"Hi
The SleepCube was a private purchase, as way back then my local sleep clinic assessed patients by filming them overnight, whilst wearing an oximeter, and only issued CPAP machines without humidifiers. There was no remote monitoring and…"
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DeeNJai
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DeeNJai's Discussions
Is there a connection between Sleep Apnoea and Spina Bifida
HiI was wondering if there is any connection between SA & Spina Bifida (SB) as I finally been told that I do have the mildest for of SB called Spina Bifida Occulta which I was told 5 years ago…Continue
Started May 30, 2014
Fisher & Paykel Simplus Mask
16 Replies
HiI was wondering if anyone has used this mask as I am thinking about asking for this mask when I am due a new mask in October as I have the Quarta Air which I not getting on it that well so…Continue
Started this discussion. Last reply by Edam Jul 16, 2014.
Good Numbers but serve tireness
27 Replies
Over the last month I have been having good numbers below three but I am very tired. I have noticed that on sleepihead that it I am having areas on the graph there is a totally flat line. On…Continue
Started this discussion. Last reply by Manda Liversage May 11, 2014.
Smell of mould in boiler cupboard after bad leak
1 Reply
HiLast week I had a bad leak from my boiler which soaked the wooden floor board now all I can smell is mould. This is the room I sleep in what can I do to help get rid of the smell. I am concerned…Continue
Started this discussion. Last reply by Kath Hope Mar 5, 2014.
DeeNJai's Page
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- Treatment Being Used, if any?
- Auto-Adjusting CPAP
- If Machine Being Used, What Make or Model?
- Respirionics Auto
- If Mask Being Used, What Type or Name?
- Quattro Air
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Latest Activity
"Yeah I was wondering about email address. I thought probably if they wanted me to mail them they would have given out an address. I can imagine heart data is considered more acute than sleep data, so it would make more sense to have that…"
"Hi.
I didn't use PatientsKnowBest (ironic name), but I have an email address for my heart department for sending in ECGs. I was just saying that they may be able to review a PDF when then cannot review a data file from your O2 ring.
I am…"
"Hi Jonathan, did you do that through PatientKnowsBest?"
"On an unrelated topic, I've been able to send ECGs by PDF to my heart clinic.
On the subject of Resmed and apnoeas, take a look at https://youtu.be/ufOOAfyzZso?si=Tpdl4EEiCQBZR4iD&t=276
Your machine may be under-reporting.
Good…"
Wellu O2 Ring - is it accurate enough for the medics?
Moving some furniture my long lost O2 ring continuous oxygen saturation monitor turned up. So I've been wearing it and it tells me I have loads of saturation drops during the night even though my Airsense 10 says I have very few apneas.So I get two…See More
"Hi,
Just thought I'd give an update. So, I had my appointment with the NHS sleep clinic which was much quicker than I anticipated and I've now had the overnight sleep study. My AHI is now 6, down from over 30, so I'm…"
"Hi Sally from what I read the airsense doesn't suffer the same foam degredation issues as the infamous Phillips machine.I can conceive it's possible that microplastics may be shed from the flexible main tube.What worries me more about the…"
"Hi
My sleep clinic discharged me, saying they were happy I was self-managing. Roll on a decade and the cardiologists taking care of me were very unimpressed and I was re-enrolled. I expect remote monitoring with current generation Resmed…"
"Hi Jonathan,
Thanks again for the info. My cpap *should* be monitored by the NHS though I haven’t had any contact from them since pre-covid. I checked out the link you gave to access extra data and I think that’s going to be…"
"Hi
I have the ResMed Airsense 10 Autoset (APAP). It's monitored remotely by my NHS sleep clinic and I believe they can make changes to the settings. I don't know whether they are notified if I make changes, nor whether they…"
"Hi Jonathan,
Thanks for the reply. I'd say that I'm fairly technical. I have the ResMed Airsense 10 Elite machine. I've discovered that I can upload data wirelessly from my machine and having lowered the pressure by…"
"Hi
You don't say how technical you are, or what sort of machine you use. However https://www.sleephq.com/ has software which allows you to upload data from compatible machines, and analyse your sleep "score", including a…"
air bubbles after weight loss
Hi,I've been on Mounjaro for about 3 months now, not primarily for weight loss, but I have lost weight around my face and neck. I've noticed that I am increasingly getting air bubbles in my mouth which of course is disturbing my sleep (and my…See More
Micro plastics risks
I was reading an article in the I newspaper today written by a journalist who had her blood tested for micro plastics and was shocked by the results.…See More
job with the charity
Was wondering if there might be a job for me with Hope2Sleep?(I also just asked this of a group by mistake)See More
For Sale - Ventura Full Total Face CPAP Mask
I’m selling an Ventura Full Total Face CPAP Mask Large and two spare liners. I bought it new from the Hope2Sleep shop, but it is not suitable for me. Only used for about two weeks so I have washed it thoroughly. Because of this, it is very much…See More
"I put in a claim for PIP which was denied and now I am over 66 and on pension I tried for AA. Denied again.I have other health conditions ( Diverticular disease and Bile Acid Malabsorbtion ) which I consider hard to live with and they refused all of…"
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Hi Dee - how are you today?
Hi Dee I'm wondering what doses you were on (I recall you mentioned them in a post once, but fibro fog makes me forget) and how they are actioning your reduction.
I am now on Pregabalin as the Gabapentin was no longer having an effect, and plus once on Pregab I have been able to come off the anti-depressants for first time in 12 years - been off them since August last year.
My reason for asking about the dose levels they are using is that you have to come off these in real tiny steps - nothing like as easy to get off them as when you start! I'm trying to reduce at the moment and of Pregab I was on 300mg twice a day. That's the max dose for fibro. (Gaba I was on 900mg am, 900 lunchtime and 1200mg inevening)
Anyway - I tried to get off at a reduction to 200 in day and 300 at night, but was way to big a drop so they tried 250 in day still to hard so at the moment I'm taking 275 and 300. I'm tired and rather emotional (husband decided 2 weeks ago he wants a divorce) so I know I'm not making a lot of sense, but I'm trying rather inarticulately to say try to get the smallest reduction possible and make sure that you're stable before going down again. Because there isn't a 275mg pregab I'm taking 2 x 100 and a 50 and a 25 and you may end up doing the same until it sorts itself out.
Don't be rushed into a) deciding to reduce your dosage, and b) into doing it faster than your pain levels can cope with. Cos it's not about anything other than how your pain levels are. Fibro really is a s***e of a thing, but we have to take control of our condition cos if we don't, then the NHS accountants do.
Are you with a pain clinic? And also how much support do you get from your GP? Mine are both fab - but I'm really lucky to have that now and it took 12 years to get recognition so I've seen some s*** ones. I'd suggest if you can, talk to them about how YOU want to control your pain meds. I get multiples of all the doses of tablet strength but still totally up to 300 mg twice a day. My GP acknowledges that I could happily off myself any time I wanted with all the stuff I have, so the fact that I'm trying to take less not more is a good thing.
I'm always here for you if you need to chat.
Gentle hugs
Manda xxx