Hello from the UK!

My name is Tim and I have been a pretty unwell for approximately 15 years. I would really like your advice as to how to get rid of persistent central apneas caused by my machine. Iove your channel and feel that you have helped e more that my doctors already! To give you the bigger picture, here is my story of this unpleasant journey so far …
I have been going to GPs for 12+ years almost begging to help me and on occasions I was faced with GP's ignoring me, looking bemused and one or twice even told not to come back with my symptoms as it was wasting their time. I have even been laughed at by a GP.
I was fed up with feeling like I was dying, feeling detached from the world not being able to lead the life that I wanted so started to get serious about finding out why I'm so sleepy, lethargic, lacking energy, dizzy and tired all of the time. I came across Sleep Apnea/Apnoea. It ticked so many boxes so I decided that this was something I would try and convince my latest GP (best of a bad bunch) to help me with. I pushed and pushed to get a sleep study and finally convinced her to send me to a local sleep study centre ( please note that NHS appointments take from 6 weeks up to 18 months to get! Yep! )
I didn't realise how difficult it was to sleep when you are thinking so much about sleep! Years of stress and worry about my health led me into panic mode and the stress gave me insomnia during these tests . I had consultants saying “ Oh, you can’t have Sleep Apnea if you didn’t even sleep in the study” and then sending me home upset and even more anxious and confused! It took me months to try and complete a successful study at home or at a hospital. As I couldn’t sleep in the study the consultant diagnosed me with sleep maintenance insomnia. I spend months trying to improve my sleep hygiene and used cognitive behaviour therapy book that the consultant suggested. I tried every supplement under the sun to try and address insomnia but still woke feeing unrested, sleepy, tires nauseous and with horrible visual symptoms (after images , visual snow halos etc. these have been diagnose my a neurologist as they thought this was caused by migraines) .
After the amazing support and advice from the Sleep Apnoea Trust (Charity) I went to a different hospital. I tried a test there but didn’t sleep due to anxiety. I took a sleep test home a few times and had equipment that failed and consultants just skimming over the data just to say I didn’t need a cpap and I just needed to put upl with my symptoms. I learnt meditation and mindfulness and went back and managed to get through the night and they got sufficient data and they actually skimmed the report enough to diagnose me… Yeaaaah!! (I though yay at the time , now not so much)
At last , diagnosis !!! The diagnosis (takes 7 weeks to get) was that I had moderate obstructive apnea when sleeping on my back (something I have had to do since I broke my back in a car accident, an injury the NHS sent me home with as they did not see the compound fracture in the xray, 5 years later I got an MRI and it was def broken then) and mild obstructive apnea whist not on my back.
So I was given a Resmed Airsense 10 (Auto) with a pressure range of 4-20. They send you off blind and say they will see you in 6 months, they gave me no advice as how to track my progress. A few weeks later I found a flyer in the cpap bag and saw that I could login to Myair and I saw that my numbers were horrendous!
With your YouTube advice downloaded sleepyhead. I went back 6+ times to the NHS drop in . I would like to add that the technicians cannot read sleep test results!! They can only follow protocol that the consultant (who is only in one day in 3 weeks) sets. Over the coming months and they changed the pressure…….
7-20
7-15
13 fixed CPAP
10 fixed CPAP (a random number that the technician said to me “You choose a number then” !!)
I had another test with my machine and it confirmed that it was causing the centrals. They then admitted that I had not been being treated for the last 4 months and put the pressure to 7-10. I have had this for nearly a month and AHI numbers range between 3 and 16 sporadically, again nearly all centrals. Centrals make me feel so bad!
I feel pretty good when I have low numbers and shocking when they are high and I have also had Cheynes Stokes . I had a meeting with the consultants, I asked about changing pressure, changing machine and they just said that numbers do not matter and to see them in another 6 months!! If I still had centrals then to stop treatment. They did not even listen to how I felt and they do not want to help. I have phoned RESMED and they say (off the books) to lower pressure. The NHS refuses to lower it. I’ve had enough of the torture and want to do something about this myself.

Please help!! I know that a screen shot would help. Which sections do you need pinned?

Many thanks and Kind regards

Tim Rowland

please excuse typos...very tired!

there is a lot of info here : https://sleep.tnet.com/main

this is information to orgnize you sleepyhead charts.
https://sleep.tnet.com/resources/sleepyhead/shorganize

this is also good reading ... http://www.cpaptalk.com/viewtopic/t8898 ... Hints.html

How many centrals per hour are we talking about? Worst vs best night???
Are you using EPR and if so at what setting? And have you tried not using it?

