by: Heilean Rosenstock-Armie
In the Summer of 2017 my world was flipped upside-down. I say flipped as that is exactly how spontaneous and violent it felt. I was sitting at my desk in work when all of a sudden I leaned forward and grabbed the edge of my desk to steady myself. I placed my head on the desk still grasping it tightly. I couldn’t look up or down. I felt as though I was at sea with no compass in a violent storm. I wasn’t sure if the room was spinning or I was spinning internally. Everything was out of sync. If anyone had said the word migraine at that point, it would not have resonated.
Diagnosis And Misdiagnosis
Regrettably, it took two years to get a diagnosis of vestibular migraine (VM) and PPPD (persistent postural-perceptual dizziness) from that day. Initially the doctor on call said it was vertigo – a vague diagnosis. To add insult to injury he said it was probably as a result of my age. I was only 41. He prescribed me Serc (betahistine) and Stemetil (prochlorperazine) and I sat on my sofa for three full months waiting for this ‘vertigo’ to lift. I was fully housebound at this stage, unsteady on my feet and constantly dizzy. Luckily the children were on summer holidays and old enough to understand.
After three months an ENT diagnosed me with vestibular neuritis from which my vestibular system and brain hadn’t yet compensated. I was relieved to have a name for my symptoms. He gave me no medication nor a follow up appointment and suggested I do vestibular rehabilitation therapy (VRT). I threw everything at my exercises doing VRT three times daily. Initially I felt some improvement but then it plateaued. Another six months went by and I still walked veering to the right, fell over easily and felt dizzy 24/7. I walked in my bare feet to feel the ground beneath me for balance and if I closed my eyes I had no sense of balance and would fall over…..to the sound of the giggling of my children.
From September, I walked my daughter to and from school each day and I believe that this helped me hugely as I had given up all other exercise. I rarely spoke to other parents at the school gate as my gaze would always fall…..I literally couldn’t make eye contact. This shy woman who swayed like a drunk as she walked and kept her head down seemed like a shadow of my former self.
When new symptoms of stuttering and slurred speech developed I was heartbroken. The children laughed at my stutter and how my brain fog made me forget the simplest of words. I often laughed too with them to make light of the situation but inside I was distraught. I had always been a strong communicator and during my career had given interviews on radio and TV and had given presentations in front of large crowds. Now I spoke quietly with a stutter. I felt I had lost my personality. I had already lost my job, financial stability, given up my social life and rarely saw friends. I was afraid to get on a plane and so travel had ended too. Thinking that the illness had now even taken my personality was the final straw.
Becoming An Advocate
When my appointment with a neurologist came around after a year-long waiting list he diagnosed ‘vertigo’ or BPPV. Here we were back at square one. I knew I did not have BPPV and it had been ruled out earlier. I was furious and decided then that I had to become my own advocate. I would have to fight to get well again. I came across Migraine Strong Facebook Group where I poured my heart out. I wrote that I had no diagnosis after two years despite constant dizziness. Alicia, Eileen, Jennifer and the gang were great support and then, in an example of when social media works best, a fellow Irish woman spotted my post and offered to send me a private message.
Clare and I shared our stories and she told me about a physiotherapist with expertise in VRT (Sheila Barrett) who had helped her. I was quite reluctant to travel all the way to Cork to see yet another expert and reluctant to spend more money on VRT but Clare offered to meet me at the train station, drive me to the appointment and back again to the station. Guardian Angels exist!
When I met Clare at Cork station she was wearing her migraine friendly tinted glasses and looked radiant. She told me she was back driving and swimming and had even gone to a concert recently (albeit wearing ear plugs). I was in awe. After taking a full medical history and doing various tests with infra-red goggles, watching me walk and watching my gaze closely I was diagnosed with VM and PPPV. My years of chronic sinus had most likely been chronic migraine I was told. My years of popping medication daily, far more than the recommended dosage had most likely caused rebound which nobody had ever explained to me. My sensitivity to sound and light, smells and foods now made sense. People had always said I was over sensitive….now I had an explanation. With the new diagnosis I started the Heal Your Headache (HYH) diet and did the exercises Sheila had given me. I finally managed to look up and down without feeling nauseous or falling over.
From the advice of the Migraine Strong treatment pie, I also take supplements such as Magnesium and Vitamins B and D. When nausea comes on I take ginger sweets. I also take Effexor, an anti-anxiety medication that has been proven to help with dizziness. I still walk daily. Recently on lockdown I realized just how important those walks are and how the dizziness creeps up again if I miss my daily walk.
I did a short mindfulness course. It felt great to get out of the house once a week alone. It allowed me to stop worrying so much about the illness. To pause and take a mindful moment. Creativity has also been a huge solace to me. To busy myself I started working on a project with my father creating art posters which capture those mindful moments we have in our every day. I taught myself to build a simple website as well as an Instagram account. This brought me great joy.
Reaching Out To Others
Clare and I started our own small WhatsApp group. It grew quickly to ten people, all of us Irish, all suffering from VM. Of course I have had a few supportive people in my life but it has also been a very lonely journey. Looking back I think a support group (Migraine Strong) and now also our little WhatsApp group is perhaps one of the things that helped most.
I was referred by my doctor to a speech therapist who diagnosed mild aphasia. Aphasia usually affects people after a stroke or brain tumour where they all but forget to speak. I was surprised to learn that it can affect people with VM. Her aim was to get me back to confidently giving a presentation again…that was the yardstick we used. I have seen a huge improvement in my speech and with that my confidence. I recently finished a crossword in the newspaper, something the brain fog in the past would never have allowed me to do.
During the pandemic lockdown, my daughter learned to cycle and kept pestering me to go cycling with her. Finally my husband persuaded me to join them both. We all cycled down to the sea and back home, a short 5km distance. When I got off the bike, I broke down crying in my husband’s arms. I cried and cried. It was the joy of the simplest thing….a small thing I thought I would never be able to do again. I was over the moon. I could see on his face that he was also rejoicing.
Some months ago I was referred to a neuro-psychologist and am due a virtual video appointment very soon. When I asked what exactly the session would entail I was told neuro-psychologists assist patients to accept that they have a chronic condition. Perhaps that will be the last piece of the jigsaw-the part I struggle with most. Acceptance that I must live with VM.
VM took away so much but I am grateful for the time I spend now with my children which in my previous hectic working life I never had. I am grateful that I found my creative streak again and that I learned the truism that indeed your health is your wealth. Moving forward, I hope to get back to work. That may entail working from home, perhaps even a career change. All I know is that I am no longer frightened. I have good days and I have bad days but I now manage VM, it does not control or define me.