As a proud ambassador for VeDA - the Vestibular Disorders Association I am very happy to support their Steps-2-Balance campaign this year from 17-23 May. Steps 2 Balance works as a challenge that you set yourself, and mine this year is to work on my exercise and vestibular migraine symptoms.
Being home makes exercise a little trickier this year, but I am so thankful to have a pedal exerciser that I bought years ago on the advice of a physiotherapist. So my challenge is to pedal for an hour! Given that when I first started I was doing 3 minutes, and haven't ever done an hour before, it's definitely a challenge for me . . . See below for how I got on!
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My vestibular migraine symptoms
Living with vestibular migraine (VM) is challenging for so many reasons, but the misconception over what it actually is can be really hard to manage. Most times that I say I have vestibular migraine, the person only hears 'migraine' and immediately thinks pain. It's understandable in a way as there is so little awareness of what VM is, including amongst some doctors . . . Thankfully VeDA is helping raise awareness for us!
My earliest experience of VM didn't involve pain at all. A sort of dull 'head full of cotton wool' feeling, but not actual pain. Like many I went from doctor to doctor, with no success. And also like many, I was told it was probably anxiety as, I was told, 'many women experience that'. Thankfully, I finally found a brilliant neuro-otologist who took a detailed history, ran the appropriate tests and diagnosed me.
So what are the symptoms of VM if it isn't pain? It varies from person to person, but for me it is dizziness, vertigo attacks (spinning sensation), motion intolerance and balance issues. I can feel as though I am walking on a bouncy castle, knock against tables because my balance is off, and it was years before I could travel with vestibular migraine without causing a big increase in symptoms. I am very fortunate that my symptoms have decreased over the years with correct management.
For more information on the symptoms of vestibular migraine have a look at the VEDA page on VM.
Exercise and vestibular migraine
When I was at my worst with my symptoms I sat on the couch and watched endless cooking shows on YouTube. I was at a loss as to what to do, and if you had suggested that I could exercise with vestibular migraine I probably would have glared at you and then promptly burst into tears.
Exercise and vestibular migraine needs time, patience and, in my opinion, some professional advice. While research shows that regular moderate exercise can be beneficial for reducing the severity and frequency of migraine attacks, it can take some time for the migraine brain to be happy with change and you may need to do some 'prep' so that it doesn't trigger a migraine. VM may need a little extra care when it comes to exercise due to the movement aspect.
I definitely wasn't confident to go it alone with exercise, and followed the advice of my vestibular rehabilitation therapist. We took it slow. Slower than the speed of a snail slow. Head movements were a big issue for me, so we began with using a pedal exerciser so only my legs were moving. Even then, I would get a feeling as though I was on a boat with my chair going up and down. It still happens when I'm flaring to this day. Over time though I built up to gentle yoga, walking and then finally running.
Now we are at home, and I am in shielding measures so can't leave the house, I am back to using my pedal exerciser. I really do think that regular movement helps me out so much.
6 things that helped me manage vestibular migraine
1. Seeing the right doctor
As I've already mentioned, I saw quite a few doctors before finding a specialist in vestibular migraine. Before that, there was a doctor who diagnosed me with no tests, handed me a generic sheet of really hard head movements and then discharged me - on my first and only appointment!! There was also the private doctor I paid a lot of money to who said my dizziness was a good thing 'because it was a sign that my brain was healing'. Can you tell I'm a little bitter about that still?!
A good doctor can be hard to come by, and I had to do a lot of research before finding the right person. Initially I saw my doctor privately (I'm in the UK), which was eye-wateringly expensive. Then I shifted to her care under the NHS. It made a world of difference to be given specialist treatment, with appropriate medication and advice on supplements, exercise and VRT.
2. Vestibular rehabilitation therapy (VRT) / vestibular physiotherapy
For some people living with vestibular migraine, VRT can be really helpful and definitely has been for me. My biggest advice is to see a therapist who is a specialist in VRT and has a lot of experience. I learnt the hard way, and my symptoms flared tremendously after a disastrous experience with a therapist that, well, let's say wasn't the best.
VRT should be catered to you as an individual, and your particular health issues, abilities and symptoms. Exercises such as gaze stability, head movements and those to improve proprioception and balance may form part of your treatment.
3. Supplements
There are a number of supplements that have benefit for migraine, and The Migraine Trust has a great page setting out supplements and the research behind them. The key ones that they discuss and that were also recommended by my doctors are:
*the Migraine Trust doesn't name brands, these are the ones that I take.
4. Exercise
Exercise and vestibular migraine can be a bit challenging. Starting slow and being consistent is key, and regular moderate exercise has been so helpful for me both in terms of symptoms but also for my mental health.
Personally I would recommend seeking professional advice before you begin to exercise with vestibular migraine. It may be that your doctor or physiotherapist suggests medication to calm the symptoms before you begin to exercise, or that certain forms of activity are better for you than others.
5. Nausea relief bands
I have used nausea relief bands since I was a child, and have always been susceptible to motion sickness. Me and boats are not friends! With vestibular migraine, travel bands can be really helpful too.
The Blisslets nausea relief bracelets are my new go-to. They are pretty and stylish and don't look 'medical' at all. They just look like part of your outfit, which makes me feel far more confident wearing them.
