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Newly diagnosed OSA

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tortoise66
Corporal Snorer
Posts: 11
Joined: Fri May 08, 2015 1:10 pm

Newly diagnosed OSA

Post by tortoise66 » Wed May 13, 2015 10:53 pm

HI all,
I have found the experiences of others very helpful and encouraging so I thought I'd share my experience so far.
I am a 49 year old female who is slightly overweight.
I have suffered from chronic fatigue for many years but had always attributed it to my underactive thyroid.
I have snored for years but had never done anything about it. My husband has been very tolerant, mainly because he is deaf in one ear so always sleeps on his good ear!
I have always woken lots of times during the night but put it down to being a light sleeper. I wore ear plugs and an eye mask which helped slightly. About a year ago I woke up during the night and couldn't breathe. My throat was all dried out and stuck together. It frightened the life out of me. This happened a couple more times and I googled it and OSA was mentioned.
I spoke to my GP who referred me to general medicine clinic. Consultant did epworth score and suggested a sleep test with the finger pulse oximetry thing. The night i wore this i had a bad cough and didn't sleep much at all. The results were mild OSA so was told nothing could be done other than lose weight.
I was devastated, not that i wanted OSA but i needed some help and he told me i just had to live with it! No-one understand the fatigue and brain fog unless they've experienced it!
I explained it hadn't been a typical night, but he wouldn't listen. I was sure i had more severe osa but he wouldn't listen. I broke down in his surgery and wouldn't leave til he agreed to refer me to sleep clinic. He eventually agreed but told me it was a waste of time.
I had home sleep test done 8 months ago and got the results 2 weeks ago!!!
It confirmed i have moderate osa and prescribed cpap and referral to ENT to get my deviated nasal septum fixed.
I have had 5 nights on my trial machine and, despite some teething problems (the first 2 nights I couldn't sleep at all and felt worse for the first couple of days!), sore nose, leaking mask, humidifer not working I amstarting to feel better already!
I can't breathe much through my nose so have full mask. I am going to try nasal dilators until my nose is fixed. I thought Airmax ones, does anyone have any experience or suggestions on this?
Despite this I felt better yesterday than I have in years, even though I still waken several times during the night, so am hoping to go from strength to strength. Last night was more unsettled but I think when the machine automatically changes the pressure this wakens me.
I am hoping to get my permanent machine in the next few days with set pressure so hopefully this will help.
I will keep you updated on my progress
But if anyone feels they have this condition DO NOT GIVE UP until you are properly tested.

tortoise66
Corporal Snorer
Posts: 11
Joined: Fri May 08, 2015 1:10 pm

Re: Newly diagnosed OSA

Post by tortoise66 » Fri May 15, 2015 7:24 pm

i received my permanent cpap machine today, with a set pressure of 10, after 8 days on the auto machine. I have no idea if this is particularly high or low pressure compared to others, any ideas?
I have continued to feel better over the last few days, though a bit tired today, so a bit disappointing, but i know it's early days.
i'm still waking up a lot at night but am putting it down to the fluctuating pressure in the first machine, so hopefully the new machine will address this. What are other peoples experiences?

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Sleep2Snore
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Re: Newly diagnosed OSA

Post by Sleep2Snore » Fri May 15, 2015 11:24 pm

Good to see you stuck up against the specialist and got the sleep study you wanted.

Yes, sometimes you just have to be persistent. Good for you!

Please do keep us updated, we always like to hear how people get on.

Good luck.

The nasal dilators I have never used so I can't comment.
The machine you are using is new to you and it will take a while to get used to.
Changing pressure does waken some people at the start but you do get used to it.
Be prepared for a wait for your fixed pressure machine (CPAP).
Depending on where you are and which hospital you are attending.

tortoise66 wrote:But if anyone feels they have this condition DO NOT GIVE UP until you are properly tested.
Good advice :)
S2S - Sleep2Snore

tortoise66
Corporal Snorer
Posts: 11
Joined: Fri May 08, 2015 1:10 pm

Re: Newly diagnosed OSA

Post by tortoise66 » Sun May 17, 2015 11:21 am

Thanks for the reply Sleep2snore
I got my new machine on Friday (I have had to rent mine privately as the nhs waiting list for machine is 12 months!!)
It has a new humidifier. It's a Respironics Pro C-flex set at pressure of 10.
I've used it for 2 nights and am definitely not waking up as often which is great.
I still feel the benefits but not quite as 'buzzing' as I was earlier in the week, but I think I maybe over-did things with my new-found energy.
I wondered is 10 a low pressure compared to others?
My stats say AHI average 4.8 which is a great improvement. Does anyone know what AHI has to be to get driving again?

I still don't feel much improvement in humidity, mouth still as dry as a bone!
The hot-plate of the new humidifer definitely heats up better than the previous one, but during night if I check it it's barely warm. Any thoughts anyone?
Was told 2 should be sufficient but have tried at 4 with v little effect. As I am a mouth breather this is v uncomfortable. I am awaiting surgery for my deviated septum but goodness knows when that will be!

