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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

Jonathan replied to The SleepGuide Crew's discussion Welcome to our Forum - Feel Free to Introduce Yourself Here.
"Hi I was a mouth breather.  I also slept flat on my stomach.  I now sleep on my side, and with a nose-only mask rapidly learned to keep my trap shut at night :)  The airway through my nose has significantly improved, which makes…"
yesterday
Andy Falconer replied to The SleepGuide Crew's discussion Welcome to our Forum - Feel Free to Introduce Yourself Here.
"Thank you both for the welcome and the advice! I've read a lot about the humidifiers, so I suspect this will be one of the first things I will purchase. I'm a mouth breather, so I'm hoping the hospital will provide a full mask when I…"
yesterday
Jonathan replied to The SleepGuide Crew's discussion Welcome to our Forum - Feel Free to Introduce Yourself Here.
"Hi Andy Sorry you've had a rough ride.  How times change.  My sleep study 10 years ago was just a finger pulse thing, and a camera.  I had 86 events per hour.  I guess we're all different, but the first night with my…"
Saturday
Iain Noble replied to The SleepGuide Crew's discussion Welcome to our Forum - Feel Free to Introduce Yourself Here.
"Andy, Sorry you have had so little support from the NHS. We have an excellent sleep clinic here in Cleveland. You won't have to surrender your driving licence but you will have to tell them if you are diagnosed with sleep apnea. Once you are…"
Saturday
Andy Falconer replied to The SleepGuide Crew's discussion Welcome to our Forum - Feel Free to Introduce Yourself Here.
"Hi everyone, I'm Andy and I am currently in the process of being diagnosed with OSA (I suspect), with an appointment at the Royal Stoke Uni Hospital to be fitted for a CPAP machine this coming Monday.   So far it has taken 12 months from…"
Friday
Andy Falconer is now a member of Hope2SleepGuide
Friday
Kath Hope replied to Linda's discussion Do charities take new surplus CPAP masks?
"Hi Linda I just wanted to say thanks for sending us your surplus cushions and headgear.  We've already given out one of the cushions to someone who was struggling with a split cushion.  We really do appreciate this and so did the…"
Dec 3
Sleep2snore replied to Judy Y's discussion Could I have developed Central Sleep Apnoea ?
"Hi Judy, Try drinking a glass if water before going to bed. Dehydration can play a part in the mornings."
Dec 2
Amanda Moore is now a member of Hope2SleepGuide
Nov 30
Judy Y replied to Judy Y's discussion Could I have developed Central Sleep Apnoea ?
"Hi again Kath, Just found how I can see Clear airway/Obstructed airway. So sorry for the previous question. It appears I have approx 80% obstructed. Thanks for your time, best regards"
Nov 28
Judy Y replied to Judy Y's discussion Could I have developed Central Sleep Apnoea ?
"Thanks for your answer Kath. The app I have is Philips Dreamapper . It tells me minimum/maximam/ 90% pressure, My AHI and mask fit, Hours usage. I cant see anything about obstructive or centrals. Is my app out of date, or my machine?"
Nov 28
Kath Hope replied to Judy Y's discussion Could I have developed Central Sleep Apnoea ?
"I don't think those symptoms are specific to central sleep apnoea.  Your app should tell you if those apnoeas are obstructive or  centrals.  It sometimes says 'CA.'  Sometimes when people first wake it takes a…"
Nov 27
Judy Y posted a discussion

Could I have developed Central Sleep Apnoea ?

HiI was diagnosed with severe sleep apnoea Jan 2017 after hiring a device from Hope2sleep. Think I had this problem for around 10 years. I eventually got my cpap machine in August 2017. I have had a few ups and downs, and had my machine adjusted a…See More
Nov 26
Edam replied to Edam's discussion Double inhaling
"Im on Warfarin for life because of leg DVT,s and Warfarin would be stopped 5 days before the operation. This could leave me at risk of another DVT.. Also the last time my Warfarin was stopped I has to self inject Heparin so my belly turned into a…"
Nov 25
Sleep2snore replied to Edam's discussion Double inhaling
"That sounds like a get out for the ENT surgeon. There are a lot of people gone through this op' and even bigger op's to the nose. Maybe he is just not up to it?"
Nov 22
Kath Hope replied to Linda's discussion Do charities take new surplus CPAP masks?
"Hi Linda.  Due to the way some of the manufacturer package their masks, eg multiple sizes of cushions, some clinics just hand the whole pack out to the patients, and then there are others that are more resourceful in that they take out the…"
Nov 22
Linda replied to Linda's discussion Do charities take new surplus CAPD masks?
"Thanks Kath and I will forward the spare masks on as you have suggested.  It seems very wasteful that my NHS provider gives me a pack which I believe costs well over £100 when I only require one mask.  Do you know if this is…"
Nov 21
Edam replied to Edam's discussion Double inhaling
"I think the combination of nasal polyps ,deviated septum and COPD is too much for the Resmed to sort out. The polyp in my left nostril does act like a one way valve and closes on exhale which may explain why the EPR increase helps. It looks like the…"
Nov 20
Sleep2snore replied to Edam's discussion Double inhaling
"Hummmm!  That just shouldn't work! There must be something unique to the way you breath when sleeping confusing the machine. It is all a bit strange and a bit confusing!  The Resperonics machines are slightly slower to respond, so it…"
Nov 19
bonum noctem posted a discussion
Nov 18

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