My Journey With Vestibular Migraines
Best tip I have learned along the way - Take a small medicine pack with you everywhere: Peppermint Oil, Lavender Oil, Nausea tablets, Nausea bands, Antihistamines, Valium, Aspirin/Nurofen, and Magnesium.
It all started with dizziness from vertigo
It all began with vertigo. I remember being on one of my morning walks with my partner, stepping onto a bridge and having to catch myself as the whole floor fell from beneath me. I went to the doctor and was prescribed ‘Stemetil’ and sent on my way. Off I went, making jokes about being Lucille Two from Arrested Development.
I can’t remember how much time passed, but I visited that doctor a few more times as my symptoms developed and it got to the point where he would laugh at me when I walked in for being there again, he never helped me seek any sort of diagnosis (I don’t see that doctor anymore). Luckily, I happened to be at the hospital having an appointment with my gastro doctor when she was asking me about my stomach stuff and I burst into tears. I told her that I thought I had a brain tumor, that I didn’t know what was real and what wasn’t and that I thought that I was losing my mind because nothing looked or felt right anymore. By this point, I had started falling over a lot in public and had found myself stuck in supermarkets, or other bright places many times and occasionally unable to even leave a train once it reached my stop as I was certain it was still moving. I was so scared, I just sat there sobbing because for months, my dreams felt more real than my reality (which still happens all the time). She quickly wrote me a referral to the neurologist and I’m not sure who booked me in for an MRI (the worst things ever for people with vertigo btw) and CT Scan, but I got those too.
Whilst I was awaiting the results for these things I remember never really leaving my house, I was so scared all the time. My partner was touring a lot and I didn’t want to worry him either (I thought if I told people how I was feeling that they would think I was actually crazy). One day I was so terrified, I sat crying in my room wanting to crawl into my cupboard and hide because maybe if I curled up real small in a dark space I wouldn’t notice how wrong everything looked and felt, and how I didn’t even look like myself anymore.
My phone rang and it was my best friend who happens to be an audiologist and my hero and I finally explained to her what was happening – she said to me, “I need you to have some Magnesium, 2 x Nurofen and a good amount of water and call me back in 45 minutes and tell me if you feel any better”. I did feel a bit of relief when she called back and she said, “I think you might have ‘Vestibular Migraines’, look it up and have a read”. It was the first time I’d heard the name. I started googling it and everything I read was what I had been going through.
Finally receiving a diagnosis
Then came my appointment with my neurologist who confirmed it, then came the drug trials.
Never have I felt so excited than to start a drug that I thought would help me feel some sort of normal again – but the worst I ever felt was when I was on Sandomigran. That drug made me so unwell. It was my anniversary with my partner and we were driving and I remember looking out of the window with tears streaming down my face because I honestly could no longer tell what was real, I had completely lost my mind. I felt like I had been trapped in the world's worst acid trip for so long and nausea was overwhelming me 24/7. The final straw for me was one night when my partner was on tour I got up to go to the bathroom, lost balance, and knocked myself unconscious on the bedside table. Not just the drugs fault, obviously, this still happens all the time. I have basically zero balance in the dark and now have a little night light I carry with me if I have to get up in the night. I also invested in an Apple Watch that would call an ambulance if I had a fall like that whilst alone ever again.
After the 3-month Sandomigran trial, I swapped to Topamax (the drug that has taken away my ability to register fizz so I constantly ask if drinks are flat haha), this drug isn’t for everyone but for me it was such a significant difference (especially to the hell I’d just been through). I’ve been on Topamax for maybe 18 months now – chopping and changing the dosages and recently having to throw something else in there too. I still experience symptoms nearly every day, from balance to memory loss, nausea, fatigue, Alice In Wonderland syndrome (my most hated), and many more, but they are manageable and I have some pretty good things in place now. I also started vestibular physio about one year ago which I can’t recommend more highly.
Staying active through light exercise and walking
As someone who before this loved to run, do yoga and many other things I now try to walk every day if I can, even if it means using my walking stick. I remember how hard it was for me to come to terms with having to buy a walking stick at the age of 28, I put it off for so long and when I finally went into the chemist to buy a fold-up one to keep in my bag, I asked the shop assistant if I could get it out to make sure the size was right – she looked me up and down and said, “It’s best you come back with the person who’s going to use it”. I cried and walked out. It took me a while longer of stumbling and holding onto walls in public to finally try again. Now I am so grateful for that stick, I’m becoming more comfortable using it and trying to push away the fear of worrying what someone might think if they see me using it one day but not the next. Who cares, that sparkly stick is a gosh darn savior of mine. I’m still learning every single day what works and what doesn’t for me. I have such an incredible partner who is very supportive and lots of great friends as well. I’ve just committed to trying to get a massage/myotherapy once every 2 weeks to help, I’m always willing to keep learning and trying new things for this. I got a pair of Axon Optics glasses that help immensely for having to enter any rooms with bright lights or even when I’m attending/playing gigs to help soften the lighting (obviously strobe lighting is a big no-no) and to help with being in a car at night.
The life of a musician with migraine
At the end of the day, I’m a 29-year-old musician who has to fly around, perform to crowds, and be in crowds with loud noises. But, I’m slowly learning how to do things that work for me – when I can say yes and when I have to say no, always trying to be kind to myself when I have to say no and to not be too hard on myself for what is now. Who knows what will happen, I’ve heard incredible stories about people entering remission with this, but for now I’ll take every day as it is and continue to take good care of myself. I also never want to use it as an excuse to hold myself back from doing things I really want to do. I can always rest and recover after. I’ve already come so far.
I’ve found the fear from this illness is quite often the most debilitating thing to live with, I’m so fearful of it ever being as bad as it was at the start, or fearful of having a big flare-up that I’ve found myself turning down opportunities, missing out on events and living in the dark and I absolutely refuse to live my life that way. Sure, there are days when I cannot move and I am absolutely bedridden and that is fine, but I have symptoms nearly every single day so I can’t live in fear of something bringing those symptoms on if it will also give me incredible life experience. I will always try to make sure I get the rest I need, the water, the foods, vitamins, care, exercise, etc. I’ll also make sure I can keep living my life and get great experiences and try to not be swallowed up in a sad reality of all the things I can’t do anymore. Even though I can’t be all the things I was before this diagnosis, I’ve learned many new things about myself and I still want to be able to be there for other people and not always be the one who needs help, and I’m definitely getting back to that place. There is so much I still can do and that is what I keep trying to remind myself when it all gets a bit too much. I hope if someone out there is reading this that is at the start of their journey that they get some assurance from this that it can get better because I sure as hell feel like I’ve come a long way from wanting to crawl and hide in my cupboard.
Tanya Batt - 29 - Musician (BATTS)
My Journey with Vestibular Migraines
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