Vestibular Migraine (a.k.a. Migraine Associated Vertigo or MAV)

I don’t normally go into what’s going on in my personal life, because you’d get fed up of hearing me complain. And I’m not joking. I’ve been suffering side effects to chemo that I had in 2003, ever since. Sometimes it’s small things, like vitamin deficiencies, of which I have a lot, or sometimes it’s big things, like nodes on my liver, which are currently under investigation.

What I want to talk about today, is Vestibular Migraine. Now, if you’ve never had a migraine before,  you might think that it’s just a painful headache. It’s not. Migraine’s often come with screaming pain, visual disturbances and dizziness. My type of migraine, Vestibular Migraine, isn’t actually a migraine. Great logic there, right? It’s linked to the nerves in your brain, reacting to an element of your life – stress, diet, sleep and exercise. Overdo or don’t do enough of any of these and you can be floored with a splitting head, huddled up in pain and wishing you could just sleep. But, if you were able to sleep, you wouldn’t have a migraine. Good luck with that.

Here’s the official version of what it means, from Vestibular Migraine (a.k.a. Migraine Associated Vertigo or MAV) – See more at: http://vestibular.org/migraine-associated-vertigo-mav#sthash.xVzzMtCE.dpuf

“Most people associate migraine with severe head pain and a period of incapacitation. However, a large portion of people with migraine often have no accompanying pain, their predominant symptom instead being vertigo (a spinning sensation) or dizziness/ disequilibrium (balance loss), mental confusion, disorientation, dysarthria, visual distortion or altered visual clarity, or extremity paresis. This presentation may result in a visit to the emergency room and extensive laboratory, imaging, and other diagnostic evaluations—often with normal results, which lead to increased confusion and anxiety on the part of the patient.”


So, why am I bringing this up? Because I suffer from this and I was only diagnosed on the 23rd December last year. Until then, my balance was terrible, because the second I closed my eyes and opened them again, I was dizzy. Even just doing normal things, like reading or walking. If I get up, after sitting for a long time, the whole room can start spinning and I feel sick, from the motion.

They call it a form of vertigo, because it’s often associated closely with a lack of balance, movement associated nausea and dizziness.

This condition is the real reason that I’m so behind on my blog review list. I’ve been unable to read for more than half an hour, at a time, and even then, keeping track of the storyline for a novel length book is difficult. I’ve only just got back into reading novels, but once I’ve read one, I’m mentally exhausted and need a break from new stories. Thankfully, *crosses fingers* it hasn’t effected my writing. I can sit at the computer, writing all day, but trying to read, on my Kindle or on my computer, takes a whole different kind of effort.

Unfortunately, because of my liver problems, I’m not allowed to take ordinary painkillers, because they travel through the liver and could make my condition worse. Without that, I have to be really careful, because there are currently no medications I can take, to control my ‘vestibular migraines’. The only way to control it, at the moment, is to control my diet. I’ve had to remove the following from my diet, which, believe me, is hell:

  • Chinese food
  • Coffee
  • Alcohol (not really a problem for me)
  • Citrus fruits
  • Chocolate
  • Cheese

Sounds awful, right? It really is. Cheese, Chocolate and Chinese food basically made up my three main food groups. But, I was good and I stopped eating them, because I didn’t want to end up with a splitting headache. Now, after keeping a food diary and linking headaches with what I’m eating, I’ve also had to cut out anything that contains Citrus Acid:

  • Irn Bru
  • Haribo sweets
  • Empire Biscuits (the jam)
  • Certain crisps
  • Certain soups
  • Pepsi

Anything that contains Citrus Acid could give me a headache. And when I say headache, it’s more often than not a lingering, painful throbbing in a certain area of my head. When it’s really bad, I’m completely floored, barely able to concentrate or work and the pain is so bad that I’ve even taken painkillers, that I’m not supposed to have and gone to my bed, in the middle of the day.

These type of migraines aren’t always the type you imagine – they don’t always come with the sparkle out the corner of your eye. This type of migraine is particularly brutal, because it’s a direct misfire of the nerves, that cause pain instead of an ‘ordinary’ headache.

Sadly, there isn’t a treatment that will completely cure a vestibular migraine, because it’s so closely related to the nerves in your brain. But here’s what treatment can be offered:

“The methodology believed to have the highest efficacy in the management of migraine dizziness is a combination of medications, vestibular rehabilitation, and lifestyle modifications that include limitation of the risk factors associated with migraine (those related to diet, sleep, stress, exercise, and environmental factors). – See more at: http://vestibular.org/migraine-associated-vertigo-mav#sthash.xVzzMtCE.dpuf”

You’ll notice in there that exercise, sleep and stress are triggers for these type of migraines. This means that if one of those is off, just a little, the other two are usually effected. At the moment, I’m not sleeping well, so my stress is heightened, I’m exhausted and therefore have no will or energy to exercise. Unsurprisingly, this is causing a lot of headaches. And, because I’m keeping a food diary and I have to try a food, before I can know if I need to eliminate it from my diet or not, I’m giving myself more headaches than I’d prefer, but there’s not much choice.

Right now, I’m just putting this out there to get more exposure. Vestibular migraine is an invisible illness, like many that I have – chronic fatigue syndrome, chemo side effects and serious vitamin deficiencies. Too many people hear that a person has a ‘migraine’ or ‘fatigue’ and all they think is – “oh, it’s just a headache, get over it” or “you’re just tired. We’re all tired.” But that’s not what it is.

To understand someone with vestibular migraine, you have to understand that not everything that happens, is actually visible. The pain, the pounding, the visual disturbances, cannot be seen, so people can’t look at you and know that you’re ill. Just as you can’t look at someone else and know if they’re in screaming agony and barely holding it together. The more people who understand and accept that an invisible illness such as this is just as real as a physically obvious illness – a missing limb, a broken bone – the better off we’ll all be.

I’m very lucky that I get to work from home, with my writing and have a group of authors, publishers and followers, who accept this and know that I have invisible limitations to what I can do. So far, when this illness and others have got in my way, especially with my reading life, the authors have been wonderfully accepting about me taking much longer than is appropriate to complete my review. Readers are understanding as to why I haven’t been active every minute of the day on my social media accounts and my publishers know that my limitations often affect the quality of my work, before I send it to my editor.

Without this acceptance, my life would be ten times harder and more stressful, so THANK YOU to everyone who has understood this. ❤


4 thoughts on “Vestibular Migraine (a.k.a. Migraine Associated Vertigo or MAV)

  1. It is really a problem when something triggers a sensitivity in certain major organs. Your chemo obviously was a life saving measure but it does come at a price. It is also a problem when you have to remove certain food groups as well as juggle deficiencies. You have my sympathy and I do hope that the measures you have taken will help.Not sure if you have tried acupuncture but it may be worth talking to a recommended practitioner.. good luck.

    1. Thanks Smorgasbord. I hadn’t thought about acupuncture, but I’ll definitely ask the doctors about it. I have nerve damage as well, so it may even help that. 🙂 Thank you. x

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )


Connecting to %s

This site uses Akismet to reduce spam. Learn how your comment data is processed.