Hello there everyone,
My story started around 8 year ago, just after giving birth to our first child. I was quite unwell at the time with pneumonia and started experiencing lots of visual disturbances - thinking things were moving on the ground when there was nothing there, inability to read as words jumping on the page, inability to watch fast moving TV programmes along with a general ‘woozy’ feeling in my head, tinnitus and like I was walking on marshmallows. I remember having to lie down every day at this point to try and feel better. I really struggled to drive in the rain as I couldn’t cope with the movement of the window wipers and I also couldn’t look when opening drawers.My GP at the time said I had ‘Uncompensated labyrinthitis’ along with some slight hearing loss and I was referred for some VRT. I did the VRT and appeared to improve a little however the symptoms didn’t ever truly leave me and the experiences went on and off since then. I could go months without having symptoms and then they would come back again without me being able to identify why.
Over the years, we had another child and emigrated from Scotland to Melbourne. I was able to manage my symptoms without too much difficulty and whenever I felt a bit off, would lie down for approximately 30 minutes and feel a bit better. I continued to believe I had Uncompensated Labs.
Around 3 months ago the visual disturbances came back severely. I felt like the walls were going to fall on me at work one day, started to see things moving on the floor again and my eyes felt so drained & heavy every day. I bent down one day to pick something up off the floor and actually fell over on the way back up. This gave me a huge fright and straight after, I had the whole world spinning sensation for the first time ever. I had to lie in bed and literally not move for 3-4 hours. I couldn’t even manage to go to the toilet with assistance from my husband as I knew I would fall over again. I was so distressed by this point and just willed & prayed myself to feel better. I referred myself to Dizzy Day Clinic for some VRT after this episode and they also managed to get me an appointment with Dr Shuey, a Neurologist at Melbourne Eye & Ear Hospital (I had been on the waiting list for about a year at this point). Dr Shuey has diagnosed me with Vestibular Migraine and recommended Sandomigran, which I have been taking for 4 weeks now. I have to be honest and say I was not convinced immediately with his diagnoses but now I have found so much helpful info on this website I am confident this is what I have.
I am currently trying to work out my triggers and after reading the wonderful ‘Heal your Headache’ book, I started the migraine diet. I don’t see any difference at the moment (3 weeks in) but not sure if I am expecting too much too soon. I had some blood tests done and found out I am anaemic so started on iron supplements. I also started a magnesium supplement (1000mg per day) but found I felt awful, like I was drugged, so have stopped these for the moment. They made me sleep better than I have in years though! I also got my eyes tested and decided to opt for glasses as my vision is only 70% in my right eye and 90% in my left which may be contributing to the heaviness/burning I feel every day. I continue with the daily VRT and have upped my Sandomigran to 1.5mg every evening.
I am so frustrated, saddened, disappointed, angry that I am still suffering from these awful symptoms 8 years on and wonder when there will be light at the end of the tunnel. I have been unable to go to work for the past 2 months and feel our 2 adorable children miss out sometimes as I’m just not able to be as active with them as I would like. I am determined to find out my triggers and get on top of this though. I’m beginning to wonder if mines are mainly hormone related and also sun/light glare (hopefully the new glasses and sunglasses will help with that).
So that’s my story in a nutshell. I hope to find lots of information and support on here and hope that I can help others too.