Apnea Board Forum
1 month after CPAP. How I'm doing now (hint: not good) - Printable Version

+- Apnea Board Forum (http://www.apneaboard.com/forums)
+-- Forum: Public Area (http://www.apneaboard.com/forums/Forum-Public-Area)
+--- Forum: Main Apnea Board Forum (http://www.apneaboard.com/forums/Forum-Main-Apnea-Board-Forum)
+--- Thread: 1 month after CPAP. How I'm doing now (hint: not good) (/Thread-1-month-after-CPAP-How-I-m-doing-now-hint-not-good)

Pages: 1 2 3 4

1 month after CPAP. How I'm doing now (hint: not good) - Broomstick - 12-01-2018

I don't want to revive my old thread and rather summarize everything here to get everyone up to speed.

Sleep study: Severe 30+ AHI
Titration: N/A couldn't sleep.
Given APAP.
BIG problems adjusting to it. Came a long way from not being able to lay down at all with it.
I could not sleep for more than 30-45 minutes before waking up (with CPAP)
It would flag me for mostly centrals. 
It flags me for centrals while fully awake too.

Where I'm at now:
I got disgusted and completely abandoned the machine for a week or two (I really NEEDED that break) before seeing the sleep doctor. 

Sleep doctor was a scumbag. All he did was yell at me. "What do you want me to do??? What do you want me to do???". No interest in sleepy head. Said he already had the data and I didn't even use it enough. I know damn well that there was enough data to draw some kind of conclusion.

How long am I supposed to continue something thats not working? Are these problems likely to go away in time? I could have used some kind of a pep talk if that was the case. These questions were not answered because flash gordon was gone faster than I could say F-U.

I did manage to shake a prescription for an ASV titration out of him...only because I asked for it when he shouted "What do you want me to dooooooooo???"

So here I am with no help from anyone.

I started using the machine again. I have it set at a constant 9cm (because I find that most comfortable) with EPR off. I plan to try to raise it a little each night.

I still get flagged for centrals. And I still wake up. But I think I'm waking up no more than I do without the machine anyway. I THINK I can sleep for 1-2+ hours now with it. Hard to say because I get flagged for centrals when fully awake too. How the hell will I ever get an AHI of <5 if the machine is giving me strikes for all that time I remain awake before actually sleeping???

I don't know if I'm wasting my time with this machine if ASV or something else is what I need. Its a simple question and I was told that I would have to wait until DEC 2 before I can ask this question to a different doctor who hopefully is not a scuzzball. Apparently this CPAP thing is NOT that important to be on if I can wait all that time, essentially without CPAP, since I'm not receiving the proper CPAP benefit. 

The CPAP compliance is in the garbage now. I'm gonna call the insurance tomorrow to see if we can reset the scorecard considering all the problems I've had. If not, I have a whopper for them. Because I got that prescription for an ASV titration. So they can have fun paying for another sleep study and possibly a $3,000 machine. lol.

RE: 1 month after CPAP. How I'm doing now (hint: not good) - Apnea Infant - 12-01-2018

Hello Broomstick

I have read through all your previous threads so as to fully understand before any reply.

First off, when I started on this forum nearly 2 years ago now, I also jumped about all over the forum asking questions in other member's threads. I found the new thread button hard to even find. I was advised to start my own thread and then to keep to one thread as it would be easier for all to follow. All that was good advice. I believe you ought to have to keep to one thread for that good reason. Not many have the time or inclination to be able to read all threads by all. Good forum hygiene helps just like good sleep hygiene.

That all said, all of us came here in desperation-ok maybe not all in desperation. There are some who research well in advance even before their sleep tests and hence get success faster. That was not me. I was one of those who had suffered, snored for years before I was persuaded I have sleep apnea. My first 5 months were horrific and it was for all to see. Alright my situation is plain vanilla and I am lucky(after a fashion).

So we understand and I can read you are climbing up the wall. You clearly are suffering the impact of long term sleep deprivation which we mostly did before CPAP treated us back to health (relatively). However in order for the great and the good here to be on this journey with you and assist, you have to do your part too. I am glad you are now posting sleepyhead graphs but try order them in the ways suggested previously to show the information in order for the experienced here to interpret.

It appears you have centrals predominantly and an ASV titration is on offer. I wish you success in that and hope that you have enough hours at the test to make a considered diagnosis. As others have testified in this forum learning to use the ASV is also another learning process. All I can say is that I hope and pray that you will find the energy and tenacity from deep within to carry on with the CPAP currently with lower constant pressures to give you relief from the centrals till you start your journey of discovery with the ASV if that is deemed the right treatment.

I can only wish you all the best and as much sleep as possible.

