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Navigating Life with Vestibular Migraine: My Personal Journey

Just a little reminder before you start reading. I’m assuming you are here because you are also suffering from a Vestibular Disorder. Screens can be triggering so please remember to give yourself regular breaks.

Navigating Life with Vestibular Migraine

My Vestibular Migraine Story.

Year 2016 – I was very excited to be going on a trip to Melbourne with my partner(now fiancé). We arrived at Melbourne airport. Flight was fine and headed straight to our accomodation. We checked in, got our keys and went to the lift. Our room was very high and this lift felt faster than normal. On the way up my left ear gave a huge pop to the point it even hurt a bit and I said “ouch!” to my partner gesturing to my ear. We stepped out of the lift and started walking to our room. I started to get this feeling almost like the building was moving a tiny bit. I asked my partner if he felt the same? Nope. ‘Weird’ I thought. ‘Must just be because we are so high up’.

Over the course of the next few days symptoms began to get even worse. The floor started to feel like it was dropping underneath me, I felt off balance, when I looked at the ground it would tilt left, then tilt right, I felt nauseous, I had a headache, pictures on the wall looked like they were moving and yes the apartment building we were staying in still felt like it was moving too. I took some deep breaths and tried not to panic. ‘It’s just some weird thing that will pass’ I thought. ‘ I don’t want this to ruin our time away’.

When I was a child I would occasionally wake up with vertigo but it only ever lasted an hour or so and would go. So each day I was waiting to feel better. That never came. We were in Melbourne for 3 days and by the time we made it to the airport to come home I was starting to feel incredibly anxious. I still had all these horrible symptoms and I was started to think something was very wrong. I was scared to walk to the airport toilet by myself as I felt I could just pass out any second.

We made it home and I tried to rest for a few days. Still no change and now the floor felt like marshmallow or like I was walking on a trampoline. Panic set in and I ended up in emergency that night. They checked everything out and all was ok, told me to go see my Gp. My Gp initially diagnosed me with vestibular neuritis. Explained that my balance nerve connecting my ear to my brain was inflamed and with time would heal and symptoms would go away. So I waited and rested and waited and rested. No change. Symptoms were all as above 10\10 along with a feeling of head pressure and blocked ears.

It was around this time I was meant to be starting a new job. Looking back I have no idea how I even turned up to my first day. On the outside I probably looked normal to those who didn’t know me well, but on the inside I was a ball of anxiety. Something I would learn later on that it is very difficult to avoid developing anxiety when navigating a vestibular illness. Trying to complete my first day on the new job when the world around me felt like it was tilting left and right (I never had spinning vertigo but more like a feeling of constantly being on a boat) every second I was convinced I was just going to pass out. Trying to focus on people talking to me was extremely difficult.

Weeks went by and still no improvement. Back to the doctor I went who confirmed if it was vestibular neuritis it should have cleared up by now but explained sometimes it takes longer for some people. More weeks went by and I spiraled further and further into this illness along with anxiety and depression by this stage.

I was convinced the doctors were missing something. That something was very wrong.

How could I be experiencing a feeling like I was constantly on a boat, a constant sensation of rocking, the floor looked like it was warping, the ground felt soft and squishy beneath my feet, laying down made the rocking feeling worse, I developed night time panic attacks, I couldn’t read or look at screens…the words would bounce and blur on the page, I had nystagmus (eyes) I was exhausted my body and brain trying to rebalance itself, I had sore leg muscles as my body tried to overcompensate to keep me upright, my ears were blocked, constant head pressure, a foggy feeling, like nothing was clear and I was living in a dream state. It was terrifying, and yet from the outside apart from looking a little tired I appeared completely fine.

I went back to my doctor and she sent me for an MRI (something I would encourage everyone suffering from this illness to request from your Gp) – all clear thank goodness but was still left with confusion as to what was causing this. At this point my doctor didn’t really know what else to do to help me so I began my own research. I requested to see a vestibular specialist and have testing, I went to see two different neurologists for their opinions, I went to a vestibular physiotherapist. I had different diagnosis form the neurologists including vestibular neuritis, vestibular migraine and mal de debarqument.I was at the lowest of all lows, a shell of who I was before.

Now I knew I had a vestibular illness but no one was telling me how I could fix it. I was waiting for that one doctor or specialist who could give me the magic pill and fix everything!

It took a long time of suffering, about 6 months with 24/7 symptoms before I realised no one was coming to save me and recovery was up to me. I would say it has now taken me 6 years to “fully recover”.

I could continue to write and write and write in this one post but I am going to break the information up into smaller bite size pieces and blog posts so it is easier to take in. I will also include a series of post about navigating life with vestibular migraine.

If you are here reading this I know you are probably suffering right now. Please hold on,things are going to get better, much better! I promise.

Cm x


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