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Living with Hemiplegic Migraine and what I’ve learnt

Updated: May 29, 2020

Severe migraine attacks are classified by the World Health Organization as among the most disabling illnesses, comparable to dementia, quadriplegia and active psychosis according to the Migraines trust and yet I find there isn’t a lot that is really known about what contributes towards migraines.

I have found migraines can be widely dismissed and misunderstood as a disease or illness due to the fact that 1 in 7 people suffer from a form of migraine (3 out of 4 suffers being female and hormone-driven) there seems to be a misunderstanding as to the severity and debilitating effects a migraine suffer becomes accustomed to. These are not just a “bad headache”.

If you’ve ever experienced a classic migraine you will know, its not an experience that is easily forgotten!

I’ve only ever suffered one “migraine” in the most common sense and I’m telling you that not sleeping because of a headache that just grows in pain and wakes you up; spending the morning sitting in the bathroom covered in your own vomit and spending the rest of the day in a dark room being allowed 30 minutes in the late evening to watch the television, permitting you to have sunglasses on, is no way to spend the day! And that is just a “normal migraine”.

Now let me explain what a hemiplegic migraine is…. I am one of the 0.01% of the population that suffer from this rare disease. As with all migraines, the number of symptoms and their severity differ from person to person. But I’m here to talk about my experience.

At age 16 (the same time my anxiety began) I got my first hemiplegic migraine at college. I was taken straight to the hospital for a suspected stroke, which was highly unusual for my age! I don’t remember much about the day but I do remember being told that if I ever had another one, I was to come straight back to hospital. I went home undiagnosed and terrified I was going to have a stroke.

Years passed and I never experienced another attack. My next one didn’t come till university… I was on a particularly tight deadline, and I remember being pumped that morning with the number of things I had to get done, but that wasn’t going to happen! Knowing how much stress I was under, my roommate came into my room with breakfast and cereal on hand (she was a good egg!) But I couldn’t see her…

I could hear her voice, and I was very aware she was sat right next to me, speaking to me but I kept saying “I know you're there but I can’t see you” (partial blindness) it wasn’t black, I wasn’t blind it was as if parts of my vision were gone and my brain had tried to merge together what was left. I rinsed out my eyes but no change, I started to get dressed but felt very weak, unsteady and frankly like a shell of myself. It wasn’t long after my sight returned that my motor skills started deteriorating (paralysis), with everyone rushing around me not knowing how to help, I was practically paralysed on my right side. These are common symptoms of a hemiplegic migraine or “half-paralyzed” migraine. I didn’t know that at the time, but it was soon confirmed by an MRI and a day full of tests and doctors. I was told my chance of having a stroke had increased to 50% due to this diagnosis and there was no way to control, monitor or cure me. In fact, these are considered just a few of the "triggers" associated with causing migraines:

  • Caffeine

  • Anxiety

  • Stress

  • Depression

  • Over Exertion

  • Fatty Foods

  • Foods high in saturated fat

  • Surgery Foods

  • Surgery Drinks

  • Chocolate

To name a few...

My migraines have grown in frequency since then and severity. Headaches now usually follow the partial loss of sight and paralysis, however, admittedly the worst symptom is the effect it has on my brain. Like pressing the reset button on a computer, I struggle to put together sentences (incoherency), spell words or recite memories (memory loss), it is immensely frustrating and can last up to a week or longer after the event (referred to as postdrome).

With very little research or guidance at the time of my diagnosis, I have next to no idea when they will strike or what could be causing them.

Since that day my migraines have come more frequently and I decided to create a Migraine tracker to help me get control of when I might be expecting another, by tracking my day I think I’ll have a better understanding of what might be contributing or triggering their “arrival” which is now available to purchase off my online store. This tracker will keep a record of food, drink, activity, work, symptoms and dates; by means of a compartmentalized structure and year calendar.

By creating this diary I am able to give some reassurance to myself and others suffering that I there is a way to self-monitor the condition as well try and find similarities actions and habits leading up to the attack.

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