ADVICE ON CPAP MACHINE RESULTS

[Benos123]

Hi Folks, During a recent staycation of 11 nights in hospital for atrial fibrillation, hypertension, shortness of breath on exertion and very swollen legs and feet, I underwent an overnight sleep study . The outcome that I had an AHI of 41 was somewhat surprising to a guy who's never had a problem sleeping at night but never during the day etc etc and as consequence I now have an all singing and dancing Philips Dreamstation CPAP machine and which only lacks the coffee machine, and the results after just over three weeks have me somewhat baffled as follows. Of the 22 nights since I got the machine, I didnt use it on 3 nights due to a nasaly cold and the average AHI came out at 5.7. Then when I discounted the 3 nights early on and when I only recorded <3 hrs usage due to familiarisation issues, the average AHI came down to 4.7, and finally when I then just considered the 12 nights that I recorded >6hrs per night the AHI average again reduced to 4.3. As I have now recorded >6 on each of the last eight nights I guess I'm getting used to it and fingers crossed I shall continue along the same lines. Immediately before I started this, I was regularly getting 7 or 8 hrs sleep and as I also can't with hand on heart say I've felt any benefit from the CPAP process (so far), the difficulty in not being able to reconcile the sleep study result with those of the CPAP machine is my issue and all assistance will be most welcome. Thanks in advance!

[TR8Man]

In November 2018 I thought I had had a stroke,,,,I went to my primary care doc. My symptoms were isolated to my left side - fine motor skills " disrupted " Neither my hand or foot could move as quickly as on my right side, arm didn't swing and dragged my foot as I walked. My doc thought either ALS or MS. I went to a Neurologist who dismissed a stoke, MS and ALS. He thought I had Parkinson's. I wasn't prepared for PD and chose to ignore his diagnosis at that time. I had to do some research....Anyway, as my bride and I walked out of his office, I notice Sleep Study signs....I asked what is a Sleep Study? This was Dec 2018.....In Jan. 2019 I did both home and office studies. I have Sleep Apnia - shallow breathing. History: I had been living with 15 -18 Migraine days per month for decades...Nothing worked...These things were devastating....brutal...relentless....they sucked...All I could do was hope I took my pain med's in time to shut it down...I started using a CPAP February 2019...My migraines went to less than 1 Migraine day per month....Eureka, holy crap!!! In fact my last Migraine was October 2020!! Really...Who knew? Certainly not my doc....so I guess, there is something good to come from learning I have PD....I guess I traded Migraines for PD... Now that I think about this, not a good trade. ( I've never had this thought before right now )... PD is every day....

[MarionP in reply to TR8Man]

Well it wasn't really a trade, you just got rid of the migraines which is a blessing tell me about it. Now you can work on the Parkinson's. Could be worse.. could be raining, to quote Marty Feldman.

[TR8Man in reply to MarionP]

Actually, it was raining....Hmmmmm

[MarionP in reply to TR8Man]

I don't blame you for being pissy, I was the first few years I had pd.

What I meant was, you could have been ALS or a stroke or complete blindness. I for one think I wouldn't miss migraines and I'd be pretty happy about getting rid of them at least. I wonder if there are people who have both?

[TR8Man in reply to MarionP]

Actually, you made me laugh..as I thought about Marty Feldman - Igor - I liked your comment. I don't miss the migraines one bit. You're right it could be worse. I have to believe there are folks who have both...not me. Thank God...Have a fun day!! - Art

[1LittleWillow in reply to MarionP]

MarionP... what hump? 😉

[st8farm]

CPAP is a "God send" to people who have breathing issues. Most people don't even know they need one until they start falling asleep while driving and stopping at a long stop light or some such occurrence. Any machine related problems are almost always not getting the air pressure correct for your needs. Most of the technician's are sales people and don't have the skills to get it right or just don't care. With some patience and attentiveness to the situation you can get it right. When you do it is smooth sailing .

[gwendolinej]

As a matter of interest, Philips has a big problem. They are recalling millions of machines worldwide. It doesn’t include your model fortunately. It hasn’t been announced yet how they will go about it. My husband uses one here in Australia. There are 75,000 machines here alone. Our regulator, TGA, is expected to make an announcement very soon.

We have put a new machine on hold, as there’s obviously going to be a big shortage.

