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Hi, introduction and my experiences
11-15-2015, 06:28 AM
Your GP opened up a browser to Google when you mentioned you thought you had OSA?
11-15-2015, 01:20 PM
(11-15-2015, 06:28 AM)Weird Tolkienish Figure Wrote: Your GP opened up a browser to Google when you mentioned you thought you had OSA?
Close she googled stopping breathing when asleep and that led her to OSA.. she immediately referred me to a consultant who I have seen once about 6 months after being monitored for one night with a machine at home and being issued with a CPAP machine.. oh and when I saw him he had no notes or anything else..
I must admit that I am slightly disapointed that seeing the doctor in december 2014 followed by the company that does the monitoring and then the nurse practitioner several time and then the consultant and again the nurse Practitioner to date no one has even asked me to open wide and say ahhh...... for all they know i could have a tennis ball lodged in my throat !!!
11-22-2015, 05:10 AM
(11-14-2015, 07:17 PM)AshSF Wrote: Sam: I am assuming that your devilbiss auto has smart flex and that you are not using it currently. . If all you are getting are hypopneas at your pressure of 11, here is what you can do:
After first week,
pressure at 12 and smart flex 1
AHI = 6.02 no apneas, all hypopneas
now going for pressure of 13 and smart flex = 2 for a week.
I have contacted the clinic and they indicate that my last set of results (3 weeks of monitoring since they set the pressure at a fixed 11) are showing what we already know, no OSA but quite a few hyponeas.
Before referring me to the sleep centre my consultant wants to review my medical records.... I.m going to write to my GP and see what can be done to speed up this process.
12-15-2015, 04:03 AM
Latest is that even after trialing the suggested settings by AshSF in fact as I increased the pressure in 1cm/h2o steps the hypopnea's increased, I have now gone back to a setting of 12 @ smart flex 3 but I suspect that will end up back at 11 and smart flex 1 for the lowest index.
I have an appointment with the Dr who ovesee's my treatment tomorrow (weds 16th) to discuss the issues I raised in a letter last week, I have also been referred for a review to a different hospital suggesting that I need a polysomnography and further investigations into the cause of any sleep disorders, which hopefully may get to the bottom of it all.
Time will tell...
02-05-2016, 12:22 PM
Latest is that I have been referred to another consultant, this one is a specialist in CSA. I had my first visit last week where they informed me that I have CSA and they are going to admit me for a few days ASAP to monitor and get a machine (probably a ASV) set up for me and a few other basic tests, they are going to get a treatment working beore going on to investigate why my brain is not telling me to breathe when asleep.
I really Really need a good nights sleep...
02-05-2016, 01:25 PM
Best of luck with the new test and subsequent care. I'm following your story with the greatest interest, and fingers crossed!
03-25-2016, 12:56 AM
Well a lot has changed, I have been an inpatient for the last two days and one night under my new consultant, I had a full night sleep study with the second half of the night using a new machine. Unfortunately my visit to hospital was delayed 1 day due to a lack of beds and the 3 day/ night stay has been cut short due to the easter holidays.
I am just had my first nights sleep at home with my new machine, the devilries will be returned to my local hospital and I am now confirmed as having complex or Central sleep apnoea. The good news is that my heart is in good condition (apparently some of the machines that could be given to me are not compatible with heart failure).
I am just going to look and see if I can download the manuals etc for this new machine <<<< over there in my profile and do a card read in sleepy head.
The ResMed machine (Autoset CS)has been set up by the new hospital that I am under (Central London) with the settings Autoset CS Auto
Min EPAP 8
Max EPAP 15
Min Pressure Support 3
Max pressure support !0
which I believe gives an operating range from 5 to 25.
I'll update when I've sorted the software, first night seemed OK but I have woken at 5 am with quite severe leakage (I'm awaiting a new mask to be delivered).
03-25-2016, 01:24 AM
I've just downloaded my first nights data into Sleepyhead.
My AHI is 0.56 made up as Unclassified Apnea = 0.37 and Hypopnea =0.17 with a large leak rate or 1.75% for a total sleep time of 5.21 hours.
My lowest ever AHI reading was a 6.5 but more normally in the upper teens and recently I've been as high as 30+ using the CPAP machine.
Early days I know but I have to be pleased with the result and I am.
03-25-2016, 01:41 AM
I've just been reading through this thread - you've been on quite a journey. I can't help but think there are many apneacs who are not being effectively treated because too many in the profession think of apnea as just being obstructive apnea. Your Autoset CS Pacewave is the successor to my beloved S9 VPAP Adapt which has been very successful. With an AHI of 0.56 it's obviously working pretty well already. This machine is also called the Aircurve ASV or Aircurve CS Pacewave in some markets. The clinician manual is available through the link at the top of this page.
With your settings you can potentially have an IPAP of up to 25 which may cause some discomfort and leakage but you do get used to it after a while. If your EPAPmin is 8 then you won't get a minimum pressure of 5 except during the ramp period if you use ramp. Your minimum pressure will be 8 as set, and your minimum IPAP will be 8 + 3 = 11. EPAP + PS = IPAP.
Congratulations on the new machine and the excellent early results.
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INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
03-25-2016, 06:34 AM
Thanks for putting me right on the EPAP and IPAP Paul, it's mainly due to this Forum and things read here that has made me push to be treated properly. My initial diagnosis was obstructive which I accepted as did I the machine and everything that went with it and the improvement in how I felt was really good, it didnt last long.
My new consultant did sort of back up the initial diagnosis by saying that often a CPAP machine will sort out Central sleep apnea, but on the other hand when she wrote to my GP it stated in the letter that she found it strange that I was diagnosed with just obstructive SA as the vast majority om my apnea's were central. I had already worked this out for my self from info gained from buying the logging unit for my old machine and Sleepy Head" software.
I am now being treated at possibly the UK's best hospital for sleep related conditions, they have got me to this stage with one initial visit and one overnight stay (this was planned to be 3 nights but due to constraints and the local holidays the Sleep study department dont work over the holidays. I will be sending my data back to the sleep technician in two weeks ahead of my next visit (possibly overnight). The idea was that they would get my treatment sorted and working and then start looking for the reason why my brain is not giving out the right signals when I sleep.
I'm hopeful that this new machine will give me a much better quality of sleep, I'll report back on that after a few weeks when its all settled down.
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