Help, why is cpap suddenly not working?

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
rick blaine
Posts: 614
Joined: Tue Dec 15, 2015 7:30 am

Re: Help, why is cpap suddenly not working?

Post by rick blaine » Thu May 03, 2018 3:02 pm

Hi Missfurry,

You've already had quite a few suggestions on the way to help. I hope I can add a few more from a local perspective. (I'm in Gloucestershire, and as well as knowing what 'a stone' is*, I do know a wee bit about the nhs. :D )

1. I definitely think your case should be reviewed by one of the consultants. At Gloucestershire Royal, the sleep medicine department has grown, thanks to case-load, and is now almost 'stand-alone'. It's still officially part of Lung Function - but most patients only see the consultant once after the sleep-study, and thereafter it's one of the sleep physiologists or one of the specialist nurses.

Given that apnoea which is confined to REM sleep is relatively rare, and given your other recent medical history, I think another sleep study - one in the sleep lab - is justified. And, as I understand it, only a consultant can request that.

2. I note what 'the technician' said about a three-month wait to see the doctor again. I would have thought that, you being a medical professional, they might find their way to seeing you sooner. If they need a justification, it's worth remembering the NICE guidelines which say: if treating your sleep apnoea is critical to your job, you should be fast-tracked.

3. From what you say, your foundation trust hospital has standardised on Philips Respironics machines (in most of the UK, it's either them or the other major manufacturer, ResMed), and they've given you an auto-adjusting one - model name 'Dreamstation'.

That's a good sign - in some parts of the UK, the standard issue is still a fixed-pressure model - either from the Dreamstation range, or the previous generation of models.

On the whole, people do better on APAPs.

Having said that, your REM apnoea might be better treated overall with an auto-adjusting bi-level machine. Philips Respironics do make one, but since bi-levels cost approx 60 pc more than APAPs, an 'individual funding request' would most probably be needed.

Another reason why you should be seen (and soon) by the consultant. 8)

4. You mention that they've run out of humidifiers. I get that you're not convinced it would make much difference - but you'd be surprised. It isn't so much the increase in humidity (not in our island nation), it's the temperature.

You might ask if the sleep medicine department can just loan you one for a week - to see what it feels like. And if they still can't issue you with one permanently, there's nothing to stop you buying your own humidifier - which you can do direct from Philips Respironics UK. Cost about £120. They're in Chicester, and the phone number (within the UK) is 0800 130 0845.

5. You've done one thing right - you've found this forum. I'm a visitor here myself - but I can say the level of expertise is remarkable. I routinely pass on the web-address to my specialist nurses at my annual review - as a suggestion for their continued professional development.

* A 'stone' is a unit of weight measurement. 1 stone = 14 lbs.

TedVPAP
Posts: 975
Joined: Sat Jun 12, 2010 10:29 am

Re: Help, why is cpap suddenly not working?

Post by TedVPAP » Thu May 03, 2018 7:50 pm

prodigyplace wrote:
Thu May 03, 2018 9:41 am
TedVPAP wrote:
Wed May 02, 2018 7:15 pm
You should use sleepyhead to see what is going on.
Setting the minimum pressure high enough can be very important, especially for people who need a pressure much higher than their normal pressure need.
The sleep tech changed me to fixed and put me on 14, it didnt help so I upped it to 15.5 and while it wasnt perfect I managed.
Please READ before posting. They were moved to FIXED pressure from Auto.
Your chronology is correct and irrelevant. My comment was about the importance of properly setting the min when using auto. Switching to a fixed pressure below the need during REM is an obvious mistake. Proven by the OP.

_________________
Machine: DreamStation Auto CPAP Machine
Mask: AirFit™ P10 Nasal Pillow CPAP Mask with Headgear
Humidifier: DreamStation Heated Humidifier
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TedVPAP
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Joined: Sat Jun 12, 2010 10:29 am

Re: Help, why is cpap suddenly not working?

Post by TedVPAP » Thu May 03, 2018 8:07 pm

TASmart wrote:
Wed May 02, 2018 9:49 pm
If you had said that" in some cases a higher minimum pressure than you normally recommend" it would have been clear.
Thanks for the suggestion but I won't use your sentence since it does not make any sense.
Confusing. I think you understand the point - don't set the minimum pressure too low just because you can.

_________________
Machine: DreamStation Auto CPAP Machine
Mask: AirFit™ P10 Nasal Pillow CPAP Mask with Headgear
Humidifier: DreamStation Heated Humidifier
Additional Comments: AutoPAP 16-20, Ultimate Chin Strap http://sleepapneasolutionsinc.com/

TedVPAP
Posts: 975
Joined: Sat Jun 12, 2010 10:29 am

Re: Help, why is cpap suddenly not working?

Post by TedVPAP » Thu May 03, 2018 8:22 pm

Missfurry wrote:
Thu May 03, 2018 8:17 am
Hi all

Thanks for the replies. Not to be dramatic but seeing people genuinely trying to help and support actually made me cry- you can thank sleep deprivation for that, but it means a lot.

Also I am on a mac and it often changes the words I type so sometimes things dont make sense, so sorry, will try and proof read better. So to try and cover everything I will use bullet points.
  • I am on a phillips Responics machine- with the dream station softwear

    I started on auto pap which ranged from 12.5 to 18.5 initially and it was effective. Then I lost 1.5 stone and started having issues last october. AHI remained between 0.6- 1.5. TedVPAP, I also thought this was due to the pressure having to hike so high during the rem and that was why I went back and they changed me to a fixed pressure of 15. Again it was ok and I could function- but it wasnt as good as before.

    I then lost another few pounds over a couple of months and the problems unsurprisingly got worse so I gradually upped it to 18.5. But I am still waking up a lot over night when dreaming. I am waking bolt up right. Initially I didnt have the palpitations and headaches that I had pre pap but this week they have come back.

    my ahi is now more often over 1, last night it is 1.8- I think the issue is I seem to wake up when I apnoea which means my sleep is so broken. When you wake up hourly It is such poor quality sleep. All I want is 4 hours constant sleep. I can safely function on that.

    No massive leaks as far as I am aware

    my medical hx is asthma- well controlled, The massive twisted ovary and surgeries, and current back issue to which I am currently pain free. I am a nurse and dont feel any of this is actually contributing to the sleep issue

    No humidifier as the clinic doesnt have any free and I am not convinced it would make a difference. Although the last week I am getting a sore dry mouth again.

    I am sure I am not mouth breathing and find the nasal pillows comfortable
Hope I covered everything asked. Also sleepy head data confuses me although I do update it.

xox
According to the medical community, your OSA is adequately treated.
If you want to improve your understanding and your treatment, you must show sleepyhead charts.

_________________
Machine: DreamStation Auto CPAP Machine
Mask: AirFit™ P10 Nasal Pillow CPAP Mask with Headgear
Humidifier: DreamStation Heated Humidifier
Additional Comments: AutoPAP 16-20, Ultimate Chin Strap http://sleepapneasolutionsinc.com/

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palerider
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Re: Help, why is cpap suddenly not working?

Post by palerider » Thu May 03, 2018 10:01 pm

Anybody else amused by ted-n-tas arguing about which one of them makes less sense?

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