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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

bonum noctem posted a discussion
bonum noctem is now a member of Hope2SleepGuide
Kath Hope replied to Linda's discussion Do charities take new surplus CAPD masks?
"I know exactly what you mean Linda. It's good when people purchase them when unsure of their size, but wasteful otherwise.  You can send them to our Hope2Sleep Charity who run this forum and address is on the contact…"
Linda posted a discussion

Do charities take new surplus CAPD masks?

when I request a replacement medium Phillips Respironics mask from my NHS provider I am given a pack that includes all size masks and new headgear.  I have queried this and have been advised this is how they are supplied.  It seems a terrible waste.…See More
Edam replied to Edam's discussion Double inhaling
"I have finally found the answer  I have increased the EPR to 3 This has kept my pressure below 14 for the last 3 days . Im very annoyed that the hospital and Resmed had not increased this  For some reason increasing the EPR has reduced the…"
Glassdaisy joined The SleepGuide Crew's group
Edam replied to Edam's discussion Double inhaling
"Its me not the machine. The S9 has been checked by Resmed and no fault was found but the circuit board was changed as a precaution. I have used another S9 but had the same problem. I have been told by the hospital that despite my AHI being under 1…"
Sleep2snore replied to Edam's discussion Double inhaling
"Don't rule out a fault with the machine or restricted airflow. I would also not rule out that you might be one of the few that needs a different machine. In any case, it should not go to 20 and sit there, I would get it checked or replaced. If…"
Edam replied to Edam's discussion Double inhaling
"Before I make a decision I am going to try something different. I have noticed that when it goes up to 20 most times it has done so when the pressure has dropped to minimum which is 12 at present. I will increase the minimum pressure to 14 so…"
Nov 12
Edam replied to Edam's discussion Double inhaling
"I think its time to make a decision. Either buy another make of APAP or get referred to another hospital which supplies a different make"
Nov 12
Sleep2snore replied to Edam's discussion Double inhaling
"That is hard to believe.  A pressure of 20 is quite high and very few require that amount of pressure. 1 ltr/min is nothing, the machine should cope with that without any problems at all. A lot of people get mixed up with pressure and…"
Nov 11
Edam replied to Edam's discussion Double inhaling
"I thought I had this problem solved but it got stuck at 20 again last night. My 95% pressure was 19, AHI  0.1 and leak 1 l/min. Sleepyhead shows that it was stuck at 20 for approx 30 mins ."
Nov 11
Debra Wells is now a member of Hope2SleepGuide
Nov 9
Sleep2snore replied to Ruth Furniss's discussion Cold air
"Don't know what machine ou have, but a heated hose can help a lot. You can get them as a stand alone but it is not ideal. If your machine has the facility for a heated hose it might be worth the investment. Heating the room will help."
Oct 30
Sleep2snore replied to Renee Rowlands's discussion Recommendation please for Oximeter purchase.
"There are plenty on the market, but one thing I would make sure it did was to store the data for printing or downloading. There are plenty that say they do this and don't, so be aware of buying off Amazon or Ebay."
Oct 28
Kath Hope replied to Ruth Furniss's discussion Cold air
"Like you say yourself Ruth, warming up the bedroom will help, but also if you don't have a heated humidifier then that would help - as will covering the tube with a Hose Cover."
Oct 28
Steve Bacall is now a member of Hope2SleepGuide
Oct 28
Ruth Furniss posted a discussion

Cold air

Hi I have sleep apnoea & Copd this is my first winter using cpap, found it very hard to sleep last night because of breathing in cold air was wondering if anyone had any suggestions on how to warm the air up besides sleeping in a warm room? I…See More
Oct 28
Mark Darbyshire is now a member of Hope2SleepGuide
Oct 20
Bill Thomson added a discussion to the group Buy-Sell-Swap

ResMed DC-DC converter for S9

I have for sale a converter which allows the S9 machine, which requires a 24v supply, to run from a vehicle 12v or 24v DC socket, or direct from a 12v battery. The converter can power a humidifier and heated tube as well as the CPAP machine,…See More
Oct 13

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