Four years into my migraine journey, an editor-turned friend, Helaina Hovitz Regal, and I discovered we had chronic migraine in common. She came up with the idea to start a small Facebook migraine support group, “Brilliant Women with Chronic Migraine”. The group has since disbanded, but it started me on a path.
Once you learn you’re not alone, it changes everything, no matter how alone you feel.
When I became a member of “Brilliant Women with Chronic Migraine”, not only was I honored to be considered brilliant, but I discovered a whole tribe of ladies who “got me.” They shared my pain. I could spare my husband and friends some of my hurt and negativity. In turn, I could offer support.
Growing Through Groups
Over time, I learned to share my story, and how to help others with their pain. It was a liberating, fantastic experience, and a new level of self-care I’d never encountered before.
As I became more confident and open, I started searching for and finding other online migraine support groups, such as “Move Against Migraine” and “My Migraine Support Group”. These are still some of the best ones out there.
Soon, I was gathering information and making connections. Around 2015-2016, the daith piercing became a hot topic of discussion. I found out as much as I could and pierced my left daith in September 2017. The relief was immediate, and even though it didn’t last, the piercing helped me for about a year, until mid-2018. Then the next breaking news became the injectable anti-CGRP meds Emgality, Ajovy, and Aimovig.
A Bit of Backstory
I went through all 3 injectables with varying degrees of success. Ajovy worked the best for me. In 2021, my neurologist added Botox to my routine on an alternating schedule. This helped, but the Ajovy and Botox would wear off, leaving me to have disabling migraine attacks between treatments. In 2023, my doctor switched me to Quilipta, a pill form of the injections that was introduced in 2021. The idea was to take it every day so it never wore off.
I had a decent response with no side effects, but once Botox wore off, I was down again. In May 2025, my neurologist switched me from Quilipta to Vyepti, which is an IV infusion you receive every 3 months. I did two infusions at 100 mg, and those seemed to help, but not enough.
In December 2025, my dose was increased to 200 mg, and I’ve had fabulous results with zero side effects! In the last 30 days, I’ve had 4 migraine attacks, and only 1 of them was severe (meaning I have to sleep it off). This is a miracle for someone who had horrible attacks every day for years. Praise God! The current plan is to continue infusions and Botox and monitor my reaction.
Why am I Here?
I have digressed a little, but my point is I would’ve never learned what I needed to know about these emerging treatments without these groups. I’d never be where I am today. To say they are essential to my health and well-being is an understatement.
Not convinced? Here’s seven reasons why you need to belong to at least one online support group. If you’re on board and looking for a group or two to join, jump to the end for a linked list.
- Learn. There is so much information to be gleaned. One of the hardest things about migraine is what works for one has the opposite effect on someone else, but you never know what you’ll find.
- Support. Not only is chronic migraine comorbid with anxiety and depression, but being in pain all the time has a way of wearing you down. Reach out when you feel alone. We all get it.
- Give back/comfort other people. Since finding this critical part of my support system, my natural response is to give back. 2 Corinthians 1:4 (NLT) says, “He comforts us in all our troubles so that we can comfort others. When they are troubled, we will be able to give them the same comfort God has given us.”
- Find some migraine buddies. Try to connect with at least one or two other members on a personal level. It helps to have a few people you can talk to, pray with, and exchange ideas.
- Hope. It’s so easy to be discouraged with this disease. Being part of a larger group, who all want the same thing, is a powerful supply of hope.
- So you don’t Google yourself to death. Always consult with your doctor, but a group is a better place to find out about specific symptoms than Google. Use the search feature to look for the answer, and if you can’t find it, post your question.
- Safe place to vent to those who truly understand. Are you having an especially bad day and need to unload? Let it out to one of your groups. The overwhelming response will be one of support and love.
It stinks that we all have this disease. I wish it were different. But since we live in a broken world without a universal cure for migraine, we need each other. We cannot survive without one another.
If we have to have migraine, let us not have to do it alone.
Online Migraine Support Groups
Migraine Memes (this is a page, not a group, but I love it because it’s hilarious)
New Chronic Migraine Support Group
Migraine Support Group by Achy Smile
Grab a You Are Not Alone Ever sticker to remind yourself and your friends!
I joined fibromyalgia groups because of you, and it’s brought me a lot of information and people who understand what I’m going through. I have treatment resistant major depressive disorder and generalized anxiety disorder and fibromyalgia and crohns and bone on bone knee arthritis that needs surgery. I have so much going on, it’s nice to have people to talk to. Thank you!
Jenni I’m so happy to hear you’ve found some people to talk to! It really is a lifeline.
I love this! Community is so important
Thank you! Yes I agree. Community has been such an integral part of my healing. Also I was thinking about you when I wrote “find some migraine buddies.” 🙂