intractable migraine

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

I have a visual disability called oscillopsia, which in its simplest form manifests as bouncing vision. How I visually interact with the world directly correlates to my chronic migraine, so my eye doctor is a key member of my medical team.

🤓 Something new I’m trying out: Acuvue Oasys Max Daily Contact Lenses

💡 These lenses were specifically developed for “people with a digital lifestyle.” They are supposed to filter out blue-violet light from screens, fluorescent/LED lights, and the sun. Ideally, they can help migraine patients like me who regularly experience photosensitivity.

⚠️ So far, I’m cautiously optimistic. The lenses themselves are a little less wet than I was hoping for (which is important since I’m currently being tested for autoimmune conditions that can cause chronic dry eye), but they really do dim the world ever so slightly and looking at my computer hasn’t been as taxing lately. Ideally they’ll have a positive impact on my pain levels, but the jury is still out.

What about you?

#Migraine #IntractableMigraine #VestibularMigraine #ChronicPain #ChronicIllness #MentalHealth #Disability #RareDisease #Fibromyalgia

I was in the hospital yesterday for a planned outpatient procedure and since this wasn’t my first rodeo, I made sure to do a few things in advance to make the day go as smooth as possible. And gosh, what a difference it made! Here’s a few things I did:

🍦 I had a special pint of ice cream in the freezer to look forward to.
🛋️ I had a comfy station already set up on my couch.
💖 I had my support system in place for specific tasks and roles.

So that got me thinking a lot about what we each can do today to help ourselves out tomorrow. What’s yours?

#CheckInWithMe #MentalHealth #Anxiety #Depression #ChronicPain #Undiagnosed #ChronicIllness #RareDisease #Disability #IntractableMigraine

Mighty migraine fam, we’ve heard from so many of you about the importance of the relationship with your headache specialist or neurologist.

For some of you, your doctor is the only one who “gets” it. For others, doctor-patient communication is a frustrating experience. Share whether the above statement feels true or false to your medical care in the comments below.

#ChronicPain #ChronicIllness #IntractableMigraine #MigraineWithAura #HemiplegicMigraine #VestibularMigraine #Migraine #CheckInWithMe #mightywithmigraine #Fibromyalgia

Just this morning a likely well-meaning stranger on the internet (not here) told me that my migraine pain was likely the result of hypomagnesium and that I just needed to increase my intake to be cured! (Little did they know that I experimented with magnesium dosages for years and my stomach just couldn’t handle it.)

What was the last “cure” suggested to you for your chronic pain? Did you end up trying it?

#HemiplegicMigraine #IntractableMigraine #Migraine #Cure #ChronicPain #ChronicIllness #mightywithmigraine #Fibromyalgia #Endometriosis

He’s got bed head, but he’s the best comforter.
Thank you, buddy. I hope his picture leaves you with a smile.

Some people who love me know some of these, only my husband knows all of them.

I try not to overwhelm everyone about what is an overwhelming part of our lives, but this series on living with hemiplegic migraine is so well crafted and hits so close to our own experience, I thought those who wish to enter into ours at a deeper level may want to read it.

The issue of medication rationing is particularly striking, because no one wants to talk about it, or believe the choices we are forced to make, or that they would make the same should they find themselves in the same situation.

My team, which now includes more than 35 doctors nine years after diagnosis, has agreed to prescribe a 15 count supply of my strongest acute migraine medication. I can take a three count dose every three hours.

It takes a second grade education to realize, I could go through the entire month’s supply during a single attack if I choose to do so.

So, I don’t.

I was also warned not to use the Rx more than two days a week to safeguard against dependence, so I schedule my dosage dates. Each week I decide what days are the most important to live life to the fullest, be they my children’s birthdays, Christmas, or the day my son needs a new AFO. I won’t even discuss the side effects of neurological pharmaceuticals. The roulette played between symptoms or side effects is a dangerous gamble we are as powerless to overcome as gravity.

migraine.com/living-migraine/hemiplegic-experience-support

#Migraine #IntractableMigraine #HemiplegicMigraine #ChronicIllness #ChronicPain #PainMedication #SpecialNeedsMarriages #SpecialNeedsParenting