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Isolated man holding left half of his face in darkness. The left side of his face is glowing red and looks painful.

What It’s Like to Live with Hemiplegic Migraine

Lately, the first obvious sign of a cluster of migraines coming is being very confused a lot of the time, feeling like I am in a maze of distorted mirrors at the fair. But unlike the fair, there aren’t sweet treats, fun rides, or livestock to pet.

Noticing aphasia

I catch my aphasia. But it’s usually far too late and people have started to notice. I notice it just as much when I’m talking to my partner as he does. We’ve been together for about a year, so he’s learned how to sort of translating my aphasia when I am in the thick of symptoms.

Symptoms but no headache

A lot of times, I will have all the symptoms of a migraine, but never experience the headache. This can be hard to explain to people, especially since the other symptoms really hold me back from doing certain things I like to do on a daily basis. Lately I’ve been having a lot more issues with auras, running into things, peripheral vision, and numbness to the point where I am unable to walk. Depending on the day, it will only hit one side at a time. It’s been transitioning to the other half of my body, which is cause for alarm for me. Never knowing when the other shoe will drop.

Living with hemiplegic migraine

I live with Hemiplegic Migraine (HM), which randomly gives me symptoms like a drooping face, pins and needles feelings at the most awful times, and migraines that will not let up. I’ve been constantly worrying about my worsening of symptoms. Normally the pinching feeling that travels up my arm to my neck and hits my feet is painful. This is a whole different type of painful. It’s also mentally painful wondering what body part will be affected next and how bad the symptoms will ultimately become.

Energy drain

It’s summer now. I can’t say for certain that I notice one season affects me more than another, but I know the change in seasons and barometric pressure are indicators for me. Laying in bed in a pool of sweat on a hot summer day is not necessarily how I’d like to spend the rest of my summer. I’d like to forget the fact that I have migraine and go back to just taking the prescription medication I’ve taken for nearly 4 years without many ups and downs. With HM, I feel my world getting smaller, along with my peripheral vision. Outings to the store and doctor are tasks that suck up all of my energy, leaving me wondering if I’ll have enough energy to take a shower at the end of the day.

How do you manage worsening symptoms, aside from calling your specialist to let them know what’s been going on?

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Migraine.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • tbird
    6 days ago

    I’ve been told that migraines are caused by blood vessel dilation or constriction..I have Hemiplegic Migraines. Through what little knowledge I have gained in my career training, how can (A) blood vessel constriction or dilation in one lobb of the brain effect all senses throughout the brain and only effect one side simultaneously? I think something is missing in the puzzle. Even tho I used to be an EMT, Police Officer and was working toward my Therapeutic Massage licence I was labeled a pill seeker and after being told i was allergic to tordal the Doc. From the same facility gave it anyway and I couldnt move and caused the migraine to get worse at that point. I bring all of this up for the over all reason of ( I dont think doctors understand the severity of what we are dealing with) and are quick to make false assumptions. Now, Due to a car wreck that did my neck in with 2 fractured vertebra along with 2 spinal inpengments after surgery and now I’ve lost all of my career choices I’m on pain meds daily… what I find interesting is my HP migraines have decreased significantly… anybody know why? Most of us have probably learned a lot about neurology through our experiences etc. But as I explained above in what little I’ve gained or how I understand it.. it just doesn’t add up to me and I think something is mossing

  • Theresa
    2 weeks ago

    In the middle of a hemiplegic migraine. So tired. Rain due in the morning. Barely functional. Pain in left upper back, nauseous and can’t regulate my body temperature. This truly sucks.

  • DonnaFA moderator
    2 weeks ago

    So sorry to hear that you are suffering, Theresa. I’m sending all good wishes for a gentle night and a better tomorrow. -Warmly, Donna (Migraine.com team)

  • ndibari
    2 weeks ago

    Have you ever had dibilitating pain on either side of your eyes or head where it feels like the throbbing pain is about to implode out of your eye or head? If not, it pales in comparison to what some migraine sufferers experience. Even numbness isn’t as painful or Nausea driven like the symptoms I’ve described that most sufferers experience.

  • ndibari
    2 weeks ago

    Have you ever had dibilitating pain on either side of your eyes or head where it feels like the throbbing pain is about to implode out of your eye or head? If not, it pales in comparison to what migraine sufferers experience. Even numbness isn’t as painful or Nausea driven like the symptoms I’ve described that most sufferers experience.

  • tjbtaylor9
    4 weeks ago

    I have mixed migraines and Hemiplegic Migraines.

