Dizziversary

This week is two years since I began feeling dizzy – later diagnosed as the early symptoms of a Vestibular Dysfunction.

“A vestibule what??”

Exactly! Not many people know about this condition, but actually it’s not that rare. I started writing about my experiences and soon connected with many others who have had some sort of Vestibular problem.

So here’s my dizzy story, and at the end of the blog, details of where to find more info and help, if you or someone you know experience something similar.


In the beginning

I first remember getting a dizzy feeling while in the shower one morning. I had to hold the walls to finish rinsing my hair. It was a really weird sensation. But then it faded and I carried on. This happened a few more times over a couple of weeks, at work or at home, making me feel like I needed to sit quietly until the dizzy spell passed.

But one day at work it hit much harder. I was in a meeting and I just couldn’t concentrate on what was being said. The room stared spinning, but neither sitting or laying down made the symptoms ease.

About 15 years earlier I’d had Labyrinthitis – an inner ear infection that impacts the way your normal balance system works, using your ears. Labyrinthitis feels like you’re in a washing machine – and I remembered, these bouts of dizziness felt quite similar.

I went to doctor, who suspected it was the same issue, even though I didn’t have a visible ear infection this time. But two weeks of tablets later, the symptoms were getting worse not better.

Symptoms

Some people say it feels like being on a boat, or like being permanently drunk. I would wake up feeling like I’d had about three glasses of wine – a bit floaty and not too confident in myself. I’d be able to walk, but not too quickly, and perhaps have my hands ready to stop myself from falling to one side. As the day went on, it was like adding several shots of tequila. The more I did, the worse I would feel.

Lots of people joke that feeling permanently drunk must be fantastic – but much less enjoyable if you’re having the hangover at the same time. At its worst, it’s like being in a washing machine or on the Waltzers. I’d feel nauseous in my head and stick to my stomach, and even when lying down with my eyes shut, it’s impossible to get off the ride.

I can also feel very vulnerable – it took me a long time to realise that was a good discriotion, because it’s hard to describe. Just that fight of flight instinct kicks in but you could never explain why, because my rational self knew that I wasn’t really in ‘danger’. I can just feel my brain react as if I am.

I developed back and neck problems from walking badly and being constantly tense. It’s a massive mental challenge too. I couldn’t work or go to many social occasions – and I hated it. That sense of vulnerability can make you very anxious and scared to go out. I’ve heard of others becoming quite reclusive because they are scared in case they fall and hurt themselves, or worried that people will judge them for ‘drunken behaviour’.

It’s also very difficult to explain to people that you have an illness that they just don’t understand.  You either have to go into great detail or just belittle it by saying “I get a bit dizzy”, and quickly move on, and over time I realised that belittling the illness wasn’t actually a good thing, because why would people care or help, if they think it’s nothing serious?

Cause and effect

Vestibular issues can happen on their own, or as a result of something else. I have met with people who have had a brain tumour; brain haemorrhage; a stoke; Menniere’s desease and Vestibular Migraine -all of these can lead to similar dizzy symptoms at some stage, but of course, they all have other causes and very different treatments!

My neuro-physio explained the impacts on my brain in a way that helped me understand why certain things triggered my symptoms more than others. Where our brains normally scan our surroundings and ‘orientate’ to judge space and distance, my brain will respond to movement differently, and become disorientated – whether that is me moving around, or things moving around me. So if I were to sit still, in a room where nothing else was moving, my brain would know that I am safe and I could feel fine. But if I move my head, walk, spend time in a busy place or even watch ‘action’ on TV, my brain would get disoriented and confused, and panic, causing the dizziness.

The same goes for ‘scanning’ with my eyes. So reading or shopping (looking around for things) can completely throw me – even now. I hate spending time in enclosed spaces, long corridors or low ceilings. I’ve learned that when moving through a crowd or in a vehicle, I need to keep my head up and eyes open, with a clear focal point, so that my brain can ‘see’ and take in as much information as possible, even though the dizziness makes me want to close my eyes or look at the floor. Now I naturally, almost unconsciously gravitate towards clear space, look for the exits and move towards windows.

Diagnosis

It took three GP appointments to get a referral for relevant tests. I later learned that these conditions are still not widely understood or easy to diagnose, so it can take time to get answers.

I was sent for an MRI brain scan to check for signs of a tumour, haermorage, stroke, MS and god know what else. An MRI takes about 40 minutes and you need to be perfectly still. Plenty of time to start thinking ‘what if’ and start mentally writing your will and funeral plans!

Luckily my consultant was able to rule out all of those possibilities, which is actually a very nice health check to have had. He then referred me to a Neuro Physiotherapist (who knew they existed?) and an Ear Specialist who later discovered that my earlier episode of Labyrinthitis was probably the cause of damage that led to this later vestibular illness.

