Our members share there own real life story, the challenges, symptoms and their journey with a balance disorder.
My vestibular neuronitis (VN) story.
My first attack of VN struck me in January 2019, aged 35, and before this I had never heard of the condition or suffered any sort of dizziness. Up to this incident, I had been working on getting a promotion so had been pushing myself hard at work, at the same time struggling to get enough sleep with 2 children under 5, as well as suffering with anxiety and generally not looking after my health.
On the day of the attack, I had been suffering with a bad cold for a few days but decided to push myself to get a one hour train journey to London for an important work meeting. I felt dreadful but only with cold symptoms so put on a brave face, took some paracetamol and went with it. Not long after boarding the train, I began to feel a little dizzy. I put this down to the old train carriage and the fact I’d been up all night with my cold. Soon after that I began to feel sick. At this point I suspected I perhaps had the flu and decided to depart the train at the next stop and head home. However, the sickness took hold, as did the dizziness, and I began to panic as I had never felt this way before. The 10 minutes to the next station seemed like an eternity, and when I got there I was so confused and unsure what to do as I could barely stand. I could feel people looking at me as I must’ve appeared drunk, but no one helped me. When everyone had left, I took a moment to sit and call my husband, miles from home I had no idea what to do as I was unable to get back on a train. Eventually I asked a kind stranger for help, but by this time I was in a bad way and became unable to stand and very sick. An ambulance was called, and I was taken to the local hospital where they said I had suffered an attack of vertigo, and probably had VN.
I only took a week off work, as I was stubborn about resting and I just wanted to return to normal and get back to work. I found out I had secured a promotion in the week whilst I was off, and I desperately didn’t want them to think I was unable to do the job.
When I returned to work, it was hard. Everything was harder. I couldn’t put my finger on what was wrong with me, but my head just didn’t feel “right”. My anxiety levels soared and getting on trains was stressful to start with. My sleep deprivation got worse with the anxiety and I didn’t feel I was doing well at my new job no matter what anyone said, it just felt so difficult.
In July 2019 I had another attack of vertigo. This time I didn’t have a cold, I was used to feeling permanently run down by now so was unable to feel when I needed to rest. I was in a work meeting with about 10 other people when I started to feel the vertigo come on gradually. I knew exactly what was happening and was able to leave the meeting and find a room to lay down and rest. Unfortunately, the vertigo did take hold again and I became sick, so an ambulance was called.
This time, I took 2 months off work. The panic and distress following the second episode was extreme. As the weeks went by and I continued to feel unwell, I panicked that I would never be able to get on a train, never be able to sit in a meeting, therefore I’d never be able to work…. how would I pay my mortgage…. how would I care for and support my children….. the anxiety and panic consumed me. It was then that I hit rock bottom and decided to ask for help from my GP. I started taking medication for the anxiety and my employer set me up with CBT sessions. It was a relief to have opened up and get some help and gradually my anxiety subsided, as did my symptoms of VN.
I returned to work on a phased programme which my employer was extremely accommodating about and meant I could phase returning to full time work over a 2 month period. I kept my manager updated weekly whilst I was off work, and I never accepted a sick note for longer than 2 weeks from my doctor, as I always wanted to review my condition regularly and didn’t want to accept that I’d be out of action for a prolonged period.
It’s not been easy going back to work, and even doing some social activities. I struggle with going to music concerts as the extreme noise and light can affect me. I get extremely tired very easily, and sometimes I just have to rest otherwise I get uncomfortable fuzzy feelings in my head. I would say overall, my body is working at a slower and simpler pace than it was before. I’ve had to adjust my working week to enable me to start work later/finish earlier and commute on less days.
I am still awaiting seeing the ENT specialists, but I feel that I am managing my symptoms well at the moment. I am nervous of the condition flaring up again, but I have taken practical steps to improve my health through diet, quitting smoking, increasing exercise and lowering my caffeine intake, as well as reducing social activities and amending my working week. Having never heard of VN until it struck me, I felt isolated at first as my immediate friends and family didn’t understand the condition. I found reaching out to online groups or support groups reassuring, and an eye opener that you’re not alone.
Thank you to all of our members who have bravely shared their life stories with us. We hope these stories help fellow sufferers feel less alone, and for the general public – provide valuable insight into the severity and life restricting nature of balance disorders.
Thank you to our Balance Warriors!
Please share your own story with us, so we can reach and help even more people. All are welcome to join, whatever your balance condition and where ever you live.
Please come and join us if you feel we can help and your don’t wish to face your challenges alone.