I’ve suffered from vestibular migraines for nearly 3 years now, and although I did have migraines when I was a teen I never had them as severely!
When I say ‘recovered’ I will always have a sensitive migraine brain and have issues when over using my laptop but I mean recovery as in nearly got back to normal.
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 Labyrinthitis 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:
- Sensitivity to lights
- Sensitivity to loud noises
- Eye pain
- Sinus Pain
- Neck pain
- Jelly Legs
- Tight Chestedness
- Heart Palpitations
- Problems speaking
- Brain Fog
- Feeling of vertigo
It took around a year and a few ENT appointments until I was sent to a neurologist that diagnosed me with vestibular migraines – Dr Barry Seemungal in Charring Cross Hospital London.
In all, I visited around 11 doctors and specialists. Each gave me their personal opinion which ranged from Labyrinthitis, to anxiety, depression to Migraines.
I was bed ridden for the first few months and it took around two years to walk properly again and longer to see properly. I was dizzy everyday for at least 2.5 years and often I was so depressed I didn’t want to carry on.
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, sodium Valproate, propranolol just made me feel like a complete zombie and I could not function day to day.
Note: Stemitil was my go to take the edge of the dizziness on bad days but it wore off after a few hours and didn’t get rid of the migraines.
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 realizing you are limited when it comes to traveling 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 realize 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 afterward.
It’s 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? This is my Youtube video on getting past loneliness
Anger – I was so F&CKING ANGRY! Why me? Why now? Why for so long? WTF and there’s meant to be a god? Pleading to god, make it be over now it’s been a WHOLE F&CKING year! make that 2 years and so on – and I haven’t really prayed in years! How the hell is it possible to feel fine then wake up dizzy 24/7 EVERYDAY for 2 years plus??
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?
How I Got Better
Accepting it! – Here is a video on how I had to learn to accept it and stop FIGHTING it all the time as it was so exhausting!
Vestibular exercises – Here are the vestibular exercises I did. Luckily living in London put a massive strain on my vestibular system meaning I actually think I got better FASTER! I also did a few weeks of vestibular exercises and here are some of the basic ones I did although I do not need to do them anymore.
Physiotherapy – I started to have regular Physiotherapy on my neck. After a past severe whiplash injury which I thought added to my symptoms, I used to go for a weekly massage for around a month, and then every 3 weeks. I found that my neck was less sensitive and I had fewer migraines too.
Counselling – My biggest regret was not seeing someone sooner, and I tried to manage it all on my own. I felt my partner although incredible loving & supportive just couldn’t handle this all the time and working 10 hour days & also providing for a very sick partner who was depressed and down every day. Here is how I felt on dealing with the depression that goes with it.
Computer Glasses! – I still had to work but I could only manage 2 hours a day working from home as a social media manager. I found the screen made my symptoms worse and I felt exhausted but when you need money, not a lot of options there, you just have to do it! I bought computer glasses that helped get rid of glare. Here are some other vital things that helped me vitamin wise.
Time – The biggest thing was time. My brain was almost like it was recovering from an injury and rehabilitation takes time and can be incredibly frustrating.
Flunarizine – When it comes to meds, this was the one that changed everything. Although after 2 years of staying active I was around 70% anyway and could start going to bars and stay out late, I still had that daily dizziness and although no way near as bad it was still THERE! Flunarizine 5mg a night helped with the dizziness to the point that on some days now I actually FORGET I am ill. I still get a few breakthrough migraines but otherwise, I am mostly migraine free.
( This med is usually the last resort for many people and it can have bad side effects and has been linked to parkinsonism. Not many countries offer this med and I have to be regularly checked up on by a neuro and monitored every 6 weeks )
Diet – Special diets really didn’t seem to make a difference on my 24/7 dizziness so in the end I gave up. I can now drink and I eat cheese and to be honest too much junk food! I did speak to a migraine specialist that said diet doesn’t make that much difference to migraines but the way I see it is, if you eat crap food you’ll feel pretty crap lol.
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 every day 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.
REMEMBER YOU WILL TAKE STEPS BACK!!! – But as long as you can look back and see that OVERALL you have improved since the beginning, that’s a positive thing!
YES! The illness will ALWAYS be there but I am taking steps to manage my stress more and It’s likely it will come back if the med stops working but it will be no way near as bad as I managed without meds for nearly a year and was functioning pretty well, but Flunarizine got me past the last hurdle.
UPDATE 17/03/2019 – I am not currently on any meds unless I take sumitriptan for when I get break through migraines. I have ni dizziness at all anymore and can go out drinking and clubbing etc. I can also fly on plabes now, do some sports and swim.
By biggest hurdle is I cannot use a computer for long periods of time maiking me have to consider changing career and finding suitable work has been tough.
I’m now a VEDA ambassador and I’m hoping to bring more awareness, especially to doctors that try to treat us but label us with the wrong thing! Also to make friends & family more aware of what our daily lives are like and even though we may LOOK ok, we can be going through hell!
Veda are always looking for stories so feel free to add yours on their website!