A temporary ear infection, all those years ago caused my brain to try to work around the problem, by learning to balance without using my ears, becoming more dependent on my eyes and incorrect body movement. But as time went on this work-around no longer worked effectively, and my brain went into melt down and became totally disorientated, sending panic signals that I wasn’t ‘safe’.

Getting treatment

At first I was given tablets to help with the nausea but that actually felt worse. Having read about other people’s negative experiences with various long-term medication I’m incredibly grateful that my treatment was neuro-physio based.

Much like other types of physio, this treatment helps you to retrain your body and brain to work properly together. I’ve had exercises to train me to go back to effective eye movement, muscle flexibility and balancing, often with my eyes closed to make my brain less dependent on sight and get back to using my ears and total combination of senses.

The main benefit for me was education – I now understand how my Vestibular system works and why mine stopped working. I understand what’s likely to be a trigger, which means I can avoid certain activities, and I know when I need to rest and let my brain catch up.

Living with long term symptoms

I made gradual progress, and it took about a year for me to feel ‘better’. And although ‘better’ is a true description, it’s still not cured. I will probably always have symptoms. I feel them coming about 3 or 4 times a week and that’s a warning to look after myself. If I don’t, I end up back on the Walzers.

But amazingly, I have been able to do most things I would have done before, including go on roller coasters! At first I didn’t even dare to dream that I’d be able to do that ever again.

My motto is “I can do anything, but I can’t do everything.”

  • I can go to a concert with a big crowd – but I’ll need space and quiet time before and after to rest
  • I can drink alcohol – but not much! It’s like everything I drink is double strength
  • I can work hard, go to meetings and work at a screen again – but I need very regular breaks
  • I can read books, but not too many pages at a time – so I now love audio books
  • I can go shopping – but in small doses, and I avoid greeting card shops and places like WHSmiths where the aisles are high and the lighting is just ‘wrong’. Hard to define, I’ve just learned from experience!

As long as I’m sensible and know my limits it appears that I’m living a totally normal life.

Mental health

Mentally, it’s been a tougher ride. I had to accept the advice that “you may only ever get to 80% of what you could do before”. For a long time that made me incredibly sad, very angry and confused. How exactly do you cut down everything you once did by 20%?! I work, I have a family, I had a very full life – what on earth do you give up?

Ultimately that’s what I’ve had to work out over time. I’ve cut down my working hours (that was a massive decision) and generally had to prioritise what I do, and just let some things go.

That’s why I started writing Unbalanced Woman blogs – a sort of therapy for me to work through how difficult it was to find a work / life / family balance. And then people who don’t have the same illness, started to tell me that they feel the same lack of balance in their lives, no matter what their situation.

So the real learn for me, is that even before I was poorly, I was probably always ‘Unbalanced’ – just not literally! Many people feel they could do with better Life Balance. My illness just forced me to look at mine differently – and I’m glad I did. I’m proud of myself for managing to find a way back to a ‘full life’ – I just have a different definition of ‘full’ now!


More information and help

[TV Voiceover…] If you have been affected by any of the issues covered is this blog, you may find this website useful:

http://vestibular.org/understanding-vestibular-disorder

I’m definitely not qualified to give any medical advice, so everything in here is just my own experience!

If you are regularly feeling dizzy over a long period, I recommend asking for help from a Doctor. Remember that these dysfunctions are difficult to diagnose, so don’t give up. Keep pushing for help, and don’t just rely on taking a medication that may only mask the symptoms.

Forums and support groups: (These are private groups you can ask to join. I can’t provide links to the private ones, so just search the names on Facebook)

 

#LiterallyUnbalanced. #Vestibular #Unbalancedwoman

Literally Unbalanced

Hypothetical question: Due to illness you are told that you need to do less and rest more, you can probably only manage 80% of what you did before the illness. Would you:

  • A. Cut down your work hours, and therefore your salary
  • B. Spend the weekend resting at the expense of family time
  • C. Make like an ostrich, stick your head in the sand and pretend you can still be Wonder Woman (until you collapse).

This is the question I’m currently battling with, and the reason I started writing as Unbalanced Woman. It’s become a sort of therapy – a way to get thoughts out of my head and make sense of them. A way to accept that I’m not Wonder Woman and stop (try to stop) feeling guilty about it.

(If you’re interested in what’s wrong with me you can read What’s wrong with the miserable bitch anyway? below – but I’m giving you the option to skip the moaning parts and get straight to the point)

Here’s the point… Illness or not, do lots of women battle with this conundrum? I know I did before I was poorly. I can name so many Wonder Women in my life who struggle to manage everything they want to do, think they have to do, feel they don’t have choices. Is this part of the female make up?

This is probably illustrating that I have so far been attempting Option C – refusing to admit that I am not Wonder Woman. Of course I covet her figure, her graceful running ability and her sparkly knickers. Who doesn’t? But Wonder Woman is also a Super Hero. She can sort out the world, do the right thing, make everything better, and of course with glossy hair and full make-up every minute of every day. She’s like a modern day Facebook thread. You’d never see her posting photos of her losing the battle with the bad guys because she’s got a phone in one hand, a child on her hip and wearing old, elasticated-waist pants because her lycra body suit is still in the wash.

