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Permalink Reply by Catherine Alexander on January 29, 2013 at 23:36

Hi everyone! I have been using BiPAP for 8 years due to muscle weakness/kyphoscoliosis caused by congenital muscular dystrophy.

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Permalink Reply by Terry Vella on January 29, 2013 at 23:42

Welcome, Catherine, you should be an expert by now, it's good to have people that use BiPAP on here most of us only use straight CPAP or Auto's like myself.

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Permalink Reply by Catherine Alexander on January 30, 2013 at 20:35

Terry Vella said:

Welcome, Catherine, you should be an expert by now, it's good to have people that use BiPAP on here most of us only use straight CPAP or Auto's like myself.

Thanks for the welcome Terry. Yeah I'm pretty used to it all now, though still yet to find a mask I am 100% happy with (as I'm sure others can relate to)!

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Permalink Reply by Kath Hope on January 31, 2013 at 0:15

Great to have you on here Catherine, and especially as an experience BiPAP userLook forward to speaking with you in our forum discussions.

Catherine Alexander said:

Hi everyone! I have been using BiPAP for 8 years due to muscle weakness/kyphoscoliosis caused by congenital muscular dystrophy.

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Permalink Reply by Javed Iqbal on February 1, 2013 at 15:52

Hi all, I've just joined after being invited by Kath on twitter. I may have sleep apnoea and this was picked up by the aneasthetist when I had oral surgery under general aneasthetic a few days ago. He advised me to do the epworth sleepiness test where I have scored 18 and I saw my GP yesterday who has now referred me to the sleep disorders clinic at hospital, the appointment is in March. My GP also advises that I stop smoking and try to lose 3 stone in weight.

I had never even heard of sleep apnoea until 3 days ago but I've known about my snoring problem for several years and it's always been a joke in our house about how easily I fall asleep. I am always tired, even after sleeping for a long time e.g. 12 hours and I could easily fall asleep on a washing line lol. I am 47 years old but right now I feel more like 90 years old, I have worked all my life and I am now worried that my health problems are going to affect my job. I cannot pay the bills if I don't work!

Anyway, I am going to find out as much as I can about sleep apnoea and then I'll see what the sleep disorder clinic say in March and take things from there.

 

Regards to everyone

 

Jav

    

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Permalink Reply by Steve Clarke-Keating on February 1, 2013 at 16:02

Hi Javed, welcome!

Kath's a goodun isn't she, she roots people out and brings them into the fold!

Wow, 18 on the scale? That suggests very severe apnea. I hope it gets sorted quickly if that's the case.

I get told (as do nearly all of us overweight apnea sufferers) to lose some weight, but let me tell you, when you're on the undiagnosed side of it and suffering like hell with the sleepiness, it ain't gonna happen! First of all, you'll not possess anything like the required strength to exercise in order to lose weight, and secondly, there's research showing that long term fatigue can severely inhibit the bodies ability to increase metabolic rate and use fat as a fuel. Without that, the weights going nowhere. I put my weight loss goals on hold until I got used to my CPAP, which is now happening very nicely, and now I'm starting to get back to normal energy levels so I can exercise.

I'd say just try to be as balanced and reasonable with your food as you can for now which is a good lifestyle change anyway, but don't expect oodles of weight loss until your sleepiness is sorted.

Fingers crossed your referral comes through quickly!

Steve

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Permalink Reply by Jonathan on February 1, 2013 at 16:31

Hi,

I was diagnosed with severe sleep apnoea a few years ago.  I was issued with a CPAP machine by my local hospital.  I quickly got used to it, and because I use it, I am fit and healthy and it doesn't interfere with my work.  Before diagnosis, I was falling asleep in meetings at work, at the barber's, and in the dentist's chair.

Jonathan.

Javed Iqbal said:

I am 47 years old but right now I feel more like 90 years old, I have worked all my life and I am now worried that my health problems are going to affect my job. I cannot pay the bills if I don't work!

