Life with Vestibular Migraine (in the UK!): An Interview with Claire from Through the Fibro Fog

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Life with a vestibular disorder or migraine can be tough. This week I'm sharing interviews from fellow migraine warriors about their lives with chronic illness. #balanceawarenessweek2018 #vestibularmigraine #migrainerelief

I’m supporting Balance Awareness Week 2018 with a series of interviews from fellow vestibular disorder and vestibular migraine warriors in all different stages of healing. They’re sharing their tips and tricks, as well as what they’ve learned from living with this illness. This week is dedicated to raising awareness for these increasingly common disorders, which often go undiagnosed or misdiagnosed. We’ve raised almost $1800 for the Vestibular Disorder Association. Claire rounds this week out with a great perspective on her treatment plan in the UK. 

What’s your name and tell me a little bit about your history with Vestibular Migraine. How did it begin and how were you diagnosed? Are you a fan of your current doctor?

My name is Claire (or @throughthefibrofog on Instagram!) and the symptoms that I now know are caused by vestibular migraine can be traced back to 2011 when I was in hospital for a planned infusion of medication for a different condition. That treatment typically has the side-effects of dizziness, headache, nausea and feeling generally unwell. While these symptoms are supposed to stop once you are no longer receiving the infusion, mine didn’t and culminated in fainting in a slightly dramatic fashion on the train home. As time went on the dizziness continued and I also started feeling what I describe as ‘swimmy’ and light-headed. There were times when walking to the end of the road was too much. It felt as though I was walking on a bouncy castle, with the ground moving and shifting under my feet. Then I started to get full-blown spinning attacks, which I now know is vertigo. Most days it felt as though I was severely hungover, and standing on a boat on the stormiest sea. I would lie in bed with my head jammed between pillows to try and stop the movement but, of course, it didn’t make any difference.

Once it was clear that the symptoms weren’t just a side-effect of the infusion, but there was something else going on, I saw my GP (primary doctor on the NHS here in the UK) on multiple occasions over the course of about a year. At that point I didn’t have headaches so a connection to migraine wasn’t made. For many doctors migraine = headache, so it seems to take far longer for ‘silent’ migraines to be diagnosed. I was put on medication to prevent the dizziness for about six months (which I was later told would probably have impacted upon my ability to rehabilitate), and it was suggested that anxiety was the cause of my symptoms. I lasted two days on the anti-depressant I was prescribed, as it just made me feel far worse. I knew that anxiety wasn’t the underlying cause so I requested (in quite strong terms!) a referral to see an ENT doctor having done a lot of googling and suspecting that I had some sort of problem with my ears.

The ENT doctor diagnosed me with vestibular migraine, but simply gave me a photocopied sheet of physio exercises that were in a large pile on her desk and told me to avoid migraine triggers. I was discharged after two appointments. Not hugely helpful. I then took matters into my own hands and saw a neurologist on a private basis. He was initially helpful but then alarm bells started ringing when I said that I had started to experience headaches and his response was to say ‘well that’s a good thing, it’s a sign that your brain is healing’. Still can’t believe he uttered those words!

Finally, in 2013, I saw Professor Linda Luxon who is a specialist neuro-otologist and her input was invaluable. She ordered a series of tests including MRIs, vestibular function tests and hearing tests. After other conditions were ruled out, I was finally ‘properly’ diagnosed with vestibular migraine / migraine associated vertigo. As Professor Luxon retired from the NHS a few years ago I now see a neuro-otologist at the National Hospital for Neurology and Neurosurgery and am happy with the care that I receive.

Have you ever tried Vestibular Therapy? If so, did you see any results? What were the drawbacks?

Vestibular physiotherapy has been very beneficial for me, but also very frustrating at times. I have had this form of treatment for many years, and the receptionist at the clinic says I am one of their longest-standing patients! However, my physiotherapist has said that vestibular migraine is one of the more tricky conditions to treat with physiotherapy and tends to take a lot longer to rehabilitate than other vestibular disorders.

My physiotherapy sessions are tailored to my specific issues – there are no pre-photocopied sheets here! I mostly do head movement exercises and balance-orientated exercises. This can be anything from walking across the room negotiating objects on the floor to walking down the street turning my head every time I pass a lamppost! The exercises are intended to bring on a degree of dizziness to begin with, which can be a frustrating experience, but in the long-term I have had a good result from a combination of Botox injections for the chronic migraine and physiotherapy. My balance is much better than it used to be, I feel less ‘swimmy’ and the attacks of dizziness and spinning are greatly reduced. The main drawback is simply having to do the exercises everyday!

I also try to be as active as possible, and walk a lot, do a bit of yoga, resistance training and have recently taken up running again after a seven-year break from it. Running is something that I wouldn’t have thought possible a few years ago when walking was a significant challenge. It has been very helpful, both physically and mentally, to go back to this form of exercise and it feels like quite an achievement. I have my doctors and physiotherapist to thank for getting me to this point.

Are you on a particular diet to manage your migraines and have you noticed that it helps? What have been the biggest changes you’ve noticed, if any? If not, how long will you stick with it before trying something else?

The main dietary changes I made when diagnosed with migraine were to stop drinking coffee and other caffeinated products (so hard for the coffee-addict that I was!), virtually eliminate MSG and other processed foods and increase my water consumption. Saying that, I am not perfect and I do have a treat now and again. As I’m sure lots of people have found, eating out in a café or restaurant proves to be challenging at times, and that is probably where I slip up the most . . .

