Migraine – a Need for Hope, a Voice of Support
Diseases
Chronic Pain, Genetic Disease, Mental Health, Migraine, Neurological Disease
Issues and Challenges
yuri has encountered: Access to Expert Providers, Access to Medicine, Copay Issues, Insurance Issues, Medicare / Medicaid Issues, Medical Records Access, Disability, Financial Assistance, Gaslighting, Housing, Invisible Illness, Job Insecurity / Loss, Legal, Medical Devices, Social Security Disability
My Story
I’ve had migraine attacks since i was 4 or 5, maybe younger. They didn’t have a significant impact on my life until they transformed into chronic migraine* when I was 35 and I lost my career. I’ve spent the last 8 years battling this disease, the stigma, and the medical industrial complex.
I have 2-4 migraine attacks a week, with some fun times of week long attacks peppered in. At this point I have migraine symptoms in-between migraine attacks. Yay. Each attack is a slew of symptoms like nausea, blurred vision, severe neck, head and eye pain, gastroparesis, vertigo, and much more. It’s awful and you’ll do absolutely anything you can to not have an attack. For the past eight years I have been trying treatment after treatment. I've seen five neurologists, 28 specialists, tried over 40 preventative treatments, at least 100 injections of different medications, and so much more. (like a 5 day hospital stay). From hypnosis to laser therapy, a month of yoga to extreme diets. You name it, I’ve tried it or it’s on my list to try next. So many things I’ve been driven to out of sheer desperation. I’ve got a PhD in Migraine at this point!
That’s not where the fun ends! At each treatment is a hurdle. Getting the care to try to reduce chronic migraine attacks is a job unto itself. I think everyone is forced to be an advocate in some capacity if you’re living with chronic migraine. Getting doctors who listen to me, understand my disease and how medications affect me personally has been a long ongoing road. Getting insurance to cover my medications, treatments or specialists is an endless series of phone calls between multiple insurance companies, providers, and round and round. It takes so much time and is so exhausting, while several of my medications remain unaffordable. It is also a unique challenge explaining to loved ones what accommodations I need when I look 'normal'. Living life with chronic migraine, is a constant dance. What are my limits before setting off a migraine attack? What are the limits before pushing away a friend?
Sadly this disease hits BIPOC even harder. It’s a harrowing disease, not made any easier by the systemic racism in the medical industries. I'm very grateful there are trainings available on how to abolish the medical industrial complex. I'm also grateful to be on the Disparities in Headache Advisory Council (dihac), that aims to educate and change these facts.
Until we end the stigma and find a cure for migraine I have some dreams: a Migraine Talk Line - a support line for people with migraine disease. Service animal trainers for migraine (you can train some animals to detect the onset of an attack). Migraine disease included on SSDI’s list! (I’ve sat in front of a federal judge twice explaining migraine disease. No-one should have to go through that.) Also more discussion (and research) on the fact that serotonin and other neurochemicals plummet during a migraine. While you may have depression and anxiety like me, (common comorbidities), migraine attacks can also trigger panic attacks and a depressive episode. So complex!
Nothing has reduced the impact of chronic migraine on my life. I never give up hope, but am desperate for more research and more accessible treatment options.
My Motivation and Inspiration
You all keep me going. Other people living with a disease that get up every day and share their hearts with each other. And the people who support them.
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