"Just to tidy this up, I finally had an in-person review by my sleep clinic yesterday, who agreed the ResMed AirSense 10 was "wheezy" and replaced the machine."
Sleep Apnoea Forum Bringing Help + Support to the Patient
My Stay at St. Barts
After 4 years of telling the London Chest Hospital that the Cpap machine wasn't working and making me feel worse I finally got admitted again for another try! I had returned 2 Cpap machines and 1 auto Cpap explaining that the machines were actually making me feel worse than when I didn't use them.
The first hospital I attended (Whipps Cross) had already determined that I was having mixed apnoeas when I used the Cpap machines due to the pressure being on the highest settings. I used to wake up feeling so ill and sick when I used the machine.
I posted a discussion on here and it was Kath's answer that made me want to give it 1 more try before giving up on the machines altogether.
But how to tell the consultant that I wasn't happy with the treatment so far. I opted for the "my friend is using this" story or there would have been an argument as after 4 years I was getting ready to go for it with anyone!
Finally I was admitted into St Barts in November for a last attempt (The London Chest Hospital now works from Barts). I was going to stay until something was done, even if it was me deciding to give it all up with cpap treatment.
The first thing they did was an overnight study using the cpap. This confirmed what I had been telling them for 4 years so they next used the auto pap. This led to a huge argument in the ward (I was the only person on the ward! How much do empty beds cost the NHS?) as now I had had 2 nights on cpap and I was feeling so ill. I was told that my initial count of 60 apnoeas an hour had gone up to 100 an hour and I was now a very sever case.
On the 3rd night they used the auto pap again but this time I just ripped it off during the night as I had a blinding headache. A doctor was called to the ward who told me I HAD to use the machine to which I replied I don't HAVE to do anything and if there was a problem with that call me a cab to go home!
Finally I was put on a Bipap machine (which is what Kath suggested in the first place!) Although the pressure had to be ramped up a lot from the other machines it didn't seem to have a bad effect on me and after 6 nights The apnoea count is now down to ZERO, I can even drive again!!!!! I spent 1 last night in the hospital just to make sure that everything was really Ok and it was.
The Moral of this story is don't give up if it doesn't work - keep nagging your consultant until you get results. I use the machine all the time now with a mask liner which makes the mask so much more bearable especially if you need high pressure.
Hope this story helps others who are having problems with the cpap machines - Russ
Views: 459
Replies to This Discussion
-
Permalink Reply by Kath Hope on
-
Russ, thanks so much for this update, which I hope will help others. Fortunately, for most people fixed CPAP or APAP is a life-changing successful therapy, but sometimes for various different reasons, a different machine is needed. I too had to be changed to an ASV (Adaptive Servo Ventilation) earlier this year. Whilst my AHI was usually within the normal range I was retaining carbon dioxide and my oxygen levels still dipped (we are still on the journey to find out why). For the benefit of people viewing your post I'm linking to your original discussion http://hope2sleepguide.co.uk/forum/topics/mixed-apnoeas which links to 2 others http://hope2sleepguide.co.uk/forum/topics/mixed-apnoeas
I really am so pleased to hear things are going well for you now and that you didn't give up on your life-saving therapy. The moral of these stories are to hang in there and keep looking for an answer!
-
Permalink Reply by Leslie Robert Hayward on
-
I really am so pleased to hear things are going well for you now and that you didn't give up on your life-saving therapy. The moral of these stories are to hang in there and keep looking for an answer!
-
Permalink Reply by David R1 on
-
Interesting as i have central and respiritory apnea. I went to Papworth for my appointments etc.. i have been advised that if my central apneas are more promenent i will have to go onto oxygen. But i was intrtested to hear what Russ said as well as the postee of the link that Kath has given about the headache on waking as well as feeling like you have had a good old drink. I qm teatotal as well (hic hic) because of meds. So it makes sense to me this could be the issue here with me. I have my 3 month appt in May so will bring this up with them then. I cannot fault the staff at Papworth nor the facilities.
-
-
David R1 said:Interesting as i have central and respiritory apnea. I went to Papworth for my appointments etc.. i have been advised that if my central apneas are more promenent i will have to go onto oxygen. But i was intrtested to hear what Russ said as well as the postee of the link that Kath has given about the headache on waking as well as feeling like you have had a good old drink. I qm teatotal as well (hic hic) because of meds. So it makes sense to me this could be the issue here with me. I have my 3 month appt in May so will bring this up with them then. I cannot fault the staff at Papworth nor the facilities.
About
Sleep Apnoea Forum
New to the Sleep Apnoea Forum?
1. Stop by our Sleep Apnoea Welcome Center to introduce yourself to the SleepGuide community.
2. Start a New Topic of Conversation.
3. Post your photos - of yourself, your old CPAP machine, your new CPAP machine, your pet, something about you!
Interested in advertising, have a problem or need to contact us? Click the Report an Issue page.
Latest Activity
"thank you jonathan,i did get the it pack so tried the small and still struggled but i was sat up in bed so will try lying down great suggestion "
"Hi
My first thought is "don't panic"! We're all a bit different, and there are many things that can be tweaked. I took to CPAP therapy like a duck to water, but I've had friends who say they can't cope, but…"
1st time and I’ve failed the mask leak test
Hi everyone, today I received my rental kit - prisma smart max, plus a Philips dreamwear mask which I’ve been wearing unconnected to try and get used to it. I just did a mask fit test using a medium mask and got a constant red/orange leak warning…See More
Are every small CPAP machines any good?
Travel sized, micro - any good?See More
"Ha well it lasted a couple of days but started howling again. But it's a step in the right direction, just needs a bit more work."
"Nope, I just accept that some people's throats tend to close when they sleep, due to a loss of muscle tone during deeper sleep. Back when I was diagnosed, the sleep lab just filmed you whilst you slept, stuck an O2 meter on your finger,…"
"Did anyone tell you exactly what the anatomical issue is, Jonathan?"
"Can't say I know about this."
"So I tore some fabric from one of the filters and glued it over the holes - and it worked!It was dead quiet, and the air was still flowing freely.It was quiet all night then after a few hours a bit of whistling until I gave it a wipe.Vast…"
"Hi Jonathan, well see my nose is blocked a lot, so I mouth breath which really sucks a lot more moisture and makes my mouth dry. So I put humidity on maximum, which makes for condensation at the mask end, which becomes a demonic reed instrument.Now…"
ResMed AirSense 10 getting noisy
HelloI have an NHS issued ResMed AirSense 10 with heated humidifier. In the last couple of weeks, it's developed an annoying noise, when I inhale. It bothers me a little and my partner a lot! I sometimes get problems if the water container in the…See More
"Hi
My first question is why is condensation forming? I very occasionally get some condensation, may be once a month, but I can quickly run a finger around the inside of the mask, and wipe it away. I use a nasal mask, with the humidifier…"
"11K+? Ok that's probably where I should look then :-)"
"Hi John. Thanks for the compliment as I do my best popping on here, but it's difficult due to us now supporting 25k+ patients at the charity. To be honest, the forum is quiet because most people seem to prefer Facebook and forums aren't as…"
"There's some information here, but generally it's very common and likely due to our anatomy."
© 2024 Created by The SleepGuide Crew.
Powered by
