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  • Manda Liversage

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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Sleep2snore replied to Bethany's discussion Help for the hubby
"The two things that come to mind is diabetes and low blood pressure.  Though I think they would have checked for diabetes, a sudden drop in blood pressure is more difficult to catch.  Has he had his heart checked?  Also there is a…"
Jun 12
Bethany replied to Bethany's discussion Help for the hubby
"Thank you for the welcome.  It can get very frustrating, especially when we hear stories like yours with a very long fight before getting any actual diagnosis. We have feeling that we are also going to be on a very long road before we find…"
Jun 8
Bethany replied to Bethany's discussion Help for the hubby
"His CPAP machine is currently set at 7.5cmph, it was originally a little lower but after his check up they advised to increase it. He has follow ups with a sleep doctor every 3 months for the first year (unless we are having problems then we can go…"
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Vivienne Roberts joined The SleepGuide Crew's group
Jun 6
Sleep2snore replied to Mags's discussion What is a good oxygen Oximeter
"You should have got the manual with the Airsense 10 Autoset? If you didn't get it AIRSENSE RANGE MANUAL . pdf"
Jun 6
Sleep2snore replied to Chris Vesey's discussion What pressures?
"I hope they set the low pressure up and that it is not left 4 to 20. I find a lot of people is given machines set up like this and that is not really good. It is not recommended that you shift the pressures on an NHS machine, the clinic will not be…"
Jun 6
Sleep2snore replied to Bethany's discussion Help for the hubby
"Is it a CPAP machine with a fixed pressure he has? It might be that a fixed pressure machine is not the right one for him or he may have a complicated Sleep Apnoea, in other words there are other things going on other than just his throat…"
Jun 6
Kath Hope replied to Chris Vesey's discussion What pressures?
"Hi Chris I think you mean 'APAP' rather than 'acap' and if so, it will have automatic pressures.  It's not really recommended to alter your own pressures, and people only usually do that in desperation if they…"
Jun 6
Kath Hope replied to Bethany's discussion Help for the hubby
"Welcome to our forum Bethany, but so sorry to read of what you're both going through.  Glad your husband's severe sleep apnoea got picked up finally and at least you know he's on good treatment for that.  However, it's…"
Jun 6
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Jun 6
Bethany posted a discussion

Help for the hubby

Hello everyone, I am hoping that maybe someone out there has been through what my husband is currently having to deal with. Three years ago my husband randomly collapsed at his place of work (hes an engineer and works with machinery so naturally him…See More
Jun 5
Chris Vesey posted a discussion

What pressures?

Hi,I was given my resmed airsense 10 by the hospital and instructed in its use. At no time were pressures mentioned and i have read of people altering the pressures. As mine is an acap does this mean that the pressure is set automatically by the…See More
Jun 4
Mags updated their profile
Jun 4
Mags replied to Mags's discussion What is a good oxygen Oximeter
"Thanks Kath Will have a look in the morning and let you know"
Jun 4
Kath Hope replied to Mags's discussion What is a good oxygen Oximeter
"The Airsense Autoset does show the data in you look in the 'Sleep Report' section on your screen you can then scroll down to AHI and should also be able to see leakage.  If you can't see the AHI then it means the hospital have…"
Jun 4
Mags replied to Mags's discussion What is a good oxygen Oximeter
"The Machine is Res Med AirSense 10 AutoSet"
Jun 3
Kath Hope replied to Mags's discussion What is a good oxygen Oximeter
"It does sound to me like the hospital perhaps don't realise what is out there to help us all  Margaret, because some of our hospitals even supply liners, and many that don't refer people to our charity for them.  I use them…"
Jun 3

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