Living with Familial Hemiplegic Migraine with Paralysis | Webinar | Ambry Genetics

Living with Familial Hemiplegic Migraine with Paralysis | Webinar | Ambry Genetics

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Living with Familial Hemiplegic Migraine with Paralysis: The Patient’s Experience with Kirsten Blanco

Familial hemiplegic migraine (FHM) is a rare, poorly understood form of migraine with aura that can often mimic stroke, epilepsy, and other neurological conditions. In addition to the migraine head pain, other severe symptoms can include hemiplegia (unilateral motor weakness), impaired consciousness, and ataxia, which can be frightening for both the individuals suffering from and witnessing the episodes. This talk will not only provide background and discuss what is currently understood regarding the genetics and pathophysiology of FHM, but also describe the physical and personal challenges of living with such a condition and how proper treatment and lifestyle changes can make a difference in overcoming obstacles and living a healthier life.

Presented by:
Kirsten Blanco
Zöe Powis, MS, CGC


  1. Kerry Sue on December 12, 2021 at 11:38 am

    Wow! You are just like me! Another person who had them several times a day, starts in the morning, tingling sensation. Wow. And I went thru the conversion disorder- psych evals too. So awful. So relieving when you finally get a real doctor. Then boom. Real treatment. Im still chronic, disabled, but still trying.

  2. Gytis Bernotas on December 12, 2021 at 11:42 am

    I am 26 (M) and I have been having HM since I was 13-14; however, only now I am finding its full name. It took me 3 years of frequent visits to many neurology doctors to find out that I have a migraine with aura – at least it was towards the right direction as it didn’t explain the rest of the symptoms. My HM would normally start with the fingertips of my right hand and then slowly reach my face, lips, tongue, cheek, eye (once I have seen black and white because of this) before I get a headache. At the worst, I used to have a HM episode once every two weeks and each would last from 5 to 45 mins or so. The headache would completely disappear after 2-3 days, but it would become manageable after a good night’s sleep. I have changed my lifestyle to eat certain foods (mostly I avoid anything that has added sugar for personal health benefits, i.e. not to treat the HM) and try and get to sleep enough everyday. I now have 3-5 episodes per year, but I still don’t know the trigger(s). I believe stress is #1 and sleep deprivation is #2. Nobody in my family has any migraines.

  3. Christian Taccone on December 12, 2021 at 12:03 pm

    Thanks for creating this video – I really appreciate it.

  4. Wait What on December 12, 2021 at 12:04 pm

    I have sporadic hemiplegic migraines since 2012 where I have weakness on my left side (arm/leg/foot/face), black spots in my eyes sometimes partial visual loss on the opposite side of headache which is in my right eye and sometimes above my eyebrow I can have word finding and speech articulation issues as well saw a migraine specialist at UT SW Bardia Amirlak who recommended trigenial decompression surgery after I responded positively to a nerve block directly above my eye (that completely extinguished my migraine right on the spot but, returned a few hours later) . I opted not to get the surgery since the procedure is considered investigational and not covered by insurance which is at the time 30k. I have lived with migraines since I was in college which is 30 years ago and am finally seeking disability because of this debilitating condition (I also have several other medical diagnosis which makes it even harder to function day to day) living with now 10-12 migraines a month that last for hours currently my migraine I have now started 8 days ago…Emgaility/Amovig barely did anything to help me so tired of seeing commertial after commertial for migraine treatment with nothing working for me

  5. KINA DOE Doe on December 12, 2021 at 12:08 pm

    I have to have a low glutamate diet and high gaba. Magnesium, salt, L-thenonine, L-arginine, Taurine, ginger power Turmeric all help me.

  6. Genevieve Columbo on December 12, 2021 at 12:13 pm

    Thank you for sharing! I have HM and it took me 3 years to achieve a diagnosis. It would be good to connect!

  7. Cal Mit Mit on December 12, 2021 at 12:16 pm

    I have HM but I was diagnosed with a functional disorder at first.

  8. Fixing Fixation on December 12, 2021 at 12:21 pm

    I am a 29 year old male. Tuesday my fiancée rushed me to the emergency room with full stroke symptoms. Numb from my forehead to my toes and struggling to speak. All tests are good, discharged Thursday with a diagnosis of a complex migraine. Today is Saturday, I still have light numbness on my left side (nowhere near Tuesday) and a splitting migraine ONLY on the left side of my head. I would love if you could contact me and maybe aid in my diagnosis planning.

    Last year I experienced something similar to this but I had seizures, not stroke symptoms. Again – complex migraine.

    Something in my late teens I experienced stroke like symptoms and was temporarily paralyzed on my left side. Got up off the couch, walked 15 feet and made it up about 5 stairs and I froze. Hit me like the flip of a switch.

    Hospital visits and repetitive testing kind of hurts the whole “make a life for yourself” plan lol. Any help is greatly appreciated

  9. Tamara Kidd on December 12, 2021 at 12:28 pm

    I have FHM. Happy if you connect with me. I’m in multiple Facebook groups for SHM and FHM.

  10. Bethany Bouley on December 12, 2021 at 12:29 pm

    Ive had hemiplegic migraines all my life, my first one at just 5 or 6 years old. Nobody in my family has these so its not familial for me. I get the aura lights first, everything gets extremely loud, i lose feeling and use in half of my body from my head to my toes, even down my throat and tongue. After this i have trouble speaking words, one time i couldnt speak at all like a baby, no words would even come to my mind and it took me 3 days to speak somewhat normally. I would also get extreme vomiting and heaving and the pain, unbelievable pain sets in. When i was a teen i would end up in the hospital with multiples, all the symptoms washing over my body in waves, up to 8 in a single day and every cycle the headache would get worse. My whole body would be numb and i would have to leave my body almost in order to survive these episodes. I was always given oxygen which stops the multiples, a strong nsaid injection, morphine, anti vomiting and iv fluids. The older i get the less i have them. I also happen to be allergic to triptans, i have a HORRIBLE reaction to those drugs. Anti depressants and beta blockers didnt work for me either, mine are related to my hormone swings, but people with this rare type of migraine should NEVER take birth control, its too dangerous for us to have estrogen or progesterone and can actually make your migraines much worse, our risk for stroke is high.

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