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Sorry for the essay!

My sleep clinic are useless and I really don't feel they have the knowledge to treat my condition.

I've been on cpap/apap for around 4 or 5 years. Despite this I still feel fatigued and exhausted all the time. Some days my brain doesn't feel right somehow and I just scrape through the day barely functional.

According to the data collected from my machine I should be doing great!

AHI is always under 5 and I average around 8 hours of sleep every night.

I've had all the blood tests done, ruled out cfs, and am relatively fit and healthy.

I was having some problems where I noticed my throat was collapsing when I was breathing out and it was disturbing my sleep.

Called the clinic and they said to increase the pressure from 6 to 8.

The next day I could barely function as a human being and felt like I had brain damage.

Called the clinic again and they said well turn it back down to six then.

I asked for an explanation on why that has happened and they said they had no way to know that.

I wonder if the pressure was too high and interfering with my breathing against the pressure but I'm not sure how I would prove this.

I did some research on my apap and came across the EPR setting. It's a setting that reduces the pressure when you breath out. This was doing exactly what I described. My throat was collapsing as I was breathing out. I turned off the EPR setting and hey presto the throat collapsing stopped! I'm not sure why the clinic didn't have a clue about this.

Despite that I am still fatigued all the time. I've been altering the minimum pressure and it seems to have an effect. At higher pressures I feel like I've got mild brain damage. At lower pressures I just feel really fatigued.

Once again I don't have a clue why this is and don't know how to read my machines data to figure out why.

I've previously seen one of the main consultants in the clinic after waiting a year for an appointment. He said he thought it could be depression but I'm not depressed. I know the issues lay in something to do with my sleep and left the clinic completely disillusioned with them after being told they are only really set up to help people who have difficulties wearing their mask. I took to the mask straight away so no issues there.

I recently came across UARS and am starting to wonder if that might be the issue. My AHI in the initial test that I did was only just enough to warrant a CPAP and this seems to be one of the symptoms of UARS.

Anyway I'm stuck and don't know where else to turn to.

Can anyone offer any help and advice?

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Sorry to hear how you're struggling Mark and if on your initial sleep study your AHI was only just into the border of sleep apnoea, it's likely that it did start off as UARS and has progressed into the sleep apnoea range.  Many people with obstructive sleep apnoea have UARS issues but even if you do, CPAP is the correct treatment for UARS as well as sleep apnoea.  If, however, you have nasal obstructions, then it would be still worth trying to get an ENT referral to examine your nose and upper airways, as sometimes small surgeries can help - especially with breathing better in the masks.  Upon re-reading your post I've seen the issue you mention on exhale, which sounds like it's from your soft palate drooping on exhale, so an ENT consultant would be able to check this out too.

Some people do find the EPR can help, although it's not for everyone, and due to it sounding like there's a problem with your soft palate on exhale, it's better switched off.

Your AHI readings are good and so is your 8 hours sleep time, but the first thing I'm wondering is if you're using a nasal mask and possibly mouth breathing?  This definitely causes continuous fatigue as your treatment won't be going as well as the AHI tells you.

Another consideration would be if you're taking any other medication for unrelated conditions that may have daytime tiredness as a side effect.

I know you say you've had blood tests, but often we find that when CPAP doesn't fix the daytime tiredness/fatigue, blood tests for Vitamin D, B12, thyroid and diabetes often turn out to be a culprit, so it would be worth having those if you haven't already.

Hello Kath,

Thank you very much for responding it's greatly appreciated.

I hadn't considered an ENT referral. In fact I didn't know that was possible. I'll call my doctors and ask about it.

I'm using a full face mask. I have tried a nasal mask previously but didn't get on with it.

The only medications I take is omeprazole for acid reflux. I used to get this really bad and something else I've been wondering about is if my lower oesophagus isn't working properly. I've been diagnosed with barrets syndrome so have had issues there previously.

I've had blood tests for Vitamin D, B12, thyroid and diabetes.

Are you any good at interpreting the data in OSCAR software? Might you be able to take a look for me?

You're welcome Mark and an ENT consultation could certainly prove useful and they'll be able to spot the reason for your obstructive sleep apnoea.

Acid reflux is often caused by the sleep apnoea.  I'm no medic, so will explain what I know it layman's terms....when people stop breathing a vaccuum effect happens so that any stomach juices get sucked up.  This is why very often when people get treated for sleep apnoea the reflux either improves or goes away.  That being said, you obviously have the added complication of Barrett's syndrome, but hopefully at least by treating your sleep apnoea you'll find some improvement to the reflux.

We can have a look at your data at the charity, although can't give medical advice, but we can certainly take a look.  If you'd like to email it to support@hope2sleep.co.uk 

Thank you kath. I'm sending you through an email with the data from my cpap machine.The email address beings with my username.

Hi Mark

Just to let you know we've replied to your email, so can you check you've received the message in case it's gone to your junk or spam by mistake.

Thanks.

Mark said:

Thank you kath. I'm sending you through an email with the data from my cpap machine.The email address beings with my username.

Be careful with ENT as some jump into offering operations that are very painful and if they work at all only work for a short time.  Take a lot of time to think about it if offered one.  It is a good idea to get checked out for polyps and other blockages in or around the nose area.

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Newly diagnosed not sure what happens next - Scottish NHS

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