Living with a vestibular disorder feels like an alternative universe sometimes . . . And so few people have heard of vestibular migraine, which means getting a diagnosis and finding understanding from others can be difficult.
Living in an unbalanced world
The world is moving. I am moving too. The ground under my feet is moving, from side to side, up and down. When I turn my head the world doesn't move along with it as it should. Instead, everything takes a moment to catch up. And as it does it feels as though I am falling or tilted to the side. Everything is unbalanced, uneven, shifting around when it shouldn’t.
Some days I wake up with a feeling that my body is turning, or even spinning. Thankfully that is happening less and less. Everyday though, my body feels unstable and unbalanced. Dis-equilibrium, it is called by some. Or ‘swimmy’ as my vestibular physiotherapist terms it, which feels the most accurate to me.
It is hard to fully put into words what living with a vestibular disorder feels like. There doesn’t seem to be the right language, the right words, to convey the strangeness. Sometimes it feels like the photo above, or how this photo could be understood to represent it. Spinning, strangeness, dis-orientating.
My diagnosis of vestibular migraine
I have vestibular migraine, and this has impacted my vestibular system more broadly. My symptoms are worse when I have a migraine, but are there most of the time even when I do not. For several years I had these vestibular symptoms without an actual headache, which is probably why it took me so long to be diagnosed. Despite not knowing what the problem actually was, I was given 'dizzy pills', as my primary care doctor called them, to help stop the symptoms, which probably made the situation worse in the long-run. It was suggested that perhaps I was anxious, and that was causing the dizziness.
Most doctors think headache when they think migraine. But as my headache / migraine specialists have told me, this isn’t always the case. It is perfectly possible to have a migraine without a headache, and it is sometimes known as a 'silent migraine'. Children often get migraines that give them stomach ache, for example.
I was diagnosed with vestibular migraine by a specialist neuro-otologist at a London hospital. As there isn't a test that can 'prove' vestibular migraine, I underwent a series of tests to rule out other vestibular issues such as BPPV, vestibular neuritis and Menieres disease. These involved looking at screens with moving images (ENG test), balance simulations, rotation tests, hearing tests and an MRI. The results of these tests showed that I did not meet the criteria for these other vestibular disorders, and alongside clinical assessment of my symptoms, my doctor diagnosed me with vestibular migraine.
How vestibular migraine affects me day to day
Over time my vestibular symptoms have got better, although I am far from ‘cured’ (not a possibility with a genetic neurological disorder, as I have it). A few years ago there were times when walking to the end of the road and back was too difficult at times. The ground tilting under my feet, my body feeling as though it was lurching forward and back and dizziness in my head was too much. I got, and still sometimes get, a feeling that I am walking on a bouncy castle or bouncy cotton wool.
Anything that causes my body to move is problematic. I used to have difficulty going on trains, and still have to face forward in the direction we are travelling rather than backwards. I once had to go on a train to a hospital appointment whilst having a vertigo attack. It was truly horrible and I was having to stifle tears for the whole journey. Luckily it was only half an hour, but it felt like much longer at the time. Buses are ok(ish) now, but I still prefer to walk if possible. I haven't tried riding a bike. But I know that swimming is a definite trigger, and I suffer for days afterwards every time I try. I've pretty much given up on that form of exercise now.
A sudden movement in my peripheral vision can unsettle my vestibular system and cause dizziness. So a fast car zooming past is not great, or a child running unexpectedly, that sort of thing. I can’t bear to look at anything too stripy or things like railings or blinds. Even someone wearing a really stripy top can make my head spin at times. Other strange things include having to adjust to new shoes. Yes, really. Especially trainers that have a bit of 'bounce' to them. The movement of my body being different upsets my vestibular system and can make me feel dizzy and a bit a sick. So shoes get 'worn in' a little bit at a time.
