First I want to say, this isn’t a “woe is me” post – I don’t want sympathy. I just wanted to create a post for other sufferers, so they could find some comfort in it and I could share some of my experience. And also so that the people around me can understand a bit of what I’m suffering with because although I tell people I suffer from vertigo, it doesn't really explain my problem!
I’m fairly new to living with this, so I’ll be sure to keep adding my experience to it as my knowledge grows. I’m currently in the acute stage of another attack, (my 3rd in 18 months), following a flight that screwed me over.
Frustratingly this has cropped up in the middle of an important launch in my business but I’m actually coping a lot better this time round because I finally have a diagnosis of some sorts.
Previously I’ve suffered from severe depression and anxiety during attacks, and crazy weight gain as a result. But this time round, I am feeling positive that I can find ways in the future to manage the triggers and therefore not so mentally broken.
So what is Ménière’s disease / vestibular disorder?
Truth is, no one really knows much about this pool of illnesses and as such I am in both categories. But it’s believed that I probably suffer from migraines (of which I don’t feel at the time) which triggers an imbalance in my ears. The problem with balance disorders is that they are invisible and as such, the medical world don’t really have a very good understanding of causes / remedies.
The type of disorder I suffer from gives me tinnitus and vertigo, sometimes lasting months – and a brain fog that seems to linger round for longer. For some people their attacks are a few hours long, I have no idea why mine last so long but that's part of the frustration. No one knows much about it!
Although the first few days of an attack can be quite brutal, I am able to physically do everything as normal – the problems start when I go back to work and sit at my computer! In fact I’d probably say I could run miles, but I couldn’t write a blog – very strange to have a balance disorder that doesn’t affect my physical balance.
The disorder sends my brain signals crazy whilst my brain is compensating for the imbalance, so I’m really sensitive to noise and blue light that gets given off by computers.
Within a few minutes of looking at a computer screen, I get this crazy intense pressure in my head and I feel like I’ve just got off a fairground ride. Sometimes its so bad it makes me feel nauseous.
A brilliant disorder to have when you run an online business 😉
I have found a great little hack though – if I wear blue light blocking glasses, I can take my vertigo from say level 8 to level 5 and get through a working day. Problem being, I haven’t found a comfortable pair of these glasses yet – so working times are pretty annoying!
Wearing these glasses I’m able to work through the vertigo, but it doesn’t stop the brain fog or the neck ache. So during an attack I feel like I have to work twice as hard just to to get even half of my normal results.
I’ve only recently had a “diagnosis” and I use that term lightly because this disorder is such a big unknown, and there’s been all sorts of theories over the past 18 months. Everything from ear viruses, to Multiple Sclerosis which was particular scary after an MRI showed up some scarring on my brain – that might actually be the related to the migraines though.
And because there is so little known about this illness, treatment is a “suck it and see” lifestyle change type of approach. There are lots of different triggers for the migraines too so I’m about to embark on a journey of migraine prevention exploration!
Things like consistent hydration, supplements and lifestyle changes are known to prevent migraines.
That’s going to be an interesting one since I don’t actually feel the migraines themselves. It’s a “lets try this and see if I can keep my vertigo at bay” long term strategy.
This month, I’m focused on kicking my 10 year daily coffee habit since caffeine addiction is a trigger. Wish me luck with that one!
So I guess its going to be a long and interesting journey, but right now I’m feeling really positive despite being in the middle of an attack. I also have faith that next month at some point most of my acute symptoms will be gone.
I’m learning to be patient, both with recovery and my inability to work at my usual pace.
March 2017 update
I've just kicked my most recent bout of vertigo, this one lasted 2 months – but it was milder in comparison to the last one I had in Autumn / Winter 2016.
My consultant recommended I try some lifestyle changes to prevent the migraines I get (although I don't feel them so its hard to track!) and so over the past couple of months I have quit coffee. And for a daily double shot latte kinda gal, it was a hard habit to kick!
He also recommended I quit chocolate, cheese and alcohol – but quitting alcohol made no difference so I'm pretty glad I still get to enjoy wine. As for cheese and chocolate…. never gonna happen!
However, I have worked hard on keeping my hydration up and listening to my body so I stop when I need rest. I wake up when my body wants to wake up rather than getting up early and having a coffee to kick-start my day. I say no to a lot of social engagements because they exhaust me. I also tag on days either side of big projects to rest because my body needs more time to recover.
The next big test for my illness will be a flight in May to New York!
April 2017 update
I've had a relapse! So, so annoyed 🙁
This time round I'm experiencing extreme fatigue but only mild tinnitus and vertigo. It's times like this I really miss coffee. Trying to stay positive, but having only had a couple of weeks of good health I'm a bit upset and very frustrated.
I have always been of the opinion, and of course I am not a doctor, that my illness is somehow immune system related. I have always suffered with coldsores and I've had shingles twice in recent years. Some experts in the Meniere's world believe that it is related to the herpes virus residing in the ears. Ironically I cannot remember the last time I had a coldsore on my lips (I used to get them 4-5 times a year) but now I have Meniere's disease – could the 2 be related?
I am taking a course of Acyclovir (coldsore treatment) to test my theory out.
June 2017 update
I got better in May, to have a relapse in June. Another flight + cold when I got home and the vertigo hit. Strangely I didn't have vertigo in New York so its not all flights?!
I still feel like my immune system is battered so I'm looking to underlying issues. Discovered I'm allergic to eggs, Chardonny grapes (!) cane sugar and gluten. GREAT! All the things I love (except the Chardonnay which is not my favourite) my body hates and my immune system spends most of the time fighting – no wonder my immunity is battered.
So now begins an entirely new journey!