I don't actually snore-am I odd???

[Romaine]

Hello fellow cpap people,

I'm a newbie to the world of cpap, having had mine for just 6 weeks, and felt the need to share and seek advice!

This all started because I haven't slept through the night since I was a teenager, prior to which I used to walk, talk etc in my sleep as a kid. I'd always put it down to other issues (shift work/asthma/anxiety etc.).
So-I've always had sleep problems.

Over the last year, ironically after losing a significant amount of weight, my symptoms got worse. I was waking up, breathless, every 1.5 hours, and having to pee (at one point I thought I might be the first woman to have grown a prostate!!!) and was exhausted all the time.

Went to my GP 3 times in space of 2 months complaining of exhaustion/problems sleeping-completely useless!!! He told me it was catarrh, which was an interesting diagnosis. So- I changed doctor!!! New doc referred me immediately, had a home sleep test, and I've been diagnosed as having osahs, seemingly with the hypopnoea being more prevalent.

BUT-I DON'T SNORE!!!! Am I odd? Are there others out there who aren't snoring sleep apnoea people? Makes me wonder if I actually have the obstructive type, as snoring seems like a major symptom? I'm far from being a small woman, but my neck isn't particularly big, and I apparently have no jaw, throat or nasal blockages-any thoughts?

Also, I'm using a cpap machine (resmed s8 escape), but it's making little if any difference. I've been using it for 6 weeks (just sent data card in for first time to hospital-waiting for results) but feel quite frustrated as it has just increased the time between waking from 1.5 hours to 2 hours, with no real difference in how I feel during the day-except for the fact that my husband tells me I'm more "snippy" (for that read 'bitch from hell with mood swings of a menopausal dragon!!!'). The only positive at this point in time is that we both find the sound of the cpap quite soothing!! I'm persevering, and hopefully from the report they'll be able to make adjustments-just hope the hubby can cope in the meantime.

So-waffled on forever-look forward to any responses-and no doubt will be asking lots more questions!!

[James @ Intus]

Hi Romaine,

Welcome to the forums.

It's not unusual if you don't snore. Especially as you say you had more hypopnoeas than actual obstructions, it kind of makes sense. Perhaps it was more Upper Airway Resistance Syndrome than OSAHS but either way, a CPAP should improve things. Perhaps you can ask them to re-do the in-home test whilst on CPAP, to verify whether it's helping. If it's not, they may reconsider the initial diagnosis.

[Romaine]

Hi James

Thanks for your response. Having spoken to a technician, my pressure was upped from 7 to 10 last Friday. The first couple of days seemed marginally better (one night I went for 4 hours without waking!), but now all of a sudden I seem to be having what I like to call 'mouth farts' - a bubble of air seeming to sneak round to the front of my teeth, and then having to escape from my mouth. I had this on night one of cpap, but not since, which is a bit odd. Is this something cpap-ers have? Does it mean the pressure is too high, or is my mask just not fitting right?

I so want to get this right, and I realise it's going to take time, from reading other users threads, but it's just so frustrating getting to that stage!!! If only there was a way that once you're diagnosed, a magical formula could be used to pick machine/mask/settings etc., and off you go.

Oh well, at least I know that I'm not the only one out there with cpap rage!!!

[James @ Intus]

Air escaping like that tends to be due to one of two (or a combination of) things. It's either indeed mask fit, keep tweaking the straps (but not too tight). Or it's because your airways have not yet gotten used to the pressure. In some people the air literally struggles to go in because of a heavy chest. This tends to improve over time.

Like you say, there's an element of trial and error to this, until everything just works.

Did the technician give a reason for upping the pressure?

[Romaine]

Hello again

The technician seemed to base it on two things

1. That in 7 weeks, I was now waking every 2.5 hrs as opposed to pre-treatment of every 1.5 hrs-not much improvement

2. My weight-which is not insignificant!!!

That was it really, as it was done via a phone call

[James @ Intus]

Did they say when they are going to check the results on the new pressure?

Any general progress in terms of how you feel in the day?

[Romaine]

No-they just upped it and said see how it goes. I must admit, I'm finding the whole follow up thing a bit frustrating-I know they have a huge workload, but I just have an appt for the consultant next year, and that's it apart from the "any problems call the technicians". My diagnosis was based on a home sleep test my local ENT consultant got me to do, and obviously sent those results up to the Royal Brompton, but I do feel that perhaps they don't have the full picture from that alone.

My first data card reading has been downloaded at the Royal Brompton now, although that was at the lower pressure, and the results are apparently with the consultant, so I'm now waiting for his verdict.

What information exactly does that give them?? Does it actually measure anything re apnoeas etc, or is it simply a measure of when/how long you've used it?

Regarding how I'm now feeling-still tired-now more grumpy than ever, and waking up every 3 to 3.5 hours. I'm now also waking up quite often in the morning with a headache and achey chest, so wondering if an alternative machine might be more suitable. I am now using a nasal pillow, as I found the nasal mask uncomfortable, and apart from a bit of a sore nose to start (too tight on the straps) that's not too bad now, although still getting the odd night of mouth farting!!!

Still persevering, but feeling like I'm now getting to be somewhat more whiney than usual!!!

[James @ Intus]

I'm not very familiar with the S8 Escape and the Clinician Brochure doesn't tell me much either.

As it's a standard fixed pressure CPAP, it lacks the sensors to detect apnoea's (I think) so I'm not sure what exactly it records.

Chase them up on it as you deserve a good solution. Without chasing, you'll just be another patient of theirs.

Also check out how food choices can help with/against mood swings:

http://www.foodandmood.org/

http://news.bbc.co.uk/1/hi/health/2264529.stm

http://www.ivillage.co.uk/food/news/fnews/articles/0,,178980_701110,00.html

When you wake up every 3 to .5 hours, you'll have enough time to enter deep sleep so theoretically you should be feeling some of the benefits associated with that. If you want to take matters in your own hands, you can rent this for two nights, sleep one night with and one night without the CPAP to see how much of a difference it makes. But ideally, the hospital sorts it out for you promptly of course.

Keep us posted.