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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

Edam replied to Edam's discussion Double inhaling
"I have been using   Remstar and S9 APAP,s for about 9 years now and my COPD was diagnosed at the same time. A consultant wanted to stop my Steroid inhaler completely as my COPD was not bad enough to require it but the nurse just…"
Tuesday
Sleep2snore replied to Chris Vesey's discussion Medistron batteries
"It is always good to have a dealer that you can trust and will sort out problems when they arise. It is always nice to have someone that has the time to sort things out with a customer and take time to do it rather than some salesman that don't…"
Tuesday
Sleep2snore replied to Edam's discussion Double inhaling
"Well the inhaler makes the lungs open up and if anything the dryness from a CPAP will dry them up and shut them down again. I am no doctor, but if you needed an inhaler before CPAP you would certainly need one after you start. Why did they cut you…"
Tuesday
Sleep2snore replied to Edam's discussion Twisted strap ouchhh!!
"What kind of strap is it, is it a cloth one or a silicone one? If it is a cloth one you could sew a strip along it to give it a bit more rigidity/stiffness. If it is a plastic one or a silicone one you could sew a bit of fabric round it to make it…"
Tuesday
Edam replied to Edam's discussion Twisted strap ouchhh!!
"I twisted the forehead strap again last night and OUCH!! Can anybody suggest a full face mask without the forehead strap. I cant use the Resmed Airfit masks as I seem to be exactly between sizes "
Tuesday
Edam replied to Edam's discussion Double inhaling
"Using the  increased steroid dosage inhaler, 200 /6 rather than 100/6, has reduced my 95% pressures by about 5 cm. Doing some detective work I have found that I was put onto a lower dosage inhaler in May last year. I think that is when the…"
Tuesday
John Wilkinson replied to John Wilkinson's discussion I've 'hit a wall' can any body help me?
"Thanks for your advice. I really appreciate your help. I wasn't aware that there different types of apnoeas. I will be seeing the sleep nurse next week. I will keep you informed. John "
May 17
John Wilkinson replied to John Wilkinson's discussion I've 'hit a wall' can any body help me?
"Thanks for that Kath. I am due to see the sleep clinic next week. Hopefully they will re-adjust the pressure. I will keep you informed. John"
May 17
Edam replied to Edam's discussion Double inhaling
"I have read that APAP machines are not suitable for people with Asthma and give the same problems that I have been having. I am now having to use twice the dose of steriods just to keep the APAP happy If I can ever get in touch with my hospital I…"
May 17
Kath Hope replied to Chris Vesey's discussion Medistron batteries
"Thanks Chris and we certainly are doing our homework Sleep2Snore.  Our charity work hard to get the right products at the right price for our fellow sufferers, and we have lots of loyal customers who purchase from us both to support the charity…"
May 17
Kath Hope replied to John Wilkinson's discussion I've 'hit a wall' can any body help me?
"Sorry to hear after a good start you've taken a step backwards, and it could well be due to the reduction in pressure.  We don't recommend adjusting pressures but you're right to contact your hospital who will probably re-adjust…"
May 17
Sleep2snore replied to John Wilkinson's discussion I've 'hit a wall' can any body help me?
"They have reduced it to far.  The max was 16, they should have left the machine at 18 if it is an APAP (automatic pressure) if it is a CPAP you have now same applies.  However, it might not be quite that straight forward as that as the…"
May 16
John Wilkinson posted a discussion

I've 'hit a wall' can any body help me?

I was diagnosed with severe OSA in November and I have been using a Philips Respironics CPAP machine and full face mask from early December up to now (about 5 months). My HPI's went down from 44 to about  14 in about 10 weeks and I was feeling much…See More
May 16
Sleep2snore replied to Chris Vesey's discussion Medistron batteries
"They are very costly things to have sitting around to go wrong or if you forget to charge them by their date. You could try to see if they will do it on a sale or return basis, them you could keep one or two.  However, I think most are ordering…"
May 15
Chris Vesey replied to Chris Vesey's discussion Medistron batteries
"Hi, I see from medistrom website they are looking for dealers, is it worth considering Kath"
May 15
Sleep2snore replied to Chris Vesey's discussion Medistron batteries
"I wish the ResMed was 12Vdc, it would make life a lot easier. I wonder why they need 24Vdc anyway? My APAP is not mine to and see why it has to be 24Vdc! I don't think the clinic might be to impressed if I opened it for a look. "
May 14
Sleep2snore replied to Edam's discussion Double inhaling
"I would like to see how the hospital is going to explain that your Apnoea is getting worse with an AHU of 0. That is almost incompetent. It might also be that it is not straight forward Sleep Apnoea you have and might benefit from an advanced…"
May 14
Chris Vesey replied to Chris Vesey's discussion Medistron batteries
"hi, just looked on internet, it seems that medistrom may not have a dealer in the uk but a company called sleep tight advertise the pilot 24 for £345, don't know about the co pilot. The very expensive one on amazon comes from Israel, good…"
May 13
Chris Vesey replied to Chris Vesey's discussion Medistron batteries
"hi, at the time amazon were selling the pilot for £285 and the co pilot for £137, gone up a lot since then chris"
May 13
Edam replied to Edam's discussion Double inhaling
"I have read that if you have Asthma a CPAP is better than a APAP  When the APAP increases the pressure it makes the asthma worse and then the APAP increases the pressure again which makes the asthma even worse ..... This is exactly whats…"
May 13

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