Headache on the Hill

Pinch me! I’ve been invited! 💜❤💜

Introducing myself to the other advocates…

Hi!👋 My name is Donna Kobayashi. I’m 47 and call amazing Austin, TX my home. Being a part of Headache on the Hill is an honor beyond honors! It is my first year, and I find myself among some of the greatest migraine advocates in the world. I am in no way worthy of being here, but I will endeavor everyday to be so!
I’ve been a migraineur all my life. My mom was able to identify one of my first migraines at age 6 because she was a migraineur. And so was my dad. And both sets of grandparents. And one of my brothers. All episodic.
I stayed episodic for many, many years and was just fine! I became chronic in my later 30’s. I was completely alone and felt freakish, and watched in horror as my life became unrecognizable. No doc really explained that chronic meant forever and there was no cure. There was “managing” and that was experimental, drawn-out, expensive, often disappointing and sometimes unavailable, and mentally and physically exhausting. It was 6 years of isolation, pain, and whacky symptoms before I connected with the chronic migraine community and support. I was suddenly not alone. And I was not a freak! I’m sadly no longer able to work my beloved career as a Registered Nurse. I try very hard to function as a wife and mother of 4 awesome kids: 16, 18, 20, and 21. I also blog about MyBeautifulMigraine journey. It is my great hope to speak my migraine in every attempt to save another from that isolation, and to help spread migraine awareness and education.
💜❤💜

The LOSS of Retreat Migraine and the Aloneness that kills

SO MANY migraineurs, so few spots available at Retreat Migraine. 💔

Frankly, I have HORRIBLE luck with lotteries. Dismal.

If you’ve seen my letter this year, you know I was really looking forward to attending this next year’s Retreat Migraine. Got the news today that I got scrubbed in the lottery. At first I was hopeful that maybe there was still a chance – since I’m waitlisted, but as the day’s moved on, I’m finding myself more and more in mourning.
I’m really excited for the migraineurs who are selected and have the opportunity to attend… because I know what an AMAZING experience awaits them: education on SO many levels and aspects, sample treatments, community, validation, opportunity to try new therapies and learn about stigma and advocacy, and most of all – fellowship, understanding, acceptance and love. 💜❤💜
It is mind blowing what a HUGE NEED there is for Retreat Migraine. But it’s more than a “need”
… it’s like a NECESSITY… like oxygen is for life. And it’s only THREE DAYS.

When I was first diagnosed with Chronic Migraine in 2007/8, I didn’t understand the magnitude. I knew only one person in the world who had frequent migraines. My doctors all tried to help (except my first neurologist who discharged me from her care, saying there was nothing more she could do for me), but they either withheld information or simply were unaware of 75% of the unusual and upsetting symptoms I’d face frequently and they didn’t communicate the concept that CHRONIC means it never goes away and your life and body are forever changed. They also made me feel freakish… like I was the only person in the world who had Chronic Migraine so frequently and didn’t respond to treatments.
I cannot explain the ALONENESS I felt those first several years. 2007-2014. So utterly ALONE…in a world surrounded by good friends and loving family. As I failed my children daily, they were nothing but nurturing and understanding about my health decline. My husband ALWAYS believed me and we bumbled and stumbled around our entrance of the CHRONIC LIFE … trying to learn together
… trying to understand what exactly was happening.
20 medications I have trialed.
8 holistic supplements.
6 medical areas of specialists.
13 eastern and western treatments.
Special diets, juices, powders, capsules, herbs, shakes, and more. The pricetag on all this would blow your mind right out of its skull. But there is such a desperation to find some wellness, that everyone selling something can snag you hook, line and sinker. They claim they can cure you. They wanna help cure you. Pure intentions. They don’t have a clue how they’re taking advantage of a desperate person. And they don’t truly understand this chronic genetic neurological disorder. And they certainly have not lived it 24/7, 365 x 12 years in my shoes.
And each failure, I blamed myself… something I must have done wrong, somehow I did it wrong.
The PAIN and symptoms were absolutely HORRIBLE, the pretending to be okay was beyond EXHAUSTING, but the Aloneness – that was what would kill me. I had everything in the world but was completely bereft and alone. Have you ever despaired so bad you thought you’d just cease breathing? Just be sad enough and a complete failure … and just not be able to take another breath.
I was poison and if I touched anyone, my poison might spread to them. I cared too much about others to poison them. Utterly alone.

