Life with Hemiplegic Migraine: 5 Things I Wish I’d Known

By: Amanda Ingrassia, guest contributor

I was diagnosed with Hemiplegic Migraine only a year ago, in 2019, after a few years of struggling for a diagnosis for some odd symptoms and experiences. I’ve been living with hemiplegic migraine for a short while. Here are five things I wish I’d known when I was trying to get diagnosed and when I was newly diagnosed.

Storytime

I’ve had Chronic Migraine for 15 years. I’m pretty familiar with how my body reacts to attacks and what is and isn’t normal for me. So back in November 2017, when I realized my foot was dragging and heavy, I knew something wasn’t right. That was the start. The very first time I noticed something new was happening. My foot was “heavy” for over a week. I went to my doctor. She said it was fine, and I insisted it wasn’t fine.

She ordered an MRI to check for a TIA (similar symptoms to a stroke). My brain was squeaky clean.

So the next time my foot went heavy and I tripped and stumbled around, I said nothing. “Must be Migraine,” I thought to myself.

Symptoms continue to progress

Then my leg went heavy and was dragging around. I went back to the doctor. Again an MRI. Again clean. With every new symptom– arm involvement, face drooping, slurred speech, lost speech, confusion, pain, and more—my doctors would do an MRI or send me to a specialist for this, and a specialist for that. At one point, they even suggested that perhaps my anxiety was creating the symptoms. And I did have anxiety.

I felt like my body was betraying me. I’d wilt on my right side, unable to lift my arm or leg without vast amounts of effort. My head would feel so heavy that my neck was unable to lift it. My speech would slur. Words were hard to find. And sometimes they left altogether, and I would be lost with my thoughts but no way to speak them.

In this darkness and confusion and fear, I found a glimmer of light in a blog post by Erica Carrasco. She wrote about her experience with Hemiplegic Migraine, and it all clicked. It was like reading about myself. I recognized the symptoms. This is what I had. It had a name. Six months later, a headache specialist confirmed my hunch: I had been living with Hemiplegic Migraine.

About Hemiplegic Migraine

Hemiplegic Migraine is a rare form of Migraine with aura, with an estimated prevalence rate somewhere between 0.002% and 0.01% of the population.[1] The International Headache Society has guidelines for physicians on the characteristics of the disease. This includes meeting the criteria of having Migraine with Aura, as well as “aura consisting of both of the following: fully reversible motor weakness, and fully reversible visual, sensory, and or speech/language symptoms.”[2] A hallmark of this form of Migraine is that the weakness is almost always unilateral, impacting only one side of the body at a time.

Diagnostic criteria are one thing; it’s another thing entirely to walk the diagnosis. So here are the five things I wish I’d known when I started this journey with Hemiplegic Migraine.

1. Everyone is different

It may seem a bit obvious that “everyone is different,” but I didn’t grasp its importance until later in my journey. We all express illness differently. But Hemiplegic Migraine seems to have a great spectrum of experiences, with the only similarities being that we all fit that diagnostic criterion I just shared. How severe our symptoms are and how long they last will look different from person to person. And we’ll have quirky little symptoms thrown in there too.

For example, I usually get super disoriented during an attack. But not everyone does. And my attacks always seem to impact the same side. But some people have attacks that vary from side to side. I feel a bit detached from the world sometimes, while others slip into a coma.

These differences—especially those that are more extreme- can make it seem like we all have a different disease. But it’s all just a spectrum of the disorder called Hemiplegic Migraine.

2. Treatments look a lot like ‘traditional’ migraine treatments

I was already on a treatment plan for Chronic Migraine when I was diagnosed with Hemiplegic Migraine. I was surprised how little the plan changed with the diagnosis.

Preventative medication for hemiplegic migraine may be used to help prevent attacks. The new class of drugs colloquially called CGRPs has proven useful to many, while others don’t see a significant change. Some find relief from hemiplegic migraine with medication such as Topamax and Gabapentin. My preventative medications did not change when I was diagnosed with Hemiplegic Migraine.

Differences in how abortive medication is used for hemiplegic migraine

Abortive medication, however, are used a bit differently in patients living with Hemiplegic Migraine. Patients are generally not prescribed triptan or ergotamine medications due to concerns about stroke.[3] However, there is emerging research that the risk of stroke is not increased with these medications.[4] So some individuals are prescribed these medications as well.

