Hemiplegic Migraine

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Hemiplegic Migraine
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    The Incandescent Light Bulb Ban Harms Many

    I have photophobia and over 10 years dealing with it, I have found incandescent bulbs are the only light I can tolerate for long periods. This year, the US president, Joe Biden has pushed forward on a ban of all incandescent light bulbs in an effort to support reductions in carbon emissions. I am terrified of this because it means I will never be comfortable in my own home anymore. I cannot tolerate the greener options available (fluorescent and LED) and being around these lights cause me significant pain and mental distress to the point where I become non-functional.

    Does anyone know where I can start to get the needs of people with photophobia and other visual sensitivities heard on this issue? I was thinking about contacting an optometry group, a news station, The American Foundation for the Blind, The ADA, writing a letter to local state reps, even the president.

    There isn't really a group specifically for photophobia and light sensitivity and our needs often go overlooked because eye problems that require brighter lighting are more common.

    Also I don't have all the illnesses I hashtagged, I just wanted to bring other people with conditions that can cause light sensitivity into the conversation.

    #Photophobia #EhlersDanlosSyndrome #Autism #Migraine #ChronicMigraineSyndrome #HemiplegicMigraine #ChronicVestibularMigraine #Dysautonomia #AutonomicDysfunction #Meningitis #BrainInjury

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    Gastric emptying study

    Hey everyone. I have a repeat gastric emptying study tomorrow to see how my #Gastroparesis is faring. There’s been a distinct deterioration in symptoms and tolerance of oral intake over the past 6-12 months and we’ve been discussing an nj tube but gastro doesn’t want to do it without clear evidence as my weight is fairly stable due to consuming Coca Cola for energy. My hospital uses egg white omelette and toast for it. Last time I had eggs it went badly. I couldn’t poop for 4 days, had severe distension and pain, and then had a rather embarrassing accident on the way home from a family visit. So I’m dreading it! I’m also dreading it coming back no worse than last time and having to continue this cycle of trying to force enough calories in before I feel too sick to get anything else in. Then being in pain and bloated and feeling crappy. My muscles are so weak from 11 months with very minimal protein intake 😭 #hypermobileehlers-DanlosSyndrome(hEDS) #Gastroparesis #AutonomicDysfunction #HemiplegicMigraine #ChronicPain #ChronicFatigue

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    It happened again!

    My body seemed to be having a typical hemiplegic migraine. Lost left leg function,then left arm, then left side of face drooped but I took Ubrelvy and it clears this in about a half an hour. It didn’t. I took a second one. It didn’t work. My husband and I had an agreement to go to the hospital if this ever happened like this cuz it never had. We were concerned cuz my neuro had said it looks just like a stroke and you’re betting it’s not and usually you’re right but 1 in a 100 times? Maybe it is. When we go to the hospital, they saw me and called a stroke code immediately and this time I really wasn’t sure what was going on. But, thankfully, it wasn’t a stroke. They gave me fluids and migraine meds and a few hours later, I started getting strength back in my hand and my face started to come around. They wanted to keep me there but I was on the road to well and they didn’t have any other tests to run. They were just concerned about the fact that I couldn’t walk but that is not an uncommon issue for me with all the other conditions I deal with like myasthenia gravis and POTS. I go through all kinds of stuff ALL the time, so I went home. Crazy day…. #HemiplegicMigraine #ChronicMigraineSyndrome #ChronicIllness #Stroke


    Hi! I’m new here

    I’m here because I’m interested in learning more from people who are dealing with similar things. #PosturalOrthostaticTachycardiaSyndrome #HemiplegicMigraine #Migraine #ChronicPain

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    Moving with Migraine

    As frequency and severity increases, how does one successfully unpack a house for six people, let alone keep it clean?

    I’m drowning in cardboard and guilt.
    #HemiplegicMigraine #ChronicIllness


    Twice in the last month, I lost the ability to walk for an entire day because my whole body would start shaking so hard that I couldn’t maintain balance, even with a walker. One time it was after a short amount of exercise which I hadn’t done in a long time and I almost fainted when I stood up and then I lost function. The second time, I had a hemiplegic migraine and took medication for it that I’ve used for a few years and never had any issues with and I had the same shaking standing and attempting to walk was a problem. I regained a little bit of function by bedtime but not much. The next morning, I was ok again. Is this a symptom of POTS? I have been diagnosed with it. Has anyone had this type of experience? #POTS #AutoimmuneAutonomicGanglionopathy #AutoimmuneAutonomicNeuropathy #MyastheniaGravis #ChronicIllness #Dysautonomia #AutonomicDysfunction

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    Train your Eyes

    Whether you have a chronic illness, emotional issue or any other struggles in life, it is very easy to feel defeated and to constantly see the ugliness of life. However, it is because our lives are full of trials and trepidations that it is vital that we train our eyes to see the beauty that surrounds us. Because my chronic illness has robbed me from many things I love, I intentionally look for ways to see beauty. I find beauty in writing, reading and taking photographs. Would you believe that the first thing I took a photo of (photography art in my mind) was a mold on the ground?🙈 For some reason, the mold intrigued me. There was something in the way it existed, the color and the shape, so I snapped a photo. After, I edited, it, no one would have been able to tell that it was a mold. I wish I had kept it. It would have been really amazing for you to see.

    Anyway, moral of the story is, beauty surrounds us everyday. However, we need to be intentional and train our eyes to see them.
    Here’s one for you all! #Beauty #MentalHealth #ArtTherapy #migrainesufferer #HemiplegicMigraine #warrior #dystoniawarrior #Dystonia #Serenity #ocean

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    Thank you for joining us this week as we shared some of our best migraine content for National Migraine & Headache Awareness Month!

    This week I shared some of our best migraine stories, our amazing writers in the migraine space, and even heard from some of you about your experience.

    All of these resources will be bookmarked in the ‘Saved’ section in Mighty With Migraine. Feel free to revisit them anytime as you need.

    I hope one of these resources gave you tips and resources, as well as new writers who can relate to your experience.

    #Migraine #MigraineWithAura #ChronicVestibularMigraine #FamilialHemiplegicMigraine #HemiplegicMigraine #HemicraniaContinua #Headache #ChronicIllness #ChronicPain

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    Have you read these top stories about migraine?

    While we have countless stories focused on migraine, these three have truly resonated with many community members. But don’t let me tell you about them - I’ll let them speak for themselves:

    10 Things I Wish People Knew About My Migraines

    “I’ve stuck my head in the freezer.

     I’m not kidding. I have literally placed my head in the freezer. Cold works for me. Heat works for others. (PS: I’ve found better options than putting my head in the fridge)”

    It's Never 'Just a Migraine'

    “Please don’t assume that, because I’ve had attacks more often than not, I’ve grown accustomed to the pain. For many of my migraines, I can get on with my life by taking a pharmacy’s worth of painkillers, anti-sickness medications and other drugs. You may know me and not realize something is wrong, but I can assure you when I actually have to take time off school or work, or cancel plans, the pain is unbearable.”

    33 Things People Don't Realize You're Doing Because of Migraine

    “Blankets over all the windows. My dad came over the other day and said ‘Jeez, you live like a vampire,’ and I could only shrug. Not by choice, Dad. I miss open windows and sunshine.”

    Which favorites would you add to this list?

    #Migraine #MigraineWithAura #ChronicVestibularMigraine #FamilialHemiplegicMigraine #HemiplegicMigraine #HemicraniaContinua #Headache #ChronicIllness #ChronicPain