Hemiplegic Migraine

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Hemiplegic Migraine
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Thoughts about Lyrica

Hi there! My name is Robbin and I’m new here. I’m wondering if anyone here takes or has taken Lyrica ? And what are your thoughts on it for #HemiplegicMigraine and/or #Fibromyalgia ?
I’m currently in a drug study for fibromyalgia and metformin so I can’t take it until I’m finished with the study. (Pretty sure I got the placebo 🙄) I don’t like taking meds - most affect me strangely and most side effects are things I already have from Fibro - so what’s the point … I was on a drug for my heart (I have a PFO) that was helping with my hemiplegic migraines and Fibro. But have had to get off of it because of a bleeding ulcer, and have had a long and major Fibro episode since. I know we are all different, but I’d love and appreciate hearing how lyrica has helped or not helped.
Thanks so much for having this space to learn, share and question. 💕

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I have polarized sunglasses at last to help my chronic migraine # at last. When I’m feeling a little better, I want to get outside in the early spring sunshine and look for spring shoots and flowers. #HemiplegicMigraine

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New here!

Hi! I joined last night. My migraine is developing from hemiplegic to daily aura w/ hallucinations of clouds and gold lights. Also have ankylosing spondylitis. Then last week I got a positive ANA IFA on my blood work, but no communication from my doc. Needless to say my anxiety/mental health is going through a rollercoaster. Yay.
#HemiplegicMigraine #AnkylosingSpondylitis #Anxiety

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😬Our ‘Public Persona’😬

This is exactly what I, and countless others, do everyday - we put up a ‘public persona’ to hide what we’re truly going through. We pretend that we aren’t: in #AGONY or #depressed or #exhausted or #anxious . We pretend because we are #scared of how others would treat us if they really know what we were going through. The thing is though, by pretending we are something we’re not, we are giving ourselves more #Stress but also denying someone the opportunity to help us deal with the things that are really going on in our lives.
#itsokaynottobeokay #itsoktoneedhelp #ChronicIllness #chronicillnessawareness #ChronicPain #chronicpainawareness #mentalhealthmatters #MentalHealth #MensMentalHealth #CollegeMentalHealth #MentalHealthAwareness #Disability #IntellectualDisability #DevelopmentalDisability #InvisibleDisability #disabilityawareness #invisibleillnessawareness #FunctionalNeurologicalDisorder #FND #FNDAwareness #JointHypermobilitySyndrome #ChronicMigraineSyndrome #ChronicVestibularMigraine #HemiplegicMigraine #Migraine #BipolarDepression #ChronicDepression #Depression #ChronicFatigue #Anxiety #SensoryProcessingDisorder #BrainFog #PanicAttacks #PanicDisorder #notalone #BeYourself

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Takes me by surprise

I just spoke with my neurologist letting him know that hemiplegic migraine and dystonia were tolerable this month till it wasn’t! A few hours after discussing supplements, etc, I sit in my sofa ready to unwind and watch a little TV. Out of the blue, I felt off, my left side got heavy and was unable to move. My face drooped and was unable to talk.

After a few days of good health, I got struck with hemiplegic migraine again which led to another dystonia attack! Boy, these things always take me by surprise, but my dog, Rondo is always ready to be by my side.💜

#ChronicMigraineSyndrome #IntractableMigraine #CervicalDystonia #DopaResponsiveDystonia #HemiplegicMigraine

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What do you look for in a friendship as a person with migraine?

I have a very firm belief that chronic pain changes the entire landscape of friendship in ways that no one can fathom until they themselves become that chronic pain patient.

In my experience, a condition like migraine inherently makes people like me less reliable and less communicative — but neither has been my choice. I know in my soul that I’m still worthy of connection, of love, of support.

Here are my top three qualities that I’m looking for in a friend these days:

💛 Patience
💖 The ability to sit with harsh truths
❤️ Thoughtfulness

What about you?

🎙️ P.S. A few Mighty staffers sat down with me to explore this concept in this week’s newest Table Talk episode! I hope you give it a listen: anchor.fm/mighty-table-talk/episodes/Getting-to-the-Heart-of...

#mightywithmigraine #Migraine #HemiplegicMigraine #Fibromyalgia #ChronicPain #ChronicIllness #Disability #RareDisease

Getting to the Heart of Why Health Can Cause Friendships to Fade by Table Talk With The Mighty

A hard truth when you live with a mental or physical health condition is that not every friendship is going to last forever. In this episode, Kat, Ashley, and Camara dig into friend break-ups, boundaries, and a reminder that we’re all worthy of feel-good friend love no matter our diagnoses. This episode is made possible by Mighty With Migraine. Subscribe to the newsletter here https://bit.ly/migraineinbox for more conversations like this one.
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Have you or anyone else you know experienced a hemiplegic migraine attack?

You may have seen actress Tori Spelling speak about her daughter Stella’s recent stint in the emergency room. Stella was discharged with a diagnosis of hemiplegic migraine, a rare type of migraine that causes symptoms similar to those of a stroke.

While I do not have hemiplegic migraine, I have experienced migraine attacks that caused me to slur my speech, become quite confused, and feel weak on one side of my body — on top of all my usual symptoms. Needless to say, these symptoms are a bit terrifying when they occur and usually put me in the ER.

Have you or anyone else you know experienced a hemiplegic migraine attack? What was it like?

P.S. To learn more about hemiplegic migraine from a Mighty who lives with the condition, check out this story: When Hemiplegic Migraine Sent Me to the Emergency Room

#Migraine #HemiplegicMigraine #RareDisease #ChronicIllness #CheckInWithMe

When Hemiplegic Migraine Sent Me to the Emergency Room

"I managed to mumble an unusual request that scared my family. They went into emergency mode and rushed me to hospital."
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Chronic Fatigue

Hi I have HM. I have three a week on average and diminshed consciousness is part of my aura. I am ok flunazrine and botox. Recently I have not been recovering properly. Does anyone else wonder sometimes whether they have chronic fatigue syndrome caused by HM. I have been bedbound since 28 Dec. Does anyone know good tips/books which can help me out of this hole. Thank you so much.