Thursday, 8 February 2007

The Yellow Wiggle

Greg Page, the artist formerly known as ‘The Yellow Wiggle’, has sadly had to hand in his skivvy. After being unwell for quite some time, and going through the rigmarole of being repeatedly told he was perfectly healthy while becoming progressively more disabled, he was finally diagnosed with orthostatic intolerance:

Page said he was suffering from a chronic condition called orthostatic intolerance.

When he stands up his heart doesn't pump enough blood around his body.

The Australian, 30/11/06

As awful as it is for Greg Page, it's often beneficial for others when someone famous develops an obscure condition. It prompted a good article [no longer online] in the health section of the Weekend Australian.

Very broadly speaking, orthostatic intolerance is when the body responds abnormally to being upright. There is a profound drop in blood pressure, the heart rate is substantially elevated (tachycardia), and blood flow is significantly impaired. It can cause a range of debilitating symptoms – including loss of consciousness when upright, extreme dizziness, blurred vision, cognitive problems due to lack of cerebral blood flow, slurred speech, chest pain, difficulty breathing, crushing fatigue, nausea, exercise intolerance, palpitations, pain across the shoulders and into the neck (referred to as ‘coat-hanger pain’), weakness in the legs, and migraines. Attractive blue toe-nails from blood pooling in lower limbs is the least of the issues. (I sort this one out by wearing nail-polish, the other symptoms are trickier.)

Orthostatic intolerance is a medical condition in and of itself, but is also commonly found in ME/CFS patients, and makes sustaining upright activity problematic, if not impossible, in severe, chronic cases. I have Postural Orthostatic Tachycardia Syndrome (POTS) and Neurally Mediated Hypotension (NMH). My OI is a damn nuisance and a major contributor to the amount of time I’ve spent in bed over the years.

The doctor people are trying to see if we can get me some more verticality. So far we haven't had great success, but I hope we'll get there if we persist. During a recent appointment my doctor was assessing my blood pressure and heart rate while I briefly stood, and as the dials swung wildly in the wrong direction, yelped, "Hold onto something, I don't want you collapsing on me!"

I wouldn't have collapsed, I’m down with the warning signs. I lay down on the nearest horizontal surface whenever and wherever necessary. I have lain on the ground at major tourist attractions, at rock concerts and music festivals, on the tiles at the hair-dresser, in the hallway at the pathology lab, on the seats of all types of public transport – I’ve even had a nice lie down on hospital chairs while escorting someone else to Accident and Emergency. I might look like a goose but it’s safer than breaking bones (or worse) from passing out unattended when the body decides it needs to reboot.

It's been handy for explaining to kids the reason I'm perpetually horizontal, they know all about the Yellow Wiggle. A five-year-old I know nodded wisely, and clarified, "What about when you’re sitting, what happens then?" (A more astute question than most adults ask!) I told her that sitting wasn't as bad as standing. She nodded again, then asked, "Do you like my necklace?" I did. It was cute, a white plastic heart, painted with a rainbow, dangling from a chain.

I'm genuinely sorry that Greg Page is ill, and can no longer be a Wiggle, and I hope he finds some answers. I should find him a consolation necklace, I know where you can get nice ones with hearts and rainbows - I'll send Dorothy the Dinosaur out shopping.

(If you're unfamiliar with the Wiggles I can arrange a long car trip with small children for you - you'll be singing "Wash your face with orange juice!" for days. The Wiggles are a group of four children's entertainers who wear coloured skivvies, dance and sing, have a support cast of characters, travel the world performing to packed concert halls of joyous three-year-olds, and I believe they’re Australia's highest earning entertainers.)

Further reading:

Orthostatic Intolerance and ME/CFS – if you have ME/CFS I recommend asking your GP about testing for OI. Not everyone with ME/CFS has it, but if you do, treating the OI may help improve your quality of life. Dr Peter Rowe at Johns Hopkins is doing a lot of research into OI and ME/CFS. OI is a broad term which can include both POTS (postural orthostatic tachycardia syndrome) and NMH (neurally mediated hypotension).

Patient info sheet from Austin Health, Victoria

Orthostatic Intolerance on medscape – long, very thorough article.

POTS

The Wiggles website - Greg Page and Orthostatic Intolerance

Treatment of Orthostatic Intolerance

Orthostatic Intolerance Syndromes

Greg Page Fund for OI

You can also search for info using the term ‘dysautonomia’.

5 comments:

  1. I've been reading about that elsewhere - there's a GP in Wales who wrote a paper on mitochondrial failure which is one of the explanations for this difference in blood pressure etc. Sadly, many people don't understand that resting does not just imply sitting on a chair. I've now taken to lying down at all possible opportunities: in lectures, in church, in concerts - it's embarrassing but means I can enjoy things rather than be preoccupied with pain.
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  2. Is that Dr Myhill? I like her work a lot, she has such a practical approach.
    I know what you mean about resting in public. At least in airports everyone thinks you've just got jet-lag.
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  3. Yes - I wanted to get one of the tests she describes here http://www.drmyhill.co.uk/article.cfm?id=381 but alas I haven't a spare £225.
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  4. honey, i know this is an important post, but i just kept thinking who/what is a yellow wiggle?! i had to look it up . . .
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  5. fluttertongue - Sounds like an interesting test, but that's a fortune, I hate to think what that would be in Aussie dollars...yikes.

    nmj - Sorry about that, have updated post!
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