Chronic Vestibular Migraine

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

Living with a health condition can be frustrating and unpredictable even on the "good" days. When the "bad" days become more frequent or even unbearable and you struggle to get out of bed, are forced to cancel plans, or miss work you might decide that you need a little extra support through treatment.

What made you seek treatment, either for the first time or after a length of time without treatment? Share your defining migraine moment in the comments below.

#Migraine #Fibromyalgia #ChronicPain #ChronicDailyHeadache #ClusterHeadache #SUNCTHeadache #ChronicVestibularMigraine #ChronicIllness #Endometriosis #mightywithmigraine

Migraine treatment types and experiences can vary from person to person. You may have tried (or are currently on) acute treatments like triptans, nerve blocks, or acetaminophen. Or perhaps you are currently trying (or have tried) a type of preventive treatment like CGRPs or physical therapy (like prescribed neck/shoulder exercises).

What treatment experiences did you have that did not meet your expectations? In what ways, if any, have you been pleasantly surprised? Share in the comments below. ⬇️

#Migraine #Fibromyalgia #ChronicPain #ClusterHeadache #SUNCTHeadache #ChronicVestibularMigraine #ChronicIllness #Endometriosis

Balancing self-care and daily responsibilities while managing the symptoms of migraine can be challenging, especially when you’re experiencing stress.

How do you relieve stress as it relates to your condition? Let’s share and help one another in the comments below.

#Migraine #Fibromyalgia #ChronicPain #ClusterHeadache #SUNCTHeadache #ChronicVestibularMigraine #ChronicIllness #Endometriosis #mightywithmigraine

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

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

Today, I wanted to highlight the fantastic Super Contributor, Amelia Blackwater!

Amelia is so open about sharing her experience around chronic illness, mental health, disability, and autism, but today

I wanted to highlight a story she’s written about migraine and one very relatable one to those who live with chronic pain.

Here are two stories that will make you feel seen by Amelia with a little snippet.

Your Migraine Pain Is Still Valid Even If You're Smiling Through It

“Pain can make a person say and do things that they don’t mean. There have been times it was easier to use you as a release for my pain and frustration than to try to let you in. I’m sorry I have pushed you away. Hell, I’m sorry I have pushed you away and then blamed you when you gave me the space I made you think I wanted. I don’t need more space. What I need is to know that it’s OK to be vulnerable. I know now that you’ve been trying to let me know this for so long.”

To My Husband, Whom I’ve Hurt Because of Being in Chronic Pain

“There are two photos of me; both of these photos portray me with an extremely painful migraine. One of them I’m smiling looking like I’m fine and the other I’m frowning, eyes are tearing and my hand is to my temple. The first photo was from work. I was smiling and laughing, masking the pounding and throbbing migraine pain.”

Be sure to give her a follow on her author page here: Amelia Blackwater (@amelia-blackwater)

Share what other topics you’d like to see her or other migraine writers cover in the comments!

#Migraine #MigraineWithAura #ChronicVestibularMigraine #FamilialHemiplegicMigraine #HemiplegicMigraine #HemicraniaContinua #Headache #ChronicIllness #ChronicPain #Pain #Autism #MentalHealth #Disability

For many with migraine, it’s not a matter of if one will strike, it’s a matter of when.

There is no one-size-fits-all when it comes to preventative treatment or active management, so I wanted to highlight this list of ideas you could put in your own toolkit that may help.

Here are a few ideas from a Mighty story:

💪 Easy-to-access protein & nutrition

🔉 A white noise machine

🧠 A headache hat

You can read the full list of recommended items along with how they can help here: 7 Things You Should Add to Your Migraine Toolkit

What else would you add to your own toolkit?

#Migraine #MigraineWithAura #ChronicVestibularMigraine #FamilialHemiplegicMigraine #HemiplegicMigraine #HemicraniaContinua #Headache #ChronicIllness #ChronicPain #Selfcare #52SmallThings

Today, I wanted to highlight the fantastic Super Contributor, Megan Glosson!

Megan has some fantastic stories in other health spaces such as BPD, however today I wanted to highlight some of the stories she’s written about migraine.

Here are two stories that are must-reads from Megan with a little snippet:

6 Migraine Management Apps That May Help You

“I sometimes think, ‘Man, I wish there was a way to track my symptoms so I could figure this stuff out sooner!’ Well, it turns out there are ways to do this, and I’ve just been living in the dark ages of migraine management without any knowledge of the dozens of smartphone apps out there specifically designed to help people like me track migraine symptoms and management.”

Understanding the Types of Migraine Medications: A Guide for...

“If you ask me, medications can be one of the most confusing parts of any health condition. However, migraine medications can be especially confusing because there are different types of medications for different reasons, and sometimes people take multiple medications depending on the day. Plus, as more doctors spend time researching migraine, more medications hit the market, which throws everything off-kilter.”

Be sure to give her a follow on her author page here: Megan Glosson (@megan-glosson)

Share what other topics you’d like to see her, or other migraine writers cover in the comments!

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