Cataplexy… All I want is a good nights sleep

Chances are if you are ever lucky ( or some might say unlucky) enough to meet me, at some point I’ll start laughing. You see I laugh a lot. Mainly at myself. When I’m nervous, happy, even sometimes when I’m upset?  You really can’t beat a good old ‘reight from the belly’ laugh.

You will  no doubt notice that when I do laugh, I look slightly odd. That  I hold my body in an awkward way, I’m fighting with my head to keep it upright and that I’ve closed my eyes. You’d probably ask yourself what is she doing?…but be far too polite to ask. You may even presume I’m drunk. This happens a lot more than I’m comfortable with. Only last week my fella informed me that on our first few dates, he presumed I had been drinking and had a little alcohol problem. I was devastated. Hopefully I would remain upright (I’ve only collapsed twice in public, thank god!) if slightly embarrassed as I cling to a wall or the nearest person…. Just relieved not to be in a big heap on the floor.

Narcolepsy

Welcome to my world. The weird little world of cataplexy – a medical condition in which strong emotion or laughter causes a person to suffer sudden physical collapse though remaining conscious. Cataplexy manifests itself as muscular weakness which may range from a barely perceptible slackening of the facial muscles to complete muscle paralysis with postural collapse. Attacks are brief, most lasting from a few seconds to a couple of minutes, and typically involve dropping of the jaw, neck weakness, and/or buckling of the knees. Even in a full-blown collapse, patients are usually able to avoid injury because they learn to notice the feeling of the cataplectic attack approaching and the fall is usually slow and progressive. The term cataplexy originates from the Greek κατά (kata, meaning “down”), and πλῆξις (plēxis, meaning “stroke”).

I have mentioned my condition before as I’ve been living with it for over 10 years now. However my strange little ailment appears to be getting worse.

My sleep is all over. I cant ‘ get my head down’ when I’m supposed too but come 2.00pm in an afternoon and I would do anything to crawl back into my bed for half an hour. I’ve even been known to start nodding off at my desk. It’s taking its toll. My skin looks shallow, my eyes look dark and I’m more spotty than usual. At times I’m short tempered. I get frustrated, running on 75% is no fun and I simply don’t like it. It was bad enough when I couldn’t tell a joke for fear of falling over, now I look constantly knackered and still can’t tell a joke!!

One of the symptoms of cataplexy is irregular sleep patterns. Hence my ability to fall asleep anywhere at the drop of a hat. Nothing strange about that you might say, we all get tired…It’s my mood when I wake up that I do not like. Its a vicious circle, the more tired I am, the worse my cataplexy appears. I’m often groggy and confused. Sometimes I’ll loose my bearings ( where am I, who are you?) and I usually come out with a lot of gobbledygook. Rach, my beautiful friend with lovely long blonde hair and I still giggle about the time I woke up and told her quite seriously that she would look great with a dark brown afro? Yep odd… I have no idea myself where that one came from. Just this week, post nap, I started talking to the Mr about car-parks. I can be boringly at times… But carparks – it’s just odd.

Following a conversation a couple  of nights ago (about car-parks) I decided enough was enough and it was time to give cataplexy a run for its money. There is no actual cure… well l say that. Anti-depressants are supposed to ‘numb’ symptoms along with any personality you had no doubt. My doctor advised me against taking them and to be honest it was a big no no right from the start on my part. I Iike my ‘wacky’ personality thankyou, I didn’t want a watered down, ‘steady’ version of me. I would just have to shut up, put up and get on with it.

I’ve decided to start by changing my eating and drinking habits; to see if this makes a difference. The first and maybe the most obvious is to give up coffee. This may sound easy, however I think I’m addicted to caffeine. On average I would say I drink 6 to 8 cups of coffee a day. I think it may take some weening off in my case! I intend to substitute the coffee with a combination of plain water, hot water with lemon or pure cherry juice. Research advises me that the later is supposed to aid a good night’s sleep, and is also great for gout if your a sufferer.

I also intend to cut down on my beloved pasta, bread and potatoes, and up the red meat and fish intake. Less carbs, more protein appears to be the way forward.

I intend to document my findings and share them with you all on here. Hopefully somewhere along the line I’ll get a goods nights sleep and share how I achieved it. Now I can’t guarantee I’ll not fall down in the process!

Do you suffer from cataplexy, or a sleeping disorder? Do you have any tips or recommendations. I’d love to hear them.

Right I’m off to enjoy a lovely cup of hot water with a dash of lemon… do I sound convincing ? I’m already craving coffee and we’ve only just started…

Oh oh, wish me luck!

Tracey x

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