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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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Latest Activity

marek korzeniecki is now a member of Hope2SleepGuide
2 hours ago
Sleep2snore replied to Edam's discussion Changing hospital
"Ok, that makes a difference, you might find one hospital uses ResMed and the other Philips. Some do keep a better stock of masks than others though."
Sleep2snore replied to Simon Carr's discussion International Travel with CPAP
"Most security know what a CPAP machine is these days, however, these are points to watch for: Let the airline know you have a CPAP machine and inform them it will have to come in the cabin as hand luggage. Do NOT put it in the hold, it might end up…"
Simon Carr posted a discussion

International Travel with CPAP

Question regarding travelling internationally with my CPAP machine.Later this year my partner and myself are travelling to America to do Route 66. Now this will be the first time I have taken my CPAP with me. I know that majority of Airports know…See More
Chris Vesey replied to Chris Vesey's discussion Dvla / hospital
"Latest from dvla is that if your doctor says you are ok to drive then you can. They are still playing pass the parcel with my case, its a month since they had the doctors reply, I could have sorned the car and saved 3 months tax! Chris"
Edam replied to Edam's discussion Changing hospital
"I want to change because the other hospital, which is in a different trust, supplies a different make of mask. My present hospital only supplies one make of mask which is unsuitable for my nasal problems. Over the years I have spent hundreds of…"
Mar 16
Adam Cartwright replied to David thompson's discussion SELLING cpap airsense10 elite machine with travel bag and accessories in the group Buy-Sell-Swap
"Hi David I thought I'd check but I assume you have sold your Airsense 10 Elite?"
Mar 16
Adam Cartwright joined The SleepGuide Crew's group
Mar 16
Profile IconAdam Cartwright and Linda Cook joined Hope2SleepGuide
Mar 16
Sleep2snore replied to Savannah A.'s discussion Sleep Centre in UK that measures UARS
"That is a difficult one, but if you have a Polysomnography done a good Sleep Doctor should spot the signs, however, it is often missed unless the patient mentions it or ENT (if you attended there first before referral) suspects you might have…"
Mar 16
Sleep2snore replied to ROBERT O'BRIEN's discussion c pap mask
"Yes, masks for one person do not mean they are for everyone, getting a supplier to give ou a refund if it is not suitable is good, but trying it on and lying down with your machine on for an hour or so is the only real way of trying a mask. …"
Mar 16
Sleep2snore replied to Edam's discussion Changing hospital
"It will depend on the Sleep Clinic or hospital, however, if you AHI is 1 why do you want to change? You might be allowed just to keep what you have already and the equipment transferred to the new Sleep Clinic. As your AHI is so low I very much…"
Mar 16
Edam posted a discussion

Changing hospital

I am considering asking my GP to refer me to another hospital for the supply and monitoring of CPAP .Would I just be supplied another CPAP and mask by the new hospital or would a new sleep test have to be done. As my original diagnosis was made…See More
Mar 15
Kath Hope replied to ROBERT O'BRIEN's discussion c pap mask
"I agree with giving it your best shot at getting the 'right' mask for you Bob, but even with all the best reviews in the world it's not possible to guarantee if it will be the 'right' mask for you.  It's why when…"
Mar 13
ROBERT O'BRIEN posted a discussion

c pap mask

hi everyone I am considering buying a more comfortable nasal mask, I am looking at the JOYCE SILK GEL NASAL MASK.  I have looked for reviews but cannot find any , has anyone on this forum used this mask and is it worth a hundred pounds.my current…See More
Mar 13
Kath Hope replied to Savannah A.'s discussion Sleep Centre in UK that measures UARS
"Unfortunately, there aren't as many as we'd like there to be.  The only way of truly diagnosing UARS is via Esophageal Manometry (Pes) which is rarer still here in the UK.  Take a look at our charity's webpage on this…"
Mar 12
Savannah A. posted a discussion

Sleep Centre in UK that measures UARS

Hi there,I have a connective tissue disorder that is associated with UARS (Upper Airway Resistance Syndrome).I was wondering whether there was a sleep centre in the UK that measures UARS in patients.I would be very grateful to hear from others.Many…See More
Mar 12
Savannah A. updated their profile
Mar 12
Boyertown replied to Julie Straiton's discussion Severe hair loss with mask straps ?
"Has there been any more news on this subject?  I am experiencing hair loss too. Thank you."
Mar 12
Boyertown updated their profile
Mar 12

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