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+--- Thread: [CPAP] Guidance required, 10+ months and no progress! (/Thread-CPAP-Guidance-required-10-months-and-no-progress)
Guidance required, 10+ months and no progress! - antstephenson - 08-17-2017
Hi guys,
So a bit of background:
I've been using a CPAP since last November. I say using, but what I mean is failing miserably. According to my Doctor I have a pretty severe case with around 28 incidents per hour. I'm quite a sensitive sleeper so I've spent the past 8-10 months just trying to fall asleep with the mask on. The full face mask didn't really work for me, it leaked badly and distracted me (I think it was due to the high pressure).
Recently my Doctor recommended a nasal mask, I'm able to fall asleep with ease, but I'm still waking up after only an hour, I try the mask on every night and it's consistently waking me back up. Some mornings I wake up and the mask is on the floor, I'm not sure what's going on. I recently got a chin strap, as I thought it was due to the air escaping through my mouth, but this didn't help either.
As you can tell, the progress I've made is quite disappointing, since a lot of time has passed. I'm currently living in the UK and utilising the NHS, whilst it has it's merits of being free, it can be somewhat slow due to poor funding in certain areas. My clinic doesn't even man the phones, they take only voice messages and emails and a typical response time is somewhere in the region of 3-5 days and appointments are also 2-4 weeks. This is why I'm here today, I'm getting really frustrated with not making a lot of progress and my mood dwindles and I'm worried for my health.
So, I'm not too familiar with the terminology (AHI etc), but I'm currently using a Resmed S9, my starting pressure is 4.0 and my set pressure is 9.8. Today, my doctor (via email) recommended we increase the pressure, I have an appointment next week and would like to try this before then, to avoid wasting an appointment.
So, question 1) whats a safe increase to make on the pressure? I'm aware of the clinical menu on my machine, whilst I've not tried to make any adjustments out of worry of making the wrong adjustment.
My other passing thoughts are, is this machine suitable for me? when I'm conscious I realised recently exhaling is quite a chore and when I'm asleep I don't imagine it does me much good to want to keep the mask on. I read online BiPAP is another option for people who have high pressures, is this relevant to me? I'm not even sure if in the grand scheme of things my pressure is considered high.
Any help would be appreciated, I can also answer any further questions if there's something I've missed.. :-)
P.S hello everyone!
RE: Guidance required, 10+ months and no progress! - OpalRose - 08-17-2017
Could you clarify which S9 you have?
Is it ResMed S9 AutoSet, S9 Elite or S9 Escape?
I'm assuming it's the Elite as the Escape is not data capable.
Your profile says you are not using software. We can help with this as long as your not using the Escape model. Do you know what your current AHI reading is?
As far as pressures, 9.8 is not high at all. If you know how to get into the providers menu, let us know exactly what your machine is set at. And while your at it, I would eliminate the ramp or at least move it up to start at 6 for 10 minutes.
RE: Guidance required, 10+ months and no progress! - antstephenson - 08-17-2017
Hi!
Thanks for the quick response, upon inspection I'm using the Escape. I'm able to get into the clinical menu that looks a bit like this, here's some pics of the settings:
https:// ibb.co/h9oeZv
https:// ibb.co/dtPa7F
(I can't post links because I didn't have 4 posts, so had to separate the addresses a bit)
I've had the ramp turned off, actually it was the reason I was able to fall asleep in the first place, not worrying about how long I had left before the pressure went higher. Now, I'm used to the pressure, without it on and I can fall asleep relatively easily.
I also realised I didn't answer your question about the AHI, I'm really just coming into the more technical side of this so I'm not aware of what mine is yet. I guess I can get this from the doctor on Monday?
RE: Guidance required, 10+ months and no progress! - OpalRose - 08-17-2017
The Escape is what we call a "brick." There is no way it can give you any useful data to help with your therapy. I have to wonder how your doctor can even tell you how you are doing. Mostly, you have to go by how you feel.
If the machine doesn't show your AHI reading, you should ask your doctor. Also, ask him what type of Apnea events you are having.....obstructives, hypopneas, Clear Airways?
From what I see in the links you posted, the ramp is on and starts at 4cm for 45 minutes.
It looks like EPR is on and set to 2.