Due to my other medical conditions (POTS, MCAS and IBS) I follow both a low histamine and low fodmap diet. So I avoid a lot of the foods that are restricted as part of the ‘Heal your Headache’ diet such as aged cheese, alcohol and citrus fruit. While my symptoms fluctuate, and I have multiple medical conditions so the situation is a bit more complex, I do think that eating well has a positive impact on my headaches, vestibular symptoms and level of fatigue. I truly believe that our diets play a huge role in our health and wellbeing, and so try to eat fresh food that I have prepared myself the majority of the time.

What has been the biggest hurdle you’ve overcome so far in your path to healing and how did you do it?

I would say that the biggest hurdle is acceptance. Even today, I am still working on that to a degree. I had what many people would have termed ‘normal’ health and a ‘normal’ life (not that there is such a thing, of course) and it was very suddenly de-railed to this new different life full of challenges and struggles.

I don’t know what the answer is to gain full acceptance – I would think this is different for everyone. But for me, it has been important to realise that acceptance doesn’t mean ‘giving in’ or surrendering to the condition. It means that you have to understand the situation you find yourself in and then work hard to improve it as best you can. In some small way, being unwell had led me to be more grateful for small things, take up new hobbies such as my Instagram page and taking photos and meet inspiring people with the same issues as myself.

What do you hope for the future as far as your healing? Do you have a long term goal for managing your VM?

My hope for the future is to improve my health as much as possible and so be able to return to activities and hobbies that I used to have. Personally, I think that exercise is really important for managing my vestibular migraines. So one of my goals is to improve my running ability and take part in a charity 5km run next year. Who knows, maybe I’ll make it to a 10km run in the years to come!

If you could give any person who has been newly diagnosed with vestibular migraine advice, what would you say?

Persevere! Being unwell is really hard. It is easy to feel hopeless and as though your symptoms won’t ever improve. It is especially easy to feel hopeless if an initial treatment or lifestyle change doesn’t help. My advice is to keep positive (easier than said than done, I know) and be open to new treatments. I had to take about six different prophylactic migraine treatments before finding one that made a difference. When that one stopped helping as well as it had initially, I tried Botox, which has been a great move for me. Every one of us is different and will respond differently to treatments and lifestyle changes. So keep trying something new if you aren’t having too much success. It may take months or even years to see a significant change for the better, but that doesn’t mean it won’t happen.

Be your own advocate. Trying to negotiate the medical system and find the right doctor for you is tough. It is even more difficult when you feel really unwell. But try and be your own advocate as best you can, or ask a close friend or family member to do that on your behalf. There are amazing doctors out there who will organise everything that needs to be done, but there may be times when you have to request referrals, tests, second opinions or a particular medication, and ask a lot of questions. If something really seems ‘off’ to you (see my brain healing through headache story above!), then be proactive – even if that means transferring to a different doctor or other healthcare professional. Vestibular migraine doesn’t have the recognition that it requires, and that us as patients deserve. But the right doctor is out there – you may just have to look around to find them!

Being in touch with people that are dealing with similar symptoms and conditions can be very helpful. It is easy to feel isolated and alone with a chronic condition, or that friends or family don’t truly understand. My advice would be to reach out to other people – whether online through Instagram, Facebook or other social media or in person through support groups in your area. That type of support can be invaluable – I know I have learnt a lot about how to manage my conditions and built some lovely friendships.

Is there any one product, supplement, device, etc. that you couldn’t live without or that has been an integral part of your healing?

I can’t think of a particular product, but there has been one practice that has been an integral part of my healing: walking. There were times, as I mentioned, that walking to the end of the road was a huge challenge with vestibular migraine (and my other conditions). I started, on a good day, with five or ten minutes around the block and have progressed from there. Now I walk in the woods, the park or just in my neighbourhood to the shops. It has been really beneficial both physically as a way of treating the vestibular migraine, but also mentally as it is a time I can talk with a friend or family member or be by myself to just to think, or listen to music or a podcast (P.S. podcasts are amazing for days at home when reading or screens are a no-go! My favorites are Serial and The High Low). Engaging in as many activities as you can without tiring yourself out is really important as it makes you feel more like ‘you’ and not just a sick person.

Thank you so much Claire for sharing your journey with us! It was the perfect way to end this amazing week. Check out Claire’s website for more posts.

Alicia was diagnosed with Chronic Vestibular Migraine in 2016 and has been able to successfully manage her symptoms through medication, supplements, lifestyle changes, and the Heal Your Headache Diet by Dr. David Buchholz from Johns Hopkins. She's the owner of The Dizzy Cook.

2 comments

  1. Kady

    Great interview! I have fibro and vestibular migraine and found cutting out chocolate, gluten and sugar did the trick for me. Low sodium and drinking lots of water is important for me, too. I still find that my myofacial problems from fibro can bring on migraines occasionally so now I am focusing on that as I really want to start exercising again. I did go for a walk yesterday for the first time in a while and feel good about it. The fibro pain was worse after but today I don’t feel worse! Thanks for sharing!

    Reply

  2. Carolyne

    I have had dizzy and foggy head problems since 2003, I have see consultants twice in that time the last saying it’s perhaps a combination of vetibular and visual migraine. The only support was to be given exercise sheets, which didn’t help. I get light and sound sensitivity and some headaches but dizziness is the worst problem. In the last 4 years I have taken up table tennis which has helped, I think because you have to concentrate on the ball. I initially had some falls and I now know when to stop on bad days. I have also found that low air pressure can make symptoms worse. It does feel at s that the medical profession doesn’t take this seriously and I stopped seeing my doctor.

    Reply

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