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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

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

Kath Hope replied to Chris Vesey's discussion Cure for wind
"This is a common problem Sally, and especially when new to CPAP, irrespective of whatever machines people use.  It's definitely not just an Airsense 10 problem. If you've not clicked on the link I posted above in my reply to Chris…"
yesterday
Sally Gray replied to Chris Vesey's discussion Cure for wind
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yesterday
Kath Hope replied to Bob Blair's discussion So Clean sanitiser
"I'm not aware of finance, and we at the Hope2Sleep Charity certainly couldn't offer this unfortunately.  However, if you have a Paypal account then you can apply for Paypal Credit which is offered for products over £150 I…"
Sunday
Kyla Davies replied to Bob Blair's discussion So Clean sanitiser
"Hi Kath In relation to the Soclean do you know if any finance is available to purchase one of these machines? I do not mind spending that amount on one but would be very helpful especially this time of year to purchase one on a finance…"
Sunday
Kath Hope replied to Bob Blair's discussion So Clean sanitiser
"Great to hear this Andy Just as importantly they will help prevent gum disease from dry mouth (plus less dental bills)."
Friday
Andy Dykes replied to Bob Blair's discussion So Clean sanitiser
"Tried one Xylimelts last night. Best sleep in ages. No waking up with a terrible dry mouth. Very pleased thank you"
Friday
Kath Hope replied to Bob Blair's discussion So Clean sanitiser
"Thanks for supporting our charity with your order Andy, and they'll be sent out tomorrow.  I love the Beaumont Citrus Wipes and have tried all the others, and these are definitely the best.  I use them everyday. Hope you find the…"
Sep 11
Andy Dykes replied to Bob Blair's discussion So Clean sanitiser
"Have just placed an order for some mask wipes and the mouth discs. Thanks for the recommendation of the discs, fingers crossed."
Sep 11
Kath Hope replied to Bob Blair's discussion So Clean sanitiser
"The SoClean will never be supplied by the NHS as they can't afford to give out products like this.  We have the SoClean at the charity at the price we've been told it has to be sold for…"
Sep 11
Andy Dykes replied to Bob Blair's discussion So Clean sanitiser
"Thank you for quick reply. The advert was on TV again this afternoon with a web address that links to an Amazon site. After a bit of research I have found a UK seller for £245 with 30 day return. Still not convinced so called my Respiratory…"
Sep 11
Sleep2snore replied to Edam's discussion Double inhaling
"I am sure they are not, but a lt of people tend to tighten their masks up to tightly. A lot more than they need to to stop leaks, I was no exception at the start, if it leaked, tighten it more, but this was not the answer.  New mask the correct…"
Sep 11
Kath Hope replied to Bob Blair's discussion So Clean sanitiser
"I still haven't seen the advert Andy, but lots of people are contacting us about purchasing.  First and foremost, whether with the SoClean or not, it is important to keep our equipment cleaned.  You're doing the right thing…"
Sep 10
Andy Dykes updated their profile
Sep 10
Andy Dykes replied to Bob Blair's discussion So Clean sanitiser
"Oh dear. Looks like I'm in trouble! I have used a CPAP machine for more than 10 years (not the same one) and currently have a Remstar System One SE. Have just seen an advert on TV for the SoClean which got me wondering how often are you…"
Sep 10
Andy Dykes is now a member of Hope2SleepGuide
Sep 10
Edam replied to Edam's discussion Double inhaling
"The only trouble is that both the Amara View and the Dreamwear are too painful to wear. The part of the cushion separating the mouth area from the nose cuts in!! to the base of my nose and partly into my nostrils."
Sep 9
Sleep2snore replied to Edam's discussion Double inhaling
"Good detective work."
Sep 8
Sleep2snore replied to ged's discussion no EPR setting REsmed S8 spirit 2 autoset
Sep 8
Sleep2snore replied to ged's discussion no EPR setting REsmed S8 spirit 2 autoset
"I can't see why they would have it on CPAP and not on AUTO, I suspect it has been locked out by sleep clinic, resetting will not help. It might be right that earlier models might not have EPR as I do remember seeing something about that, but…"
Sep 8
Sleep2snore replied to Helen McIntyre's discussion Pressure under eyes
"ResMed also do Hybrid masks, but they are more like Nasal Pillows stuck on top of a mouth mask. These all look as if they are made by the same manufacturer to me, but they are an alternitive, however the Dreamwear looks better.  Make sure you…"
Sep 6

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