Darth breather
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Re: Newly diagnosed OSA

Post by Darth breather » Mon May 18, 2015 12:05 pm

Hi tortoise, I was only diagnosed about 2 months ago, I have severe Apnea 78 per hour and stats of 86% they started my off on a ramp of 4 and 10 my readings went down to 4 second reading went to 4.8 he has now left it 9.5 and my reading is 1.5, Dont know what it has to be in the UK sorry I live in France
I have found now that I suffer from a tight chest and my nose bleeds when I blow it, will try my humidifier tonight and see how it goes. all the best, Lynn

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Sleep2Snore
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Re: Newly diagnosed OSA

Post by Sleep2Snore » Mon May 18, 2015 3:20 pm

I have my humidifier full up and that is not enough for me so don't be afraid to turn it up until you are happy.
As for the pressure, I think 10 is a bit low, but then I am at 18.
If you start to feel tired again, phone who set your machine up to get the pressure increased slightly, I found I had to get my pressure put up a few times. I think I started at 12 but that only lasted a couple of weeks. After than I asked to get pressure up every time I saw the clinic and each time I felt better. The last pressure increase to be honest was to make up for leaks I was getting which worked perfect for me.
Fixed pressure machines can't make up for leaks and if you have a bad event, however they do have their upsides as well.
5ahi is good for driving, though you should get down to at least 3ahi without to much trouble, however it is early days and the main thing is you are alert and not feeling fatigued during the day.
If you are not getting the same benefit from your machine I think you need to step up the pressure to 12, but wait to see how you get on in another week as some people take time to feel as normal as it gets again.
The machines are set to cover 98% of the pressure your requirements, this is considered sufficient for most peoples needs and would approach normal in the general population (I read it somewhere, written by a Sleep Tech) so if things don't improve, ask for an increase to 12.

You are doing quite well though, a lot of people make up their minds they can't do it or don't want to live with it or feel embarrassed but there is no need to, there are more Hoseheads around than you might think. Also they are not all big people, I know some that are very thin and have Sleep Apnoea.
S2S - Sleep2Snore

tortoise66
Corporal Snorer
Posts: 11
Joined: Fri May 08, 2015 1:10 pm

Re: Newly diagnosed OSA

Post by tortoise66 » Wed May 20, 2015 8:01 pm

Thanks for all the advice folks.

I felt great from about day 4 to day 10 but yesterday and today I feel shattered. I went to bed at 8pm last night, used my cpap until 6 this morning! I kept waking up with a dry mouth even though I had the humidifier at full strength. But my AHI was 1, which is great.
Why do I feel so terrible? Is this normal? I had about a week of feeling fab and now I feel so disappointed.
I know it's early days but I've had a taste of what normal is and I don't want to go back to the way I was :-)

Darth breather
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Re: Newly diagnosed OSA

Post by Darth breather » Wed May 20, 2015 9:15 pm

I am finding I am the same, felt great for the first 3 weeks, now it takes me all my will to get up at 10 and been in bed at 10. I have started to use the humidifier again, lets hope we are just catching up on the sleep we missed....

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Sleep2Snore
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Re: Newly diagnosed OSA

Post by Sleep2Snore » Thu May 21, 2015 5:15 pm

Hi tortoise66,
You have a Respironics Pro C-flex set at pressure of 10.
What does your Periodic Breathing ( CSR ) read if you can access it?

Also what type of mask do you have? Nasal Pillows, Nasal mask, or Full-faced mask?
You may have already told me but if you have I have missed it.

I know that if I use my own machines humidifier it is not enough humidity for me.
I now have a stand alone humidifier and I had them both in tandem at one point.

Fisher & Paykel HC150 CPAP stand alone Heated Humidifier is a good one to use though I find it does run out if on full but a top up during the night keep it going till morning, though if I don't have any leaks during the night it will run all night on a fill of water. I do find that it does not have the same humidity the lower the water gets, but a top up sorts it.
If you go down this route you will need a short hose to go from your machine to the humidifier.
The advantage with this type of humidifier is you can pre-heat it before you connect it up.
The other option might be to have a heated hose.
Maybe NM37 will come in on this. I have not used a heated hose but they tell me they are quite good.

Please answer the above questions before rushing out to buy a humidifier or heated hose.
I felt great from about day 4 to day 10 but yesterday and today I feel shattered. I went to bed at 8pm last night, used my cpap until 6 this morning! I kept waking up with a dry mouth even though I had the humidifier at full strength.
Air short circuiting through the mouth perhaps, humidifier not working?