[Benos123 in reply to gwendolinej]

Greetings from Ireland and thanks for your reply and advice even though I had come across the same information last week and had sent this message to my rental supplier here in Cork. "I came across this just this morning (usa.philips.com/healthcare/... on The British Lung Foundation site and whilst it say's US only, I always with my Health Research Board experience feel it's best to have that re-assurance from the suppliers here, and I'd be obliged if you can confirm that is in fact not applicable here. " ------ Personally, I didn't believe a word about it being US only and I reckon they've all been made in the Far East, badged up for each area and shipped out en mass, because otherwise the likes of Philips only make small profits if they are stuck paying commissions. There is aleady an awful lot more on YouTube and last night I came across this one ---- youtube.com/watch?v=6SwGXBe...(Not working as expected?) ---- and which maybe helpful to those CPAPERs who have purchased their machines outright. Finally and as regards the query I first posted, would your husband have any insight into the correllation of my sleep study test results of 41 and the daily AHI readings on my machine and which in general only average 5. What I'm trying to figure out is that if I had an AHI of 41 per hour in the hospital sleep study, why then are the AHI totals on this supposed automatic machine and that only responds when it senses a stoppage in breathing, not reflecting that more closely! My apologies for interfering in your weekend with all the above drivel. Kind Regards, Ben.

[gwendolinej]

Hi Ben,

According to what we’ve been told here via the news outlets, it’s worldwide. We are awaiting instructions from the Therapeutic Goods Administration.

Coincidentally we had the machine checked over last week, new filter etc. we own our machine. The advice we got from the company checking the machine was that there will be a BIG shortage of machines, which of course is pretty obvious, so yes, we should put one on hold till we know more. As far as I’m concerned, my husband can’t be without his machine. There has got to be a period when people will be without one. What a disaster!

As far as the technicalities that you mentioned are concerned, don’t ask me🤔. It works so well for my husband, so I haven’t bothered to concern myself. If it didn’t, I would.

Regards,

Gwendoline

Ps. It’s Monday morning here 😊

[Benos123 in reply to gwendolinej]

Hi Gwendoline, Well on receiving your message as I was heading towards the land of nod last evening, I swiched off the machine andagain had a better nights sleep than anytime with the machine, and which I only started on a two month trial basis on 09/06/21. Then this morning over breakfast I researched first the Australian Press which led me to The Austrailan Govt site Tga.gov.au and from there to Philips.com.au and which automatically gave me the link to Philips.ie and which spells WORLDWIDE RECALL out in very plain english. And so on the basis that Philips only supposedly first became aware of the issue on 26/04/21 (and when I cynically suspect the number of defect calls exceeded the acceptable level), and then escalated it to a Global Full Notification on 14/06/21 and yet that I had never been notified nor heard mention of it here in Ireland. I've now cancelled the trial, notified my Respiratory Consultant and I have also forwarded the details to the Health Products Regulatory Authority here in Ireland and who in fact should have notified Dreamstar CPAP users before now! So my sincere thanks and good wishes to you and yours and I must also not forget to praise Healthunlocked who provided the forum.

[gwendolinej]

Hi Ben, I just rang the initial supplier of our machine. They said that the reason that the emphasis is on the US is that many people there use ozone cleaners. I’ve just googled and there was a warning from the FDA in 2020 telling people not to use ozone cleaners for health reasons, and to clean the machine with a mild detergent, which is what we do. Philips doesn’t recommend ozone cleaners, just a mild detergent.So maybe we are okay.

The supplier, who is being inundated with panic calls, is awaiting instructions from Philips and the TGA.

Gwendoline

Ps Loved the video. I could just see us doing that 😆

[Benos123 in reply to gwendolinej]

Hi Gwendoline, Thanks for your continuing efforts and all I can is that everybody here in Ireland are playing stum and gone to ground as I heard nothing at all after my email yesterday. This includes the supplier who was not alone very quick to phone me on Friday last when I first raised the issue with them, but also went to great pains to re-assure that there was "nothing to worry about". (I wonder how she felt yesterday when I updated her with a copy of the WORLDWIDE RECALL NOTIFICATION?. It wouldn't surprise me at all if the ozone cleaners turned out to be a bit of a smoke screen diversionary tactic as this latest issue is with the foam! My machine is now all cleaned and packed up to go whenever, and I've terminated my two month trial.

Great credit is due to the TGA as it looks like they "forced" the escalation on the 14 June 2021 and whilst Reuters have a good piece on the subject at reuters.com/business/health... , the following quote attributed to company spokesman Steve Klink that

"Philips has received reports of possible patient impact due to foam degradation," the company said in a statement. "To date, there have been no reports of death as a result of these issues."

doesn't augur well for the future and I reckon this displays that their concerns for share price and profits are much higher priority than that of the patientsthe patients! And so on that somewhat sombre note I'll now leave it at that and wish you and yours all the very best for the future. Kind Regards, Ben.