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, this felt 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.
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 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. It 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.
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 have other causes and very different treatment!!
My 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 looking around, 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, look for the exits and move towards windows.
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.
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 this later vestibular illness.
Damage from all those years ago caused my brain to try to work around the problem, so I learned 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 worke, and my brain went into melt down and became totally disorientated, sending panic signals that I wasn’t ‘safe’.
At first I was given tablets to help with the nausea but I actually felt worse. Having read about other people’s negative experiences with various long term medication I’m incredibly grateful that my treatment was 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 effective eye movement, muscle flexibility and balancing, often with my eyes closed to make my brain less dependent on them.
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
It’s now two years on, and one year since I started to feel ‘better’. And although better is correct description, it’s 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 – but I need very regular breaks
- I can go shopping – but in small doses, and I avoid 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.
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 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 started to tell me that they feel the same no matter what their situation.
So the real learn for me, is that even before I was poorly, I was 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:
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 GP. 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, so just search the names on Facebook)
- Vestibular migraine positive living
- Vestibular disorders support group
- Ménière’s disease UK
- VEDA – (open group) https://www.facebook.com/vestibulardisorders/