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**James @ Intus** · 15 December 2008, 10:11

How dare they combine a ResMed mask with a Respironics machine!

Glad to hear you get kitted up pretty fast, you're lucky to be near Papworth. They're really one of 3 or 4 hospitals that have their act together (setting the standards actually).

The dreaming is good, means you actually get to dreaming stage properly.

If you still get a dry mouth despite the humidifier at max, I wonder whether you drink enough water during the day. Could try and up your intake a bit.

I like the pics by the way, nice crips images! Thanks for posting them!

**scubapauly** · 15 December 2008, 15:57

From a patient point of view they seem to have a huge catchment area. There were guys in the ward with me from Suffolk, Norfolk and Warwickshire.

All the staff really knew their stuff, which was a great help.

**scubapauly** · 26 December 2008, 12:33

Sorry for the double post, just wanted to write an update.

Its been 2 weeks now on CPAP. The first few days were pretty amazing, much more awake and able to do more. Then came about a week of feeling really tired again and not sleeping well. Kind of fixed that, had to re-adjust the mask to stop leaks during the night.

I'm finding now that I'm sleeping really well. The only trouble is I seem to be really aching during the day. More muscle aches than joints. I was wondering if this is because I'm not used to getting any/much rest during the night, maybe i'm siezing up a bit?

I'm certainly able to do more but still feel quite tired, maybe I still need to catch up on years of lost sleep.

**James @ Intus** · 5 January 2009, 14:45

Thanks for the update, great to hear you are doing well. I've read a few official documents stating CPAP offers a comparatively high dose of the placebo effect which may explain why some people over-report initial success (not to say it's not true though, just perhaps perceived more than factual). That could explain why some have a more difficult second week. But as you hint at, it could also be that you and your body are adjusting to the new balance and with change we often see new things pop up.

Some people get aches because they are not used to lying flat for so long. This improves over time (or with a new mattress).

The idea of having to catch up also seems logical though it's hard to say what is fact and what is fiction. In other cases, people still feel tired because they remain on a less-than-ideal diet / exercise regime. Most people need a more holistic approach to rid themselves form tiredness completely.

Even when you are not totally problem-free yet, many organs will be very happy you tolerate CPAP well and they will reward you for it.

As your post was a week ago, I wouldn't be surprised if the aches had gone already. Muscles depend on oxygen so it's little wonder there's an after effect from a new balance in blood oxygen levels.

**scubapauly** · 9 January 2009, 17:34

Ah yes, most of the aches have gone now. Still waking up 3 or four times during the night though. Got to go back to Papworth end of Feb so will mention it then, just in case things need adjusting.

**scubapauly** · 14 July 2009, 08:54

I thought it was about time to update my post.

Things were going really well after getting my CPAP in December. I was back almost to normal by January, in fact I taught 2 First Aid at Work courses in Jan. Not been able to concentrate that well for months.

It all went a bit wrong by the end of March though. The tiredness came back big time. I saw Papwroth CPAP practitioner in May, after finding I was back to an almost zombie like state and unable to drive at all. Took another pulse oximeter test and it showed I was still having a few apneas but my heart rate wasn't settling. Pulse still up in the 130-140 area whilst asleep.

I was seen in June by a registrar and he thought I might have PLMD/Restless Leg problems. I've just had the full polysomnograph last week and am waiting for the results. I did manage to get one of the techies to give me a bit of a run down on the unnofficial verdict. She couldn't see any real eviudence of movement while I was asleep however I was still struggling to breathe. No real apneas but I was still snoring and having difficulties.

I haven't put on any weight since December, but so far have been upping the pressure on the machine regularly (with advice from Papworth) steadily now. I came back originally with the pressure at 12cm and its now at 18cm. According to the techie I might need a higher pressure type machine/ventilator such as VPAP.

I'm determined to get this back under control and not giving up on it yet. Its a little tough right now as I've been signed off from work due to the tiredness and lack of concentration (plus I can't drive now). Work won't let me back in, even to do the 'desk' part of my job, until I get 'fixed'.

Hopefully I'll have some more positive news agian soon.

Paul

**James @ Intus** · 14 July 2009, 09:39

Thanks for the update Paul, shame to hear about the new developments. It must have been really encouraging early on and then such a downer to find it's not all over. It's actually quite strange it went well for so long before this "relapse". Hopefully they'll find what's causing it soon so you're back working and fit again.

**threewheelweave** · 15 July 2009, 15:41

Ditto James' comments!

Hi scubapauly,

I was puton exactly the same set up as yourself but a lower pressure (8) and experienced a massive improvement in quality of life. I changed masks early on to the Liberty which suits me well. Sorry to hear that things are not going as well as previously - let us know what is happening.

James you must be tired yourself as your spelling is getting nearly as bad as mine!

" nice crips images" and "to rid themselves form tiredness completely"

You meant crisp and from; perhaps you need to get checked out???

Anyway enough with the teasing:

Agree with the aching muscles more "still" rest greatly relaxed higher oxygen levels in muscle tissue; also dreaming now like a young child - wonderful I'd missed it out completely.

Interested that you can snore with the CPAP on? How do you manage that?

Anyway thanks for the post really excellent

Cheers

TWW
UK

**scubapauly** · 24 July 2009, 10:33

OK, just spoke to Papworth and it looks like I'm going in on Monday. They said they are putting me on a Nippy machine.

Keep your fingers crossed for me.

Paul

**threewheelweave** · 24 July 2009, 15:44

Nippy

Hi scubapauly

Glad that you got a slot at Papworth, the Nippy 3 is an impressive machine very powerful and is often used by those with severe lung problems.

When I was in Papworth last we had 4 out of six on Nippy machines - an interesting point of note you may find that you cannot breath against this kit it is so strong it takes over completely - I spoke to several users and they all said the key to success was just forget about breathing and let the machine do all the work. Takes some getting used to but hopefully you'd rather know before hand.

The Nippy 3 is also used as the modern equivilent of an "iron lung" so it is well regarded in the medical world and has an excellent level of reliability. Hope they can get your sorted very soon - keep us posted and all the best!

Cheers

TWW
UK

**James @ Intus** · 3 August 2009, 11:32

Good to hear you are getting some relatively prompt attention there Paul. Nippy is pretty hard-core so if that won't sort it, I wonder what will! It's high-tech and with Papworth, you can trust they'll get it right. Let us know how you get on.

**scubapauly** · 4 August 2009, 07:34

I'm now the owner of a Nippy S machine.

Very odd getting used to it but just about there. I seem better so far so fingers crossed. Got to go back to Papworth in a month.

Paul

**threewheelweave** · 4 August 2009, 18:45

Nippy S !!! Latest Kit !!!

Hi Paul

Sounds like Papworth are looking after you well - I understand the S is the very latest bit of kit in the range!

I'd be interested in your posts as this is an altogether different level of machine! What has the experience been like so far?

Take care!

Cheers

TWW
UK

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