Those with Sleep Apnoea, your advice please...

Those with Sleep Apnoea, your advice please...

Author
Discussion

SultanOfSwing

Original Poster:

704 posts

154 months

Sunday 2nd June 2019
quotequote all
Hi all,

I have been diagnosed with moderate sleep apnoea. And I am being referred to Oxford for CPAP but the waiting time is currently over 3 months.

I will be attending this appointment, when it comes, but for now I have purchased a second hand CPAP machine, which is an auto pressure one, in order to see me through.

The machine I have bought is this...

https://www.eu-pap.co.uk/sleepcube-autoadjust-plus...

But second hand, for considerably less.

I now need to find a mask, and have asked the wife if I breathe through my nose or mouth during the night to which she replied "well, kind of both, through your mouth but you sound really 'nasally'"

So after hearing that I think I need a full face mask? I also worry that with a nasal mask only, what if I have a cold? And a stuffy nose?

I'm new to all this so advice appreciated.



stevensdrs

3,232 posts

207 months

Sunday 2nd June 2019
quotequote all
I had one for 3 months, full face mask on auto pressure. Hated the damn thing as it would go onto full blast and wake me up. I went on a carbohydrate free diet, lost 3 stone and the apnoea went away. I really enjoyed handing the machine back for some other poor sucker to use.

SultanOfSwing

Original Poster:

704 posts

154 months

Sunday 2nd June 2019
quotequote all
stevensdrs said:
I had one for 3 months, full face mask on auto pressure. Hated the damn thing as it would go onto full blast and wake me up. I went on a carbohydrate free diet, lost 3 stone and the apnoea went away. I really enjoyed handing the machine back for some other poor sucker to use.
I fear i will also hate it, but I absolutely have to try and stick with it. My health, and happiness, and life for that matter depend on it.

I am 6ft, and 12 stone, so i cant lose any more weight!

silvagod

1,054 posts

167 months

Sunday 2nd June 2019
quotequote all
I have the Resmed machine ( https://mysleep.resmed.com/GB/en/CPAP-Machines/Hom... that I got via the NHS and been using for about a year. I started with a mouth and nose mask but kept getting bad seals and leakage. I then changed to nasal 'cushions' and use these along with a chin strap to keep my mouth closed overnight.

I have had the odd blocked nose when it's impossible to use the cushions so have reverted back to the mouth and nose mask for those nights, or not used the machine at all for one night.

Using either of the above does take some getting used to, but I feel much better for it.

SultanOfSwing

Original Poster:

704 posts

154 months

Sunday 2nd June 2019
quotequote all
silvagod said:
I have the Resmed machine ( https://mysleep.resmed.com/GB/en/CPAP-Machines/Hom... that I got via the NHS and been using for about a year. I started with a mouth and nose mask but kept getting bad seals and leakage. I then changed to nasal 'cushions' and use these along with a chin strap to keep my mouth closed overnight.

I have had the odd blocked nose when it's impossible to use the cushions so have reverted back to the mouth and nose mask for those nights, or not used the machine at all for one night.

Using either of the above does take some getting used to, but I feel much better for it.
Is that the machine they usually give out on the NHS? Seems very good...

TDowney2394

536 posts

132 months

Monday 3rd June 2019
quotequote all
Speaking as someone who has recently been diagnosed with suspected sleep aponea (pending a sleep study), it kicked me into going on a virtually carb free diet combined with working with a personal trainer in my local crossfit place. My aim is by the time I get to the sleep study in October that I won't really need the mask.

silvagod

1,054 posts

167 months

Monday 3rd June 2019
quotequote all
SultanOfSwing said:
Is that the machine they usually give out on the NHS? Seems very good...
Yes, that's the one. They also supply a mask that fits / suits you, I had been given 3 different ones before settling on the nasal cushions.

To the others that have replied, it's not all about weight, but good for you if you can sort it by weight loss!

SultanOfSwing

Original Poster:

704 posts

154 months

Monday 3rd June 2019
quotequote all
silvagod said:
SultanOfSwing said:
Is that the machine they usually give out on the NHS? Seems very good...
Yes, that's the one. They also supply a mask that fits / suits you, I had been given 3 different ones before settling on the nasal cushions.

To the others that have replied, it's not all about weight, but good for you if you can sort it by weight loss!
Wow, thank you NHS! That's bloody good isnt it.

Mortgage_tom

1,352 posts

233 months

Monday 3rd June 2019
quotequote all

I was diagnosed last summer after complaining about snoring. The resmed machine is what I was given by the NHS & a full face mask to start with. The ENT guy gave me a CT scan and scheduled an operation on my nose as apparently I couldn’t breath through it. I had never really noticed.

The machine takes some getting used to at first, but you do get used to it.

Ive had the nose operation, trimmed down from 15 stone to 11 & 3/4. Next step is some plastic splints stapled to the back of my throat, recommended by ENT guy but cant be done on NHS. Simple procedure done under a local in about 20mins, costs about £900. But the ENT guy though I would be suitable for it and would help reduce my apnoea.

Once that all done then I really hope a new sleep study will show I have reduced my apnoea enough to not require the machine anymore.

What will help you depends on your build. I am told I don’t look like a sleep apnoea patient by both the ENT guy and the anaesthetist.

The diagnosis was a great thing though! Since using the machine I have found so much more energy and enthusiasm for life! So although it not great news, be thankful you know about it and can seek treatment.

