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Home » Chronic illness

Living with a Vestibular Disorder: My Experience of Vestibular Migraine

Published: Jun 15, 2018 · Modified: Aug 28, 2022 by Claire · This post may contain affiliate links. As an Amazon associate I earn from qualifying purchases · 6 Comments

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.

woman standing on a beach.
Jump to:
  • Living in an unbalanced world
  • My diagnosis of vestibular migraine
  • How vestibular migraine affects me day to day
  • Treatments
  • Botox
  • Vestibular physiotherapy / vestibular rehabilitation therapy
  • Supplements
  • Travel with vestibular migraine
  • Life with a vestibular disorder
  • Related posts
  • 💬 Comments

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'.

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. Have a look at VEDAs overview of tests for vestibular disorders for more information.

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.

long pin depicting beach huts at the seaside with text, living with a vestibular disorder, patient experience of diagnosis and treatments, through the fibro fog dot com.

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.

beach huts against the sea.

Treatments

To help my vestibular migraine symptoms I have certain treatments or make adjustments to my activities, and over time these have been very helpful:

Botox

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. Research on Botox for chronic migraine have shown a good rate of improvement with this form of treatment. My post on what to expect at a Botox appointment 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!

Supplements

I take several supplements 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's overview of supplements 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

Solgar CoQ10

Solgar B2 (riboflavin)

Travel with vestibular migraine

There are a few ways that certain products can be helpful when living with a vestibular disorder. 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. My favourite are the Blisslets nausea relief bands as they are very cute! Use the code fibrofog for 15% off!

Life with a vestibular disorder

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.

Related posts

Axon Optics for vestibular migraine

Review of Avulux migraine glasses

Come join me on Instagram and Twitter for more posts on living with a vestibular disorder and chronic illness!

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.

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Comments

  1. Kt Haynes says

    June 14, 2023 at 12:19 pm

    Thank you so much for this.
    My 14 year old daughter was diagnosed with chronic vestibular migraine last year after a long journey. Are started on a medicine plan which has been making it vaguely tolerable, at a 5 out of 10 level but this last week it's been awful again, off school, sickness, dizzy, pain, hurts if at moves her eyes etc etc. It's so heart breaking to see, and she's just laying there, exhausted by it. I feel so powerless to help, and like I constantly have to fight for her to be understood even with medical professionals. So thank you for being so honest because you describe her experience.

    Reply
    • Claire says

      June 14, 2023 at 5:40 pm

      I'm sorry to hear that you daughter is having such a tough time, but it's lovely that you are giving her so much support. If you haven't already, then you may like to think about vestibular rehabilitation therapy for her. It helped me a great deal alongside medication (but took a while to find one that worked). It's tough at this time of year as well I think because of the warm weather and hayfever etc so that may be why she is flaring at the moment. Take care, Claire

      Reply
  2. Sarah says

    March 03, 2022 at 9:28 am

    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!

    Reply
    • Claire says

      March 03, 2022 at 12:48 pm

      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.

      Reply
  3. Michelle says

    June 19, 2018 at 2:59 pm

    Thank you for this!! I know someone who deals with this and hasn't been diagnosed. Passing it along. xo

    Reply
    • [email protected] says

      June 19, 2018 at 3:54 pm

      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!

      Reply

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