[edit for typo]
Last edited by Sleep2Snore on Sun May 24, 2015 11:05 pm, edited 1 time in total.
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tortoise66
Corporal Snorer
Posts: 11
Joined: Fri May 08, 2015 1:10 pm

Re: Newly diagnosed OSA

Post by tortoise66 » Sat May 23, 2015 8:17 am

My machine shows periodic breathing at 0% every night - what does this actually measure?
I have a full face mask as I have a deviated nasal septum which makes nose breathing very difficult.
My only mask issue is a sore on the bridge of my nose, but if I loosen it then I get leaks.
What leakage is acceptable?
Thanks in advance

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Sleep2Snore
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Re: Newly diagnosed OSA

Post by Sleep2Snore » Sun May 24, 2015 11:51 pm

tortoise66 wrote:My machine shows periodic breathing at 0% every night - what does this actually measure?
This is not so straight forward, but if it say 0% that is fine. It can be Central Sleep Apnoeas, this is when you stop breathing on your own (Not OSA) and can have the same affect as Obstructive Sleep Apnoea. Or it can be brought by heart problems or Cheynes.
Google Periodic Breathing and Cheynes.
I found this short explanation for you after a lot of useless information!
Periodic breathing: Clusters of breaths separated by intervals of apnea (no breathing) or near-apnoea. As opposed to normal breathing which is usually regular.
Artical wrote:Periodic breathing was originally thought to arise from serious neurologic or cardiovascular disease and therefore to carry a poor outlook. It is now known that periodic breathing also tends to occur during sleep, it can occur in healthy persons, and the apnoea in periodic breathing is usually central (without respiratory movements) rather than obstructive (caused by upper-airway blockage).
Periodic breathing during sleep occurs typically in patients with congestive heart failure.[/quote]

What ResMed say about it
I have a full face mask as I have a deviated nasal septum which makes nose breathing very difficult.

Yes, there is a few on here with the same problem.
My only mask issue is a sore on the bridge of my nose, but if I loosen it then I get leaks.
You can get gel mask liners that are slightly sticky which you put on then put the mask on top, these are expensive and I don't know how many times they would need replacing. There is a cloth mask liner for full-faced masks that do much the same job though might not be quite so effective. But I am led to understand they are quite good.
What leakage is acceptable?
If you are on a fixed pressure machine (CPAP), not a lot. But if you are on an APAP (Automatic Pressure machine) it will make up for the leak.
I had my machine increased in pressure above what I need to allow for leaks, I probably need 16 but it is set at 18. When I get no leaks (I usually do at some point during the night) I have a great sleep and feel good (better than normal when my humidifier is on full and does not run out of water and I wake up gasping to get breath through being so dry in the nose and throat) but when I get leaks I tend to have dry skin where I get the leaks and if they are bad, sometimes I sleep in an odd position which makes it leak bad I still feel ok but and not tired but quite so refreshed.

I think you should try turning up the humidifier a step at a time, if it is full up and still no benefit then maybe think about a stand alone humidifier or a heated hose.
Or try the mask liners to stop the leak or increase the pressure slightly to make up for the leak. Trouble is it is likely to be at the bridge of the nose, try putting this part of the mask on first (by sliding it down on the nose, lay down first as it is amazing how the shape of the face changes), then following up by pushing the mask down onto the face. (Wait a minute, I think there is a video somewhere showing this technique somewhere, I will try to find it.
It is very difficult to advise from so far away but we try our best!

Video will follow (If I can find it)!

Did I answer everything?


Thanks in advance[/quote]
S2S - Sleep2Snore

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Sleep2Snore
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Re: Newly diagnosed OSA

Post by Sleep2Snore » Sun May 24, 2015 11:56 pm

Oh I just found a video showing what happens with Cheyne Stokes Respiration (periodic breathing).
Cheyne Stokes Respiration The Basics and Treatment Overview of the Central Apneas Simplified
[video]http://www.youtube.com/watch?v=RdzgAA861Yw[/video]

But I don't think this is your problem, but you would need to be tested again for this.
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Sleep2Snore
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Re: Newly diagnosed OSA

Post by Sleep2Snore » Mon May 25, 2015 12:02 am

Cheyne Strokes - The effect it has......

[video]http://www.youtube.com/watch?v=VkuxP7iChYY[/video]

You did ask. :lol:

This is another video, just watch the oxygen saturation go down in his blood (finger readout).

[video]http://www.youtube.com/watch?v=zrcXQhFK6ro[/video]
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Sleep2Snore
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Re: Newly diagnosed OSA

Post by Sleep2Snore » Mon May 25, 2015 12:10 am

One question I do need to ask.

When did you start to feel not so good?
Was it a week after you got the machine you have now?

Well, that is two questions :lol:
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Sleep2Snore
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Re: Newly diagnosed OSA

Post by Sleep2Snore » Mon May 25, 2015 12:32 am

[video]http://www.youtube.com/watch?v=SYC3w-zt1eM[/video]

This is for the FX mask, but the put on your nose and then the face technique applies to quite a few masks. He shows you it early on so no need to watch after he shows you this unless it is an FX mask you have.

By the way, if you think it might be Central Sleep Apnoea or are interested in them, watch this vidoe by Lanky Lefty. He is a Sleep Tech and explains it quite well.
http://www.youtube.com/watch?v=my7mH3tyAvs
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