Accepting that this is now your life and there is nothing you can do about it is not true. You literally have to get up each morning and fight to walk that 100 metres to the shop, even if you can’t see very well or feel you will fall over.
I have been diagnosed with vestibular migraines although my original diagnosis was Labyrinthitis.
My background was marketing and sales although I had to leave my full time job 2 years ago and I now work as a marketing freelancer from home.
Just over 2 years ago, after an extremely stressful period at work I caught a virus. I just shook it off assuming it was a cold but on my way out to lunch the ground felt like it was moving and I became very dizzy and nauseous. Things started to take on a dream like quality and I felt I wasn’t really present. I had to hold onto a wall to get back to the office and then the symptoms died down only to return a few days later but on a daily basis 24/7. The doctors believed it was Labyrinthitus and it would clear up in a few weeks, but 7 weeks later I was STILL extremely dizzy and unable to go back into work.
My symptoms included:
● Brain Fog
● Weak legs
● Sensitivity to bright lights
● Sensitivity to loud noises
It took around a year and a few ENT appointments until I was sent to a neurologist that diagnosed me with vestibular migraines. In all, I visited around 11 doctors and specialists. Each gave me their personal opinion which ranged from Labyrinthitus, to anxiety, depression to Migraines. I fought against the anxiety diagnosis as I knew it only started once my balance issues began and it seemed like the easy way out for a lot of doctors that couldn’t admit to themselves they just didn’t have enough understanding of my condition.
Treatments I’ve tried:
– B12 Vitamins - They definitely gave me back more energy
– 5- HTP - I found this greatly improved my anxiety and insomnia
– Acupuncture - This did actually work and settled my dizzy symptoms down for a few days but not completely and it was expensive to keep up with it. It also helped with my nausea and digestion.
– Natural Healing - Hands on healing definitely helped with the anxiety and I would get a better night’s sleep but although it helped lessen my symptoms, like acupuncture it didn’t clear it up completely.
– Physiotherapy - My trigger seems to be my neck and I often wonder if this resulted from an old whiplash surgery. Physio helps reduce the neck pain and lessens my migraine frequency.
– Medication - In my case I happen to be very med sensitive so medication such as epilepsy drugs, nortriptyline, stemetil, topiramate, amitriptyline, propranolol just made me feel like a complete zombie and I could not function day to day.
My vestibular disorder has impacted my life massively.
Friends – You don’t see them as much. In time, they stop inviting you to things, not out of spite, but realising you are limited when it comes to travelling on trains, busy bars, bright lights and loud music.
You LOOK Fine – I can scrub up pretty well each morning : ) But underneath I still can’t walk more than 20 minutes before I feel the need to go home as the floor is moving, or my legs are like jelly. You also end up having anxiety just trying to do normal everyday things, like get on the Tube, or cross a busy main road. As I’m a blogger, you will see photos of me smiling and laughing, but you won’t realise it took maybe 2 weeks of resting and building up
my strength to have that night/day out, and If I do, I can guarantee a few days/week resting afterwards.
Its Lonely – A lot of us had to give up careers we really loved when we were hit by this illness. I was working in travel and content and was ready to move into a dream job role when this kicked in. I had to give up my job and find a home based one – which I did – and luckily I really enjoy. But when you’re in your flat day in day out, for months on end, without your co workers, you start to get depressed and think of the life you had before, and is this my future?
Loved Ones – My partner is incredible, but he gets tired too, He works 10 hour days and he worries about me constantly. Can I go out today, have I used my laptop too much? Am I getting another attack?
I found VeDA through Facebook groups and articles posted for vestibular disorders. Reading other people’s stories made me realise it sounded like it was more migraine related and i sought out specialists in this area.
My words of wisdom to you:
Accepting that this is now your life and there is nothing you can do about it is not true but you literally have to get up each morning and fight to walk that 100 metres to the shop, even if you can’t see very well or feel you will fall over as with time, I managed to improve massively by testing myself each day. It’s very easy to become housebound with this condition, but living and working in London I had no choice but to go out everyday to busy supermarkets, catch busy tubes to doctors appointments and manage busy high streets packed full of people. I am certain that I am where I am today because rather than avoid my triggers I confronted them. Always remember it CAN be extremely hard to find compassion from loved ones as we look fine! I’ve often thought people would be more accepting if I had a physical symptom or illness.
Be aware that there are literally THOUSANDS of people suffering from this, most of them undiagnosed and it’s important you reach out to others in relevant support groups such as Facebook groups for vestibular conditions. I found that talking to others that could understand my symptoms and have compassion for me whilst others found it hard kept me sane.
My vision is a lot better than it was and although I have issues with walking too far, I have booked a long haul holiday for this year. I can also stand up for long periods of time, handle busy bars with loud music, drink and I started my own marketing business. My main aim is to start surfing again next year.
Check out Sian’s Facebook group: https://www.facebook.com/groups/1259447570808227/