In case of emergency…

Day 3. Meds are failing. I’ve even resorted to my emergency meds.

Sometimes I get this bright idea to describe what I’m going through… like maybe people will find it interesting. And then I think: 🤔 Who really cares?

This episode began Friday and I posted it on social media:

I was able to take most of the day, pull it together and show up for my kids’ production that night

I can’t really scan or search the theater when I’m migraining (or ever)… it’s too big, too bright, too many people. But thankfully, some friends approached me and I could connect with them. 😊

One mama had seen my post from earlier: “How are you doing?” she asked, hugging me. “I’m better… for now. Thank you so much for asking.” “I think about you all the time, you’re so strong,” Shannon said. This leaves me breathless a moment, stunned by kindness and I can feel the tears prick at my eyes. “I don’t feel very strong. But thank you. It all feels like a time and life suck… and so utterly ridiculous.”

The next day was the worst. There was no way I was attending the show. My migraine was an 8. The meds that weren’t failing were only bringing me to a 7. I stayed close to bed… puttering throughout the day… a little here and there. I showered and dressed.💪 But I could not go anywhere. As I fell asleep last night, I felt hopeful the migraine episode would break overnight.

Well… not so. I woke at 8 with a knife in my left brain, stumbled to the freezer for ice, threw back a maxalt and went back to sleep. At 11 I woke again. The maxalt had failed; migraine still there. It’s at about a 6-7 today. My body is burning up, a fine blade still lodged in my left brain. I have aphasia, confusion, lethargy, I’m incredibly short tempered and nauseous. My life is lying in this bed. It’s confounding. It’s ridiculous.

Tomorrow it will break. I’m sure of it.🌞

I love Fridays

Guess how I know it’s Friday?😀
The earthquake through my brain is about to fracture my skull and spew molten lava. I’m hungry and nauseous, the dark is too bright, the silence too loud and everything throbs with movement… #Migraine ! The Friday stress letdown trigger…freaking Chronic Migraine.😕🤯 Good morning, World!
#ChronicMigraine #MigraineAwareness
djk #MyBeautifulMigraine #speakyourmigraine

60 Minutes

I must share!
There was an HOUR today, 60 MINUTES, when I felt….
This is the most exciting thing ever; I haven’t had an hour in soooo long. I swear I could die from HAPPINESS!
It’s all GRAY outside, but my heart is beaming with a warm wonderful sun!🌞
I love everyone so much!!!❤❤❤❤
#ChronicMigraine djk #MyBeautifulMigraine

Hold on to HOPE…2019

Hold on to HOPE in the world of MIGRAINE news:

This year we have seen the FIRST EVER medications designed specifically for migraine prevention, which is a huge step forward for treatment and hopefully ultimately for a cure to this disabling neurological disease.

However, along with the excitement and renewed hope has also come disappointment and discouragement for those who have either not been able to access the medications yet, not found them to be effective, or had intolerable side effects. There is a huge mix of hope, excitement, fear, disappointment, frustration & more.

BUT, this is the good news. We are in a new era of migraine research and treatment finally, and there are several more migraine-specific medications that are in the clinical pipeline. For those who don’t know, the clinical pipeline refers to medications currently being researched & tested. Now more than ever 2019 should be a year of hope for us! Here are just a few of the medications that are in the pipeline:

Eptinezumab: migraine preventive CGRP inhibitor Administered via IV in your doctors office once every three months. Produced by Alder Pharmaceuticals. Expected to apply for an FDA license anytime now!

Rimegepant: migraine abortive AND preventive CGRP antagonist, oral tablet taken as needed or daily. Produced by BioHaven. Expected to apply for an FDA license in the first half of 2019. Also working on an intranasal version that’s still in trials.

Ubrogepant: migraine abortive CGRP antagonist, oral tablet taken as needed. Produced by Allergan. Expected to apply for an FDA license early 2019.

Atogepant: migraine preventative CGRP antagonist, oral tablet taken once a month. Produced by Allergan. Expected to apply for an FDA license in 2019.

Besides these new medications in the pipeline there are also other CGRP medications in earlier stages of testing as well as other non-CGRP medications and medical devices in various stages of the process such as Lasmiditan, PACAP-38, Neurolief, Nerivio Migra & more!
(Shosh Rachel)

#ChronicMigraine #CGRP

9 Things Chronic Migraineurs Want You to Know-

Imagine a job that you could never leave, not even for a short vacation. A job that is on your mind every moment of every day. A job that wakes you up in the middle of the night demanding attention. A job that causes severe physical and mental anguish, wreaking havoc on your body and your life. Now imagine having to do another job on top of that, like raising children or holding down a paying job. And add another job on top of that, one that requires hours of doctor’s appointments and treatments, pharmacy trips, fighting with health insurance companies, and research each week. The physical symptoms are enough to cause exhaustion, add all the other responsibilities on top of it and we’re pretty well wrecked.