Blisslets have kindly given me an affiliate link for 15% off with the code fibrofog
6. Mindset
Vestibular migraine is hard. Really hard. It can feel overwhelming and frightening, and I felt really hopeless for a long time. I panicked when I had to walk to the shops, go on a train or, ironically, when I had to sit in a busy waiting room for my appointments with my neuro-otologist.
A positive mindset, alongside other measures, can be so helpful though. I know that is easy to say, and when you are in the midst of a vertigo attack it's really hard to feel that way. CBT therapy can be a great way to help manage your thoughts and emotions, as can finding activities that you enjoy but are manageable with your symptoms.
My VeDA challenge results
Well I made it for the full hour!
I was so nervous about doing this challenge! I even posted a long ramble on my Instagram stories about how scared I was, and I barely ever talk on stories. I prepared well, with a big glass of water, YouTube to watch and for some reason I thought wearing lip balm would help - not sure why . . .
My pedal session was fine for the first 40 minutes or so. I'm used to doing about 30 minutes, so it wasn't too hard. But then I started to get the motion of being on a boat. I'm guessing my migraine brain wasn't too happy about the length of time I was pedalling for. It wasn't too bad though and I definitely felt as though I could carry on.
I loved doing this challenge. I think pushing ourselves a little bit, when safe to do so, can help us out of our comfort zone. I know I can stick to 'safe' activities that I know won't flare symptoms. That's fine, but it could also be the case that I can also do new things now that my vestibular migraine is more under control.
So thank you VeDA for the Steps 2 Balance challenge! I hope that it helped raise some awareness for vestibular disorders and I look forward to the next challenge!
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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 post, as well as all other posts on this blog, are for informational purposes only.
Carrie Kellenberger says
Claire,
I really learned a lot with this post. The first thing I wanted to mention is YES to the supplements you listed. I rely heavily on magnesium in the bath since it's too hard on my stomach. B2 and COQ10 have been mainstays for me for years. I also wanted to say that I have no idea where to start with migraines. My rheumy knows about them. He's convinced they're from fibro. They are extremely disabling so I think after reading your post I can rule out Vestibular Migraine. I do get the other symptoms, but the pain is so bad it's like someone has spiked me through the eye. Thank you so much for this info. I also wanted to say that I'm so impressed you went from 3 minutes to an hour! WOW! Well done! I'm also following VEDA now on FB. 🙂
Keep up the great work! Yes, I PINNED THE POST. Loved that reminder.
throughthefibrofog says
Hi Carrie! So happy the post was helpful and thank you about the pedals challenge I did!
It is possible to have both 'classic' migraine and vestibular migraine, so it may be worth being assessed by a specialist neurologist when you are able to. There are other causes of migraine too so it may be helpful to rule those out. Mine come in part from dysautonomia as well as fibro. Wishing you all the best with it going forward 🙂
Shruti Chopra says
I love your selfies with the pedal exerciser! And I think I'm going to get myself one of them. I don't think I get out enough and these covid times have made that worse, although I do take time to walk at home - but even then, this could help on days when I can't do that either.
The rest of your tips were so helpful, especially supplements and mindset - I feel both are such an essential aspect to help our wellbeing.
throughthefibrofog says
haha! Trying to do that selfie was hard, and you know I'm hypermobile and can bend all over the place! I love my pedals, and often read blog posts (including yours!) when I'm pedalling. Good for these times in particular, as you say.
Sheryl says
Thanks for all these great tips and insights. Now I really want a pedal exerciser at home too! 😉
throughthefibrofog says
I find it so helpful, especially at the moment not being able to go out for a walk. So glad I don't get rid of it years ago! 🙂
Kate - Gluten Free Alchemist says
This is such an interesting post. I suffered from hormonally linked visual migraines for years and they more or less stopped when I hit the menopause. But a couple of years back I became suddenly very dizzy at a really stressful time. Was diagnosed with ‘Labyrinthitis’ (no tests). Since then, I have intermittent periods of dizziness.
Randomly I tried taking a magnesium supplement and found that it helped.
With less exercise during the lockdown, the dizziness has become more frequent.
Now I’m wondering if it’s a migraine e shift!!
Thanks x
throughthefibrofog says
Hi Kate, sorry that the dizziness has come back since lockdown and less exercise. I wonder if you may find being assessed for vestibular migraine to be helpful once it is possible to have doctor's appointments again? It would have been better for you to have tests to determine the cause of the dizziness. While there isn't a test for vestibular migraine, it's usually important to rule out other vestibular disorders. Hope that things improve for you xx
Emma says
This is such an insightful post and it is great to learn more about the exercise challenge. I bet it is very rewarding 🙂
throughthefibrofog says
Thank you Emma! It was definitely fun to take on a challenge, and it came at the right time to do so with my symptoms 🙂
Candace says
I suffer from classic migraines and totally understand how things ike this really do have a huge affect upon your life. Glad that you fund the right Dr for you as I've experienced this too and its so reassuring when you've found the one who totally understands how you feel and then does all they can to help.
throughthefibrofog says
I totally agree! I saw a few doctors that weren't the best, shall we say. It's really gamechanging when you find the right doctor for you and one that takes all your needs into consideration.
Carrie-Ann Lightley says
Well done! Lockdown has helped me to discover some new exercise routines which I'd previously thought was impossible as I use a wheelchair. It feels really empowering, doesn't it?
throughthefibrofog says
Thank you!! That's really great about finding new forms of exercise. Totally agree about it being empowering, I definitely think it's good for my mental health too 🙂