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MGA News

January 1999

Life With Gravis - Snoring

M Gravis

Mrs Gravis is very positive in asserting that I snore or that I used to. I could be heard at the other end of the village, at times out doing the heavy guns on the local artillery range, but all this came to an end following a routine visit to the diabetic clinic.

As well as the consultant, there are two other doctors who see patients at the clinic. One is a GP who has specialised in diabetes and does one day a week at the hospital. It was he who set me on the path to silent slumbers. We were coming to the end of a successful visit, just for once I had kept to my diet and managed to lose a few pounds, or kilos on that foreign scale which they will insist on using these days. I had also remembered to come in 14 days earlier for a blood test. Well unless you have Mrs Gravis to remind you, you tend to forget these things. The doctor looked me up and down and said "I bet he snores". This was addressed to Mrs Gravis, who was only too keen to confirm it.

"Yes", he went on, "it's all to do with your weight and myasthenic weakness in your mouth and throat muscles". "You probably sleep all night, but wake up still tired and that's no good for a myasthenic". I was amazed; here was a GP a non-neuro specialist who knew about Myasthenia Gravis. "I have a patient in my general practice who has myasthenia" he told us, seeing the obvious look of surprise on my face. This patient was about the same age and had roughly the same build as myself, he told me. He had snored and suffered from restless sleep and had been helped by the hospital's sleep clinic. Would I like to be referred to them to see if they could help me ? "Yes please," said Mrs Gravis, before I could open my mouth.

A month later I received an appointment, together with instructions to contact the clinic sister to arrange to borrow a recording Oximeter, which I would use for one night at home. Clipped to my finger, it would record my blood oxygen level while I slept. Snoring occurs when the airway becomes partially obstructed and the really earth shattering snort is produced when the airway is cleared. Before this happens, breathing can be suspended for a second or two and the blood oxygen level can drop. Using this, a dip on the graph printed out from the Oximeter can indicate snoring. As well as temporarily lowering the blood oxygen level, the loud snort partially rouses the sleeper, not to full wakefulness, but enough to disrupt the sleep pattern. My graph, although not as bad as some, did confirm snoring and after examining me the consultant invited me to spend a night in the sleep clinic ward to try a CPAP unit.

At nine o'clock one night I reported to the ward and was introduced to the CPAP. It is a system designed to maintain a positive air pressure in the airway, preventing it from collapsing. It is comprised of a micro-processor controlled compressor, a length of flexible tube and a mask which makes an airtight seal over the nose. The flexible hose and swivelling connection to the mask enables the wearer, with a bit of practice, to sleep in any normal position. You have to sleep with your mouth closed, which is easier that you might think. Some people do have to resort to a silk scarf, tied so as to keep the jaw up, for those of a vain disposition this helps with the double chin as well. The micro-processor regulates the air pressure to match your breathing, adjusting to allow you to breathe out. The Oximeter was attached and, much to my surprise I slept right through until seven o'clock the next morning. The Oximeter trace showed a straight line and I felt quite bright. One beneficial side effect of the system is that, for some reason, the need to spend a penny during the night is very much reduced. The doctor tells me that no one seems to know why.

I was offered a machine to try at home and had to return to the clinic one month later, after another night with the Oximeter recording oxygen levels. It had been a success; I was offered the permanent loan of a unit. The CPAP unit is not available on the NHS. This seems a shame, because it is not invasive in the way that procedures such as laser treatments are. If it doesn't work, no harm has been done and there is not the level of expense incurred with surgical treatment. I am lucky in that the "Friends" of our Hospital had purchased 20 units for the clinic. The replacement of the mask, which is good for about twelve months, is down to me at a cost of nearly fifty pounds. I think that it is worth it. It cannot relieve the fatigue which myasthenic weakness causes during the day, but it does start me off each morning with a fighting chance.

The unit is not noisy; it makes a constant low background noise which I find quite soporific. During the summer my young nephew, who was staying with us, put his head round my bedroom door one night and informed me that I looked like an elephant with its trunk caught in the hoover, but at least I no longer trumpet.

MGA NEWS January 1999
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