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Frustrated with Complex sleep apnea
#1
Frustrated with Complex sleep apnea
Hello everyone. I just found this forum while searching for help with Complex or Mixed sleep apnea.
History:  For several years my husband has told me that I stop breathing in my sleep.  Following bariatric surgery in 08, the surgeon woke me to ask if I knew I had apnea  but not to worry cuz my dramatic weight loss would fix it.  4 months & 150 lbs later I was admitted to ER as I still wasn't able to eat solid food following 3 attempts by my bariatric surgeon to "stretch" the newly formed opening to my stomach.  2 months earlier, this same surgeon lost his privileges at both hospitals & I was told to find a new doctor.  After being admitted for heart issues related to my inability to take in food, I was sent to surgery to have staples removed.  Now, no bariatric doctor will see me  my weight loss stopped & i gained about 30# back.
I am also a chronic pain patient with many neck and back problems caused by a head-on collision in 86 for which I take the dreaded Opioid pain medication.  I have tried MANY alternate treatments with little to no success. 
Another tidbit is I went through menopause the month following my bariatric surgery and it is my understanding that menopausal women are 3x more likely to experience apnea.  It was following my menopause that I suddenly had high blood pressure   Even at 333# I had chronically low BP.  According to the 06 Mayo study, apnea can cause hypertension and hypertension can be a contributing factor to apnea.  Is this one of those chicken/egg issues? 
So, obviously, I still struggle with apnea, so last year I had a sleep study done which identified that I suffer from both Obstructive and Central apnea.  During this study, I was put on a regular CPAP with negative results. During my follow up with the Doctor, I was told that I suffered with both forms of apnea & would need a 2nd study using a different machine. 
That brings me to last night.  I went to the same location for the new study.  While talking to my tech, I told her of my prior study & diagnosis & asked what the difference was in the "new" machine as opposed to the CPAP I previously used.  She said they had only one kind of machine and my previous study probably didn't have enough time to increase the pressure sufficiently.  I asked a 2nd time as I was sure I was to be on a machine other than a CPAP.  She said I was wrong & proceeded to wire me up.  What followed was not only the worst sleep ever, but numerous panic attacks from being startled out of what little sleep I had by the tremendous amount of pressure being forced through my nose.  I tried a couple different masks to no avail & after 4½ hours of hell, I asked to go home.  I was informed that I needed 6 hours to complete the study and removing the CPAP wasn't an option.  I suffered thru & drove the 2 hours back to my home to recover & try to get some sleep. 
Today  I started doing some research on the various types of apnea and the machines that treat them. It sounds like I should have been given a VPAP with SV to use during my study. 
I guess my questions are directed to those who also suffer from a severe lack of sleep caused by CSA.  I am now more confused as it was my understanding that the VPAP with SV was supposed to work with your breathing & only increase the pressure when it recognizes an episode.  From numerous comments made by those diagnosed prior to 09, none of the newer, supposedly improved machines are responding properly.  After what I experienced last night  I am afraid to go thru being blasted awake by the dramatic pressure so many user's described.  On my post study questionnaire, I was asked if I would consider using a machine at home.  I answered yes with the stipulation "only if it works & it's something I can get used too". I desperately want to wake up feeling at least somewhat rested and maybe even experience a occasional dream. 
I feel like I am in an endless cycle.. I need pain meds to be able to function but they appear to cause me not to sleep properly, thus being in more pain.... 
In closing, I apologize for my babbling post, however, I felt the majority of it was necessary for you to understand my case as well as my extreme frustration. If there's anyone out there who can give me some guidance or share some positive experiences, I would greatly appreciate it.  Right now, I am so frustrated that I just don't know what to do. 
I thank you for taking the time to read this and thank those of you in advance who are willing to share. 

