During my teenage years, I experienced very painful migraine headaches. At the age of 18, one morning while pouring myself some cereal in my family’s kitchen, I suddenly felt extremely sick. Instead of running to the bathroom I could only sit back in a chair. Slowly my vision faded to black. I sat there saying “Um, I can’t see. Can somebody confirm that my eyes are open?” My mum walked me to my bedroom and after about 3 minutes, my eyes felt hot and my vision faded back in.
Fast forward to July 12, 2014. I’m 34,a dental hygienist, and 2 months back to work from maternity leave and surgery that removed my thyroid gland (it was benign but had nodules growing and multiplying all over it). On July 12th I was just finishing up with a client when I felt a strange, light-headed sensation. My vision went strange, almost double. Next my left arm got very heavy. I got very confused and couldn’t find words I wanted to say. Convinced I was having a stroke, I was rushed to the hospital. All tests normal. Over the next few days I experienced heaviness and drooping on the left side of my face, and tingling and heaviness in my left leg and arm. For 3 weeks I felt hungover, in a fog, and terribly concerned that something was seriously wrong with me. My family doctor was convinced it was stress, though thankfully he referred me to a neurologist/headache specialist, and arranged an MRI.
The neurologist said it was some kind of migraine aura. There was a bright spot on my right frontal lobe on my MRI but it had vanished by my second MRI. He told me bright spots can be anything, really, and migraines can definitely cause them. He assured me it wasn’t a stroke since it disappeared completely. (I had multiple scans and tests to help rule out stroke as well).
Fast forward again, to 7 months later, February 4th, 2015. The weeks leading up to it, I had a nagging headache (no more than a 2 or 3 on my pain scale). I couldn’t look at my mobile phone and lights were really bothering me. I found myself feeling very confused in our local grocery store. It was as if things had been completely reorganized and I couldn’t find things (nothing had moved). I messed up several easy, routine recipes, and did strange things like leave car doors standing open when I went into the house. On February 4th I had my second, and bigger episode. I suddenly felt light-headed, and then the whole left side of my body felt like a stick of butter that was melting. I got confused and drowsy and couldn’t speak or stand. The left side of my face drooped. My hearing on the left was muffled and my left eye vision was off and blurry. This happened off and on for several days and I experienced blind spots in my left side vision. I saw the neurologist again, and after the research I’d done, I asked him if it could be Hemiplegic Migraines. He first said “No, because you’re not paralysed on one side”. I agreed I wasn’t *currently* paralysed, as I sat in his office, but I explained my symptoms again. His look changed and he said “Oh. I think you’re right”. He examined me and officially diagnosed me with HM, though he also said “Unfortunately there’s not much we can do for you”. I tried topiramate for several months, but came off it as I found the side effects to be extremely similar to the migraines.
I haven’t been the same since that second occurrence. I sometimes lose entire chunks of time, having no recollection of them at all. My ability to concentrate seems to have been permanently altered. My short-term memory stinks (did I say that already?). I have trouble using lists, and I love lists! I love crossing things off of lists, and now I find them frustrating to follow. I sometimes have trouble finding words and during episodes I slur and say gobbledygook. I have suddenly developed a permanent tremor. It started on my left side only but is now everywhere. It flares up before and during an attack, but it’s always there.
I still rarely get painful headaches, not more than a 3 in pain level, and I realize I’m very lucky in that regard.
I went to a headache clinic at a teaching hospital in Toronto, Ontario, and I was instructed to take Magnesium Citrate, Co-EnzymeQ10, and vitamin B2. These drastically increased my energy levels and for a while I seemed to recover more quickly from an episode. However, recently my tremor has kicked up a notch and I’m having episodes where my body gets rigid and I cannot move fluidly. This will last for several hours. My warning signs are the same. A few days before, I’ll have a patch of nerve pain on my left forearm and/or hip. The next day I’ll have flashes or spots in my vision and then waves of goosebumps down my left side. Then nausea, then either the one-sided melting butter sensation, or I wake up in the morning and I’m jerky and stuttering and rigid and slow.
I’m having further testing. New neurologist confirmed diagnosis of HM but wants to know if something else is going on. My physical and my neurological examinations were completely normal.
I had to stop working in March of 2015. Nobody wants a dental hygienist with a tremor who can’t concentrate on what she’s doing. I used to work out 3 times per week and I loved running. Now even a brisk walk will bring on heaviness on my left side and aggravate my tremor. I have trouble following my knitting patterns.
It is possible I have left out entire chunks of my story here, but I think I remembered most of the important bits.
I have a 4 year old and a 2 year old who have sometimes needed to be more grown up than they should have to be, when I’m unwell. I’m very fortunate to have an incredibly supportive husband, and family, and friends, but it can still feel quite lonely and scary to be stuck in a body that is acting wonky!