Ciara O'Rourke hadn't heard of vestibular migraine when her attacks suddenly brought on bouts of vertigo and dizziness. Here's what she's learned about the condition.

My migraine symptoms have certainly changed over the years.

In my 20s, my migraines were mostly episodic, happening during the days leading up to my period. But, as I got older and had children, my migraines changed - and not for the better. 

Episodic attacks suddenly became more severe and lasted longer, and they had a much bigger impact on my life.

Along with changing migraine symptoms, I also began experiencing chronic daily headaches. Chronic headaches are when you have more headache days than non-headache days per month. In my case, I can have up to 25 headache days out of 31. This became the norm - something I had to learn to live with and accept. 

I connected with the right services and support to cope, including visiting migraine specialists suggested by my doctor. I worked hard not to let chronic migraine get me or keep me down. I was “doing everything right,” you might say. 

After 20 years, I really wasn't expecting any more changes to my migraine symptoms. But, of course, that's exactly what happened. 

Vertigo became a new migraine symptom

The new symptoms started about a year ago. I was in the canteen, having lunch with my colleagues. Then, all of a sudden, the room began to spin. 

I thought I was going to fall off my chair. I gripped the table to stop myself from slipping and forced my mouth to work to ask my colleagues for help.

I was so scared; I had no idea what was going on. My head felt like it was going in circles, and the room wouldn't stay still.

Two co-workers picked me up, one on each side, and walked me to my office. My balance was non-existent, and I kept falling to one side. They gently put me in my darkened office (as photophobia is one of my migraine triggers). I sat there for around 40 minutes until my husband called to say he was outside to pick me up. 

My co-workers helped me to the car, and my husband drove me home. I went straight to bed. 

Diagnosed with vestibular migraine

The next day, I couldn't shake the feeling that this new dizziness was directly related to chronic migraine.

I called my migraine nurse and asked her if she could explain these new symptoms. The only way I knew to describe it was extreme dizziness, and that my head felt like it wouldn't stop spinning. 

My nurse was kind and patient, explaining that I'd had an attack of vertigo. She told me that migraine symptoms can change over time - and vestibular migraine can sometimes develop in more chronic migraine sufferers.

I found out that the main symptom of vestibular migraine was vertigo and that attacks can occur without the usual headache. I was relieved to have a name for it, and many of the symptoms made sense - as I'd had them in the canteen only the day before. 

• Dizziness, like I was losing my balance
• Feelings of "motion sickness" when I moved my head 
• Lightheadedness 
• Nausea

“In the meantime,” my nurse said to me, “please keep a journal of your migraine attacks.”

I did this over the next few months, and honestly, I didn't see any rhyme or reasons for the attacks.

They happened at any time of the day, whether I was at work or relaxing at home. I checked to see if it was related to my menstrual cycle, but that didn't appear to be the vestibular migraines’ trigger either. 

I went back to the migraine nurse, and we discussed my diary. These vestibular migraine attacks happened two to three times a month, with vertigo lasting about 5 to 10 minutes at a time. 

However, I still had to deal with the after-effects after the vertigo had cleared. My head felt hazy, like I had brain fog, and I struggled with lightheadedness and fatigue. I also had some residual dizziness, though nothing like what I had to cope with in those first 5 or 10 minutes. 

These after-effects combined meant I felt uncoordinated and dizzy after an attack. I also found it difficult to concentrate, which meant the migraine attacks affected my work. 

Trying new treatments

I discussed this with my nurse, who referred me to a physiotherapist specializing in vestibular conditions. 

She told me the physiotherapist usually worked with Eyes, Nose, and Throat (ENT) patients. Still, they'd had good results with migraine patients, and it was worth joining the waiting list. 

I eagerly agreed, and I'm now waiting for treatment. In the meantime, I've been researching this specialized physiotherapy. I can see how much it can ease symptoms in fellow vestibular migraine patients, and I can't wait to start getting better. I’ll let you know how it goes!

Support for dealing with vestibular migraine and new symptoms

I've realized that I'll always be learning about my condition.

When I was first diagnosed with chronic migraine more than 20 years ago, I was so naïve about all the hurdles I'd have to jump over. I was also painfully unaware of how much the consequences would affect my daily life. 

After a while, it's easy to get used to these symptoms, as painful and debilitating as they can be. They become a part of your "normal,” and you don't expect another curveball to come winging around the corner. 

That said, I also have friends with migraine symptoms very different from mine, and they have entirely different coping strategies. I suppose I didn't want to believe that my symptoms could, and would, change again.

So, when the dizziness hit me, I was scared - I thought it could be another disorder, something more sinister than migraine. When I rang my nurse, I was grateful for how quickly I could get advice and support. I was worried that she wouldn't know or that it would take weeks with lots of tests and no answers.

But, of course, these specialists and nurses are called experts for a reason! The advice, reassurance, and diagnosis helped me to understand the changing nature of my condition. I'm also fortunate to get a referral for a physiotherapist, even if I'm still on the waiting list. 

It's a long, hard trudge sometimes, but knowing the support and help I need is out there makes everything a little easier. The wait will be worth it if it means changing my future.

The information presented is solely for educational purposes, not as specific advice for the evaluation, management, or treatment of any condition.

The individual(s) who have written and created the content and whose images appear in this article have been paid by Teva Pharmaceuticals for their contributions. This content represents the opinions of the contributor and does not necessarily reflect those of Teva Pharmaceuticals. Similarly, Teva Pharmaceuticals does not review, control, influence, or endorse any content related to the contributor's websites or social media networks. This content is intended for informational and educational purposes and should not be considered medical advice or recommendations. Consult a qualified medical professional for diagnosis and before beginning or changing any treatment regimen.

NPS-ALL-NP-00487 NOVEMBER 2023