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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

JonnyJ is now a member of Hope2SleepGuide
5 hours ago
N replied to Bernadette Plunkett's discussion Advice on ordering a CPAP machine from overseas
"Update on DreamMapper: I sent an email to DreamMapper (as indicated in the App) with a pic of the back of the machine showing the serial number. They replied after a couple of days saying that I can now add my DreamStation Go Travel machine as a…"
Friday
Edam updated their profile
Wednesday
N replied to Bernadette Plunkett's discussion Advice on ordering a CPAP machine from overseas
"Very interesting conversation; many thanks. Philips says (website) the machines are expected to last about 5 years. We’ll see.  I think that if you travel a lot and/or for extended periods you need something very portable. if you are away…"
Tuesday
Sleep2snore replied to Bernadette Plunkett's discussion Advice on ordering a CPAP machine from overseas
"It is the manufactures own rules, but they will not look at a machine bought overseas under warranty. If you ask ResMed, they will only say that they will not honer any warranty if you buy a machine abroad. They know that they can't stop you…"
Monday
N replied to Bernadette Plunkett's discussion Advice on ordering a CPAP machine from overseas
"Hello, Yes, it is a very old fashioned way of doing business. Apple used to do the same years ago until they realised that people travel and use the Internet, and now all their products cost more or less the same globally. Furthermore, as we still…"
Feb 19
Kath Hope replied to The SleepGuide Crew's discussion Welcome to our Forum - Feel Free to Introduce Yourself Here.
"Not all the clinics like supplying the FitLife (total face) mask as it's the most expensive one.  It's been a favourite one of mine for a long time, and in the early days I had to purchase it myself, but my clinic does now.  Hope…"
Feb 18
Kath Hope replied to Chris Vesey's discussion Dvla / hospital
"Yes it's annoying Chris.  However, due to the fact that the DVLA themselves don't appear to know how to handle this all correctly (it depends who you reach at the time) then it's advisable not to email or ring them, but to rely…"
Feb 18
Kath Hope replied to Bernadette Plunkett's discussion Advice on ordering a CPAP machine from overseas
"Welcome to the forum N.  Sorry to hear about your experience, and in actual fact the USA Store have broken the rules sending the machine from the USA as they're not supposed to.  Although they can be cheaper, it can work out more…"
Feb 18
N replied to Bernadette Plunkett's discussion Advice on ordering a CPAP machine from overseas
"Hello, I ordered a DreamStation Go Auto CPAP machine from the CPAP Shop in the US - as advised on the Philips US website.The machine is not available in the UK and I wanted it for travelling - I have a DreamStation with humidifier from the NHS but…"
Feb 18
N replied to John Wilkinson's discussion Dreamstation humidifier heated hose and simplus 'mask type' settings
"Hi John, I had the same problem until I disvovered that the setting for the heating was “adaptive” (works following a piece of software that switches the humidifier on/off during the night), as opposed to “fixed”. I changed…"
Feb 18
N replied to Edam's discussion Amara view mask
"Hi Edam, There are several reviews on YouTube about the Amara; the results are very  mixed. I tried it and I found that it leaked too much; a real pity as the idea is very good. I then tried the ResMed F-20 (full-face, no forehead support) and…"
Feb 18
N is now a member of Hope2SleepGuide
Feb 18
Chris Vesey posted a discussion

Dvla / hospital

Hi,Wrote to the dvla for the correct form, phoned them when nothing arrived, form came a week later. Filled it out and sent it back 3 weeks ago, a week ago I had a letter a week ago saying they had written to the cosultant, resmed agreed to send a…See More
Feb 18
Sven Mischkies replied to The SleepGuide Crew's discussion Welcome to our Forum - Feel Free to Introduce Yourself Here.
"Hi, thanks for the responses. I tried to loosen the straps to the point just before it starts leaking, but to no avail. I thought the Amara View would be the worst mask for me, because it sits right there where I get the numbness from the…"
Feb 16
Edam replied to Edam's discussion Amara view mask
"Respironics have confirmed that the slot is 2.5cm on the small and mediom cushions and 3 cm on the large"
Feb 15
Edam replied to Edam's discussion Amara view mask
Feb 15
Edam posted discussions
Feb 14
Edam replied to Edam's discussion Amara view mask
"Thanks for that. After looking through 7 pages of reviews I found somebody who had measured the slot at 1in by 0.5 in at its shortest.  As my nose is about 1.25 in wide any movement would cause a major leak. I wish Respironics would publish a…"
Feb 14
Sleep2snore replied to Edam's discussion Amara view mask
"There is some information here https://www.cpap.com/blog/amara-view-respironics/ scan down the page to see helpful comments and a guide."
Feb 14

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