[Diagnosis] Periodic breathing

[bigtonio]

thanks very much dave - i hope my new GP will contact sleep clinic to see me sooner...  anyway soon a member of the forum (me) will know how an NHS clinic reacts to patients 'meddling'

[DavePaulson]

My GP was good with it, I just discussed it with him on my annual visit, he likes data. I hope yours is as understanding.

Dave

[bigtonio]

I shall not be having a go at my GP next Monday..... - On Sunday I phoned the 24hr sleep clinic helpline (having found there was one!)  Today my consultants secretary rang to tell me that she has chased the lab and they have promised that the results of the home tests on 6-7 july will be with her today.  The consultant will examine them to "see where we go from here" - and the secretary will be in touch later this week or early next ......  now THAT is an improvement on "about 27th August" - isn't it!

[richb]

Sleep position is a very big factor in Obstructive Apnea.  Continue trying to sleep on your side.  You can use pillows or tennis balls as an aid.  The pressure increases can contribute to CO2 washout and an increase in Central type events.  Your data may be skewed by your sleeping on your back.  Continue trying to understand your numbers and stay in touch.  

Rich

[Sleep2Snore]

thanks very much dave - i hope my new GP will contact sleep clinic to see me sooner...  anyway soon a member of the forum (me) will know how an NHS clinic reacts to patients 'meddling'

They don't like it.
You will be hung, brawn and quartered then hung from the hospital roof to stop others from trying!  

[Sleeprider]

Thanks very much SR my GP appt is 31/7 - with a new GP as my normal GP has just gone on maternity leave - great timing!  it is just over a year since they did every test there was on my heart etc multiple ECG's, Echocardiogram (result "normal left ventricular size and systolic function, estimated EF = 55-60% normal RV size and function. No significant valvular pathology,") and finally a cardiac angiogram which found "minor coronary atheroma only" this was done because i had had chest pains after climbing 7 stories in the hospital to visit my wife (lifts weren't working).  Since then the assumption has been that my heart is A-OK. As it is derived from an echocardiogram i assume "estimated" is normal.   I also assume it could have had a significant change in a year but I may have some difficulty in getting the tests repeated?

Part of the reason for the CPAP 8cm night was to find out if the CA events were being caused by excess pressure.  I certainly had a worse night partly because i couldn't get to sleep and significant time was spent lying awake particularly in the first part of the night.  normally i sleep immediately.  As AHI is an events per hour measurement reducing the sleep hours from 7.5 to 5 skews the results as worse than my normal auto doesnt it? I have certainly had a worse day in terms of daytime somnolence even though i felt less physically tired on waking. If a significant improvement is unlikely from stepping up CPAP how would that be likely to compare with reverting to auto with A-flex set to 1? (I dont understand how A-flex affects my situation).  i anticipate less of a problem with the doctors if I dont "play" with settings especially if the results are not going to show much improvement.  I can justify last nights attempt easily as a reversion to my CPAP prescription. I also feel i need something I am used to tonight as I have 2 hospital appointments tomorrow (unconnected) and I wouldn't want to feel as I have today.

I have loaded encore basic and will try to get to grips with that whilst still trying to understand my issues.  your point about things to get action moving is well made and i will get data into that software a s a p so I can see what examples are likely to have that effect. 

Thanks for your help - i feel more relaxed in one way - last night my pressure could not be excessive yet my AHI (adjusted) was worse than average this makes me hopeful that a change of machine will be the answer - I just have to see if there is anything that can expedite that.  I have been coping with AHI in the 20's and 30's for a few months now. The PB% has been increasing slowly at the same time.  If I can produce evidence to my GP and  get her to write when I see her there is a hope that I might get things moving sooner.

You clearly know a great deal more about your health than I know about my own.  The tests and facts you point to here tell me that you are probably in good cardiac condition, and the central apnea and periodic breathing is a new central or complex apnea condition that will be treatable with ASV.  I don't know how to suggest you pursuade your doctors to take this seriously, and perform appropriate sleep testing to titrate you for ASV.  All I can think of is to show them the details and make them understand that a solution is important to your long-term health and well being.  Using ASV in the treatment of periodic breathing, central apnea, hypopnea, mixed with obstructive apnea is a well known science...and art.  You clearly have the need for this.  Thanks for detailing your history above.  I think you have made smart choices to follow prescriptions with your treatment pending further evaluation and a better solution.

[bigtonio]

Thanks Rich - It was something I had concluded could be affecting me - Another thing I have been doing is turning my machine off and on when I wake which resets the pressure.  I have always done this when I got out of bed but I now do it even if I dont get out of bed.  I hadn't realised that you can use sleepyhead to give data for single sleep periods which has enabled me to look at sleep position a bit more (on left side, on back, on right side.)  i am prevented by pillows (and the edge of the bed) from changing!. I now sleep on my side(s)as often as I can (i.e.unless the pain in my hips makes it impossible).

time of sleeping seems to make a big difference to me - if I have got up for a few minutes to cool down or have a drink etc and go back to bed between 6 and 8 am (being retired i can!) i have had some really bad sessions although sleeping on my side (yesterday the 'late' session was 1 hr 27min with an AHI of 62.42 & PB of (more than) 54.86% I think that that is the worst separate session i have ever had.

[Sleep2Snore]

thanks very much dave - i hope my new GP will contact sleep clinic to see me sooner...  anyway soon a member of the forum (me) will know how an NHS clinic reacts to patients 'meddling'

They don't like it.
You will be hung, drawn and quartered then hung from the hospital roof to stop others from trying!  

Fat fingers!!! 

[bigtonio]

s2s - If you are right it is likely that I wont NEED any new treatment or machine  Although I am supposed to survive hanging and even drawing (though not for long) no-one survives quartering. I hope my punishment is less draconian

[quiescence at last]

otherwise we will have to refer to you as smallertonios, and maybe then you'd qualify to have four fathers.

QAL