Hemiplegic Migraine need a new name?

Why do so many HMer’s think we need a new name?

I was surfing YouTube for videos about Hemiplegic Migraine (HM) and this video caught my eye. “New Name for Hemiplegic Migraine?” by LifeLongBrainFreeze talks about her struggle with people understanding that her symptoms are so much more than a migraine. She shows her frustration from people’s reactions and thinking they completely understand because they have migraines too. Honestly, ANYONE without Hemiplegic Migraine or a caregiver of someone with HM will NEVER understand until they see an episode for themselves. LifeLongBrainFreeze has several videos on her YouTube channel, even a few with her in the middle of an episode trying to do everyday normal things, like trying to walk to the restroom. Please check it out!

Do I agree?

Wholeheartedly! As an HMer for the last 12 years I know what it’s like to tell someone you have “Hemiplegic Migraine” and their facial expression first morphs into a look of confusion as the first word is spoken and then changes into a look of understanding once they hear the last one. It’s that one word, migraine, that causes someone to think it’s no big deal. Take an Advil and call me in the morning! Ha! I wish.

Do you NOT know what Hemiplegic Migraine is or never seen one in action? Let me know in the comments and let’s talk about your perspective.

So what would I change the name to? I asked several HM patients in a private Facebook group I am a member of. Pretty much everyone agreed upon Hemiplegic Neurological Disease. To help us have the name changed, please consider signing our petition!

How is Hemiplegic Migraine Classified?

If you understand medical coding or have a chronic illness, you’ll know right away what ICD-9, CM and ICD-10, CM is or have at least heard of it or have seen it on your medical records. If not, let me break it down for you! ICD CM stands for the “International Classification of Diseases, Clinical Modification” and “is used to code and classify morbidity data from the inpatient and outpatient records, physician offices, and most National Center for Health Statistics (NCHS) surveys” according to the Centers for Disease Control and Prevention. Basically, it’s a label for the syndrome or disease you have. It is used by your doctor for classification purposes and allows health insurance companies and government health care to bill you based off of these codes. How do I know this? I’ve argued with an insurance rep or two 😉

The ICD-10, CM for Hemplegic Migraine is as follows, as listed on ICD-1o Coded (ICD):

I won’t lie to you, when I read through these ICD-10, CM categories, I had no idea what intractable and migrainosus meant. I’ve seen it on my medical records here and there, especially from my emergency room medical records. Let me save you the trouble of googling those.

  • Intractable Headache (aka Refractory Migraine): “The terms refractory headache and intractable headache have been used interchangeably to describe a variety of clinical symptoms associated with persistent headache that is difficult to treat or fails to respond to standard headache treatments.” (Silberstein et al. 1499)

  • Status Migrainosus (aka Status Migraine): “Status Migraine is a single debilitating Migraine attack of 72hrs or more duration however, not repeated Migraine attacks.” (Schnakenberg)

Hemiplegic Migraine is not just a migraine, though. Like other rare types of migraine, HM is a collection of neurological symptoms that disables the patient for the duration of the episode. For some, it can take days for the after effects of some symptoms to completely disappear. For example, when I have an especially strong HM episode I have left leg weakness that can last days to weeks. I may no longer have any of the other symptoms and no head pain, but the muscle weakness is still apparent. I will limp around for a while making me famous among my family as having “stanky leg.” Thanks Dad! Ha! Though I only mentioned my leg, it’s truly the muscles along the whole left side of my body.


Erica Carrasco, Blogger
Erica Carrasco


Erica Nicole Carrasco is a blogger sharing stories of life with Hemiplegic Migraine and Non-Epileptic Seizures. She takes you on a journey through life’s ups and downs, smiles and frowns with chronic illness.

Don’t forget to leave a comment below, let’s chat!

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