Voices Across America

Migraine, Chronic Pain, and Struggling to be Visible

butterfly avatar

Dianne

State: Connecticut
Congressional District: CT01

Diseases

Gastrointestinal Disease, Immune Disease, Migraine

Issues and Challenges

Dianne has encountered: Access to Medicine, Copay Issues, Medicare / Medicaid Issues, Rare / Underserved Disease, Disability, Discrimination (nonmedical), Gaslighting, Invisible Illness, Job Insecurity / Loss, Social Security Disability

My Story

I have an invisible disease - migraine. I am in my mid-60's and was diagnosed with migraine in my early 30's. I have been having what I thought were "headaches" since I was around 13 years old so when you do the math, that's over 50 years! At that time, I was only having headaches a few times each month and never thought they were migraine episodes. I was able to earn a degree from a Junior college, held a full-time job with an accounting firm, returned to college to earn a Bachelor's degree, passed the Certified Public Accountant exam, and returned to college again to earn a Masters degree - all while having severe headaches that I did not know were actually migraine attacks.

As the frequency and severity of the headaches increased in my early 30's, I sought the expertise of a neurologist (who was one of my previous employers, ironically). At that point, I was diagnosed with migraine. Fortunately, I was not one of the thousands of people with migraine disease for whom it takes years to get an accurate diagnosis. I was given a prescription for Fiorinal with Codeine that was initially helpful in controlling the pain associated with the migraine episodes. I was hesitant to take the Fiorinal as often as I needed it because I knew it contained a narcotic and that it was dangerous to use too much of the medication. I didn't want my body to get used to the medication for fear that it would cease to be helpful. In the late 1980's (when I was in my early 30's), medication choices for migraine were few...so if the Fiorinal was no longer helping the pain, I knew finding some other medication to help could be an unsuccessful journey. Eventually, Fiorinal stopped being as effective. I've tried Gabapentin, amytriptyline, Ajovy, buproprion, Wellbutrin, Pristiq, have been an inpatient at a headache center in Michigan for 10 days, and been to four different headache specialists. I have learned how to advocate for how I'm feeling and what I think I need, medically. I've had episodic migraine (fewer than 15 headache days/month) as well as chronic migraine (greater than 15 headache days/month).

Fast forward to the mid-2010's. New medications for migraine start to appear on the market with many medications in the development pipeline. Now there are neurologists who are considered "headache specialists." Migraine is starting to become a bit more recognized by the public and medical professionals but with that recognition came stigma. People would say things like "You don't look sick," or "C'mon, it's just a headache," or "Just take a couple of Tylenol/Advil/aspirin," or even "Just drink more water." People didn't (and still don't) understand that a migraine is MUCH more than a headache. Medical professionals often don't recognize the symptoms as migraine - they think we're "faking it" or that "it's all in your head - you're fine."

When I'm experiencing a migraine attack, I have dizziness; disequilibrium; severe, throbbing, pulsating head pain; nausea; brain fog; difficulty concentrating; allodynia (my hair and scalp are painful); neck pain; increased urination; light and sound sensitivity; tinnitus (ringing in my ears); fatigue and a heightened sense of smell. Other people with migraine may experience vomiting, stroke-like symptoms (numbness, tingling and muscle weakness), visual disturbances, word-finding difficulty, facial pain, and/or difficulty reading. This is not meant to be a complete list of possible migraine symptoms but it does help to understand why migraine is so difficult to diagnose - there are so many symptoms it's sometimes hard to put the whole picture together.

In 2016, I was working as a Medical Practice Administrator at a geriatric practice of a large medical group owned by a local hospital system. As the frequency and severity of the migraine attacks increased even further, I was unable to work 3-4 days out of every week - making it hard to do my job if I wasn't physically in the office as patients were seen all day, every day. Mornings are difficult for me - I often wake up with a migraine or am woken up during the night with a migraine, so being able to go into work a bit later in the morning would have been a huge help. I asked for an accommodation of adjusting my hours (instead of working 8AM-5PM, I asked to work 10AM-7PM) under the Americans with Disabilities Act ("ADA"). The ADA applies to employers with 15 or more employees. However, my request was promptly denied. Being owned by a large, local hospital system provided me benefits under the Family and Medical Leave Act ("FMLA") so I was able to use those benefits without risk of losing my job. FMLA only applies if your employer has over 50 employees and you have worked a certain number of hours. When I exhausted those FMLA benefits in 2016, my employer gave me a choice of resigning or getting fired. Hoping I would be able to return to the workforce if my migraine attacks got under better control, I resigned. The better control I was hoping for did not materialize until a year or so ago - thanks to a combination of medication therapies. For me, Emgality, Nurtec (as a preventive), weekly/biweekly sphenopalatine ganglion blocks, radiofrequency ablation, Botox, avoiding triggers and being rather sedentary has had a positive impact on the frequency and severity of migraine episodes. I am severely triggered by aromas/scents/odors/smells so much so that I eat my meals out or order meals to-go from local restaurants. I find that cooking odors can linger in my home for 24-48 hours (even with an air filter and open windows, when the weather allows) while eating out or having a meal to-go means that I'm only subjected to food odors while I'm physically in the restaurant and once I leave the restaurant, I leave the odors in the restaurant - none of the odors linger - and for that short period of time, I'm okay.

Now in 2022, I've learned to thrive while living with migraine disease. I have learned to treasure the no-pain or low-pain days. I almost always have a positive attitude about the medical issues I have because one of my first jobs out after junior college was working for a neurologist. I was patients come into the office with a chief complaint of headache or muscle weakness and leave with a untreatable, life-altering diagnosis. Yes, migraine is a life-altering disease but not in the same way as the diagnoses received by the patients in that neurology office - working there taught me to count my blessings and be grateful for every day I have...and I try to use that in my everyday life.

My Motivation and Inspiration

Migraine is an underserved, silent, debilitating, and invisible disease. We need to find a way to shine a very bright light on this disease that impacts, conservatively, 39 million people in the US and 1 billion people worldwide. I say its a conservative estimate because there is an unknown number of people living with migraine disease who have yet to receive an accurate diagnosis. The reasons for this are varied and many but the principal reason is that American medical schools only provide 2-3 hours of education on migraine during the entire time a medical student is in medical school.

I've lived with chronic pain for over 1/2 century and have only recently been able to try new medications to treat my pain. Why? Because chronic pain is an unrecognized, silent, debilitating, invisible disease and because research funds for migraine are almost non-existent. Chronic pain affects 50 million American adults - that's 20% of our population. It is the leading cause of long-term disability in the US; $635 Billion are spent annually on chronic pain as it relates to medical treatments, disability payments and lost productivity.

Pain is the #1 reason Americans access the healthcare system - it reduces the quality of life, leads to an increased risk of depression and anxiety. This is an incredible statistic: Veterinary students spend FIVE TIMES as many education hours on treating and managing pain in animals as do medical students studying human medicine!

Share This Story

Share on facebook
Share on twitter

Find More Stories

Browse the map or filter by:

Click on pins to view stories.

ZOOM IN OR OUT TO CHANGE THE VIEW.

Get the most from every Story

Find A Compelling Patient Story

Share it on social media.

Share Your Story On Our Network

Share your insights, challenges and what keeps you going.