Hemiplegic Migraine

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Hemiplegic Migraine
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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.
#familialhemiplegicmigraine
#HemiplegicMigraine

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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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