My Patient Story
State: New York
Congressional District: NY27
Issues and Challenges
Sharon has encountered: Insurance Issues
Hi my name is Sharon R. I’m from East Aurora, NY and I have chronic migraine. I am a wife and mother of twins.
I have been living with this terrible invisible disease called Migraine for over 30 years. I get 2-3 MIGRAINE ATTACKS a week!! A Migraine attack is like coming down with a severe sinus infection or Flu 2-3 days every week. Migraine is a whole body experience,It is not just a headache. I can have sharp pains in my head, sometimes almost dropping me to my knees. My neck aches, hurts terribly, I have nausea, throwing up, my whole body aches, cold feet and cold hands. Very tired. Most of the days of the week, I am just pushing through.
There are many triggers that can bring on a migraine attack that bother me:
Smells - like perfumes, after-shave, smoked meat
Weather - Barometric pressure, weather changes
Sounds, clicking (like ice in a glass)
Lights - brightness, sunlight, fluorescent lights
And many more.
Also, Migraines don’t just appear, they have phases:
1) Prodrome. Also known as “pre headache” a few hours or days, fatique .
2) Aura visual disturbance 5 min-60min
3) Headache “Migraine”
4) Postdrome fatigue, depressed mood, 28-48 hours.
I never know when a migraine will get triggered, so I have my migraine abortives with me at all times - my tool box of helpful medications to hopefully stop the attack.
There are days I have ice wrapped around my head , I hide away in my bedroom, darkened windows because I can not handle the light. I have missed out on a lot of family time, like labor day parties, birthday gatherings, kids' basketball games, everyday activities because of my migraine attacks.
Thank goodness for the new Migraine medication called CGRP (Calcitonin gene-related peptide) that came out in the last 2 years. It is one of the first new medications for Migraine in about the last 20 years. This monthly shot has lessened my migraine attacks by about 50%. It has given me my life back. It has lessened the severity of a migraine attack. I still get about 10 a month but my migraine abortives help enough that I can get through most of the days easier.
That is why we need more studies of migraine disease. There are many ways to become an advocate throughout the migraine world and we are always in need of more people to help get the message out there - Organizations Like CHAMP, Miles for Migraine, U.S. Pain, etc. If anyone would like to get involved please reach out at https://www.facebook.com/miles4migraine/ .
We need to not give up, keep fighting, keep advocating. I was able to be an advocate on HOH (Headache on the Hill) in 2021, to help get more money for research for migraines. I have also written letters to ICER and Congress.
In this community, we are all here for each other, I have a migraine family. I absolutely love the information I have learned about my chronic disease by being an advocate. I have learned different tricks to be able to help myself and other people.
My Motivation and Inspiration
I am motivated to advocate for Migraine because I know many people that have this invisible disease and are not getting the right help. I am an advocate not just for myself but for other people, The more Migraine patients know, the better off we are. I am trying to change laws and make laws to help get information of this disease out there.