Well this Wonder Woman is admitting defeat. I’ve tried. God I’ve really tried. But I’m knackered. I’m fucked. I’m crying. Is this the point where something has to give? But again…. what?

I still can’t shake the feeling that being poorly is an ‘excuse’. That I need to get over it. People talk about ‘invisible illness’ being so hard to explain to others, but actually it’s so hard to explain to myself. I have got into a habit of saying “Last year I got dizzy. I still get a bit tired some days” – soft, non-threatening words to gloss over a problem and move on.

My Neuro Physiotherapist (who knew they even exist?) is a wonderful lady with a heart of gold, a wicked sense of humour and some hard truths. Her tough love is just what I’ve needed. She says the only way I will face up to what’s really happening is if I start being honest about it. She has urged me to start to tell people that I’ve had, and I quote, “a horrendous brain dysfunction” and actually also makes me say “not had, but have” – present tense, because – and this is the hard bit – I’m not better. I’m significantly better than I was a year ago, but I’m not fully ‘recovered’. I might never be.

That shit is hard to say because it’s hard to accept. If I say it, it means I believe it. It means it’s true.

I’m trying it out, I’ve said it to a few people but it’s so dramatic and it turns into a longer, more invasive talk. Whilst I’m a confident person, this type of attention actually makes me squirm and I just want to go back to being a Wonder Woman impersonator, using my metalic wristbands to deflect any uncomfortable sympathy.

But again it makes me think… we all do it. All the time. A woman who feels like she should have cartoon-style match sticks holding her eye lids open will typically say “Yes, I’m fine. Just a bit tired. Anyway how are you, you look amazing!” and then order a triple shot coffee and anything with sugar in it.

Deflect. Cope. Crack on. (Crack up?)

Can I change? I think I have to. I’m told by everyone that my health comes first. Perhaps I need to listen. But why didn’t I listen before I became ill? Why don’t any of us?

I’m really trying to lift my head out of the sand. Perhaps I can do it bit by bit – be an ostrich but wearing sparkly knickers and shiny wristbands.

Now there’s a picture I like. Can someone draw that for me? I think that would help!

x

What’s wrong with the miserable bitch anyway?…..
I year ago I started feeling dizzy. Just for a few minutes here and there. I remember the first instance was in the shower and I had to hold the walls to finish getting washed. It was a really weird sensation.

As the days and weeks went on it happened more and more often so I went to the doctor. Assured that dizziness was almost always an ear infection or low blood pressure I continued putting up with it. But when I got worse and worse and it became clear that it was neither. A couple of MRI scans and visits to a Neuro Consultant, I was diagnosed with a ‘Vestibular Dysfunction’ which means that my brain had forgotten how to balance properly and had to work much harder to keep me upright.

It’s relatively new in terms of understanding it, which is why it’s hard to explain what’s wrong and when I need help. But I’ll try.

Where our brains normally scan our surroundings and ‘orientate’ to judge space and distance, my brain will respond to all movements by becoming disorientated – whether that is me moving, or things moving around me. So I could sit still, in an room where nothing else was moving and feel fine. But if I walk, go to a busy place or even watch ‘action’ on TV, my brain gets confused.

The same for ‘scanning’ with my eyes. So reading and shopping (looking around for things) can completely throw me. Even now.

In the past I have described my symptoms as like being permanently drunk. At my worst I would wake up feeling like I’d had about three glasses of wine – a bit floaty and not too confident in myself. I’d be able to walk, but not too quickly, and certainly not drive. As the day went on, it was like adding several shots of tequila – feeling like I should sit down and be looked after until someone could take me home and put me to bed. At worst, it’s like being in a washing machine or on the waltzers and even when lying down with my eyes shut, I can’t get off the ride.

Lots of people said that feeling permanently drunk must feel fantastic – cheap date etc, but it’s also like having a hangover at the same time. And sometimes I will look like I’ve been drinking – I’ll walk unsteadily, needing to hold on to things. I’ve heard of others becoming quite reclusive because they are scared to be in pubic in case they fall or people judge them for daytime drunken behaviour.

I considered wearing a T-shirt saying “I’m not a drunk, I’ve got a vestibular dysfunction”, but no one knows what that means anyway.

I’ve been very lucky to be referred to an expert Consultant and Neurological Physio who have helped me to retrain my brain, eyes and vestibular system to balance me again. I have great understanding of my triggers which means I can avoid certain activities and I know when I need to rest.

As I say, I’m not recovered, but I’m doing really well and I’m incredibly grateful for the progress I’ve made. I know there are many, many others who have not had the same support and have to cope with life on long term medication just to manage the nausea.

TV Voiceover… If you have been affected by any of the issues covered is this blog, you may find this website useful:
http://vestibular.org/understanding-vestibular-disorder