RE: 1 month after CPAP. How I'm doing now (hint: not good) - Sleeprider - 12-01-2018

ASV titration may work out well, and be comfortable enough to sleep. If you can have a sleep aid prescribed to enable you to sleep during the test, I like your odds better.

RE: 1 month after CPAP. How I'm doing now (hint: not good) - Big Guy - 12-01-2018

So sorry to hear that you are having trouble adjusting. I don't have the experience or knowledge to offer any advice or tips. 

I do hope that you stick with it though and things get better for you. I've read thru your past posts and am aware of the problems you are having.

Give it some more time, and dig deep within yourself and stay determined.  Bigwink

RE: 1 month after CPAP. How I'm doing now (hint: not good) - Lowhypopnea - 12-01-2018

My VAMC (Veterans Affairs Medical Center) CPAP tech is slowing raising my pressures to lower my AHI's.  I started at 8 based off a sleep study.  Then I was raised to 10.   A month later it was 11.  I am now at 12.  And she is watching for centrals as I do all this.  She mentioned that the higher the pressure the greater risk there is for having Centrals.

RE: 1 month after CPAP. How I'm doing now (hint: not good) - SarcasticDave94 - 12-01-2018

Hi Broomstick,

I've been pretty much in the same situation a few years ago, where the Doc didn't seem to care, the therapy seemed to be a waste of time and effort, and feeling frustration to the extreme.

I agree with the assessment from others that ASV can help. I know what ASV therapy can do, and will do, if the settings are optimized to the individual.

One thing you and I will disagree on is this statement from you "Apparently this CPAP thing is NOT that important to be on if I can wait all that time, essentially without CPAP, since I'm not receiving the proper CPAP benefit." Admitted, you likely mean specifically CPAP as a device whereas I'm referring generically to CPAP treatment which I say is important. Since you have received a diagnosis of sleep apnea, treatment is important. The argument could be I'm just splitting hairs, and I probably am to a degree. Nevertheless, hear me out on my angle on this.

I'll assume you want successful treatment with the correct machine. If so, you must follow the accepted process to attain your goal. It sounds like you have thus far. But it's not over. You'll need to find in yourself a strength and commitment to see this to the end. If you feel you want or need an ASV machine, you'll need to make it happen. Your next step is likely a BPAP machine, where if you're truly a candidate for ASV, you'll have to fail on the BPAP too. You'll likely need to subject yourself to more sleep studies. You'll need to subject yourself to the insurance company requirements whatever they are if you want them you pay.

FWIW When I was on the BPAP, my doctor had asked why I was using it still after he'd just said a few days beforehand to keep using it. I'm saying that because you'll have to be determined enough to reach your goal by enduring silly doctors, DMEs, and even silly insurance requirements. I'm not suggesting nor implying you don't stick to your guns and goals. But you have to play by their rules to reach your goal.

Helping you reach that goal is what we're here for on the Apnea Board. Keep posting Sleepyhead charts, assuming you've done so already. We'll help as you do what you need to as well, and then you'll get what's needed.


RE: 1 month after CPAP. How I'm doing now (hint: not good) - mesenteria - 12-01-2018

Yup, I'm with the others.  Nobody can do the sleeping for you.  None of us can submit to the assessment process on your behalf.  That's all up to you.  You have to be part of your own cure.  As Tom Cruise said in that movie, "Help me...to help you."  Do your part if this matters at all to you.  Even the truly horrible stuff that you dread.

Anyone remember getting a vitamin A shot in the buttocks?  YoooouuuuUUUUUUCCCHHHHHHH!!!!  To add insult to injury, I was only ten when I got mine, in hospital, and the buggers woke me up from a deep sleep near midnight to administer it.  

Nothing good comes from little effort.

I like Sleep Rider's suggestion that you may do somewhat better in your sleep lab assessment if they would consider administering you a soporific.  Even a cold medicine for night-time might help, but I'll leave that to you and to your handlers.  If you could relax, and WANT this to work, you might be able to shake off the anxiety or playing strange, or whatever it is that prevented you from falling asleep last time.

Keep in your back pocket that all of us have had to go through this if we wanted both our doctor's understanding and alliance in our remediation, but also for our insurers to agree to cover part of the costs.  Few of us slept particularly well, but well enough.  Happened to me, thankfully.

Think positively.  Nobody wants to stand in your way here.  They do want to help.  They thrive, as professionals, on success, even if it isn't quite what you think of as success.

RE: 1 month after CPAP. How I'm doing now (hint: not good) - Lowhypopnea - 12-01-2018

This may be of interest to you.

