My Path to Hemiplegic Migraine Diagnosis – Part 2

It took months of testing and there are still some serious additional diagnoses I don’t feel comfortable even speaking about as possibilities, but after many medications and tests, my neurologist confirmed I have a complex migraine disorder called Hemiplegic Migraines. Hemi – half… this explained why 90% of the time I was experiencing paralysis on half my body. But why!? Not many really have theories of why this occurs in the people it does, but what I can tell you is that it’s painful, it’s debilitating and it’s fear-inducing in the worst way. If you google the symptoms, some of the first ones to show up are “stroke like episodes”. It was a shock to me, but it was a list of every single symptom I was experiencing.

Having answers meant the world to me. It would be at least 6 months to a year that meds did part of the job, but since then, some symptoms have worsened that I definitely need to get back in for an evaluation.

Having the talk with coworkers and family

But after the diagnosis came the hard part; telling my coworkers and family. I had NO idea where to start, as my family didn’t really recognize it. I have blacked out many times, but it wasn’t until my father saw me pass out last year in my own and I had no idea what had happened or what we were talking about, that he truly experienced some of my other odd symptoms of other diagnoses (my main disease is Crohn’s Disease as well as Rheumatoid Arthritis). I was incredibly embarrassed, even though it happens often to me at home, it was the first time a family member had seen it happen to me. I wasn’t sure if it was in part due to my diagnosis of Autonomic Dysfunction or part of my migraines re-activating, but it was a period of when I had to switch medications for my migraines so I had believed the fainting spell was caused by that.

Mixed reactions

So when I told my coworkers, I was met with mixed reactions. I told my office mate first (the one who I had kept my symptoms SO well from. She was shocked and a little scared. When I told both my boss and my coworker that they don’t need to do anything if they see something happen, that for me, it usually takes minutes to go away and if I was able to, I’d excuse myself from the room. I told them if I passed out, that they were NOT to 911 or panic, that along with my Autonomic Dysfunction, when they are both active, I tend to lose awareness of my surroundings for a few seconds and come to be very confused. Luckily, nothing dramatic ever happened after that, because I learned to recognize onset symptoms and react immediately. And then, eventually, meds started working and minimizing symptoms. I have been fortunate enough not to deal with permanent paralysis or paralysis lasting longer than a few hours. My condition is very minor compared to some others diagnosis of the same type of complex migraine. With nerve blocks, (failed) botox and medications, I live my life as fully as I can, knowing that my migraines have a nasty habit of creeping up on me when I least expect it, especially if it’s been months since my last episodes. Now that they are more frequent and serious, I need to be proactive rather than reactive by working with my neurologist and care team on the steps that we must take on together as a team next.

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  • DawnJ
    1 year ago

    This is all too familiar. My husband’s neurologist who finally diagnosed him, told me to be calm and get him in a safe place when he starts having symptoms. I think I have experienced enough episodes that I would know when to call 911. But really do I have the experience? Good thoughts and thanks for sharing everyone!

  • Douglas
    1 year ago

    Please re-consider the “don’t call 911” advice. Hemiplegic migraines do put you at a greater risk of stroke, and minutes count at that point. I say this as someone in a similar situation (I have familial hemiplegic migraines [FMH]), I also have a history of strokes/TIAs. If you are able to articulate that it is “just” a migraine and not a stroke good, if not then you should not put the burden on others to determine your fate.

    It is very frightening to have your body betray you in this manner. I do applaud you for informing those around you of your disease, it can be very helpful if others are aware of your normal (well usual) symptoms. It is also important that someone is able to inform EMS of your condition if they are called. I came off a 10-day attack last monday and a 3-day attack that landed my in the ER for a magnesium IV (usually works for me), if it were not for my daughter being able to articulate what I have and my Migraine specialist (along with my documentation in my day-planner), I would have wound up in the hospital for observation — I failed the stroke test (I do not recall the score) badly.

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