For what to show on the images.
Hide the calendar...turn off the pie chart (Preferences/Appearance remove check mark) this will allow the needed statistics on the left side to come into view.
On the right side we only need these 4 graphs right now.
Events
Flow rate
Pressure (or mask pressure but don't need both)
Leak
If you try to get too many graphs on one image we end up getting teeny tiny graphs that are too small to see well.

So that the end result looks like this.

Cheers Pugsy! I'm getting around 12-16 centrals per hour and only 1-2 max hypopneas., very rare I get obstructions. I have EPR on full (set by "technician") and have been tempted to turn it off after a conversation with resmed. I'll get some shots asap.

Many thanks

Good night's I get only 2-5

But that is rare

There are a very few people who will find that using exhale relief like EPR which creates a bilevel pressure situation will get centrals popping up.
Your centrals may or may not be related to EPR...easy way to check...turn it off and see what happens.

If turning off EPR doesn't help then you may well need a different machine and good luck getting one from your NHS given what they have already told you.

You might want to watch this video.
https://www.youtube.com/watch?v=CU-XTcf ... e=youtu.be

I don't know that you have complex sleep apnea but it sure is suspicious for it.

Let's see what the screen shot shows in terms of where those centrals are happening.
Oh...do you take any medications that might suppress respiration...like some sort of pain medication?

Please post some screen shots. I would try turning off the EPR for a few days and see how it goes. You can always turn it back on if you need it.

Cheers guys, ill post some pics tommo. Sleep test showed minimal centrals so this seems like it is caused by machine. Consultant was extremely condescending when i suggested an ASV. Probably trained not to even suggest them as too expensive! Pretty much laughed in my face. If i have to buy one I will but need a consultant to prescribe it first. I dint want to buy one unless im sure that it will help. Ill try disabling or lowering EPR. Thanks again for your time folks. Have a great day (or rest of it)

I take no pain meds.

You don't need a RX to buy from these people since you are outside the USA.
http://www.secondwindcpap.com/

And you don't need them to change your pressures. You just need a clinician's manual for your machine, then you can change your own pressures. Go to apneaboard.com.
http://www.apneaboard.com/

Thanks folks. Have changed pressure before myselfand they got really nasty! Their egos are way more important than my health!! They basically have no idea how to deal with the centrals that they are essentially causing, they are meant to have a duty of care!! I have lowered my epr and had two consecutive nights under 5 and feel the fog clearing apparently this is impossible and low scores can't change how you feel! They really are clueless! Scary really. Resmed gave me free and brilliant advice and if this epr thing fails I'll change pressure range to 6-8 as anything over 8 starts the problems I think. So easy to change.

Anyway , sorry if I come off as a negative person , you all know how it it with mood changes!

Let's hope

No, you just seemed frustrated and desperate, rightly so, it would seem. I hope that things continue to improve for you and anytime you need to vent or need more advice, you know where to come.

Good luck.

It's times like that that it's important to remember who works for who, and the phrase "You're fired" can be quite applicable.

_________________
https://sleep.tnet.com/resources/sleepyhead
how to post:
https://sleep.tnet.com/resources/sleepyhead/shorganize
https://sleep.tnet.com/reference/tips/imgur

Thanks for the comments. My numbers have been under 5 for a week now! Im going to turn the expiratory pressure relief off completely to try and get lower ! I have had 2.8 this week and would love for this to be a more regular thing. I'll keep you posted. Many thanks

Keeping my fingers crossed for you.
Sometimes just reducing or turning off EPR works out very well.

Hi folks. I've played around with the epr this week and with it off I feel a little uncomfortable but with it on 1 I'm getting 2.9, 5 and even 0.9 last night! Thanks for the support and advice. I know this business can be sporadic but fingers crossed. Can't believe the NHS have absolutely zero knowledge of this setting and the dramatic results it can cause. They were happy for me to have 16+ ahi and leave me for 6 months. I really appreciate the help of resmed and this forum.

Update. Hi , I've had some ups and downs over the last week. When i turned down the EPR to 1cm it gaduallly got down to around 2.8 for a few days and then shot up . I turned it off and it's been starting around 4-6. I am now getting quite bad leaks and find that the pressure feels too high with quite a few awakenings . RESMED suggested turning the pressure down. It's on 7-10 at the moment . I will get round to posting some pics when my laptop works . Any suggestions before that? Shall I try 6-8. So weird how sporadic this is , how can I get sub 3 and then it shoot up to 10+ on some days . Very close to chucking in the towel. No point asking NHS for any help as they refuse to have it lower.