When I was first diagnosed with chronic vestibular migraine, I wasn’t sure where to turn. I literally didn’t know anyone else with the same diagnosis as me. And as much as I love my neurologist, he might not be too happy with multiple emails a day about what foods might be a trigger or what to do if I’m going to the bathroom too often with the magnesium I’m taking! So I began to research different groups online with others who shared a similar diagnosis.
There are a lot more now then there were back then. especially for VM, but I still felt overwhelmed by the amount that I could join. How could I tell if they were a good group? Were they all really that different?
I just joined as many as I could in the beginning, wanting to soak up all the knowledge that was out there. It wasn’t too long after that my Facebook feed was filled with literally all things migraine. Since I was out on disability leave, I had time to really sort through all the groups. I would spend hours reading new posts and searching through old ones for my questions, until I finally got brave enough to ask them. The rest was history, and I eventually joined the Migraine Strong admin team a few years later because the help I received in that particular group was so beneficial to me.
How I Found the Migraine Strong Support Group
Originally I found Migraine Strong because I was looking for resources for the Heal Your Headache diet which I had been following and finding it difficult to locate resources. I couldn’t believe there wasn’t a website about this diet (which was how The Dizzy Cook got started), but it seemed like MS had the most information on it. It was in Migraine Strong that I learned that ginger can help with head pain. And that there were different types of magnesium, like magnesium glycinate, and I should switch from my combination migraine supplements to separate supplements to figure out what was really helping.
Often times I’d see other treatment plans people were following and wonder if I should be on that too. Everyone seems to be on antidepressants. Maybe I made the mistake by choosing Timolol for my treatment. I remember searching every group for info on Timolol, finding nothing, and wondering if my neurologist made a mistake with me. That’s where support groups can almost be a double edged sword. It can make you doubt everything you’re already doing when you see one person who was magically cured with green juice.
The Downside to Online Support Groups
Sometimes the opposite of support can happen in “support groups”. There were moments where I felt as though I would never get better. Posts of people wanting to end their lives, not sure how they can go on. Posts about having this illness for more than 20 years and never having a good day. Your mind starts to wander and think that maybe that’s me.
Misinformation and MLM Sales
There’s also A LOT of misinformation that floats around in migraine support groups, and a lot more that I see in my vestibular disorder support groups. Unless you have admin that step in, people can basically say whatever they want. Sometimes advice is skewed by someone who is selling MLM products and they want to “DM you”. Other times people have found “cures” through totally unscientific or unrelated means and think everyone else should be doing the same thing.
The Positives of a Good Migraine Support Group
One of the biggest advantages to being in good support groups is finding people you connect with that you can become cheerleaders for. If you stay in one group for a while, you start to recognize names and patterns, and can gauge quite a bit about someone’s personality by what they post and how they respond to others. I ended up reaching out to a few ladies who had similar stories to me, and now they’re some of my closest friends. I finally met Jennifer, another one of the Migraine Strong Admin, who I connected with years ago when I first joined the group.
Jenn and I had similar struggles with our Vestibular Migraine journeys, yet we were on completely different treatment plans. We’d check in with each other and see what was working and what wasn’t, like these posts we wrote together about our trial of Cognimag for our brain fog and Theraspecs for light sensitivity. This kind of support is invaluable.
A Working Knowledge of New Migraine Treatments
Another positive is learning about new treatments and what’s working for different people. With so many new migraine treatments emerging from anti-CGRP acute medications to the Allay lamp, it’s nice to know what seems to be working for people before dropping hundreds of dollars on a new treatment. I think it opens a lot of conversations with your neurologist as well!
Because I wasn’t seeing my preventative medication on any of the message boards, it prompted me to ask my neurologist about the “why” behind it. Why was I the only one on this medication (or so it seemed)? It turned out that this was a medication he offered to people who were contemplating pregnancy and there had been small studies to support its effectiveness. By trialing it with his patients who were willing, he was able to figure out it worked well for the Vestibular Migraine patients.
Tips to Find The Best Migraine Support Group
- Active Admin Are Really Important. And you want to find ones that really know their stuff. It helps if the administrators have already been through chronic migraine and have figured out what works for them. It doesn’t mean they have to be totally migraine-free, but it means they have a working knowledge of the treatments out there and can quickly spot misinformation.
- Positivity without Toxic Positivity. We can’t sugar coat migraine. It’s not easy and sometimes it totally ruins our lives. But sharing the miserable moments over and over can quickly bring others down with us. There’s also a difference between venting and then doing something about it, or just continuing to live in misery. If you can find a group that acknowledges how difficult it is to live with migraine, yet also celebrates the positive moments and the big wins in our lives, it’s a great combination to feel uplifted when you need it most.
- Science Based, But With A Little Experimentation. I’ve been in groups that will not even let you acknowledge natural treatments like diet or mindfulness. They think it’s full of fairy dust with no factual evidence, even if some of these treatments are supported by legitimate migraine doctors.
And I’ve been in other groups where people encourage treatments with actual fairy dust…and they can sell it to you for $29.99! Migraine, and especially vestibular, is a seriously underfunded illness when it comes to research, so many studies will be small, or may not have a ton of information to back them. That doesn’t mean they’re not valid or worth a discussion. This is where admin can also help to sort through what’s fact and what’s fiction…or what seems to be promising even without a ton of support.
- Friendly People. Look for people who will genuinely support you and who care about your well-being. I can assure you that even though you’ve never met some of these people, you do make a difference in their life. Discussion needs to be polite and respectful, even if you disagree with their treatment plans. This can be challenging as I have seen some of my migraine friends start to go down paths and rabbit holes that I know probably won’t serve them best. All you can really do is tell them the evidence and hope it works out for them. I’m beginning to understand some of these crazy paths come from sheer desperation. And while I hate to see programs prey on that feeling, I also have to remind myself that we’re all mature adults. We can make our own decisions regarding our health.
Migraine-Related Facebook Groups
Online Live Chat Support Groups
In-Person Migraine Events
I have been managing the Miles for Migraine Dallas MeetUps the past few months. In this group, we have a professional speaker or educator come in to teach us about different ways to live with a migraine disorder – from new treatments to restorative yoga. I have met so many fun people this way who are wonderful.
- Miles for Migraine Community Groups and MeetUps
- Migraine Strong MeetUp – the first event will be in Ohio on 4/18 at BalletMet
- The Migraine World Summit Live Event
- Retreat Migraine – I will be here so stop by and say hi!
Anonymous Support Groups
Some people don’t like the exposure that joining a Facebook brings, even if it’s secret. This can be especially important for people in demanding jobs where their career could be compromised.
In that case, we like the Healthline app! You can be totally anonymous on this app and have all your questions answered without anyone knowing who you are. As a partner, the Migraine Strong admin team are really active. So you get some of the benefits of the facebook support group without having to be so public.
MVertigo – this group is great for those looking to stay anonymous with vestibular disorders