I had it very badly. Here is my story.
(I sent this to someone else who has it and was looking for help so hopefully it'll give you a bit of insight too).
I collapsed with sudden onset extreme vertigo at the end of April 2015. On the run up to this, I’d had episodes of spinning and feeling dizzy and the GP diagnosed labyrinthitis and gave me travel sickness pills which made me drowsy so I didn’t take them.
On that evening in April, I’d been fine all day, stood up from the sofa and started feeling dizzy. I assumed it was the same as before but then suddenly everything just started spinning really really fast. I collapsed onto the floor. I couldn’t even stand. It was awful. And the spinning just didn’t stop.
The GP wasn’t helpful and just prescribed anti vomiting drugs and some more travel sickness drugs.
Luckily we have BUPA and I was able to see an ENT consultant who checked me all over, did MRI scans and confirmed the diagnosis of labyrinthitis. Unfortunately he said he couldn’t cure me. But he referred me to a local lady called Sara who is an audiologist who specialises in balance disorders.
Sara did a lot of tests on me and told me one of my ears was affected. My inner ear, the part of the ear responsible for balance was damaged due to a viral infection. Consequently the signals it was sending to my brain were that I was spinning rather than still.
Sara told me that the “cure” was to train my brain to ignore the signals coming from my damaged ear. To do this, she gave me exercises called Vestibular Rehabilitation Therapy (VRT) to do every day. It started with standing still and moving your head from side to side and progressing to standing on a pillow on one leg with closed eyes.
Sara explained that this brain re-training takes months but eventually cures you.
She said travel sickness pills were not a good idea because they stop you feeling dizzy which is good in the short term but your brain needs to feel The dizziness in order to adjust / compensate.
Because of this she encouraged me to get out and about.
Even though my case was very bad, I progressed well through the VRT exercises. This is because I’m self employed and a mum and don’t have the luxury of being able to take time off sick. So as soon as I was well enough to walk around (approx 5 days) I was back at work and doing the school run. I felt very dizzy and unsteady doing these things but life still goes on!
After a month or so of VRT the dizziness reduced to a wobbly feeling (a bit like how you feel stepping on land after being on a boat). And it stayed like that for months and months. I felt very down and felt like I would never be better. Luckily I was seeing Sara regularly and she was very good at reassuring me that it would eventually come right but that I had to keep on with the VRT.
I also struggled with extreme tiredness and Sara said this was normal because my brain was continually dealing with the bad signals from the damaged ear and compensating for them.
Another issue was anxiety. I’d never previously suffered from anxiety but after this, I did. I was terrified that it would happen again.
Sara reassured me that it wouldn’t happen again because my brain was used to compensating for the dizziness and ignoring it.
My take on this was that my ear was always going to be damaged and that it was only my brain compensating that made me not feel dizzy.
I would say that it took a good six months of VRT before I started feeling a bit better. In the end I almost got used to the feeling of being wobbly and fuzzy head. It was very gradual and suddenly one day I realised that the wobbly feeling had gone!
But I would never consider myself “cured” because the problem is still there - it’s just that my brain is now really good at compensating. But when I’m feeling tired or ill or stressed, occasionally the wobbly feeling comes back. And then I just do the VRT exercises for a few days and my brain then remembers to compensate again.
Over the last 3 years I’ve slowly got more and more confident. I was worried about doing something that would start it all off again. Sara said it wouldn’t but you can’t help worrying.
Last year I went on a boat cruise with no problems and this year I went on roller coasters - one of which twisted me upside down! After the roller coaster I felt a little out of sorts but one day of VRT and I was back to normal!
I’m so grateful to Sara for steering me through it. I don’t think I could have coped without her help.