    The first thing I’d do is make a medic alert for your purse or wallet and get a Medic Alert necklace or bracelet that says: No Triptans.

    Triptans increase your stroke risk. I took a hard hit to my brain and heart and was told next time I used them could be fatal; that hit was NOT an allergic reaction. I had taken them before for regular migraines. Triptans work by constructing vessels. Hemiplegic migraines are constrictive in nature so the Triptan further constricts the vessel; causing a potential stroke risk.

    Print an Emergency information document for your wallet:

    Medic Alert:

    Hemiplegic Migraines: If I am found staggering, confused or appear to be under the influence of drugs: call 911 Medical Emergency

    You don’t want to be arrested and have treatment delayed.

    List your contacts and all of your medicines and allergies as well as repeating: No Triptans. You may have an attack where nothing makes sense and neither do you; it’s important to have contacts to talk for you.

    I’ve dealt with this for forty years and do have deficits; my life is good anyway. Learn your body, listen to it, don’t feel guilty for saying no, learn your limits, take time every day to relax and learn how to decrease your stress response; you create the space you live in. I fight back until I regain what I lose in the aftermath of attacks; I come back swinging every time. I work around my limitations; there are things I love I can no longer do. I found other things to love instead. Your brain has a remarkable ability to heal and finding little moments of joy each day will give you contentment on the bad days. (You can at least enjoy the comfort of your pillow and blankets in your cool, blacked out room.)

  • #purpleproject moderator author
    3 weeks ago

    This is all really great. You sound like you you know your body extremely well & are very proactive. Thank you so much for your comment & what works for you!
    Thanks for being a part of our community,
    Kelly, Migraine.com Team Member

  • Kristallia
    2 months ago

    I have watched a video of yours and found this website with you speaking about this. I have had the exact same symptoms as you for about 5 months now. I have been passed around to soooo many specialists. I cant get the help I need. It also feels like the circulation is now being cut off on my left side that my arm and hand turned purple while at the Neurologist today. Oh the pain and suffering. Is there any way to speak with you privately? I want to know how to steer doctors in the right direction for me. I would like to know what meds have helped you. I have so many allergies to medication that doctors dont want to deal with me. My daughter has been convincing me to get a medical card. Im losing my home of 17yrs and my job because Ive been unable to work.

  • annette60
    2 months ago

    I have suffered with Hemiplegic Migraines for about 13 years. Before I get one I notice hot spots in my head an aura and stars in my vision and slight pressure, but never pain. If I take two Excedrin Migraine as soon as I notice the signs I can stop it from even happening. I have ignored the early signs and always end up with my left side numb and difficulty walking and my left arm hugging my upper body. This can last from hours to a few days. Even if I take Excedrin Migraine after the event starts. I have never needed anything stronger than an over the counter drug thankfully.

  • tjbtaylor9
    4 weeks ago

    I am admitted and given IV steroids for three days for severe attacks. They help my brain recover faster. Does that help?

    I use Ketolorac 30 mg/ ml IM injection for severe attacks; use to prior to losing your ability to walk- you want to limit your use to no more than 6/ month preferably three.

    Also, my first neurologist said chew two aspirin for severe attacks prior to going to the ER. I only go to the ER when I lose the ability to walk; I typically concurrently have confusion and speech issues during those attacks.

  • Snoopy111
    2 months ago

    I have 4 lesions on my frontal lobe of brain, due to this type of condition. Onset…When I was 5yrs old. I’m 53yrs old now. I literally struggled my whole life without an accurate diagnosis. I get stroke like symptoms as well. Being that I’ve been a Dental Clinician for 30yrs…Had to retire 2yrs ago due to these horrific symptoms. It’s very challenging, as most people still do not know this type of affliction. It is and has been so challenging to navigate thru life knowing and feeling the affects of being impaired by this devastating illness. SSDI just recently added this type of migraine as a recognized disability.

  • tjbtaylor9
    4 weeks ago

    I have Hemiplegic migraines and went on social disability when I was forty four. I also have Fibromyalgia that was never treated. Now that I’m on Lyrica my peripheral neuropathy is gone and I am feeling a lot better. It’s the perfect storm. Fibromyalgia is often undiagnosed- it causes wide spread pain and is linked to Migraines, IBS and Major Depressive Disorders. It took them forty two years to figure this out.

