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Hemiplegic What?

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.

I was diagnosed with silent migraines, prescribed something called Sandomigran, and didn’t experience headaches or vision problems again. (I stopped the medication after a year or so).

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!

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Migraine.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • Glitter Pumpkin
    3 years ago

    I have Lupus and after a year of additional mystery symptoms that mimicked seizures and mini strokes during which I had been to 2 neurologists. The first one said I was suffering from Panic Attacks. I’ve had those in my early 20s so I’m very familiar with that form of demon. That was definitely not the culprit. The Neurologist dismissed me as a hysterical woman as a lot of doctors do these days. After waiting out the symptoms they started again to control my life so I returned to my Rheumotologist who referred me to a different Neuro. He told me I was overwhelmed. (he took an hour to tell me that and I actually have to pay him for that?)

    On a whim I made an appointment with my primary care provider and told him the story of the last year and the doctors and “diagnosis” they gave me. He wasn’t happy. He knew right away I was suffering from Atypical Migraines that mimic strokes and epilepsy. He prescribed a calcium blocker and that has diminished the symptoms. I see him again next week and have more questions for him. These migraines no longer rule my life. I look forward to finding out more info from him and to letting the Neurologists know that they missed the boat on helping a patient.

    I’m glad I found this site. I don’t feel so alone now.

  • Joanna Bodner moderator
    3 years ago

    Hi Glitter Pumpkin, We all appreciate you sharing your story. You have been through quite a journey. It can certainly boil down to finding the right doctor for YOU and good for you to keep pushing! Additionally, you’ll see in my original comment to this story discussing the difference between a general Neuro and a specialist, that although it sounds like you have a great PCP, if you ever felt that you needed an additional opinion there are migraine and headache specialists. Feel free to review those links provided.
    We are so happy you found us and always feel free to share.
    Warm regards,
    Joanna (Migraine.com)

  • 23r1c5h
    3 years ago

    I too, suffer from these monstrosities and I know the terror you feel when you suddenly lose complete control over one side of your body. Mine started after a mini-stroke in April 2014 and I have not been back to work since, it scares me to my bones to think of having one of these attacks when I’m driving, I have even taken a few falls and pretty convinced I’ll need surgeries to fix the injuries I’ve sustained once I get on Medicaid and actually see an orthopedic surgeon.

    This website has been a life saver for me, so many terrific people and amazing articles – it was the first site I clicked on when I did a search to find out what the heck I was going through. I even have it as my homepage and check it multiple times a week.

    My thoughts and prayers are with you.

  • HeatherS. author
    3 years ago

    Thank you for your message, Stacey. I have found groups like this one and the Help for Hemiplegic Migraines support group invaluable. I’m new to this site, but connecting with people who understand first hand what it feels like has been so helpful. I hope you’re feeling well today and thank you for reaching out.

  • Joanna Bodner moderator
    3 years ago

    Thank you for your reply to her story and sharing yours. We are truly grateful you found our community and please never hesitate to reach out to us. We love hearing that that it has brought you some comfort and we especially appreciate you taking the time out of your day to mention that in you reply. Our thoughts are with you as well. Good luck once you are able to visit with an ortho surgeon. Wishing you a gentle night. Joanna (Migraine.com Team)

  • Joanna Bodner moderator
    3 years ago

    Dear Heather S. – Thank you greatly for sharing your very emotional story. You have endured and been though so much with this condition. Your courage and ability to share this journey brings comfort to many who are feeling isolated and feeling as though they are alone.

    Kudos to you for continuing to speak to your doctors and taking the crucial steps on potentially furthering your diagnosis. You mentioned going to a headache clinic and working with your neurologist and while this information may be redundant, I thought I would share some additional information with you if you needed any further insight finding an expert who specializes in migraine and headache disorder. As I am sure you are likely already aware, these doctors are different from general neurologists (who may claim to be a headache expert but truly aren’t) because they are board certified in headache medicine. Neurologists may be fine doctors but have a hard time being experts in one area because they treat so many different conditions. Here is information on how these doctors are different and how to find one. https://migraine.com/blog/how-are-migraine-specialists-different/ and https://migraine.com/blog/really-find-headache-specialist/.

    Thank you again for sharing your story and please be sure to keep us posted on how you are doing. Best of luck with your further testing. We’ll be thinking of you! Joanna (Migraine.com Team)

  • HeatherS. author
    3 years ago

    Thank you so much for your reply, and for the information about doctors!

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