The sleep clinic chronicles continue…

If you’ve been following this blog till now, just read on. But if you’re new, you may want to read the earlier parts of this story, here, here and here.

Now, so far I have been talking about sleep apnoea, a condition that at its most severe can mean a risk of dying or having a stroke. A condition that requires the sufferer to inform the DVLA [Driver and Vehicle Licensing agency], because they are worried you might fall asleep at the wheel. And if you’re not receiving treatment for it, they can suspend your license. It’s a potentially dangerous condition. I’ve clearly been living with it for many years unknowingly and without incident. When I began this investigation into my snoring, I never considered I might have a serious condition.

And I was right… It hasn’t killed me off or made me fall asleep at the wheel and crash my car, so I reckon it’s a lot less dangerous than having myeloma. It’s all a matter of perspective, I guess. Nonetheless, I said I had apnoea because I understood that I have apnoea, because that is what I was led to believe. It would appear that that is not entirely true…

At one point during the trial period, I saw my GP about something else. She had received a letter from the sleep clinic outlining my diagnosis. It was not a copy of a letter they had sent to me. I had not then, and still have not received any such letter. So up to that point, no one had actually confirmed anything from the sleep tests I’d undergone.

You may recall that the technicians had surreptitiously let me see and take photos of test results, with the warning that patients may misconstrue or may not understand the data they’re viewing. Ummm, forgive me for stating the obvious, but surely if they shared the information and explained it, then patients WOULD understand and would NOT misconstrue and would also have the opportunity to ask any questions they might have. Or am I being naïve?

Given that I had been fitted for a machine and sent off to use it, not to mention the technician’s comment that I had “an average of 27 ‘events’ per hour” and that “this showed moderate sleep apnoea.”… it’s not a wild flight of fancy to assume that I have sleep apnoea.

But wait… the letter my doctor had received mentioned not OSA but UARS. I later found out that UARS stands for Upper Airway Resistance Syndrome, whereas OSA is Obstructive Sleep Apnoea. Confusion! Which was correct, OSA or UARS, and what did the difference mean…?

I was able to take a copy of the letter, because they’re open like that at my GP surgery, believing that patients are capable of understanding and can be given information about their own bodies and health. Radical, I know! Apart from that copy, even now, I do not have anything in writing from the sleep clinic to confirm my diagnosis one way or the other.

On 5 September, I had a follow-up appointment with Dr Kinnear. As you might imagine, I was keen to find out exactly what the correct diagnosis was and went armed with questions.

I mentioned the letter and asked about UARS. He confirmed that yes, from my test results, I have Upper Airway Restrictive Syndrome, and not Obstructive Sleep Apnoea. He said the difference is in the level of severity; UARS is a milder form. Annoyingly though, the treatment for it is the same as that for OSA – the damned CPAP machine. No getting away from it, unfortunately!

However, and importantly, I do NOT need to report the condition to the DVLA.

What I find interesting with this issue is that as far as I know, I am not required to report fatigue to the DVLA. Managing my fatigue, even now, should be more of a concern to the authorities, than my snoring. It’s certainly concerns me more. The only times I’ve felt sleepy while driving, scarily sleepy actually, have been since being in treatment for myeloma. I never experienced it previously, when I must have had UARS all that time.

Anyway, following the consultation, I was still confused about the exact difference between OSA and UARS. How do they make the distinction? So I did more internet research and came across these two videos which help explain the difference, with Dr Steven Y Park:

and (ignoring that unfortunate hands gesture) Dr Mark A Cruz:

So, the bottom line seems to be that:

a) with UARS, the person may stop or have restricted breathing several times an hour (like my 27 ‘events’), but they last for less than ten seconds and are therefore less dangerous, meaning they don’t qualify as sleep apnoeas or hypopneas.

b) the autonomic nervous system still works, ensuring the person is getting sufficient oxygen (again less dangerous), although they may still experience daytime symptoms of interrupted sleep.

What the difference means to me…? Not so much really apart from not having to inform the DVLA. If I still have to use the CPAP machine, and until I begin to notice any beneficial difference other than the lack of snoring (which is more beneficial for other people than for me), you can call it what you like.