From Michele: Migraines. Have you ever had one? If you haven’t, they are extremely excruciating (I know from experience). The migraine research foundation claims that migraines are the 6th most disabling disease in the world. And there are countless of other statistics that we could share, but what we think is most important is hearing from those who struggle with migraines. Hearing their perspective. So read Amy’s story below on what it’s really like to deal with vestibular migraines. If you want, you can connect with her and PLEASE pin some of these statistics (posted at the end of this post) to raise awareness.
I was finally diagnosed with vestibular migraines in August this year after suffering with symptoms for over a year! I’d suffered migraines since 2011-2012. It had taken that long to be seen by a neurologist that I’d already figured out my own diagnosis! I was so happy when the neurologist said “it’s vestibular migraines & refractory migraines” as I knew I wasn’t going mad!
I had to stop work in July this year due to my symptoms becoming increasingly worse… I’m a cancer research nurse. During the last 4 months my vestibular symptoms have got increasingly worse – I spend each day on the sofa or in bed.
Every day since the end of July 2019 I’ve suffered from vestibular migraines.
My symptoms include: blurred vision, dizziness, spontaneous vertigo, nausea, vomiting, headaches, unsteadiness, eye pain, right ear pain, tinnitus, fatigue, scalp sensitivity & slurred speech.
It’s completely impossible to live a normal life right now, as my symptoms can be very spontaneous and start in a matter of seconds & last for as long as months, which is very debilitating. Due to this I can’t drive at the moment.
In the summer I remember being in the park with my boyfriend & our dog and my symptoms came & people thought I was drunk. I couldn’t walk straight & was having to be held up to walk. I was so embarrassed!
But why should I be?
Every morning I wake up hoping I will okay and be able to walk without having to hold on to the furniture. Some days I’m okay for a few hours, other days the symptoms hit me when I wake up or in the night. It’s that unpredictable! When I’m like this I can’t always stand up as I’m so dizzy, so I have to crawl around with a sick bowl to get to the toilet, it’s awful.
My worst migraine attacks have been last week & a few weeks ago. I woke up with an awful migraine.
In the space of a few minutes I started with vestibular symptoms – extreme dizziness, double vision, room spinning, head spinning, unable to stand up or walk in a straight line & nausea. I had already had all my meds & 3x different anti-sickness medications. Within an hour I started vomiting every time I sat up, I was sick as the room was spinning. I had to crawl with my sick bowl to use the toilet. . Eventually after 7/8 hours the symptoms, vomiting vomiting blood all subsided. I don’t think I’ve ever been so happy for it to end!
Unfortunately, migraines are a regular occurrence for me at the moment, but it happens several times a week.
Whilst I write this I’m sat inside with sunglasses on & the blinds a tiny bit open. Sunlight immediately causes an attack, as well as smells such as strong perfumes & cleaning products. Scalp sensitivity means I can’t always wash my hair when I want to as touching my hair is too painful.
As I’ve tried all of the preventive medication, I had Botox 3 weeks ago. At the moment I have had no effect from the Botox. Usually relief doesn’t come until the second set of injections (every 12 weeks). I’m remaining extremely hopeful that Botox will work by reducing the severity of my symptoms & the number of migraines I have each month.
A week ago I started wearing special migraine glasses which block out white, blue and red light which can cause migraines – they seem to be helping a bit so far.
Despite all of this I try to remind very positive, it’s something I’ve learned over the last two years.
Amy
Connect With Her: https://www.instagram.com/conjoined_nerve_root/