You may want to talk to your doctor about upgrading to a data capable machine, like the S9 AutoSet or the S9 Elite. It will be to your benefit to have a machine where you can track your therapy.
RE: Guidance required, 10+ months and no progress! - antstephenson - 08-17-2017
Hi,
That setting is for allowing the user to set it up to 45 minutes, I actually have it turned off in the patient front-end menu. I've been experimenting with the EPR, what do you think of the level it's on? I'm not full aware of what it's for either, I'm fairly sure it has 1->3 in options for that setting. I think it's a part of the reason I'm still no-where close to this being resolved after close to a year (in a few months), my checkups are essentially me speculating why I might still be awake and why it's not working for me at all.
This is a NHS funded machine, so I'm not sure about my options re. upgrading, I can certainly discuss it on Monday. In passing, my doc has suggested there was a somewhat limited set of masks and accessories available for free, and if I wanted anything else I would have to fork out the cash and buy it on my own from another supplier, whilst I appreciate it's my health at stake, I'm a little bit concerned about buying them to find they aren't good. I suspect the same goes for the machines, although I'm not quite sure.
Do you think I should try and increase the pressure? I'm wondering what a reasonable and safe increase would be? I've just tested 12, it seemed OK, weird feeling the force of the intake, I don't know if I'm just used to the 9.8 but it doesn't appear to me to force any air down my airway.
Thanks again!
RE: Guidance required, 10+ months and no progress! - OpalRose - 08-17-2017
EPR (Exhale Relief Pressure) will lower the pressure by 1, 2 or 3cm when exhaling, depending what it is set on. This is a comfort feature, as some folk have issues with exhaling against pressure. You can try the different settings to see what feels best.
I hesitate somewhat to tell you to increase pressure, but if your doctor suggested it, did he say what he would raise it to?
When we suggest to folk to adjust pressure settings, we are basing that suggestion on the data we see. Unfortunately, your machine can't give us that data, so you will have to go by how you feel.
With a current setting at 9.8, increasing it to 12 was a big jump and should be taken slower.
You should not feel air forcing down your Airway.
Since you have no data to go by, write down how you feel each day.
In time, when you are able, you will need to give some consideration to a data capable machine, even if it means buying out of pocket.
As far as masks, it's a very personal issue. What feels right for one person could be bad for another.
Although you are not new at this, here is some information that may help.
http://www.apneaboard.com/forums/Thread-New-to-Apnea-Helpful-tips-to-ensure-success
http://www.apneaboard.com/forums/Thread-CPAP-Machine-Choices-read-this-before-you-accept-a-new-machine
RE: Guidance required, 10+ months and no progress! - antstephenson - 08-17-2017
He hadn't suggested any values as typically its done in-house during an appointment. I've emailed back and hopefully i'll get a reply on the suggested increase, for tonight, I might increase it slightly and see if there's any change. In short, I feel awful every day, I only get 1 hour (+/- 10 minutes) of use out of the machine each night.
RE: Guidance required, 10+ months and no progress! - antstephenson - 08-17-2017
Also, just out of curiosity, are there a list of machines that would be more beneficial to me? I'm looking on the UK supplier website that was stickied.
I could make some suggestions on Monday to my Doctor, but if not, possibly purchase one myself.
RE: Guidance required, 10+ months and no progress! - OpalRose - 08-17-2017
(08-17-2017, 03:03 PM)antstephenson Wrote: Also, just out of curiosity, are there a list of machines that would be more beneficial to me? I'm looking on the UK supplier website that was stickied.
I could make some suggestions on Monday to my Doctor, but if not, possibly purchase one myself.
Since your are used to using a ResMed machine, it would make sense to upgrade to the AirSense 10 AutoSet. There is also the Phillips Respironics DreamStation Auto.
If you are buying yourself, you may want to check out #Supplier #2 from the Supplier list above. They have good low hour used machines and new open box 0 hour units. You will have to check on shipping costs.
I think you will have to resolve your mask issue to see improvement.
http://www.apneaboard.com/wiki/index.php?title=Mask_Primer
Also, read the links I posted above.
RE: Guidance required, 10+ months and no progress! - trish6hundred - 08-17-2017
Hi antstephenson,
WELCOME! to the forum.!
Hopefully, you are able to upgrade to a fully-data capable machine, so you can get help.
Good luck to you and hang in there for more responses to your post.