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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

Profile Information

My Interest in Sleep Apnoea
I have Sleep Apnoea
Treatment Being Used, If Any
Auto-Adjusting CPAP
If Machine Being Used, What Make? (e.g., Respironics M Series with A-Flex Auto-Adjusting CPAP)
Respirionics Auto
If Mask Being Used, What Type? (e.g., ResMed Activa Nasal Mask)
Quattro Air

Comment Wall (4 comments)

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At 22:05 on May 12, 2014, Manda Liversage said…

Hi Dee - how are you today?  

At 22:56 on May 11, 2014, Manda Liversage said…

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

At 19:53 on May 11, 2014, Manda Liversage said…
How are you doing today?
At 19:53 on May 11, 2014, Manda Liversage said…
Hi Dee



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Latest Activity

Ann Murch posted a discussion

New by wondering what to do next

Hi,my name is Ann and I stumbled across this site when looking to see where I could sell my CPAP machine but after reading some discussions, I now think that I may be better keeping it. I bought the  Sleep Cube as it was fully automatic and as I…See More
4 hours ago
Ann Murch is now a member of Hope2SleepGuide
Cathy posted a discussion

New full face mask

Hi, I’ve been using the ResMed mirage Quattro since I was as diagnosed5 years ago. I’ve always hated it and found it so uncomfortable. Last week I bought myself a ResMed  airfit F20 with quiet air and it’s the best thing ever. Nothing covering my…See More
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John Wilkinson replied to The SleepGuide Crew's discussion Welcome to our Forum - Feel Free to Introduce Yourself Here.
"Hi Sharon, I have been using a Cpap machine for 7 months. I too struggled with a full face mask (Simplus as issued by sleep clinic) but I changed from a large to medium size mask and it is a lot more comfortable and, because it fits better, I…"
Jul 9
Edam replied to Edam's discussion Double inhaling
"Using the Quatro Air is certainly working. My 95% pressures are still below 15 and also Im getting a much better sleep. I think the reason its working is that the inlet is lower on the Quatro Air and is also directed downwards. This direction of…"
Jul 9
Eric Swindon added a discussion to the group Buy-Sell-Swap

Unused Masks for sale

 I am offering these never used masks (all in original packaging with User Manuals) for half the current retail price (check them at www.eu-pap.co.uk) , that is £50 or £60 including shipping within the U.K. …See More
Jul 8
Eric Swindon joined The SleepGuide Crew's group
Jul 8
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Jul 8
Trina replied to The SleepGuide Crew's discussion Welcome to our Forum - Feel Free to Introduce Yourself Here.
"Thanks for accepting me! I am new to the sleep apnea world, but suspect I have had it for many, many years. It was just diagnosed as many of things. "
Jul 7
Sleep2snore replied to Chris Vesey's discussion Insurance
"To be honest, I never thought about what would happen if it was stolen or damaged while away!"
Jul 6
Sleep2snore replied to Chris Vesey's discussion Insurance
"The best thing is to ask your clinic, they all appear to work their own way, also if you are going abroad it is worth checking if it is still covered.  If not you might feel better if it were covered by insurance.  Ask if your home…"
Jul 6
Sleep2snore replied to Neil Jay's discussion Remstar M series repair?
"I went off on a tangent when my brain stopped working. Philips R|esperonics Customer Support Centre (Repairs and Maintenance) 0870 532 9741"
Jul 6
sharon replied to sharon's discussion struggling with CPAP
"thank you, i will try the suggestions, I reaaly appreciate the help Sharron"
Jul 6
Kath Hope replied to Neil Jay's discussion Remstar M series repair?
"I don't think Resmed would repair a Respironics machine Sleep2Snore although I could be wrong."
Jul 5
Sleep2snore replied to sharon's discussion struggling with CPAP
"You might need to try a good few masks before you fine one that works for and with you. Once you find one they will stop making it next week if your luck is like mine! Contact your clinic and check it is not to big or get another mask. Also make…"
Jul 5
Sleep2snore replied to Neil Jay's discussion Remstar M series repair?
"I think it is a Humidifier not a Dehumidifier but that is an easy mistake to make. The humidifier is controlled from inside the machine and as far as I know, the only repairer is ResMed UK. Someone tell me otherwise! The other option and maybe…"
Jul 5
Kath Hope replied to Neil Jay's discussion Remstar M series repair?
"I've not heard of any repairers here in the UK.  If it's the System One Remstar and it's under 2 years old it has a 2-year manufacturer's warranty.  If you got it from your hospital they will change it for you."
Jul 5
Neil Jay posted a discussion

Remstar M series repair?

I have a RemStarAuto M Series CPAP machine with a dehumidifier. The dehumidifier has stopped working. I have dome some testing and the humidifier works when hooked up to another Remstar so the fault is somewhere in the main device. I have tested the…See More
Jul 5
sharon replied to sharon's discussion struggling with CPAP
"thank you, I will look at the liners"
Jul 5

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