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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
"Hi Nick thanks. Does it do the job and could you camp with it?"
CPAP Total Face Mask
I was curious whether anyone has used the CPAP Total Face Masks and could pass on their observations? I've been using an Airfit F20 for years which is fine apart from the permanent red mark on the bridge of my nose, and have recently tried the…See More
"I've been using the Resmed Airmini for about 5 years when travelling - overall lightweight and small and can be controlled by an App, but it does produce a loud whistling/wind sound for me which hasn't been reduced by an inline filter or…"
"Hi
It sounds like you need to have more conversations with your sleep clinic. There's little point in having a high pressure if it means you cannot tolerate the machine. There's an interesting video here…"
Pressure waking me up. Belching and wind
HiI'm using the prisma smart max machine. Initially I was just on a nasal mask, this changed as I was sleeping with my mouth open. I then went to face and nose mask and complained of bad wind and belching. Sometimes the pressure in the night was…See More
"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."
"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…"
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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 shite 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 shit 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