Cordially, 
FeelingLikeCaCa
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#2
RE: Frustrated with Complex sleep apnea
Welcome to Apnea Board. You are among a surprisingly large number of members that require an Adaptive Servo Ventilator (ASV). The two major machines that provide that therapy now are the Philips Respironics Dreamstation BiPAP Auto SV and the Resmed Aircurve 10 ASV (older models are the Philips System One BiPAP Auto SV Advanced and Resmed S9 VPAP Adapt). These machines work to treat the obstructive component of your apnea using and exhale positive pressure (EPAP) that is high enough to keep your airway stable. Of course with complex apnea, you also experience central apnea and hypopnea, and that problem usually gets worse with higher pressures and bilevel pressures without a backup rate that makes you breath. The ASV uses inspiratory pressure support (IPAP) when needed to make you breath, and to increase the volume of breaths. ASV works on a breath by breath basis, and no other machine is like it. Many of the members that use the machines here achieve near-zero apnea and hypopnea.

It seems your sleep clinic is either not qualified to to a bilevel and bilevel with backup (ASV) titration test, or received the wrong orders. You should immediately discuss this problem with your doctor as any CPAP test is a waste of time. It sounds like you are already working with a doctor that knows his stuff and just has to schedule a sleep test that demonstrates the efficacy of ASV in treating you. Using the machine is the easy part.

As you move forward, keep in mind that most people here using ASV seem to get better results on the Resmed which provides backup breaths using your normal breathing rate and volume as the target, while the Respironics may need more setting adjustments to get the backup rate to feel natural and work as well. There are exceptions, but that's my observation for ASV. Hang in there, it sounds like you're getting close, but need to contact your doctor about this error at the sleep clinic. Here is some manufacturer information on the ASV https://www.resmed.com/us/en/commercial-...0-asv.html And you can refer to this discussion to see the types of machines, what they are used for, the methods technicians should use to set the pressure. You may want to focus on the sections related to ASV: https://www.resmed.com/us/dam/documents/...er_eng.pdf
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#3
RE: Frustrated with Complex sleep apnea
That's quite the epic, M'Lady.  Wow.

I won't offer any guidance as I am still very early in my own learning, but I believe complex apnea can only be treated by expensive and complicated machines/algorithms found in ASV's (adaptive-servo ventilators).  A biPAP or straight CPAP is certainly not indicated in my understanding.  No wonder you had a horrible experience!!

Someone will be along to both commiserate and to help to bolster both your understanding AND your ability to insist upon reasonable and efficacious treatment.

Good luck to you.

[Edit - I see sleeprider has chimed in.  He's the guy you want in your corner.]
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#4
Video 
RE: Frustrated with Complex sleep apnea
WOW .. Just seeing such a quick and wonderful response helps me more than you know!  I've just started an email to the doctor who oversees the sleep center to express my frustrations and rescind the rave reviews I gave to last night's tech.  I guess I should have done my homework beforehand, but I made the silly mistake of trusting the medical field once again   I truly am joking (kinda), but I do really like the doctor there and hope they will work with me to get the correct study done before I spend more time, money and gas to make the 120 mile round trip only to be told I need a 3rd study done!
Anyway, you have very much impressed me! Thank you 
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#5
RE: Frustrated with Complex sleep apnea
Hi FeelingLikeCaCa and welcome to the Apnea Board.

We both have 2 things in common. We have complex apnea and have had some sort of bariatric surgery. Let's make it 3 things in the near future. You need to be successfully treated via an ASV machine.

FWIW: My version of the bariatric surgery was called a bariatric sleeve method; it involved the removal of about 70% of the stomach. I lost about 100 pounds at least until recent health issues reversed that some.

After that surgery, I still needed more help with the apneas that were better diagnosed as complex or mixed apnea. Yours and mine may differ somewhat, nevertheless the machine to take care of it is still an ASV or Adaptive Servo Ventilator. Sleeprider really knows what he's talking about in his post BTW.

I have the ResMed AirCurve 10 ASV and it really got ALL versions of my apnea under control immediately upon use. This is the one I would suggest you ask for by name. The Philips Respironics ASV is a close second in success, but as noted it needs a bit more attention to settings to be successful. Either machine can be very effective, and others here can and will assist in helping you to get the very best treatment from either one. I just know what the ResMed is capable of.

