18 months on and still unable to ride...

jax13

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please forgive me folks, but i need to have a good whinge!!!

I developed / acquired a few weird symptoms last january in the car on the way to a friends house (luckily i was in the passenger seat!) essentially it came on all of a sudden like car sickness. nausea, general grotty feeling but worst of all was a kind of dizzyness. not dizzy as such, more that feeling when your 8 pints of guinness into a night out and you feel like your walking down a corridor on a cross channel ferry in a bad storm!

aside from feeling off colour, I thought nothing of it and carried on for a couple of days.

day 3, still feeling ropey and a bit worse than day 1 so i thought i'd visit the quack to see what they said as its unlike me to be ill (injured / broken yes but not ill!). doc floated a couple of suggestions but essentially they suspected something along the lines of migraine, labyrinthitis or vertigo. drugs prescribed and duly taken, same with the next set and the next set and the next set. nothing touched it (out of about 4 different medications) and the dizzyness, nausea and now with occasional crippling headaches cutting in too had been a daily thing for about 4 months. finally got a referral to a neurologist (with a predicted 8 week wait to see him!)

during this time i started feeling a bit better (probably due to the drug i was taking which is used in higher doses than i was taking as an anti-psychotic!) and the dizzyness and nausea had subsided quite a lot and provided i didnt get hungry and stayed well hydrated things were nearly back to normal.

queue the neurologist. an mri prescribed to rule out any tumours, or abnormalities (all clear on that one) and his diagnosis was vestibular migraine. treatment... come off the crazy pills and 'get used to it' with regards to the dizzyness / unsteadiness thing and let my head adjust to its new normal without any drugs that were essentially turning off receptors in my head and simply masking the symptoms.

it took at least another 3 months before i felt 'well' again and have spent the last 7 or 8 months in not too bad shape BUT highly susceptible to the symptoms returning if i do certain things to trigger it. it can be daft things, not drinking enough fluid, looking up for any length of time (painting ceilings i found out is like my kryptonite!) prolonged exposure to bright light, not enough light or loud noise (pubs, concerts even the cinema can trigger it)

as i now sit here i have my bike 90% rebuilt (just chain and new gear inners to put in place) and my old roadie / commuter project hooked up to the turbo trainer which i used the other day and, well, my fear came true. low speed cruising i'm fine for 15 / 20 minute bursts but as soon as i put down any sort of pressure / speed i start getting wobbly again fairly quickly. probably a heart rate related issue triggering it (monitor is on order to experiment with what level i need to keep it under)

this is just frustrating me now. I realise there are people in far worse positions than me in more pain, discomfort or inconvenienced to a greater level by an ongoing illness but this has hit me just a couple of months after finally getting my knees sorted out so in reality, i've had to take about 8 years out. as a result i haven't been frequenting here as often (mainly because seeing new builds and looking at aftermath threads is just irritating!) but i'm hoping i can work out a way to manage my issue to still get out there and enjoy my riding again.

If there is anyone reading who is in a similar position with a vertigo / labyrinthitis / vestibular type issue please, please let me know what you do to manage it as this affliction is slowly grating away the last bit of my patience!

many thanks for reading my whinge folks and don't take a clear balanced head for granted!
 
jax13":3hvko4m4 said:
many thanks for reading my whinge folks and don't take a clear balanced head for granted!


To be honest I think we all take alot for granted especially our health, its only when things go wrong that you realise how fortunate we are ....Reading the above made me realise this once more

Hope things improve,

All the best
 
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Hope it gets better or fixed soon.
Sounds like you've had a pretty crappy time of it.
Hang in there and keep things positive :)

Jamie
 
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Hang in there, buddy. My younger brother Dave has had recurring labyrinthitis for the last couple of years, but he is better now and rode with me today! :)
 
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I feel your pain. Having been 'knocked for six' by a chronic illness which ended up in me retiring at 47, having to give up a great job, working with some fantastic people for an amazing company. Take every day as it comes, if you don't feel up to doing so much take a day off doing things. When you have the energy / motivation get things done.
 
I've had labyrinthitis twice and I can tell you it's the worst feeling ever.

It's like the worst hangover you've ever had x 3.

I was lucky in that I had both attacks at home.

It knocks you out for the day, vomitting, spinning rooms and you just have to try and sleep.

My second attack occurred in the garden and I had to lean against the wall and crawl along the ground to get into the house.

If the neighbours had seen me they would have thought I'd been on the bottle in the shed.

I did get early warning signs, but if this happens when you are riding or driving it's best not to think what could happen.

Good luck and I hope it goes away and you get better.
 
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I have had similar things over the last 5 years or so, started with nausea room spinning vomitting etc, both times i tried to drive home after calling my wife, never maanaged to even get the car started before i fell asleep, my wife had to get the spare keys and open the door to get me out and then haul me into her car.

I ended up having all sorts of tests, including a lot of reseach online. The symptoms i have are almost certainly Menieres Disease which can range from mild to severe life altering ones.

The best piece of advice i can give if you dont mind is to keep a diary and record everything you did during the day, work, exercise, stress, food and drink and sleep.

I found for me there were several triggers pretty much like migraines.

Mine were lack of sleep, dehydration, louds noises, looking at ceiling tiles and carpet tiles and the worst of all was stress.

I just then made some changes to my lifestyle, i dont leave home without a bottle of water, my glasses and a banana :oops:

And i regularly do some exercise for the head/neck etc which restores the brains balance.

Good luck Buddy !!!
 
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widowmaker":hihpdfix said:
The best piece of advice i can give if you dont mind is to keep a diary and record everything you did during the day, work, exercise, stress, food and drink and sleep.

I found for me there were several triggers pretty much like migraines.

Mine were lack of sleep, dehydration, louds noises, looking at ceiling tiles and carpet tiles and the worst of all was stress.

I just then made some changes to my lifestyle,

did the diary thing and to be honest, after 3 months i couldn't find a specific trigger.

daft things, i could spend 3 or 4 hours on the xbox and be fine that evening and the next morning yet an early night the next day would leave me waking up feeling like someone had been drilling into my head!

Now that it has started to settle down a bit and come in waves rather than a constant daily thing it seems to be fluid / food intake (when its lower than it should be) that kicks it off along with prolonged exposure to loud noise (pubs, parties etc.) or long periods in bright / dull spaces.

its the small things you take for granted though, being confident enough in your balance on a ladder (or bike!) being able to look up into a tree (or paint the living room ceiling) without feeling like your going to fall backwards and other daft little things that just limit what you can and can't do.

the worst part is sounding like a massive pussy when you say you can't do something as basic as clearing the gutters or sliding a roof slate back in place. I'm sure people think i'm using it as an excuse sometimes!
 
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Being not able to do the things I used to take for granted is the thing that really gets me down. Somehow takes away from your manhood being unable to do the more complicated DIY jobs I used to do. Even gripping a screwdriver can be agony sometimes, my hands are the worst affected part but the rest of my body is slowly getting worse.

The end result is that we end up hiring people to do the jobs I used to do.
 
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