Living with Hemiplegic Migraine

The first time I had a hemiplegic migraine attack, I was 39 years old. I thought I was having a panic attack or a stroke when the attack first hit me early on a weekday morning. My right leg and arm went completely numb, I was carrying my son at the time so I sat him down in a safe area and laid down on the floor of our kitchen completely paralyzed on my right side. My son stood at the baby gate watching me lay on the floor as I tried to tell him, “Momma is ok” and call for my husband at the same time. You could see the shear fear in my baby boy’s eyes. Thankfully, my husband was running late for work that day and was still home. He scooped me up off the floor and on to the couch and made sure I was ok. After about 30 mins– the attack passed, and the weakness on the right side of my body stopped. Again, I thought this was a panic attack so didn’t really think much more about it until I started doing a little deep Google diving and found that there is in fact a type of migraine that mimics a stroke; it is called a hemiplegic migraine.

What is Hemiplegic Migraine

The American Migraine Foundation defines a hemiplegic migraine as, ” a rare form of migraine where people experience weakness on one side of their body (hemiplegia) in addition to the migraine headache attack. The weakness is a form of migraine aura and occurs with other forms of typical migraine aura like changes in vision, speech or sensation”.

The symptoms of hemiplegic migraine are as follows:

  • Motor weakness on one side of the body (Hemiplegia)
  • Headache
  • Other typical aura symptoms – vision changes (sparkles, shimmers, visual field defects), numbness, tingling, trouble speaking
  • Fever
  • Impaired consciousness ranging from confusion to profound coma
  • Ataxia (defective muscle coordination)
  • Nausea and/or vomiting
  • Phonophobia (increased sensitivity to sound) and/or photophobia (increased sensitivity to light)

The symptoms can last for hours to days, or rarely weeks, but most resolve completely.

In MOST cases of hemiplegic migraine, it presents when the patient is a child. I am a rare case in that it presented much later in life. Although when I think back on all the years I have lived with this neurological disease, I can remember points where I had weakness and “stroke like” feelings on side of my body–so it is possible I had it as a child but didn’t recognize the symptoms as being alarming until I have become much more educated on this debilitating neurologic disease.

Hemplegic migraine, like general migraine disorder; are linked to genetics. According to the AMF, “hemiplegic migraine is divided into Familial hemiplegic migraine (runs in the family) or Sporadic hemiplegic migraine (happens only in one individual). This is a very rare migraine type so if you ever experience new or never-evaluated weakness with your headache, you should seek immediate medical evaluation and not assume you have hemiplegic migraine. Both familial and sporadic hemiplegic migraines often begin in childhood. Diagnosing hemiplegic migraine can be difficult, as the symptoms can mimic stroke, seizures or other conditions. A full neurological work up, including obtaining imaging of the brain and vessels in the head, and careful review of medical history and symptoms are necessary to rule out other causes and confirm a diagnosis of hemiplegic migraine. Family medical history is especially helpful in diagnosing familial hemiplegic migraine”.

Living with Hemiplegic and Chronic Migraine

I am now 40 years old and have chronic migraine in addition to hemiplegic. I have lived with migraine attacks since I was 10 years old; but was not formally diagnosed until I was 18 years old. For, many years my migraine attacks presented with a visual aura in one eye, and head pain would follow within 1-3 hours. I was able to take a triptan such as, Imitrex, go to sleep and the attack would end. Approximately six years ago, I was in a minor car accident/fender bender, which turned my attacks from “occasional” to “chronic”. In the past six years, I have had three spinal surgeries to correct herniated discs in my spine (which they believe happened in the car accident). After the birth of my son in 2017, my attacks that were already chronic spiraled into making me bedridden. I was unable to care for my son the first year of his life. In 2019, I was admitted to an intensive migraine treatment program in Michigan, which led to the diagnosis of a Spinal Fluid Leak—I had a blood patch epidural to correct the leak in my spinal fluid. In the time since attending the program in Michigan, I have been slowly finding my path to what my life looks like living with Chronic Migraine. To say I was utterly SHOCKED with a new diagnosis of Hemiplegic Migraine is an understatement! My doctor ordered several tests and blood work to finally conclude that I was in fact having hemiplegic migraine attacks.

What I have found with my hemiplegic attacks are that they typically proceed an INTENSE head pain attack, nausea, dizziness and extreme light and sound sensitivity. The longest attack I have had was almost a week in entirety. The hemiplegic attacks typically occur when I am in a “Botox Letdown“, or an extremely stressful situation.

As far as treatment, my doctor has put me on a calcium channel blocker (Amlodipine–Norvasc). This treatment coupled with Botox every 12 weeks, daily maintenance medications and monthly Ajovy has seemed to help. But honestly, now that I am AWARE of what is happening to me; I have found that I just need to get to a safe place and ride the attack out. It has been INCREDIBLY scary having an attack while caring for my son, who is 2.5 years old. On the days when I do not have help at home from my husband—I will try to plan very low energy activities with my son like coloring, playdoh or painting. On the occasion it has gotten so severe that I am unable to use my arm or leg from the temporary paralysis, I have called a baby sitter or my husband has come home from work. The head pain attack that follows usually presents within 1-3 hours, and can last up to 4 days. During that time, I still experience weakness in my arm/leg accompanied with tingling and numbness, nausea, dizziness and noise/light sensitivity.

If you believe you have had/or are having hemiplegic attacks, I would encourage you to speak to your neurologists or headache specialists. They can perform the proper tests for a diagnosis. Having this diagnosis, in addition to having chronic migraine is challenging. But, for me, it has motivated me to be more vocal, educate and advocate for all forms of this neurological disease. There is such a huge misconception in our society surrounding migraine. As an advocate, I hope to educate the general public, and if I can help ONE individual then I am happy.

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