227bhp

10,203 posts

135 months

Monday 3rd June 2019
quotequote all
SultanOfSwing said:
silvagod said:
I have the Resmed machine ( https://mysleep.resmed.com/GB/en/CPAP-Machines/Hom... that I got via the NHS and been using for about a year. I started with a mouth and nose mask but kept getting bad seals and leakage. I then changed to nasal 'cushions' and use these along with a chin strap to keep my mouth closed overnight.

I have had the odd blocked nose when it's impossible to use the cushions so have reverted back to the mouth and nose mask for those nights, or not used the machine at all for one night.

Using either of the above does take some getting used to, but I feel much better for it.
Is that the machine they usually give out on the NHS? Seems very good...
No it isn't, it's totally area dependent.
They'll probably give you a nose mask after measuring you up. What you'll find is your nose can't block up 100% so you'll always be able to breathe. Because you've got pressurised air against your nose you won't be able to use your mouth to breathe in anymore.

airbusA346

1,170 posts

160 months

Monday 3rd June 2019
quotequote all
I'm on NIV (non-invasive ventilation) for OSA and nocturnal hypoventilation.

Everyone is different regarding masks. Just because one mask works for one person, doesn't mean it will work for you. For example of all the different masks available I can only use one mask which covers my whole face (and just happens to be the most expensive one on the market at £175).

Some clinics are very restrictive with regards to different masks being available (some only have one model of full face mask and nasal mask). Others have a lot of choice. Every clinic is also different with regards to the machines they give out. Some give out automatic pressure ones with full data and some give out basic fixed pressure versions with no data recording apart from hours the machine is used.

Also weight isn't always the cause of OSA. I know a few people who have lost weight and they've had to have the pressure on their machines increased.

SultanOfSwing

Original Poster:

704 posts

154 months

Tuesday 4th June 2019
quotequote all
Thanks very much for all the info thus far. Very helpful.

Another question, do I need to notify the DVLA? This has not been mentioned at all by the Sleep Specialist Doc who has diagnosed me. I also note that the term 'excessive sleepiness' has not been used.

I have read that Moderate Sleep Apnoea without mention of excessive sleepiness does not need to be reported.

I will check with Doc but wondered if anyone on here knew.

AJB88

13,427 posts

178 months

Tuesday 4th June 2019
quotequote all
I seem to have developed SA over the last year.

I used to be 18 stone (I'm 5ft 8) I slimmed down over 2 years to 10st12, I've since come back upto about 12st5.

I had a SA test done about 2 years ago and it came back fine, been sent a letter awaiting an appointment.

Just been given private medical insurance by my company, hoping the documents come through soon so I can get it sorted through them.

SultanOfSwing

Original Poster:

704 posts

154 months

Thursday 6th June 2019
quotequote all
Cpap machine arrived today. Now just waiting for the hose and mask.

Actually looking forward to using it!

227bhp

10,203 posts

135 months

Thursday 6th June 2019
quotequote all
SultanOfSwing said:
Cpap machine arrived today. Now just waiting for the hose and mask.

Actually looking forward to getting some uninterrupted sleep
EFA wink

I'm noting with interest some of the times which people are posting on this thread hehe

psi310398

9,712 posts

210 months

Thursday 6th June 2019
quotequote all
AJB88 said:
EDITED

Just been given private medical insurance by my company, hoping the documents come through soon so I can get it sorted through them.
I hope you won't be disappointed but don't hold your breath (to coin a phrase).

BUPA told me that it won't fund anything to do with SA.

AJB88

13,427 posts

178 months

Thursday 6th June 2019
quotequote all
psi310398 said:
I hope you won't be disappointed but don't hold your breath (to coin a phrase).

BUPA told me that it won't fund anything to do with SA.
ah damn, think the works policy is with AXA PPA or something.

I'll just wait for my NHS letters then.

AJB88

13,427 posts

178 months

Thursday 6th June 2019
quotequote all
227bhp said:
EFA wink

I'm noting with interest some of the times which people are posting on this thread hehe
Night shifts for me wink been asleep all day even though I dont feel like I have haha

silvagod

1,054 posts

167 months

Friday 7th June 2019
quotequote all
SultanOfSwing said:
Thanks very much for all the info thus far. Very helpful.

Another question, do I need to notify the DVLA? This has not been mentioned at all by the Sleep Specialist Doc who has diagnosed me. I also note that the term 'excessive sleepiness' has not been used.

I have read that Moderate Sleep Apnoea without mention of excessive sleepiness does not need to be reported.

I will check with Doc but wondered if anyone on here knew.
Your doctor / sleep clinic will decide if they need to notify the DVLA. Providing your CPAP is working and helping, then there should be no need to tell them. I was informed it wasn't my choice though.

Lord Flashheart

3,777 posts

200 months

Friday 7th June 2019
quotequote all
SultanOfSwing said:
Hi all,

I have been diagnosed with moderate sleep apnoea. And I am being referred to Oxford for CPAP but the waiting time is currently over 3 months.

I will be attending this appointment, when it comes, but for now I have purchased a second hand CPAP machine, which is an auto pressure one, in order to see me through.

The machine I have bought is this...

https://www.eu-pap.co.uk/sleepcube-autoadjust-plus...

But second hand, for considerably less.

I now need to find a mask, and have asked the wife if I breathe through my nose or mouth during the night to which she replied "well, kind of both, through your mouth but you sound really 'nasally'"

So after hearing that I think I need a full face mask? I also worry that with a nasal mask only, what if I have a cold? And a stuffy nose?

I'm new to all this so advice appreciated.
Just out of curiosity, do you have a short jaw?