Voices Across America

Nearly 10 years to get an accurate diagnosis


State: Massachusetts
Congressional District: MA01


Chronic Pain, Migraine, Neurological Disease

Issues and Challenges

Megan has encountered: Access to Expert Providers, Rare / Underserved Disease, Financial Assistance, Gaslighting, Housing, Invisible Illness, Medical Discrimination, Social Security Disability

My Story

Hi, I’m Megan from Massachusetts! My journey began ten years ago, when I was a sophomore in high school. It was like any other day in class when, without warning, my fingers and tongue went numb, I felt dizzy, and my head started hurting. My pediatrician suspected it was migraine with aura, treated it as such, and before that year was over, my life had already begun to be consumed by migraine.

From age 15 to 23, I saw every specialist who would see me, and tried every treatment offered to me. I felt like a guinea pig. Eventually every neurologist, headache clinic, migraine specialist, physical therapist, chiropractor, and pain management specialist would run out of treatment options and ideas on how to help me. My diagnosis stayed consistent all those years, it never swayed from migraine (now without aura). The time between each flare up continued to get shorter and shorter, until I was living in debilitating pain every day.

Shortly after I turned 23, I met the medical director of a pain clinic in Boston, and he diagnosed me with neuralgia. Finally, my symptoms actually matched a more specific diagnosis than just migraine. The tight band-like feeling around my head, the stabbing pain behind my eyes, the throbbing, burning forehead, and the electric shocks could be blamed (at least in part) on damaged or irritated nerves.

I am 25 now, and my diagnosis is a complicated one. I have chronic daily intractable headache, myofascial pain, occipital neuralgia, and trigeminal neuralgia. Some of the treatments I have tried include: oral medications, nerve block injections, botox, radio frequency ablation, and nerve decompression surgery.

My Motivation and Inspiration

I started my IG page, @itisnotinyourhead, to share my journey, and the things I’m learning along the way. Even more importantly, I’m here to make some noise and spread awareness for invisible illness!

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