials experiences - I don't think all of you know how important you have been to so many struggling people out there.
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#2
Sloooooowwwwlllyyyyyy.......... the New Year is upon you. Sounds like that’s a good thing.

You’re ready to get to work? Roll up your sleeves. It’s homework time!

Right this moment. Whisk the DME stuff out of your mind. You can deal with that later. Most folks have DME issues and you’ll get plenty of empathy. The easiest mode is probably just to think of the DME as a supplies provider and nothing more.

Today. Round up a SD card to put in your machine. Get an SD card reader.  Load SleepyHead on your computer. Start recording data every night and post it here. You’ll see instrux after the signature line on muckety mucks’ posts.

If you can, get a little sunshine and a little walk, even if it’s just around the block. I believe this will help.

Tonight. You’ve got the SD card inserted in the BPAP, correct? And the card isn’t locked by mistake? Great. Now, spend some time looking at posts from other folks, especially those with BPAPs. Newbie posts tend to be particularly helpful. Pay attention to the posts with charts. Study how they get analyzed by other posters. You’re goal is to learn these skills so you can help yourself and steer folks to help you.

If you have trouble getting to sleep tonight after all that boning up, work on “sleep hygiene” and/or douse yourself in posts about humidifiers. I realize getting buried in computerese isn’t exactly “sleep hygiene”, but you may be able to get a jumpstart on the humidifier stuff so you can get swamp-free shut-eye. Unfortunately, humidifier stuff tends to be trial by error, but at least you can get guidance here about what to try next and some empathy when you’re working on fumes.

Tomorrow morning. Post your overnight SleepyHead charts in this thread, following board specs for layout etc.

Hope that gets you started.
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#3
First question would be why did they put you on the VAUTO? This is just my opinion but I'd go back to the S9 so your comfortable and let yourself relax a couple of days. While your doing that download sleepyhead and post a couple of charts here. The guidelines for doing so are in the links below. After you post your charts people here will be able to give you some solid advice.
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#4
It would be very helpful to see the sleep report and titration study. You should ask for copies of those reports. They are yours upon request based on patient rights in the HIPAA law. If you have Sleepyhead data that would offer some insight on why you are feeling the way you are. I'm sure you know your anxiety is way out of proportion to using CPAP or BPAP and is the biggest problem you have to overcome. We can help you get effective and comfortable treatment and to understand what is going on, but you really need to get a grip for that to work.

Let's start with whatever data you have for your Aircurve 10 Vauto machine. It is possible that it is causing some apnea that your CPAP would not. If that is a problem, we can set it up to be like your former CPAP machine if you know the old settings.
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#5
(01-01-2018, 01:27 PM)bluemom51 Wrote: ...Finally am so exhausted and freaked out by 2 p.m that I gradually calm down and just sit and am non functional the rest of the day...

I think the most important thing is to relieve the fear/anxiety ASAP, and to do that, I recommend using your old machine - just for tonight.

This will give you a chance to address the issues with the new machine.

You've received some great advice already. I'm going to highlight a couple that I really think would be helpful for today, right now:

1. Go outside and take a walk (breath deeply and calmly; look around and appreciate the beauty / sounds / colors / or whatever appeals to you).

2. Get setup with SleepyHead and learn how to post charts.

Once you have some data posted, it will give folks something to work with so they can help you.

Also, is it possible that ramp has been turned on? If it has, you might want to turn it off since you are accustomed to xPAP. Having it start at such a low setting may be messing you up.
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#6
Thank you for your supportive comments -spot on for sure. 

I have no real idea why they switched me to a Bipap. They said they could not get the apneas eliminated with the auto. My pressures are usually running 13-16. Don't have bad lung or heart problems. 

Another person had made some suggestions about controlling the flooding with the F&P nasal (my favorite) which I may try one more night. They said they also had problems with their Airsense 10 (same humudifier). They stopped looping the hose (mine is heated and covered) over the headboard and just laid it on the bed over their head creating a big loop going down beside their bed. It helped some in reducing the flooding. 

Maybe changing the room temp to ??
Maybe changing from Auto to Manual of ??

She said she was also having just too much condensation with this machine and is still working on it. 

I will never understand why it is dry as the Sahara with the Mirage nasal and it's spraying water like a hurricane with the F&P. They are both nasal masks and it is so freaking illogical. 

You are all correct about getting control over my anxiety about this and even if I can't fix this mess quickly I will concentrate on your suggestions. Quickly take action to move in the morning and get out of panic mode and crying and shaking. Like that saying - we can't control many things that may happen, but we can learn to control our reactions to them. 

I will try the hose adjustment tonight, and if a failure, will switch back to the S9 Auto while trying to find solutions. In a couple of days I will get and post the sleep studies and a couple of days of Sleepyhead graphs. I have learned how to do that. Maybe someone can see where something is out of whack, or maybe shows that I may not be a good candidate for bipap after all. 

You have given Hope and strength to get through this and find workable solutions. I'm very grateful for your kind support. Will post data in a couple of days. Thank you. Today is looking much brighter.
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#7
Based on your profile, your settings are 9 to 20 with 5 pressure support. Any idea what type of apnea or hypopnea events are occuring? I'm going to guess you are seeing more CA event...let me know if true or not. Meanwhile, get the Clinical Setup Manual for your machine at this link. http://www.apneaboard.com/adjust-cpap-pr...tup-manual Your settings can be accessed by pressing the control knob and home button at the same time. If you're feeling panic, then let's reduce the pressure support so your machine feels more like the S9 Autoset you know. Did you use EPR on the S9?
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#8
Keeping in mind that poor sleep can generate very high anxiety......
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#9
I do have the Clinicians manual and based on previous Auto usage and suggestions adjusted the pressure range to 12-19 - my average pressures on both the Auto and this Bipap are around 13-15 or 16.  The initial pressure support was higher at 5 from the sleep study recommendation. Sleep doctor felt too high and changed that on the prescription to 3.  I have reduced that to 2 because it felt more comfortable.  On the Auto I had ended with an EPR of 1.  

I will post the sleep studies and a couple of Sleepyhead graphs in a couple of days.  Very little centrals and the AHI's have improved to about 2-4 from about 6-10 on the Auto.  So really good "numbers" and really scary wakeup from sleep now.  Makes really no sense to me unless there are a couple of weird settings on the Bipap that aren't right for me.  I don't understand what those other settings are even for - maybe folks with lung or heart issues?  But overall don't see how I could have such good AHI's along with dreadful physical reactions on waking up. 

I actually wake up about 5 or 6, go to the restroom, don't feel too strange at that point - get back into bed for a little more sleep, and then when I wake up after that is when the panic, out of breath, terror hits.  I tried getting up at that first awakening and taking a nap later, but same thing happened when I woke up from the 1 1/2 hour nap - pure panic and terror. It's just all so strange.

Can mouth breathing cause all this mess?
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#10
Once you post some sleep session data, I'm sure we can figure it out. Sounds like your pressure support is in-line with CPAP now, so don't let the name spook you. I could replicate the settings you described on your S9.
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