Through a quirky well-intentioned accident, someone on social media understood my circumstance and placed me in a Facebook support group. And one Saturday morning my life was saved as I awoke to find post after post in my feed from other Chronic Migraineurs. It took me weeks to understand that what I was seeing was true: there were hundreds of others living the same life as me. Hundreds. I wasn’t actually a “freak” and I certainly wasn’t alone! Since then, I’ve made leaps and bounds in my comprehension and educations… I’ve found my advocacy voice and I know how to self care. I’ve relearned words… like “resting” and “recovering” is not synonymous with the bad word “lazy,” for example.
I would do all in my power and shout from across the world to save others from that Aloneness, to save others from feeling like freaks.
I’m so grateful – beyond words – that I was able to experience Retreat Migraine 2019.
And this is what I will miss this year. The being in a place with hundreds of people like me, understanding, connecting, learning, and cultivating community and above all, HOPE! HOPE for each one of us and our future.😍
They will stream the Retreat on Facebook and I’ll certainly take advantage of that. And I’ll try to turn my frown UPSIDE DOWN and make that be really okay! But there is a mourning for my loss. And I’ve got to work through that. I’m also a little glad that I didn’t get the tattoo since it was only a one time deal.☺️

#ChronicMigraine

#MigraineAwareness

#RetreatMigraine

#RetreatMigraine2020

#speakyourmigraine

The Migraine Babble: Why Your Words Get Jumbled

Migraineurs may
“…often feel like they aren’t thinking clearly. There’s some slowing of cognition.” Or they “may experience speech symptoms, a symptom called Aphasia: difficulty understanding language or expressing words. Some people may have Dysarthria: slurred, garbled speech.”

I used to have an extensive vocabulary… was pretty great at writing and could memorize huge play monologues. Experiencing 18+ migraines a month with aphasia being one of my prominent symptoms has turned my brain and word recall to mush.
If you see me searching for a word, don’t hesitate to shout one out at me! I promise, I’ll be grateful for the assist!🤣

https://migraineagain.com/migraine-babble-words-get-jumbled/

#ChronicMigraine #MigraineAwareness

#migraineaphasia

#migrainesymptoms

Public Comment on ICER Review of Acute Medicines for Migraine

Dear Institute for Clinical and Economical Review,

I am writing to ensure that you fully understand what it means for a person to live with Migraine, the impact this disease has in my life, and the desperate need for access to new and different medicines.

I have had Migraine disease my whole life. My first attack was at age 6 and I was episodic until my mid-thirties. At that point in my life, my migraines increased to a rate of more than 15 migraines a month, classifying me as Chronic. No longer was Migraine a small and manageable part of my life – it began taking over my life. No longer could a day (or even an hour) pass without me having to think about my disorder. As I write to you now, I have an ice pack strapped around my head to control the migraine and symptoms. I will need to change it soon; I have 15 ice packs in my freezer and some days that is not enough. Currently, I experience an average of approximately 29 headache days per month, with an average of 18 migraine events per month. When I have a migraine attack, my physical capabilities range from highly inconvenienced to disabled to completely incapacitated. The symptoms I have (in varying degrees) are light sensitivity, nausea, vertigo, irritability, disabling lethargy, inability to concentrate, aphasia, and throbbing head pain.