Adaptive Servo-Ventilation (ASV) Therapy for Central Sleep Apnea

Posted by Kevin Phillips
Central sleep apnea (CSA) differs from obstructive sleep apnea in that, instead of an obstruction causing breathing to become shallow or stop periodically throughout the night, the brain fails to send signals to the respiratory system to instruct it to continue breathing during sleep.
Whereas obstructive sleep apnea (OSA) is a physiological problem in which the upper respiratory system becomes blocked by muscles and tissues in the throat and mouth, central sleep apnea is a neurological problem that can have many different causes including other underlying medical conditions, diseases, and even from taking certain medications.
To help patients with central sleep apnea continue breathing freely and easily through the night, a different kind of positive airway pressure device is needed for CSA's unique symptoms: the adaptive servo-ventilation machine (ASV).
 How do Adaptive Servo-Ventilation Machines work?
ASV machines look nearly identical to other positive airway machines such as CPAP, APAP, and BiPAP machines and function in a similar way.
All of the various PAP machines, including the ASV, deliver pressurized air from a motor that draws in air from the room, pressurizes it to specific settings for the patient, and delivers the air to the patient via a hose and a mask to keep the patient breathing steadily throughout the night.
CPAP machines blow a steady, single fixed pressure of air that keeps obstructions from causing apnea events.
APAP are set to have a range of pressures with a minimal pressure and maximum pressure that it fluctuates between to deliver the perfect pressure for each individual breath.
BiPAP machines are for patients with high pressure needs and offer two pressure settings: a pressure for inhalation, and a pressure for exhalation. This allows the pressure delivered from the machine to blow air at a lesser pressure during exhalation so the patient doesn't feel as if they're fighting to exhale against the incoming pressure. BiPAPs also have a feature that can tell how many breaths per minute the patient should be taking, and if the time between breaths exceeds the set limit, the machine can force the person to breath by temporarily  increasing the air pressure.
How are ASV machines different?
ASV machines are a little different than other PAP machines. To begin with, most other PAP machines are used primarily in treating obstructive sleep apnea. ASV machines on the other hand are meant to treat central sleep apnea (CSA), mixed sleep apnea, and also Cheynes-Stokes respiration ( an abnormal pattern of breathing characterized by progressively deeper and sometimes faster breathing, followed by a gradual decrease that results in an apnea event).

Patients who either have central sleep apnea, or begin to develop mixed sleep apnea after treatment for OSA gives rise to CSA events, patients will sometimes end up on ASV machines once BiPAP with back-up respiratory rate has first been tried and failed. ASV is often the last line of defense in treating CSA and mixed sleep apnea.
The key difference in ASV therapy is that it provides support to regular breathing. It uses an algorithm which detects significant reductions or pauses in breathing and intervenes with just enough support to maintain the patient's breathing at 90% of what had been normal prior to decreased breathing.
The algorithm is based off a set rate of breaths per minute that the patient should be taking. When the patient's breathing dips below these rates, the ASV delivers just enough air pressure to keep the patient breathing regularly.
"The ASV machines differ from other PAP machines in that the pressure being delivered to the patient is not as important as the amount of air that the patient is receiving," says Cori Murphy, RPSGT for Alaska Sleep Clinic.
Even when the patient's breathing is stable the ASV machine acts as a back-up support to help keep the airway open just enough to prevent obstructions, which  provides a 50% reduction in the physical work of breathing.

Who benefits from ASV machines?

  • Patients with central sleep apnea after BiPAP has failed to reduce rates of apnea/hypopnea events.

  • Patients who begin to develop mixed sleep apnea after starting CPAP, APAP, or BiPAP therapy for OSA.

  • Patients with both OSA and CSA in which 50% of the sleep study shows central apnea events.
Who may not benefit from ASV?
A recent study has shown that ASV may be harmful in patients with chronic heart failure and with a reduced left ventricular ejection fraction (LVEF≤ 45%).
For this particular group there is a 33.5% increased risk of cardiovascular death, compared to control patients who are not on ASV therapy, compared to control patients who are not on ASV therapy (absolute annual risk 10% in ASV patients vs. 7.5% in control group).
Before beginning ASV therapy make sure that your physician is aware that you may fit into this group. Alternative therapy will best be determined by the physician.

Do Patients still need a Titration study for ASV?
Even though the machine has an algorithm that detects breathing patterns in patients, the machine still needs to be calibrated to the patient's individual breathing needs. This includes finding the patient's minimum and maximum pressure support settings that the algorithm will fluctuate between to find the perfect amount of oxygen support.

RE: 1 month after CPAP. How I'm doing now (hint: not good) - Apnea Infant - 12-02-2018

Hey Lowhypopnea

Thats great information. It is really clear and easy to digest and understand. Thanks for sharing it.

RE: 1 month after CPAP. How I'm doing now (hint: not good) - Lowhypopnea - 12-02-2018