  • Peggy Artman moderator
    2 months ago

    @Snoopy111,
    Thanks for sharing your story with us. Hemiplegic migraine is a disabling condition and there are a lot of people who can’t imagine what it is like living with this type of migraine. I’m sure that must be frustrating.
    ~Peggy (Migraine.com team)

  • Snoopy111
    2 months ago

    I’m just so glad there is a “name” for this type of migraine. In 2003, I was “misdiagnosed” with MS. I took injections of MS meds and of course, symptoms only worsened, as I was being treated for a condition that I do not have. Finally, in 2007 I demanded a spinal tap, which confirmed I do not have Multiple Sclerosis. That was the day I started to “live” again. DRs did not understand my stroke like symptoms, mixed up words, slurred speech, muscle weakness, along with the lesions on my brain. I pray that no one has to go thru the anguish of a misdiagnosis like myself. I was not informed of the type of migraine I suffer from until 2016. It was at that moment, everything made sense to me. I now watch myself closely, So life doesn’t “spin” out of control during an onset of HM. Thank u for this informative group! Hope this helps another person that may actually have this affliction, rather than live for years with a misdiagnosed illness. I still don’t know how I survived poisoning my body with MS injections and meds that were only worsening my true condition. Education is definitely the key to living with any illness. My life is much better “knowing” the what and why these symptoms are happening to me. I can handle what I know is true. Always get a 2nd and 3rd opinion before accepting the fate of an illness that one may not have.

  • Amy Coon
    2 months ago

    I’ve never heard of this and migraines had ran in my family for generations now. But this is exactly how ive felt for a few years now. I feel like my Dr is a RX writter instead of a listening Dr. But I’m just to tired to change, have hope, or research. I don’t know what to do now

  • Peggy Artman moderator
    2 months ago

    @Amy Coon, welcome to our community forum. If you haven’t already, you can sign up for our newsletter. You will find a lot of information that way. You can also look around this website to read older articles.

    Let me know if you can’t find what you need.
    ~Peggy (Migraine.com team)

  • DebbieN
    3 months ago

    As I’m reading this it’s as if I had written myself. Took awhile to get others to understand that I wasn’t having a stroke.

  • paulapp
    3 months ago

    Maybe that’s not really your diagnosis. Very familiar to myasthenia Gravis

  • dnllmnq
    3 months ago

    When having the stroke like symptoms with HM do they go away or is it possible to have them permanently?

  • captain soprano
    2 months ago

    If they don’t go away it’s not a hemiplegic migraine. As I understand it the stroke like symptoms should go away in about 15 minutes. ( I’m an RN with this problem)

  • AngelBunni
    3 months ago

    I had a stroke consult one of my many times in the ER. The dr told me that I likely have a blood vessel spasming in my brain. He prescribed me .5mg of ativan to take for my HM symptoms. It has helped stem the HM symptoms tat resemble stroke for me. Does not help with pain, but the severity associated with the HM is better.

  • tjbtaylor9
    4 weeks ago

    Do you use ketolorac 30 mg/ml IM injections for severe attacks? It helps the pain and has greatly reduced my hospital admissions.

  • glassmind
    3 months ago

    Thank you for sharing. I wish I could say I do manage worsening symptoms, but alas, they manage me.

    I recently moved and my new gp had the gall to say “I’m not sure you have migraine.”

    I’ve an appointment in a few days to discuss the providers I am seeking referal to (that I was previously under the care of).

    As the frequency of my migraines increases and my quality of life diminishes, having a new doc hold up care management only adds to the frustration and hopelessness I often feel.

    Here’s hoping for better outcomes for you, me, and everyone here.

    Hugs

  • captain soprano
    2 months ago

    Are you on preventive meds too, such as anti-seizure meds (e.g. Topamax), beta blockers (e.g.Propranolol), anti- depressants (e.g. amitriptyline) or CGRP’s. (E.g. Aimovig?).

  • glassmind
    2 months ago

    I have tried four preventatives without success. Sooooo many triggers! My migraines onset at perimenopause. And I have had both success and extremely negative side effects with imetrex. I recently moved and will be establishing with new providers later this month. We’ll see how things go.

  • captain soprano
    2 months ago

    Knowing your triggers is critical too… my doc is chief of neurosurgery at a pretty famous hospital and told me once the hemiplegic starts it’s going to happen nothing will stop it… never heard use of Ativan before! What good news! I just take Tramadol when headache starts , was told that for me at least being post menopausal and now 53 a Triptan such as Zomig or Maxalt or Imitrex is not advisable because of the risk of an actual stroke.

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