Invisible no more: INvisible Project alumni share updates and insights

By Lisa Benson

Ever wonder what has been going on in the lives of the people and families you’ve read about in the past four migraine and headache-focused editions of the INvisible Project? Wonder no more! We reached out to alumni and here is a selection of their updates.

How did family and friends react to your being part of the INvisible Project?

My mom and dad were incredibly proud but also moved to tears as they relived the memories of watching me struggle with my health. It’s not that they forgot, it’s just seeing it in black and white all in one place gave them pause and reminded them of how strong we all had to be during those challenging times.
—Nim Lalvani, MPH

My community, both those who are familiar with headache disorders/migraine and those who are not, have shown a tremendous amount of support for my family’s article…
—Billy Dwyer, MSW, LSW

All of my family and friends were happy that I was featured in the magazine. Most knew my story. Only a few did not know my struggles.
—Sheila Lineberry

My family and friends are proud that I continue to be a role model for people with headache and migraine diseases.
—Melissa Geraghty, PsyD

… it was real and raw but truthful. I was sharing my daughter Melissa’s story about how chronic migraine, isolation and a failed medical community caused her to lose all hope of ever living a pain-free life. She was totally disabled by this disease and couldn’t find a doctor to take her case when she chose to end her life at the age of 22.
—Becky Sweet Dwyer

They were so proud. I got so many calls saying they didn’t know I was struggling and they didn’t know migraine could be so debilitating. I also received messages from people on social media saying they had been struggling but didn’t know what to do. So being able to share resources and evidence-based materials was the best feeling. Just knowing my story played a part in getting them the proper help is an amazing feeling!
—LaQuinda McCoy, RN

Being a part of the INvisible Project is one of the greatest honors of my life. I loved being able to share my story in a way that felt authentic… My therapist, and my headache specialist put the magazine out in their waiting room.
—Michelle Tracy

Have you tried anything new to treat your headache diseases, and how did it go?

I have been using ketamine nasal spray since 2019 and have had good success with that. I still get four to six attacks a day, but that’s less than before and the pain is much better managed.
—Andrew Cleminshaw

Since the publication of my story, thanks to a fellow advocate, I learned and now practice deep breathing multiple times a day and also spend some time doing mindfulness. The cluster and migraine attacks are about the same frequency and intensity but I have become more accepting.
—Tom Sayen

I have continued to try new therapies as they have become available. It has been difficult to navigate the minefields of what is and isn’t covered by insurance and the vagaries of the various therapy options.
—Don Vanderpool

In June of 2018, I began using a new CGRP inhibitor medication as a migraine prevention treatment. I went from having chronic daily migraine attacks to… two to four attacks per month. As someone who used to be in the emergency room several times a week… this is a huge reduction… I feel like I’ve gotten my life back…
—Michelle Tracy

I have been fortunate enough to have a great therapeutic regimen in place for my migraine treatment. Ketamine infusions along with [a new acute ditan treatment] have helped immensely with my migraine symptoms.
—Elizabeth Arant, MSN, RN

My insurance changed covering some of my medications and because of COVID, I was unable to receive treatments for months (botox, acupuncture, therapy.) All this stress, and COVID-19 concerns, life and migraine management has been stressful.
—Rachel Koh

What piece of advice would you give to your former self or to someone newly diagnosed?

Be patient with yourself and your family… Also, get connected so you know you and your family are not alone!
—Mercy Lineberry McDaniel, JD, MDiv

Get connected to a support group, learn as much as you can, find a doctor you trust, and keep a diary of headaches/attacks to help see how treatments might or might not be helping.
—Eric Cohen

You are not alone, and there is help out there.
—Joe McKay

Want a cure, better access, and/or more treatment options? Make advocacy part of your treatment plan.
—Shirley Kessel

To my former self: Don’t be afraid to talk about the disease and what it feels like. I kept it all to myself for 48 years until my first Clusterbusters conference in 2017… For someone newly diagnosed: You are still 100% percent a person, you are not defective…
—Tom Sayen

A piece of advice, although cliché, would be to keep on fighting because things will get better.
—Chloe Vruno

Go to a Clusterbusters conference as soon as possible. You will learn more in three days from the speakers and other patients than you will in the hours you spend on Google or Facebook.
—Ashley Hattle

Don’t be afraid to ask for help. The people in the cluster and migraine community are a family and are always there to help.
—Andrew Cleminshaw

I would tell myself that it wasn’t my fault, that I did nothing wrong. When I was newly diagnosed, I thought I had made some mistakes that led to my migraine disease getting worse and my attacks becoming more severe. I would tell this to my former self, but also anyone who has currently been newly diagnosed.
—Lisa Benson

Caregiver: ask questions of the clinician to try to understand the diagnosis, its implications, and treatment options. Try to be an empathetic caregiver.
—Isiah Lineberry

Educate yourself as much as you can about your disease… Join the migraine community… And lastly, migraine is experienced differently by every person, so don’t make decisions about your care based on if something does or doesn’t help someone else.
—Deborah Turk

… understand this is a winding road of a process that’ll include ups and downs, and you are more than any health condition or diagnosis…
—Mia Maysack

Hang in there. If some of the newer drugs haven’t worked yet, more are coming down the pipeline.
—Elizabeth Roberts-Zibbel

I had no clue episodic migraine can turn into chronic migraine and that there isn’t a cure for migraine…yet. I need to focus on managing my pain in this present moment and stop stressing about the past. I’m chronic, but I can still live a fulfilled life.
—Katie M. Golden

Have you had any momentous changes in your life?

I now have two children, a 2-year-old girl and a newborn baby boy…
—Mercy Lineberry McDaniel, JD, MDiv

I am now working as a paraprofessional in an alternative school with kids who have behavior issues in school.
—Eric Cohen

Rowan had been pain free since August 2020 until… his migraines kicked back in for a few weeks, but seem to have dwindled again. Honestly, we are afraid to mention it or breathe too loud for fear they will come back. But we are super grateful… and even if they did reappear, we at least caught our breath for a bit.
—Shannon Rody

Our daughter Lucy Rose was born in November 2020 and we are planning a move to a neighboring town soon.
—Ashley Hattle

Birth of our twin boys at the end of 2019.
—Michele Vargas

I finally won my Disability (SSDI) petition! I have continued to volunteer for Miles For Migraine, which brings me a lot of joy, and have been trained and certified to facilitate a Migraine Support Group…
—Deborah Turk

I was accepted to and am now attending Freed Hardeman University in Henderson, Tennessee. I’m living on campus on my own, which is not something I ever expected to be able to do. I feel proud of that.
—Trinity Burton