Patient Perspective: Migraine Life

Migraine disease affects everyone differently. I’ve had the great fortune to meet so many others with migraine, either in person or online. Our conversations have revealed how alike we are in our symptoms or how completely opposite we each experience migraine attacks.

I asked five individuals to answer questions about a myriad of migraine topics. I’ll be sharing their answers with you in a multi-article series. I hope you find in their responses a feeling that you are not alone. Thank you to the brave souls who were willing to share their journey with the community!

Barb from Maryland, who has had migraine for 40 years, with the last 10 years being chronic.

Barbie from Florida, who has had chronic migraine for 18 years after a head injury from falling luggage on an airplane.

Rilla from California, who has had migraine since the age of four, which has continued into her 60s.

Tammy from Michigan, who has had chronic migraine for the past eight years.

Steve who is newly diagnosed with chronic migraine after being episodic for 25 years. (Name has been changed for anonymity.)

Poor advice

What’s the worst advice a well-intentioned person has given you to “cure” migraine? What was your response?

Barbie– The worst advice has come from friends who didn’t understand. I would try to keep up with my friends & then regret it because I was miserable! Trust your gut! STAY HOME when you have a migraine don’t be convinced to do anything when you feel that bad!!!

Rilla– I was told to stop “HATING” myself and my migraines would leave, and “Just BELIEVE” your migraines aren’t real, and they will go away. My usual response is, “Why haven’t you told this to Doctors, so we could END ALL THIS once and for all?”

Tammy– The worst advice I ever got was from my husband’s Grandpa, when I was told to walk around with a pencil long ways in my mouth so it would force me to smile. And if I was smiling, I would not be in pain because I would be unable to frown. And when you are forcing yourself to smile your pain will go away.

Steve– Put a banana on your head or just take an Advil. My response? “THAT WILL NOT WORK AND DON’T OFFER ADVICE TO ME ANYMORE PLEASE.”

Support system

Who is your best supporter?

Barb– Oh, that’s easy. My husband is incredible. Thirty-five years and I’m keeping him! He does EVERYTHING and doesn’t complain – in addition to working full time and taking care of his mom. He drives me to Philly (from Baltimore) every 4-6 weeks. He talks me down when I freak out that I’m losing my mind.

Barbie– MY TWIN SISTER! Since my accident there is no better supporter and person I want to acknowledge than my Twin Sister. She is MY ROCK and is always there to rescue me when I’m having a MIGRAINE EMERGENCY! She is the only one who has truly seen me suffer beyond what anyone should, but somehow she always makes me laugh! Maybe it’s a twin thing. I’m truly blessed and I love her so much for being so amazing!!

Tammy– My biggest supporters are my husband, Kevin and daughter, Katie.

Steve– My parents and my sister and brother-in-law.

Naming your migraine

Do you have a name for your migraine?

Barb– The Migraine from Hell. My daughter, who works with an elderly clientele, forced me to get a rotating med dispenser because I was making so many med mistakes. It beeps and rotates to the correct slot when it’s time to take my meds. She named my med dispenser Joni Mitchell (because it goes round and round).

Tammy– When my Migraines start to escalate I will say, “The Migraine Monster is coming.”

Steve– Yeah, “Crap.”

Coping with migraine

What’s your gut reaction to each of these statements?

 If I can find the right treatment, these attacks will go away.

Barb– My hope is in science. I’m looking forward to the new CGRP antagonist drug which should be out in a year or so. I’m not thinking beyond that, yet.

Steve– I know they won’t go away but I just want them to go back to episodic like it used to be where I had them controlled with sumatriptan.

My family and friends don’t believe me or I’ve lost people due to my migraine disease.

Barb– This is absolutely NOT true for me. My family supports me completely. I have made tons of friends since the migraine started, both on-line and in person.

Steve– I wouldn’t say I’ve lost friends, but my friends don’t really call to hang out because they know I won’t go out to social events at night and rarely leave the house aside from work.

I have reached acceptance of my life with migraine.

Barb– Nope.

Barbie– I’ve finally reached acceptance of my life with Chronic Migraines & pain. I’m choosing to find my silver lining in my every day. If I have good days, I will laugh and have GREAT days. I do as much as I can… and if I’m having bad days, well, I’ll look forward to another GREAT day soon.

Rilla– I have indeed reached acceptance with my migraines. My sister and I are both 3rd generation migraineurs on both sides of my family. All four of my adult children have migraines or migraine variants, and my seven-year-old granddaughter has had migraines since she was four.

Tammy– I’ve lost friends and family due to my Chronic Migraines. I rarely have visitors. I don’t go out with friends anymore because if I have to leave early they don’t understand. Most of my family and friends can’t comprehend that I actually get excruciating migraines, along with all kinds of crazy symptoms every day for eight years. And, they don’t get that I can’t be in a place with lots of people talking, noise and perfumes when I’ve already got a high pain Migraine. They think I just don’t want to go. Anyone who knew me before my migraines, knew I was a social butterfly. I absolutely hate staying at home and missing all these functions. It’s embarrassing to call when I have to cancel because they usually don’t understand. So, many of my so-called friends and family no longer call or come around. But, I have made many amazing friendships through Facebook and Migraine groups. I’m very thankful for them and knowing I’m not alone.

Steve– Maybe with episodic migraine but definitely not with chronic migraine. I will never stop fighting this. I don’t care if I have to force a surgeon to open me up and do what they have to do, or implant electrical wires. When all is done, I am scared I will just end up on painkillers just to get through each day. I will not live with this pain forever. Honestly? I would rather be dead than deal with this pain forever.  Special thanks to Steve, for this very raw and real answer!

Topics in this series include Symptoms, Triggers, and Complementary & Alternative Therapies. Thanks again to Barb, Barbie, Rilla, Tammy & Steve for sharing!

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Migraine.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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