To help my vestibular migraine symptoms I have certain treatments or make adjustments to my activities, and over time these have been very helpful:
First up is Botox to help deal with the migraine attacks. This has helped enormously, although I still have daily headache, and some rounds of it are more successful than others. I was very nervous when Botox was first suggested, and thought it was dangerous or that I would be left with an expressionless face.
Actually, as Dr Blumenfeld at the Migraine World Summit this year spoke on, Botox is a really safe and effective treatment for migraine. Studies show a good rate of improvement with this form of treatment. My post on Botox describes what to expect if you are thinking about having this treatment and some tips for after the treatment - it's really not that bad!
Vestibular physiotherapy / vestibular rehabilitation therapy
I have been seeing my physio for about 4 years now. Unfortunately, she says that vestibular migraine is one of the more difficult vestibular disorders to treat. It has felt like ‘one step forward, two steps back’ at times. But it has helped a great deal with my balance and general dizziness and feeling 'off-balance' or 'swimmy', and I can do exercises that she prescribes better than I used to.
The therapy consists of head movements, balance movements and similar exercises. It is a commitment, but worth it in the long-run!
I take several supplements that are proven to help with migraine, both 'head pain' migraine and vestibular migraine. These have been really helpful, and I prefer to take these, alongside the Botox, rather than other preventative medications.
The main supplements that have research and clinical trials backing their efficacy for migraine (see The Migraine Trust for more details) are magnesium, vitamin B2 (riboflavin) and CoQ10.
The brand I tend to prefer is Solgar, as it is good quality, and most supplements come in vegi caps as well:
Solgar chelated magnesium (UK link here)
Solgar CoQ10 (UK link here)
Solgar B2 (riboflavin) (UK link here)
Travel with vestibular migraine.
I have written a more detailed post on my travel tips with migraine and/or a vestibular disorder, so have a click on that if you would like more information. Amongst other things that may help, I would try and avoid peak-time travel if it is possible, sit facing the direction of travel and wearing Avulux migraine glasses or similar light-blocking glasses may be very helpful (use affiliate code 'Throughthefibrofog for $25USD off!).
Another great product for travel, and one that I have used for years, are nausea relief bands. These bands work by using acupressure and are helpful for dealing with motion sickness and nausea. Great for train travel, or when you are on a boat, coach or in the car.
My favourite are the Blisslets nausea relief bands as they are very cute! Use the code fibrofog for 15% off!
As I said above, it is difficult to describe the reality of living with a vestibular disorder. Simply saying ‘problems with balance and dizziness’ doesn’t really capture it. I am constantly assessing whether certain movements will spark a vestibular episode, and those episodes can last for weeks. For example, I have tried to go swimming many times. Each time though, I get vastly increased symptoms for three or four days. It is trial and error trying new activities to see if my head will tolerate them. Anything new is approached with caution.
See the VEDA website (Vestibular Disorders Association) for more details and information.
I hope that helped you understand a vestibular migraine if you have recently been diagnosed, or know someone who suffers with the condition.
Axon Optics for vestibular migraine
Review of Avulux migraine glasses
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Please follow the advice of your doctor as to all medical treatments, supplements, and dietary choices, as set out in my disclaimer. I am not a medical professional, and this is simply my story and the resources that are helpful to me.
Thank you for sharing your story. I get migraines with aura and I don't always get the pain which can be scary as I get stroke like symptoms.
I love my sunglasses when I feel one coming in but never thought of the nausea bands. Great idea!
Migraine has so many different symptoms doesn't it, and so individual. The nausea relief bands are great! I like to use them in conjunction with lots of ginger tea when the nausea hits.
Thank you for this!! I know someone who deals with this and hasn't been diagnosed. Passing it along. xo
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Thank you for your kind comment. I hope your friend finds some help with his/ her symptoms. Personally, specialist vestibular physiotherapy has been one of the most beneficial things for me. I would recommend making sure that they get a personalised assessment and programme and not a 'one-size-fits-all' exercise sheet as I understand that can actually be more harmful than beneficial. I have had to go privately for this, but it has been worth it. Hope that helps!