Migraine has a major and negative impact on my life. Becoming Chronic since about 2007, I have been forced to leave my career and the job I love as a Registered Nurse because of the frequency, erratic, and intense nature of Migraine. I can no longer exercise like I once loved to, as cardio and being outside can trigger my migraine. I can no longer clean my house. And worst of all, I can no longer be the “present” mother and wife to my four children and husband of 25 years. My youngest daughter is 16 now and doesn’t remember a time she didn’t have to look for me in my bed when she’d come home from school. Can you imagine how devastating this is for someone only in their 40’s and who once lived like a normal person with normal energy levels and abilities? Finally, this year I have been approved for and recognized as having a disability that makes me no longer able to work. I am disabled, and it just completely sucks. I don’t want to be controlled by Migraine; I want so badly to actually live.

Migraine is a very challenging disease to treat effectively. There is no cure and many of the medicines used for people with migraine don’t work very well. Over the course of my Chronic Migraine decade plus, I have trialed preventative treatments: 19 medications, 8 supplements/herbs, 11 medical treatments, and 6 fields of specialists. Some of these treatments or medications have helped a little, some have helped for a short period of time and then stopped working, and some have led to serious and horrible side effects. Some of the worst adverse reactions I’ve had are weight gain, difficulty breathing, numbness of my face, mouth and throat, suicidal ideations, cognitive and behavioral changes, and increased migraines.

At present, I am on Botox for chronic migraine and welcome 40+ injections every 3 months in my head, temples, neck, jaw and shoulders. Botox helps reduce the intensity and duration of my migraines, but it “wears off” well before I am due my next injections – insurance will not allow the injections more frequently. I am also on 2 oral medications and 5 supplements for migraine prevention which help a very small amount. I was able to trial 2 of the brand new CGRP mediations before my insurance proclaimed that I could not be on both CGRP AND Botox – I had to choose one or the other. This is simply an insurance decision – NOT a medical one, as Neurologists and the drug manufacturers report both CGRP AND Botox are safe when used together. I wonder if insurance would deny a diabetic 2 types of insulin that their endocrinologist prescribed? No, you can only choose one or the other. Absurd! My insurance also allows me 9 triptan medications a month for migraine attacks. Directions are to take the triptan at the first sign of migraine. And repeat, if needed in 2 hours, not to exceed 3 tablets in 24 hours. Well, if Chronic Migraine is defined as 15 or more migraines a month, how does the triptan/insurance math work out? Moment of truth: it does NOT. As a Chronic Migraineur, you have to determine which migraine gets triptan treatment and which does not or cannot. The fact is, Chronic Migraineurs are left to suffer terribly with no adequate treatment. I often wonder if we are treated worse than animals?

If I am to have any kind of normal, productive life, it is obvious I require new or better treatment or even more of the treatment and medication available but withheld or denied to us.

Chronic Migraine is an expensive disease. I have lost the ability to work and provide for myself and my family. I spend hundreds a month and thousands a year to maintain existing medications and treatments, and trial new treatments, medications, medical devices, and products to try and manage this disorder. My migraines cost at least 6-10 thousand dollars a year… and I still deal with pain and disabling symptoms nearly every single day of my life.

It’s pretty obvious that my quality of life is very negatively impacted by Migraine, and I need access to new acute medicines that can help stop migraines and avoid the pain and disability I experience. I ask you to respect my pain and to fairly assess these new medicines so that I can be a healthier and more productive human being.

Sincerely,

Donna K

Living With Chronic Illness is Like Having a Low-Capacity Battery | The Mighty

Explained better than the Spoon Theory…

“[When you] see a chronically ill person attending a party, going out for a day or even having a weekend away, try not think to yourself, “They must be getting better/they can’t be that bad really/how come they can find the energy to do the things they really want to do?”
Instead, do the math. Your chronically ill friend will still be paying the price days, weeks or months afterwards— long after the party, event or holiday has faded from your memory.”

https://themighty.com/2019/11/chronic-illness-low-capacity-battery/

Daydreaming about a crowbar

It’s 14:30. I am not completely convinced I will get a handle on this one today #MyBeautifulMigraine
Daydreaming about a crowbar… swift powerful swing to the left temple… ta-da! The cure.
#ChronicMigraine #speakyourmigraine #MigraineAwareness #ChronicIllness
It’s not a headache, it’s a neurological disorder.