Anyway, I am going to find out as much as I can about sleep apnoea and then I'll see what the sleep disorder clinic say in March and take things from there.

 

Regards to everyone

 

Jav

    

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Permalink Reply by Javed Iqbal on February 1, 2013 at 16:35

Thanks for that Steve, to be honest I knew that I was carrying an extra few pounds but I've never regarded myself as being overweight. I have reasonably good body tone everywhere except my stomach & perhaps my neck. I weigh 12.5 stone and I think I'm around 5'5"-5'6" in height. My GP suggested losing 3 stone in weight which seems rather alot.

You're right though, there is no way I have the energy levels right now to go & hit the gym but I shall at least walk a little more instead of driving etc, it's a start at least.

My appointment at the hospital is over 7 weeks away which seems along time to wait while suffering from this condition, is there anything I should be doing to ease the symptoms etc?

 

Jav  

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Permalink Reply by Kath Hope on February 1, 2013 at 18:12

Hi Javed, and glad I spotted you on TwitterThe main reason I contacted you was when I saw you were visiting your GP, as so often our GP's don't/won't refer people for a sleep study. 

I wasn't particularly overweight either - had just accumulated middle age spread which was hard to shift.  Easily lost it after being on CPAP a short while though, but even after going too thin by losing 2.5 stone my sleep apnoea was still just as bad.  With a lot of people it's nothing to do with weight.  Take a look at the blog I wrote on weight issues http://www.sleepapnoeablog.com/2012/04/ and I agree with Steve that it's really hard to lose weight with sleep deprivation.

7 weeks does seem a long time to wait, but in some areas it's even longerMeanwhile, don't smoke or drink any alcohol within 3-4 hours of bedtime, try to sleep on your side, try to get your nasal airways clear + don't eat your evening meal within 3 hours of bed.

You have your anaesthetist to thank for spotting this Javed, and once you're on treatment your work won't be an issue - you'll hopefully get a new lease of life

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Permalink Reply by Arie Klerk on February 1, 2013 at 18:52

Javed, you're not alone, man! A warm welcome from the Netherlands, where only about 60,000 have OSAS (Obstructive Sleep Apnoea Syndrome) diagnosed out of 600,000 (guesstimate) not even knowing what it is. So spread the word and you will find even more friends... The doctors hardly think of it and who seeks a medic for snoring or being sleepy?

You can be glad that you're diagnosed, help is on its way, and it works!!

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Permalink Reply by Terry Vella on February 1, 2013 at 20:45

Javed, welcome, to answer your question on what to do, try to get you appointment bought forward, it may not seem like it but everyday counts, yu will have to have sleep study, then go back for the results, if you have SA and it sounds like it, a second sleep study and finally get your CPAP which could take months in total. Read some of he other posts on here to see what others have been through. In the short term, try to sleep on your side or stomach, Obstructive SA is cause mainly by our tongue or throat collapsing and blocking our airway, you could having your head elevated more but during sleep we more and toss and turn so there is no real treatment except a CPAP machine. There is no cure for SA only a treatment so if you are diagnosed with it you have to use a CPAP machine everytime you sleep even naps and you will have to wear a mask during those times. Only 25% of people stick with it and we are the lucky 25% because the benefits far outweight the disadvantages. Keep asking questions and learn as much as you can about it as knowledge is power, good luck.

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Permalink Reply by Kath Hope on February 1, 2013 at 20:57

Those are interesting statistics that you put Terry from your side of the world.  There is definitely a much higher percentage than 25% of people who stick with their treatment here in the UK.  In fact I would even estimate at least 80% although perhaps not as 100% compliant as we are.  This could probably be due to the fact that our equipment is provided by the NHS, so they can insist that if they don't see the evidence of usage hours, then they'll take the machine back.  Added to this is the fact that our sleep clinicians have to sign a report to the DVLA so people can get their driving licences back for permission to drive with successful therapy.

Terry Vella said:

.....Only 25% of people stick with it and we are the lucky 25% because the benefits far outweight the disadvantages.....

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