Underwent test for sleep apnoea

[trys]

About two and an half years ago I was kept in overnight at hospital to test me for sleep apnoea. This is before I even knew I had acromegaly. I was in hospital to have an ear grommet fitted (I had "glue ear" or "otitis media"), they found I had very high blood pressure and I asked them if I could possibly have sleep apnoea as I snored so very loudly.

They stuck a little oxygen probe clipped on my finger overnight and that was that. The nurse just looked at the machine and said there wasn't a problem, I didn't have sleep apnoea. Cynically, I now wonder if they just stuck me in another room with a clip on my finger to "keep me quiet", and to allow the other chaps in the ward a night's sleep without me keeping them awake again!

Trys

[JonD]

Hello Trys, good to see you back on the Forum after the Easter break.

I've had some very bizarre sleep tests and I'll write about them soon. (Not sure yet whether for this section or the Humour department!)

I think it's highly probable that you didn't have a proper overnight sleep test. Apparently, a staggering 75% of acromegaly patients have sleep apnoea (I know you'll have done your research and already know this). Much of the apnoea is due to central sleep apnoea, involving the brain not sending the signal during sleep to automatically breathe. I think it's important to have an overnight sleep test at a reputable sleep laboratory and this should be offered to all acromegaly patients. Sleep apnoea is a condition now taken much more seriously, as it can be a killer, directly responsible for increased strokes, heart attacks and serious road accidents.

And, I reckon, it's one of the major causes of divorce, or at least resulting in the spare room not being a spare room anymore.

I'm pleased there is now a section on sleep apnoea. I wonder if there should more sections dealing with symptoms that are common across many pituitary conditions.

[JohnwithanhD]

The hospital supplied me with a home based sleep apnoea test (see http://www.stowood.co.uk/leaflets/Grey_Flash.pdf ), which I strapped to myself in bed at home. This showed that I had very slight sleep apnoea (the night that they tested me anyway) but almost not on the scale where they would consider treating it. In view of my upcoming acromegaly treatment, they would not be following up in the Sleep Clinic unless I continued to have problems.

The test result came through just as I went off to have my op. My op has improved the sleep disturbances immensely. If nothing else, straight after the op, my upper palate was noticeably less loose (more trampoline now than saggy old sheet), and I could breathe through both my nostrils too (can't remember having been able to do that for ages).

If my sleep apnoea was only very slight, I hate to think how much more disrupted someone's sleep would be if they were more badly affected. To me, the difference between pre-op and post-op sleep patterns is like night and day, er, night and night -- well, you know what I mean.

John

[JohnwithanhD]

Trys,

The clip on your finger was a pulse oximeter and is only part of what you should have had for a sleep apnoea test as far as I understand it. My home based test had a pulse oximeter but it also had nasal O2 probes, various other measurements, and recorded up to 8 hours of snoring/gasping/whatever.

The Churchill hospital at Oxford seems to use the home based test devices as an initial screening, which is fair enough.

John

[Paul Clarke]

Hi Jon & John,

I am wondering if it would be a good idea to purchase a "home test kit" and make it available to the members. Do you have any further information as regards price / availability / etc.?

I would use it as a tool to supply your medical care provider with information. It is not a medical treatment. One thing to bear in mind is the fact that your partner - when the spare room in not being used - generally has a sleepless night as well as they are only half asleep a lot of the time listening to you breathing (or not breathing as the case may be.)

Karen reports that when I snore (which I don't) she is happy because you have to breathe to snore!

It affects all patients with pit tumours, not just acromegalics and in my opinion, is not taken seriously enough. It can be a deadly killer. I am not alone in being afraid to go to sleep in case I don't wake up. It tends to affect me most when I am sleeping lightly. Once I go into a deep sleep, attacks tend to be rare.

Thanks for the info guys,

Paul