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[Treatment] In need of guidance.
#1
In need of guidance.
I'm feeling quite desperate about my treatment. I've been on Apap for over three months. Initially the pressure was 4-20 with AHI between 8 and 23, I saw the technician in march who said she was the only team member on that day. She said I had cheyne stokes but then couldn't say what that meant. She said to leave the pressure as it was. Later I changed it myself to 9-12 and my AHi went from 1.5 to 8. I eventually saw the consultant a few weeks ago and he suggested to change it to 10-20. I said I was concerned about the clear airway apneas and the periodic breathing being between 10 and 40%. He said not to worry as it's an effect of the untreated obstructive apneas. (I had an ablation for atrial fibrillation 4 weeks ago and I have no heart failure or other issues). He also said I only have supine dependent obstructive apnea and no csa ( a doctor in Spain 4mo this ago, after doing a polysomnograph, said I have csa) this doctor dismissed this and even though I don't sleep on my back (confirmed by my partner) this doctor simply said I was wrong. Since the Chang in pressure my AHI has been very variable after a few days of 6/7/5 I had an AHI of 0.8 and 2 and 1.4, then it's gradually increased again to 7/5/8/ and recently have been 13 and 11. I saw the technician today to get a humidifier to go with my dreamstation and asked him what I should do and what the consultant had said. He said he could offer no advice and to wait to be called by the consultant again. I must say I'm dismayed by their lack of explanations. Surely my AHI should be below 5 but he says mine is fine and not to worry. I'm worried because I'm not sleeping and if my apnea is not optimally treated my atrial fibrillation will come back. I really don't know what to do and feel this clinic don't know what they are doing. Any suggestions what might be going on?
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#2
RE: In need of guidance.
Hi garywych,  

i'll have a go at this...first, there is a lot of conflicting numbers/reports in your post so I am confused a bit.  being able to see a summary report would help a lot.  

From what I can gather it looks like APAP isn't correcting the apnea optimally for you.  ask your supplier if you can be switched to an auto bipap.  you should be able to do this without another sleep study as you've proven that auto cpap didn't fix your issues.  Depends on if your insurance allows this.

The high percentage of periodic breathing  is likely the source of your higher AHI numbers.  Bipap is the next step to take in your titrating journey.  If that doesn't work then its back to the sleep lab for titration on bipap s/t or asv.  I have found that ASV works best at fixing the periodic breathing.  Unfortunately, you have to prove to insurance that steps 1(cpap), 2(bipap), 3(bipap s/t), 4(asv) won't work.  They won't let you jump steps and start at 4.   

I'm not familiar with the processes over seas so you'll have to do your best to work with your doctors and dme company.  

If you could get your detailed download to us, we could get a better picture of what's what....
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#3
RE: In need of guidance.
Upon rereading some of your old posts just now, I request you post your real current settings - min pressure, max pressure, whether you are on CPAP or on APAP mode, whether you have Aflex or Cflex on and setting of [off, 1, 2, or 3].

Then we will have a starting point. Again.

QAL Rolleyes
Dedicated to QALity sleep.
You'll note I am listed as an Advisory Member. I am honored to be listed as such. See the fine print - Advisory Members as a group provide advice and suggestions to Apnea Board administrators and staff concerning Apnea Board operation and administrative policies. Membership in the Advisory Member group should not be understood as in any way implying medical expertise or qualification for advising Sleep Apnea patients concerning their treatment.
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#4
RE: In need of guidance.
Oh boy. I can see why you're frustrated! You are in the right place here, and you'll get great advice.
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#5
RE: In need of guidance.
Garywych, please download the free SleepyHead program.  It will help us to know exactly what settings you are using, including Flex settings.  It appears you are now on auto CPAP at 8-10 pressure and getting variable results, with mainly CA events and some periodic breathing.  It matters what kind of events are being counted in your AHI. It could be that you have some positional obstructive apnea that would respond to a different recommendation than if your problem is central.
Sleeprider
Apnea Board Moderator
www.ApneaBoard.com

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#6
RE: In need of guidance.
I'll try to download sleepyhead data tomorrow if I can get my head around it. I don't know what most of it means. I down loaded sleepyhead a few days ago. My pressure is at 10-20 and all other parameters set to off. The SD card was locked when they set it to 10-20 so if I change anything the SD card over rides it a resets to what they set. I can only change settings if the SD card is left out. ;-(
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#7
RE: In need of guidance.
It's apap, min 10 max 20, culex and a flex are off as is mask type.the machine is a dreamstation. It's been locked on the SD card. I can alter settings in therapy mode but as soon as I put in the SD card it resets to what they set it at.
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#8
RE: In need of guidance.
They only offer CPAP and apap at this clinic. If I need further treatment they say they would have to transfer me to another hospital. I'm really not happy with them. They just shrug when I ask them. The consultant said I don't trust their approach because I was asking questions. I said how can I trust you if you don't explain anything to me and do t believe me when I say I don't sleep on my back. He simply said well this isn't all we have to offer. I'm frustrate don't and think I'll set a complaint and investigation on motion. I'm a nurse myself and find their approach highly top down and disempowering.
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#9
RE: In need of guidance.
Ok today I'm going to try to get my head around downloading sleepyhead data to post here, lol I'm rubbish at doing this kind of thing. What I think I see from DreamMapper is that when the AHI is higher the 90% pressure has gone higher the higher the AHI. And when the AHI has been lower generally the pressure has not gone above 11. But at higher AHI it's more like 12.3 etc. It rarely records leaks but I do get 2-7 total disconnects. Currently I'm using the brevida nasal cushion with chin strap and tape my mouth shut. But even with this set up I'm sometimes getting ultra dry mouth.They gave me a full face mask when I saw them a few weeks ago but it really hurts. When I told the technician this he said they didn't have any other mask that would fit me. They gave me a small but he insists the medium would be too big. I'm medium in everything else. I asked if I could try a medium and he said no it would be too big! I feel like I'm being difficult with them but I really am not, I'm just scared and frustrated. I'm feeling like there is nowhere to turn.
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#10
RE: In need of guidance.
hello. ive managed with some help to copy and post some fotos of sleepyhead data. ive done two summary fotos and two days of detaikled data. on with an AHI of 8.6 from last night and one with an AHI of 0.8 from a week or so ago. hope it makes sense. this is a steep learning curve in both cpap and online technology for me lol. 
also i put my humidifier onto my dreamstation last night and when i truied to sleep it felt like i was suffocating as if i could not get enough air from the machine. it had also gone completely silent as i usually can hear the coming and going of my breath. it felt like the pressure had dropped. i removed the humidifier as wasnt sure wht to do and it seemed the pressure increased agai. it said 10 in both instances. fiddled with it this morning and did test mode on it and seems ok now. anyway i hope the data below says something.
thanks in advance. gary Thanks

[Image: 6ZWHAp2aU90ra8j-8EyGYkyrPbFZDQ60BJJOyXnh...78-h662-no]
[Image: -I9VfnZnS9yw9gGx5pzIKAxx0G0yG1pe5-EWmL74...78-h662-no]
[Image: EN_TYrSDNs8Th2HAaa5BsHRa1FtaydNg1E3f3hJE...78-h662-no]
[Image: 0B6UIffUJjTTvyJKIRade-pcwlwMnRriCnrkEA9X...78-h662-no]
[Image: FBsL1HBR8buGaFkaHZE71bWBoaM8x5vWb73krcN7...78-h662-no][Image: s0PpdoPLA2v7-q27_FvC3y8Q_-9SO4xSmR3uPcl3...78-h662-no]
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