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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

Frances Coiwn updated their profile
Wednesday
Frances Coiwn replied to The SleepGuide Crew's discussion Welcome to our Forum - Feel Free to Introduce Yourself Here.
"Thanks for the warm welcome. Started CPAP therapy early December having been diagnosed with severe Sleep Apnea. Over the past 10 weeks or so I have slowly adapted to using CPAP, really struggleing at times with mask fit, the having the flu which…"
Tuesday
Frances Coiwn is now a member of Hope2SleepGuide
Tuesday
Edam replied to Edam's discussion APAP or BIPAP
"I checked with my hospital but they dont supply Bipap,s to outpatients so looks like Im stuck with the S9"
Feb 9
SleepyHead posted a discussion

NHS or Private to get diagnosis to determine treatment

Hi,  With the help of a hope2sleep screening test indicating I may have moderate sleep apnea, I am hopefully going to get my GP to finally agree to refer me to a sleep specialist (I have been trying for 6 months).  I have some concerns over how long…See More
Feb 9
SleepyHead replied to The SleepGuide Crew's discussion Welcome to our Forum - Feel Free to Introduce Yourself Here.
"I've learnt a lot in a short space of time through Hope2Sleep. Look forward to joining discussions on the forum."
Feb 9
SleepyHead updated their profile
Feb 8
Bill Thomson replied to Bill Thomson's discussion ResMed DC-DC converter for S9 in the group Buy-Sell-Swap
"Item now sold"
Feb 7
Glen Vaal replied to Bill Thomson's discussion ResMed DC-DC converter for S9 in the group Buy-Sell-Swap
"I look forward to your text with payment account details. Either is Ok. I will reply with my address. Regards, Glen"
Feb 7
Bill Thomson replied to Bill Thomson's discussion ResMed DC-DC converter for S9 in the group Buy-Sell-Swap
"Glen - apologies for not replying sooner, but my phone died. I now have a temporary fix (the replacement should arrive today anyway) so I will text you. I have also sent a message via the forum, but they are limited to 200 characters."
Feb 7
SleepyHead is now a member of Hope2SleepGuide
Feb 7
Sleep2snore replied to May's discussion Alternatives to cpap
"You can buy smaller machines for travel, but they are not so adaptable. There are also MAD devices to hold your jaw forward (these tend to only work with MILD cases) and there are also tongue holding devices that hold the tongue forward, these have…"
Feb 6
Sleep2snore and Edam are now friends
Feb 6
Sleep2snore replied to Edam's discussion APAP or BIPAP
"An APAP with EPR is almost Bipap. The Sleep Centre would know from their readings if you would be better with another type of machine, if you had a home study you need to take it up with your GP and raise it with your Sleep Centre."
Feb 6
Sleep2snore replied to Edam's discussion Double inhaling
"EPR just reduces the pressure when you breathe out, this makes it easier to breathe out when on higher pressure. Current thought is that the higher setting the EPR is the higher pressure is required, however I have not found this, but it does affect…"
Feb 6
Glen Vaal replied to Bill Thomson's discussion ResMed DC-DC converter for S9 in the group Buy-Sell-Swap
"Thanks for the fast reply. On the basis that its all 100% Ok and no physical damage then I would like to proceed with the postage option at £30, please*. How would you like to proceed, presumably off the forum given we'll get…"
Feb 6
Bill Thomson replied to Bill Thomson's discussion ResMed DC-DC converter for S9 in the group Buy-Sell-Swap
"Glen, yes I still have the converter. i am in Storrington, which is roughly between Worthing and Horsham. bill"
Feb 5
Glen Vaal replied to Bill Thomson's discussion ResMed DC-DC converter for S9 in the group Buy-Sell-Swap
"Hi Bill, is the Resmed S9 DC converter still available? I'm not sure how public this reply message is - however I'll "risk" using my phone number 07487706664. I'm nr Woking, Surrey. Where are you in West…"
Feb 5
Glen Vaal joined The SleepGuide Crew's group
Feb 5
Glen Vaal is now a member of Hope2SleepGuide
Feb 5

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