Research: What being a Migraine.com member means to you

By Dr Marcus

2 min read

Migraine.com just celebrated its 2-year anniversary as a community resource for people with migraine. About six months after the site was first launched, we asked you what you thought about the site—what kind of resources you were using and whether they were making an impact. A total of 524 of you answered our survey and the results were just released in the journal Headache.

The survey asked about your migraines and your belief that you could make a difference in your migraines. This belief is called self-efficacy. As people gain a stronger sense that they can positively impact their health, symptoms tend to decrease. Self-efficacy was rated through several questions, possible scores for each between 1 (low self-efficacy) to 10 (high self-efficacy). In general, self-efficacy was low to moderate, with scores ranging from 4 to 7.

Here's what we discovered:

One in four people visited migraine.com at least one a day
- One in five visited 3 to 6 times a week
- One in three visited once or twice a week
- Frequency of visiting the site did not vary based on either migraine frequency or self-efficacy scores
Over half of those visiting the website learned about new treatment options
- Over half learned more about migraine symptoms and triggers
- Two in five people used the information to make lifestyle changes to improve migraines
- Two in five visited their doctor to discuss migraines and one in five found a new migraine doctor
- One in three started a migraine journal
People were more likely to read information on the website than participate in discussions or post questions
People also found the website was helpful to show them they were not alone and help them connect with others sharing their experiences
Some people were able to use Migraine.com to help educate others about their migraines

Visiting Migraine.com also resulted in these important changes:

People were more likely to be involved in treatment decisions

People found it easier to talk with others about their migraines

88 percent of participants indicated that they found others with similar experiences by visiting Migraine.com

Migraine frequency increased website use

People experiencing more than 15 migraines per month had a marked impact from visiting Migraine.com
- They were more likely to make more migraine management changes after visiting Migraine.com than individuals with less frequent migraines
- They used more of the tools on the website

Thanks for sharing

This survey helps to show that Migraine.com can have wide-reaching impacts for people with migraine. How do you use Migraine.com? Do you have ideas or suggestions?

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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cindimoyer Member
YES! It means ALL OF THAT to me. This is my favorite health site. I've made iFriends here. But with everything I've learned here, I think the thing that reasonates deeply within me is that I am not alone. I am not even all that strange. The disease I have is coming into better focus with every article and every comment I read. And only someone like me can truly understand what kind of reassurance and freedom that brings.
1. Editorial Team Community Admin
 Hi Cindi, Thanks so much for commenting. We hope you continue to find helpful information and connections via the website.... you're certainly not alone!
shani Member
It means REFUGE.
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I find it a welcoming, easy to access resource for getting the latest medical information on migraine as well as a place to hear from fellow migraineurs how we all cope with the many issues migraine disease presents in our lives. I definitely feel much less isolated and much more knowledgeable about migraine now that I have this community to come to. I think it has also encouraged me to be a more outspoken advocate for migraine education and research!
1. Editorial Team Community Admin
 Thanks so much for your feedback, MJ. We're so happy to hear you've been able to connect with community members who can offer support and encourage you to be an outspoken advocate - we can't have enough of those!
sonjamohr Member
This website has been so meaningful to me and I wish I had begun using it years ago. My migraines have been debilitating in the past few years, so much so that I've begun driving 90 miles to go to the Diamond Headache Clinic in Chicago. The affirmation I've received about the sacrifices I make in my life due to my migraines has been so helpful, yet poignant to me. I also learned that my family, especially my husband, is so supportive to me that I need to be thankful. So many times I've read the columns on my website and said, "me, too!" Thank you.
1. Nancy Harris Bonk Moderator
 Hi sonjamohr, Thank you for the kind words. We are delighted you've found <a href='http://Migraine.com' target='_blank'>Migraine.com</a> helpful and is now a meaningful part of your life.
jgs350 Member
The information on this site and the support far exceeds that of any other site. I take a lot of the information to my doctor and it has opened up a lot of new treatment plans and options. This site has been a great help. I cannot thank you enough for all the support and great medical advice I've gotten from this site.
Dr Marcus Member
Thanks all for sharing your stories and experiences. This information is invaluable for helping to improve the delivery of education and information to people with migraine.
taralane Member
This is my go-to site for everything about migraines, and I have directed many people to it. You would not believe how many conversations I have with people on the telephone - just regular people that I need to contact regarding bills, or orders, or something, when I mention I have migraines they tell me they have them too, and I send them to this site and tell them to find a migraine speciality neurologist for tx. They are always thanking me for the information and I am happy to pass it along. I feel I do to little for others in this area - my friends don't want to hear about it, they (most of them) think I just need to get over it, or toughen up and get moving. Some days I can, some days I cannot. I have learned to pay no attention and go other places when I need some support. One think I would like to see on the Migraine App, which I use a lot, is some way to link days of migraines. Sometimes one migraine goes over more than one day, and there is no way to show that. I don't always fill in the app Meter, and that is my own lack of constancy, but sometimes I just don't have the energy to put the same things in over and over. Generally I say, "read Monday" and let it go at that. But other than that it is a really great app, and helps me keep track of what is going on. So thanks for all your good work, and information and for keeping the rest of us informed with the accurate information we need.
1. Nancy Harris Bonk Moderator
 Thank you for the kind words and input. I will make sure your thoughts are passed on!
Dr Marcus Member
Thanks for all the terrific comments. Great to know <a href='http://Migraine.com' target='_blank'>Migraine.com</a> is an important resource. Thanks also to all of you who took the time to take part in our research survey. These surveys are an invaluable tool for learning how large groups of people with migraine are affected by their symptoms and really opening up healthcare providers' eyes -- including mine! -- about the work that still needs to be done. Thanks again for opening your lives and sharing your experiences.

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