Help, why is cpap suddenly not working?

[Missfurry]

Hi all,

Really hoping someone can help me because I am at my wits end. I was diagnosed 21 months ago with REM apnoea ( only stop breathing during rem). Therefore my ahi was low (11) but my sleep was so poor and my spo2 was dropping to 66 I was getting headaches, head fogginess etc. Now this happened following major abdominal surgery following sorted ovary and massive cyst (size of a water melon). Prior to the surgery I suspect I had apnoea issues but was ok- things just went downhill sleep wise post surgery, maybe because all my stomach muscles were cut, I dont know.

It took me 3 months to get a machine on the nhs, during which time I was so incapacitated I nearly lost my job. Eventully I got a dream- responds and after a couple nights trip with masks IT CHANGED MY LIFE. No I didnt sleep all night but I woke up maybe 1x and went straight back to sleep. I was like this until last october.

As I said the surgery I had really messed me up initially and I put on a ton of weight. By october I started to lose it. In total I lost just over a stone. In october I started to have sleep issues when the machine started dropping my pressure. Its an auto. The data still showed that although I dropped to 12.5 it had to go up to 18.5 during REM- at the time I went back to sleep clinic and assumed it was the sudden increase waking me up as I didnt have the headaches I got when my spo2 dropped.

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. All through this my ahi remains 0.6- 1.4: the tech said everything was fine coz ahi low.

however in the last 6 weeks I been waking up hourly. I have gradually upped pressure to 18 but still struggling, rang tech and they say its fine my ahi is low, tried to explain that doesnt matter as if I wake every rem I am having bad sleep- you dont have to wake 10x an hour to have bad sleep.

Also I am now waking up fully with headaches and basically having days where I have no energy to do anything. I am not depressed but seriously monday I just wanted to die I was so tired.

Tech says she will refer me back to the dr but it will take 3 months.

Any advice appreciated as I dont think I can continue like this anymore, and I cant go back to how it was the month preceding getting the cpap.

[ChicagoGranny]

Eventully I got a dream- responds

Its an auto.

I am sorry you are having such a difficult time.

Can you let us know the exact brand/model machine you have? You may have to look on the bottom of the machine - don't spill the humidifier water into the machine!

Normally, we like to find out if your machine is compatible with the free Sleepyhead software, and then see some reports.

[Julie]

Knowing your pressure settings would help a lot. When things change unexpectedly it is often due to either weight gain or loss - even a little - as your mask no longer fits the same, and your system needs more 02 (or less) to support itself. Where are you now in that place - you said you gained a lot (a 'stone' is 14 lbs btw for people here) but also lost, though you haven't gone into more detail.

[D.H.]

Yes, you need to check everything. What has changed? Leaks, higher or lower pressures (set or delivered), other medical issues, change in daily routine, etc. Note change in daily routine could be a new bed, new bedding or bed clothing, new pillows, etc. Also, make sure that you don't have any leaks.

Note that all automatic machines are data capable, so you should be able to use Sleepyhead.

[Julie]

NOT all autos are data capable... but then DH likes to be definitive when he's wrong.

[ChicagoGranny]

NOT all autos are data capable... but then DH likes to be definitive when he's wrong.

Speaking of wrong ...

Knowing your pressure settings would help a lot.

I started to have sleep issues when the machine started dropping my pressure. Its an auto. The data still showed that although I dropped to 12.5 it had to go up to 18.5 during REM- at the time I went back to sleep clinic and assumed it was the sudden increase waking me up as I didnt have the headaches I got when my spo2 dropped.

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. All through this my ahi remains 0.6- 1.4: the tech said everything was fine coz ahi low.

however in the last 6 weeks I been waking up hourly. I have gradually upped pressure to 18 but still struggling

[TedVPAP]

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.

[TASmart]

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.

What is a pressure higher than their normal pressure need?

[TedVPAP]

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.

What is a pressure higher than their normal pressure need?

Confusing perhaps so I will try to explain using numbers as an example. If during REM you need a pressure of 18.5, and during non-REM a pressure of 12.5 is fine, setting the min pressure to 12.5 may not be sufficient since the machine will not be able to increase pressure fast enough when needed. A min setting of ~15 may serve better. 15 is more than needed for most of the night but enables the machine to respond adequately when needed.

[TASmart]

If you had said that" in some cases a higher minimum pressure than you normally recommend" it would have been clear.

[Missfurry]

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

[Julie]

If you post SH data here we will interpret for you.

Why are you 'sure' you don't mouth breathe when asleep?

WHICH model of your machine do you have - there should be more words on top (or bottom) of the machine - there are very many models of what you named.

Are you also taking e.g. asthma meds (or other meds) when sleeping?

And sorry, it is still unclear now as to where you are in the weight gain/loss cycle and when did most recent changes occur? It would also help most here (who are in N. America) if you first 'translate' stone into lbs for us when referring to them.

[prodigyplace]

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.

[ChicagoGranny]

I am on a phillips Responics machine

Please complete your equipment profile including machine and mask - https://www.cpaptalk.com/ucp.php?i=prof ... pment_info
It will then show at the bottom of every post you make.

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

It only takes three or four minutes of mouth breathing with CPAP to cause a very dry mouth. You might want to try a dry mouth gel (not rinse) just before you start your CPAP at night. Do you take any medications with side effect of dry mouth?

Also sleepy head data confuses me although I do update it.

Since you have the data, could you follow Pugsy's instructions and post a chart of a typical night in this thread? Pugsy's instructions - viewtopic/t88983/Pugsys-PointersSleepyH ... Hints.html (These are pinned near the top of the forum index page.)

[ChicagoGranny]

It would also help most here (who are in N. America) if you first 'translate' stone into lbs for us when referring to them.

Come on, Julie, this is a global forum - https://www.metric-conversions.org/weig ... pounds.htm