Migraine Journey Wednesdays (Vol.5 - Vicky Tori)
Hello from Australia. Hope everyone is feeling good today.
I would like to explain the attached images. The first one is an example of typical trailing I imagine quite a lot of people reading this will be familiar with.
The following three all happened on the same day. I was trying to catch a bus home one day and all of the sudden the text became jumbled on the front of the buses and on the signs. I became worried as there was no way for me to know which bus to catch so I thought I could walk into the city central and go to the bus stop there instead.
Walking over the bridge the buildings all started to curve and I started to loose field of vision from the left hand side.
By the time I made it to the mall colors had gone a bit hyper intense and peoples faces started splitting in half. So strange and I was feeling quite scared. I did find my way to the bus stop. So lucky as my eye sight was tunnel vision by then in one eye and gone in the other. Just another day.
My Family’s History with Migraines
My first migraine that I remember,I was sitting in class, at 10 years of age and my eyesight just started to disappear. I was so frightened! When I put my hand up to tell my teacher, she didn't believe me as we were just about to have a Math test. She just moved me to the front row of class but came around to believing me eventually when the nausea kicked in. I thought I was losing my eyesight.
Anybody out there who has young children please explain migraine aura to them if there is any chance they may inherit it, so it doesn't sneak up on them :o). I even had one migraine at 14 years of age where my left arm just started floating up by itself, right up parallel to the ground. I had no control over it.
My migraines continued on throughout my 20's kind of normally then in my early 30's I had a traumatic brain injury and things changed. I was getting lots of aura without the pain of migraine. Also left sided paresthesia and lots of headaches. The visual aura was to the extent of palinopsia. 5 years after the traumatic brain injury, the doctors found an ophthalmic aneurysm.
I was diagnosed with aura without migraine, paresthesia from stroke (not showing on scans). Luckily they finally were able to fix the annie which has really helped with my eyesight, I would say about 70%.
Strangely, the last 6 months things have just changed out of the blue again. I have no idea why. I experienced the return of proper migraine head pain, nausea and increased eyesight symptoms. Not to forget lots of face and teeth pain that is really weird and that I have never had before? Oh, and the paresthesia has increased too. I am beginning to wonder if it may be migraine too?
The People Around Me
It is very difficult for people to be supportive when you have an invisible illness. The continuous nature of this is so disabling, it is very difficult for people to understand.
The Effects of Migraines on My Life
I used to be an Architect but had to stop work. I was also doing part time tutoring work for the university and had to stop that as well as I kept losing words. It was so embarrassing! I’m afraid to go out at night because of my eyesight going. The lights are still weird. Lack of career means lack of money so slowly I have just stopped doing things over all these years.
Naturally I have lost touch with my old friends. You can't underestimate the fear of going out somewhere and suddenly losing your eyesight when you are by yourself. I have kind of isolated myself. The last three years I have gone back to study to re-train so I can find new employment, to hopefully find something that will be compatible for me.
What I’ve Tried
My neurologist, who has been wonderful, had tried me on about three different meds before settling on Topiramate. I sit at around 150mg a day. The best thing for me is to stay stress free. I prioritise my peace with daily walks (on the beach) and trying to do things that are fulfilling.
On Days Things get Unbearable
Just try to go to sleep.
Some Advice for My Fellow Migraineurs
Trust your own self when it comes to your health. You always know what is best.
Wouldn't it be great if they could find a cure for this one day! Here's hoping.
Thank you, Vicky, for stepping forward to share your migraine journey with everyone. If you would like to share your story and let your voice be heard like Vicky, you may do so here: bit.ly/2rJcpMR
the Migraine Buddy team 💜