Coffee
Dave

I'm not a doctor in real or fictional life. My posts include opinions based upon user experience regarding CPAP therapy and should not be considered medically professional direction or advice. Even a 1,000 mile trip requires a good first step. My recommended first steps include getting good walking shoes, 1 great cup of coffee, and a good GPS.

Wiki Info for Beginners
Sleepyhead Chart Organization
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#6
RE: Frustrated with Complex sleep apnea
FLCC,

Sorry that you had the bad experiences and I hope things get back on track for your improving health.

I think that you have gotten off on the right foot by educating yourself about apnea in it's various forms. Knowledge is power and you are ultimately in charge of your own health.

As I hope you read through the forum, you will find many patient empowerment stories and I encourage you to get sharp on the information here and never settle for what the medical people want to just equip you with. Form your ideas on what you want for therapy and make them conform to your needs.

Welcome to Apnea Board!
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#7
RE: Frustrated with Complex sleep apnea
Make sure your sleep doctor is aware of all your medicines - some worsen CA.
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#8
RE: Frustrated with Complex sleep apnea
Hi and welcome to the forum. I second what has been said above about the Resmed ASV machine - it's wonderful. However it can (and sometimes does) impose a high pressure, but only if it needs to in order to stimulate your breathing. This is something you do get used to, although that feels impossible at first.

It sounds like that technician was sadly lacking in people skills and didn't properly explain what's going on. Here in Oz (and I suspect also in the States) many sleep centres don't use an ordinary machine but a special diagnostic one which can emulate all the other modes. So when she said there's only one machine, she was probably right. But she didn't clarify that the one machine can be made to behave like a whole range of different types. Here's Resmed's product page: https://www.resmed.com/us/en/healthcare-...ap-tx.html
DeepBreathing
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#9
RE: Frustrated with Complex sleep apnea
Just like to endorse all of these supporting contributors' comments in this thread.

Listening to the advice I got on my thread question
afib and sleep apnea 1 2 3 4 ... 10 )

poppypete

(particularly from Sleeprider as he guided me through my complex situation which includes Afib and delays in getting me across and onto the right type of machine), has been to my great benefit...

...as I became educated by these wise folk, and was eventually able to discuss intelligently with my cardiologist and sleep physician, why I needed to make a change of machine (to ASV), rather than wait for their final solutions, and go through more unnecessary stress (I'd had enough of that...and that's like the dog chasing his tail...increases frustration!!!)

It took time, but we got there I'm happy to report...

...and so that's my little contribution to highly encourage you to persevere with this difficulty of understanding your own situation.

These folk on the advisory area deserve medals!!!

As for which comes first, the chicken or the egg...I'm still working on that...as hopefully I'll pick up an ASV machine later today.

I've attached a screenshot of my first session result last night, and believe me coming from where Sleeprider picked me up, he can take the bow on this gold medal (for me) performance!!!

poppypete  Oh-jeez
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#10
RE: Frustrated with Complex sleep apnea
(06-07-2018, 06:57 PM)poppypete Wrote: Just like to endorse all of these supporting contributors' comments in this thread.

Listening to the advice I got on my thread question
afib and sleep apnea 1 2 3 4 ... 10 )

poppypete

(particularly from Sleeprider as he guided me through my complex situation which includes Afib and delays in getting me across and onto the right type of machine), has been to my great benefit...

...as I became educated by these wise folk, and was eventually able to discuss intelligently with my cardiologist and sleep physician, why I needed to make a change of machine (to ASV), rather than wait for their final solutions, and go through more unnecessary stress (I'd had enough of that...and that's like the dog chasing his tail...increases frustration!!!)

It took time, but we got there I'm happy to report...

...and so that's my little contribution to highly encourage you to persevere with this difficulty of understanding your own situation.

These folk on the advisory area deserve medals!!!

As for which comes first, the chicken or the egg...I'm still working on that...as hopefully I'll pick up an ASV machine later today.

I've attached a screenshot of my first session result last night, and believe me coming from where Sleeprider picked me up, he can take the bow on this gold medal (for me) performance!!!

poppypete  Oh-jeez

Pete, you're not supposed to be able to do that with a CPAP machine. Dont-know
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