Considering I have been diagnosed with Labyrinthitus for well over a year which in fact, turned out to be vestibular migraines, sometimes it really is almost impossible to differentiate between the two.
16 months ago, after an extremely stressful period at work, I caught a virus which doctors believed was Labyrinthitus. It was only when everyone returned to work after 2 weeks and 3 months later I was STILL housebound with chronic dizziness, I really started to question it.
The common symptoms for BOTH conditions can be exactly the same;
- Constant Dizziness
- Pins & Needles
- Weak Legs
In fact, I’m certain a lot of people have been misdiagnosed with one or the other and with over 350 symptoms that can cause dizziness, you can expect a long road to get to your diagnosis. ESPECIALLY when the migraines are mostly silent like mine.
So how WAS I diagnosed? So I had;
- Vestibular Testing
- Ear tests
- MRI scan
- Blood Tests
- 3 x Eye Tests
- Eye Hospital Check Up
EVERYTHING CAME UP NORMAL!
In the end, it took over 13 months to finally get to see a specialist called Dr Barry Seemungal based in Charring Cross Hospital in London. He is a well known neurologist and his diagnosis took under 15 minutes once I explained my symptoms.
He told me that because of my family history of migraines and my mum also being a sufferer it is most likely vestibular migraines. I then also saw another 2 migraine specialists that also told me it’s vestibular migraines because I have a history of them in the family.
They believed the stress at work, flu and possibly an old whiplash injury – apparently whiplash injuries are a common cause for vestibular migraines, a large amount of patients they treated previously had a head or neck injury – made me very susceptible to this kind of migraine.
The thing is, once you’ve be labelled with a condition, the next doctor you see is going to treat you for that condition. In my case I saw 8 doctors and they all treated me for Labyrinthitus because that’s what the previous doctor said I had!
Even when I protested about the meds not working or really bad side effects, and is it possibly Vestibular migraines as migraines run in the family, it took me to see a specialist to finally have it confirmed.
IT WAS MY FAMILY HISTORY THAT FINALLY GAVE ME MY DIAGNOSIS
I am now taking a blood pressure tablet called Candesartan and although it’s only 3 weeks in, the dizziness has lessened dramatically and the headaches too.
I’ve learnt that anything can happen with this condition. You can be planning a trip to Paris on a short break after a great 2 months, and then BAM, new conditions hit you forcing you to be housebound for weeks until you build your strength up.
Each time this happens, you lose your confidence in your own abilities and it makes it harder and harder to get that tube train, or catch that bus as the anxiety that something could happen again is always there.
This is what I’m doing to cope;
- When I feel low I make an effort to go out for a coffee, even if it’s only a 2 minute walk
- I’ve started to look into counselling so that I can deal with living with this condition
- I put myself in at LEAST 1 uncomfortable situation a week, a tube ride or a packed shop
- When I need to I listen to my body and rest – Even if that’s 5 days solid in my house
- I don’t make myself feel guilty anymore, I am coming to accept it and not fight it, only then can I start to understand this condition and treat it.
Still a long way to go but currently more hopeful, I may never get back to working full time and having the career I always wanted but I’m booking by first long haul holiday in over 16 months to Cuba next year and starting up the gym.
2.5 years now and I am MILES better! I still have big issues with using a computer and may never be able to go back to an 8 hour day but I am thinking of studying again and having a career change. My vision improved so much and I even go out now on Friday nights with friends although I still suffer if the lights are very bright, or loud noise ect.
I just started back at the gyn and avoid running as it is a trigger but can lift weights and use the cycle machine.
I joined a support group called vestibular migraine professional which was a game changer as there were others like me and some friends and I created a smaller group for alternative therapies too called migraine associated vertigo – alternative therapies
Mummy seeing double is also a great page!