My story: I should have known better…
This is my previously undisclosed and professionally embarrassing story, of failing to recognise my own, sleep apnoea symptoms.
It is NOT a ‘woe is me’ story.
It’s my journey to a diagnosis and my initial struggles.
I share it now, some 4 years into PAP therapy (the image above was taken some time ago) in the hope it illustrates how easy it is to:
- Miss or ignore sleep apnoea symptoms developing
- The difficulty sufferers may encounter in obtaining help
The irony is, that I’ve worked in the sleep industry for over 25 years…
I really should have known better.
How it all began…
In 1994, whilst working as a dental technician, I received a prescription to make a custom oral device for sleep apnoea, known as a Mandibular Advancement Device.
Two years later, I set up the first EU specialist dental laboratory (Zacher Sleep Appliances – ZSA) to exclusively make these devices and I ran the same for over a decade.
Fast forward 11 years and here I am pictured right, wearing a PAP mask, larking around on a training course.
My career had moved into the corporate world (still within the sleep industry) and I found myself snoring.
So, I became a custom anti-snoring device user!
The custom, adjustable, prescription, Mandibular Advancement Device (MAD) kept the peace at home… and as far as I was concerned I had no sleep apnoea symptoms…
The year was now 2009.
My Chance Sleep Apnoea Diagnosis and Timeline to Treatment
In September 2015, I underwent a home sleep apnoea test, as part of a test run of our anonymous sleep apnoea process.
My intention was merely to:
- Provide some real data for our then hospital partner to work with (Royal Papworth Hospital NHS Foundation Trust).
- To ensure all the pieces ‘joined up’ and everything worked as it should.
Much to my surprise and frankly embarrassment, I was anonymously diagnosed by the specialist Consultant Physician with moderate, obstructive sleep apnoea syndrome, or OSAS as it is known.
And this home sleep apnoea test was carried out whilst I was wearing my custom-made anti-snoring device (MAD)…
For the record, I had a BMI of 23, was otherwise fit and healthy, and thought I just snored…
Then the ‘Fun’ started:
Getting my GP to take me seriously wasn’t easy.
On the 12th October 2015, I contacted the GP and sought a referral to Royal Papworth Hospital, explaining all the above.
About a month later…
On the 10th November, I once again contacted the GP.
This time I was taken seriously and after my case had been reviewed by the Clinical Commissioning Group…. (as I wanted to be treated outside of the County I lived in) on the 22nd January 2016, I finally attended my first appointment at Papworth Hospital for assessments such as:
- medical history
- a review of my ASAP™ diagnosis and GP referral letter
Then on the 2nd March 2016, I collected a loan Automatic PAP (APAP) machine from the hospital. I was to use it for two weeks to determine the optimal therapy pressure my ‘own’ PAP machine would be set at.
(For cost reasons, this process is common practice in the UK. A short loan of an automatic machine to establish your optimum treatment pressure, and then this pressure setting is transferred to the non-automatic, fixed or ‘continuous’ PAP pressure).
I returned to Papworth hospital once again on the 14th March. This time I collected ‘my own’ CPAP machine, set up using the information from the APAP.
You will have noticed the passage of time here, no doubt.
Some 4 months after my GP started the ball rolling, I began my lifelong relationship with PAP.
An important point to note here, is that I’d ALREADY UNDERGONE a multi-channel sleep test WITH Consultant Diagnosis and presented this report to my GP.
So, from GP to Consultant this may be considered an accelerated timeline to actually commencing therapy…
Oh, but we’re not done yet…
A 3 month review followed.
Today, I have an updated PAP machine that starts automatically (a nice touch) and a display panel of stats about how I have slept (I can now geek out like anything!)
It also shares my data (with my permission) with the hospital and the PAP machine manufacturer.
But that’s another story…
Nope, you’re using it wrong!
Around came the 27th April 2017 and I was now struggling badly.
Air was leaking into my eyes, and it felt like the mask was blowing itself off my face during the night!
Also, the inside of my nose had become very sore.
I contacted Papworth and the Hospital staff were brilliant. They saw me within a few days of my call.
A new mask and humidifier later and I had overcome the air leaks.
However, throughout May and June, I continued to struggle with a sore nose:
Don’t be tempted to put petroleum jelly up your nose (really harmful to your lungs).
My nose soreness gradually improved as I increased the humidification level, but as a consequence of increased humidification, I ‘enjoyed’ some rainout issues (not going into that now).
Follow up appointments in June and the repeat sleep test (despite a terrible night’s sleep in a lousy hotel bed) reported that my sleep apnoea was well treated.
Now, I‘m on an annual review cycle:
I feel massively better, more alert and a whole lot less irritable!
I must note that I bought a different ‘mask’ than the one I began with, as I made the classic error of over-tightening the straps… also I found I move around a lot at night and displaced the full face mask (you can see what I use now in the big image at the top of this post). Happily these are now stocked by the NHS hospital I attend.
Today, I wouldn’t consider ever going to sleep without using ‘my’ PAP.
Three Key Messages:
1. Sleepiness sneaks up on you.
‘Sleep’ is my industry and has been for over 25 years, yet I failed to recognise my own symptoms.
Only now, do I realise how sleepy I had become.
Today, I’m so much better, that when my wife and our 2 small children fall asleep on long car journeys, I feel proud to be compliant with PAP therapy, because:
I’m alert enough to protect my family, drive safely, and let them sleep.
2. Follow-up of MAD effectiveness is ESSENTIAL.
To be explicit: objective follow up of unimpaired breathing while asleep.
NOT to be confused with dental follow-up… which while certainly necessary is not about the ability to sleep and breathe at the same time.
I believe it makes sense for oral appliance users to have a repeat home sleep apnoea test annually..
In my experience, this just doesn’t happen and as such, it is letting patients down badly.
My personal experience of becoming a ‘silent apnoeaic’ (I thought I was fine as I was wearing my MAD) really concerns me.
How many people are out there, who like me are wearing their MAD, in ignorance of a change in their condition, from benign snoring to OSA?
3. Regulatory systems are counterproductive.
It takes perseverance and a long time to get diagnosed and then established with effective and tolerable therapy.
First you must convince your GP, and then when you’re taken seriously; you begin your months long journey to therapy.
All the while you MUST not drive until proven to be no longer sleepy/drowsy.
Remember, your GP is now compelled to inform the DVLA if you consider driving during this time.
It’s a crazy situation, but today I totally understand why people who drive and have a drowsiness / sleepiness problem, are unwilling to seek help.
Take Home Message
So, that’s my story. Not ‘woe is me’.
I hope that if you’re reading this and either you or someone you love is snoring, you take the situation seriously.
To my shame, I didn’t and I was lucky to be diagnosed, because I am in the industry.
IF YOU SNORE – GET SCREENED FOR OBSTRUCTIVE SLEEP APNOEA BEFORE CONSIDERING ANY TREATMENT OR ‘CURE’
Yep, PAP is intrusive and you have to persevere with it.
It is not sexy.
Ideally, you want to be in a stable, long-term, supportive relationship. Or single!
Sleep apnoea treatment was absolutely transformational
When you feel more alert, you realise how sleep deprived and frankly, downright unpleasant to know, you were before.
PS. I say ‘sleepy’ when others may say ‘drowsy’.
It’s the same thing.
It just remains for me to say, how lucky and grateful I am, to have a wonderful wife, who stood by me throughout.
Sleep apnoea treatment was absolutely transformational
…you realise how sleep deprived and frankly, downright unpleasant to know, you were before.
Feel like leaving a comment? I read every one, but:
Please note: While this post is currently exclusively for subscribers, in a months time, I will make it public.