You and your doctor work together to determine the right treatment for your unique circumstances and case, so never discontinue a medication without checking with your doctor first. Two newer CGRP medications– Ubrelvy and Nurtec – have been approved for use to abort a migraine attack, and many with Hemiplegic Migraine have found them useful. Nurtec helps slow down my attacks, ultimately making them milder and shorter

3. Learning my triggers is helpful but not a cure all

Somehow I became convinced that if I could just learn what was triggering my Hemiplegic Migraine attacks, I could prevent them. This idea was bolstered by a myriad of apps and articles designed to help you “find your triggers.” But the reality is, HM is a chronic neurological disease.

While figuring out what encourages attacks and minimizing my exposure to those things may help me control the severity and frequency of attacks, this is a disease that I will have forever (at least until we find a cure!). That’s a hard pill to swallow.

4. Therapy is powerful

Adding a therapist to your health team is so powerful. This person can help you process your life with Hemiplegic Migraine. You’re not only dealing with the severe pain but also the feelings that come with losing control of your body. Additionally, Hemiplegic Migraine is usually diagnosed after disproving other illnesses (i.e., differential diagnosis).

It’s easy to feel offended when we’re trying to explain our symptoms, and the doctor recommends we see a psychiatrist or therapist. I know I was affronted by this when it happened. “I’m not making this up!” was my initial reaction. But that’s another excellent reason to add mental health specialists to your team.

Together with your neurologist, they can determine which symptoms are Migraine and which may be caused by stress or anxiety (because heck, going through any sort of Migraine attack can be really traumatic. So. Much. Pain.).

Hemiplegic migraine anxiety is unique as your body can look like it’s having a stroke. And, other may become alarmed and assume you are having a stroke. This can escalate stress and make things worse rather than better.

A therapist is your ally both on the path to diagnosis and in managing the disease. If you have access, I strongly recommend you use it.

5. You’re not alone

The last thing I wish I’d known in the beginning was that I’m not alone. And neither are you. I was told over and over how rare this form of Migraine is. And that’s true. But the internet has brought together patients from all over the world. My first “HM friend” was Erica, and we met online. Since then, I’ve met so many other patients. I urge you to visit social media and look under the hashtag #HemiplegicMigriane or other variants. Or to go on Facebook and visit the International Hemiplegic Migraine Foundation. They have support groups for both patients and caregivers impacted by Hemiplegic Migraine.

Living with this disease alone makes it so much harder. Reach out. Connect. The energy expended to do that isn’t a waste.

It’s been over a year since my official diagnosis of Hemiplegic Migraine. I’m still early in my journey. But I’m so grateful to the people further along who shared their experiences and wisdom with me as I began. I hope this article gives you a boost as you start out too.

About the author:

Amanda Ingrassia is the Editor in Chief of My Chronic Brain, a magazine devoted to helping Chronic Migraine sufferers live their exceptional lives. She has had Chronic Migraine for over 15 years, and was diagnosed with Hemiplegic Migraine in 2019. She lives in North Carolina with her sweet service dog Genius. You can connect with her on Twitter @breathemia or Instagram @justbreathemia.

[1] Kumar, Anil et al. (2020) “Hemiplegic Migraine.” Treasure Island, Florida: StatPearls Publishing. https://www.ncbi.nlm.nih.gov/books/NBK513302/#:~:text=migraine.%5B9%5D-,Epidemiology,familial%20hemiplegic%20migraine%20is%200.003%25. Accessed 06/26/2020

[2] International Headache Society (2019) “HIS Classification ICHD-3” London: Sage Publications Ltd.

https://ichd-3.org/1-migraine/1-2-migraine-with-aura/1-2-3-hemiplegic-migraine/ Accessed 06/29/2020

[3] American Migraine Foundation. (2017) “Hemiplegic Migraine” https://americanmigrainefoundation.org/resource-library/hemiplegic-migraine/ Accessed 06/29/2020

[4] Singh, G., Sherman, J., & Sinkhan, G. (2015) “Are Triptans safe in Basilar and Hemiplegic Migraine? A retrospective chart review (s23.002)” Neurology. Alphen aan den Rijn, The Netherlands: Wolters Kluwer Health, Inc.