Migraine

Hello everyone,

I have been reading through people's experience with migraines for a while. In fact, the first thing I did after self-diagnosing myself with migraines 10 years ago, (based on a list of symptoms I saw on TV) was to come to a migraine forum.

I have been recently learning more about online forums and it made me stop and ask myself what is it that I like about them so much? I'm curious about your thoughts and your experience with migraine forums.

What benefits do you get from being here? Non-tangible (social support, etc.)? Tangible (treatment suggestions, etc.)? How are these useful to you? What is it that the forum has to offer that we cannot find somewhere else (i.e. talking to a doctor or pharmacist, talking to friends etc.)?

Thanks much! And thank you for all your postings - I have been a reader rather than a direct participant, but your notes have helped me a lot.

Ralu

Hi Ralu! Welcome! I hope you will go over to the Member Introductions folder and introduce yourself a little more so people know to greet you.

As to your question:

quote:

I'd like to hear about your experience with being on the forum. What benefits do you get from being here, either non-tangible (social support, etc.)

Yup - social support is huge - I have friends here who know more about me than people I see every day - knowing that others understand and are going through what you're going through is really important.

quote:

or practical (treatment suggestions, etc.).

Yup - I get suggestions here that I wouldn't find other places, and personal experience of people who have used the suggestions.

quote:

What is it that the forum has to offer that we cannot find somewhere else (i.e. talking to a doctor or pharmacist, talking to friends etc.)?

Doctors and pharmacists don't have the time to really support us step by step, the kind of support we can find here. Post on the forum any time, chances are within hours if not minutes someone will respond. And unlike non-migraineur firnds, the people here really understand.

Hope you'll share more!

- Megan

Hello and welcome to our forum family Ralu! Our goal is to provide everyone with the information and support that we all need to manage our Migraines and/or headaches. To that end, we consider this a “safe harbor,” where nobody tries to sell us anything, and we all use “family-friendly” language so parents are comfortable letting their children read the forum with them.

Please take a few minutes to review our policies and guidelines along with the other information in the START HERE folder. For information about Migraines, a good article to begin with is Learning About Migraines - Where to Start.

I'd never partipated in any type of forum setting before I stumbled upon this one over two years ago. I immediately felt at ease here because the members all knew what I go through on a daily basis.

I found my Migraine Specialist on this board, bounced ideas off of other people, learned about new studies, new medications, been given book referrals, and became part of a family here.

Teri Robert works very hard to make sure this forum stays current and up-to-date. She's a fantastic patient advocate who travels around the country and attends conferences on Migraines and then passes along what she's learned onto us.

This forum is priceless to me and I'm happy to be a part of it. Especially when I see new members transform into their own advocates, it's a great process to be a part of.

Megan and Laura,
Thank you for your notes. I went and filled out a new member introduction as well.
Raluca

Hi, Raluca!

I actually stumbled upon the thyroid forums before the migraine ones. I had an endo doc once that kept telling me that I wasn't the norm, and that there just weren't others like me out there that were having and dealing with such complex issues as I was, including the daily migraines and fibromyalgia that came along for the ride with the thyroid stuff.

There aren't support groups around here for migraine and thyroid. If I was going to find someone who really understood, because they lived it, too, I had to look elsewhere. I was simply searching the internet one afternoon, looking for mention of anyone like me that was having such a hard time getting things sorted out, because I doubted I was one-of-a-kind, like that endo said. In my travels, I stumbled on the About thyroid site. I'd never heard of internet forums, and clicked the "forum" link just to see what it was. It was exactly what I'd hoped to find but didn't know existed. I read for awhile, through lots of tears (the good kind), and then figured if they had a forum for thyroid, they had to have one for migraine, too. They did. And I'm still here, nearly nine years later, pretty much every day.

These aren't just people. These are my people, who get it, and share it, and are every bit my extended family. For each other, we make a difference. That's why I like the forums. They're vital.

Thanks Dragondrool. I love the dragon, by the way!!

Thanks. The dragon was a gift from another forum member named Pat. He's been on my posts ever since, several years later and counting.

quote:

Originally posted by ralu:
Thanks Dragondrool. I love the dragon, by the way!!

Welcome Ralu!

All of the above is my answer. I stumbled here a few months after my migraines became chronic, and this forum is a huge part of how I've made it through the last two years with this disease.

I have gotten tons of information here. Teri does a fantastic job making sure we have the most current and extensive info out there. Not to mention all the great ideas and suggestions I get from my friends here.

The social support is the biggest part of it for me. I'm lucky that my family and friends are supportive, but they aren't migraineurs. They don't "get it". My forum family, on the otherhand, is always there for support and understanding when I'm going through a bad spell of migraines, my frustration with doctors and meds, dealing with the stupid suggestions of others, and just keeping me sane in general.

I honestly can't imagine what I would do without this site, and all my friends here. Every migraineur I know or have met I direct here for information and support.

I like forums in general for the support they give, and of course, the information!

I found this forum after my Migraines got worse and I was finally diagnosed.

After finding the forum, I read Teri's book which had even more great info in it and which I now call my Migraine Bible.

The support you get from a really good forum, like this one, cannot be duplicated. You meet people who 100% totally get what you are going through because they go through the exact same thing. Everyone here knows what I'm talking about when referring to any and all things Migraine.

I have met some fantastic gals on this forum. I feel some of them are my BFF's just because they 100% get it. We have become like family here. It really is quite fantastic.

I think, for me, the social support is the most important thing about this forum for me. I stumbled across this forum almost a year ago now while I was looking for information shortly after my diagnosis of migraines. Having a connection here with people that 'get it' has really been a lifesaver for me. Especially when I'm down, or really in pain, I can come here and no that I'm not alone. I'm not the only one in pain today, and not the only one searching for ways to make my life better. If it weren't for everyone here, I don't know how I would have been able to make it through the last year. The encouragement and support of everyone here is something I treasure very much. As supportive as my DBF is, and my parents, who try to be, there's nothing like getting in touch with someone here to lift my spirits.

Meli

I suppose out of sight, out of mind. You can't miss something you don't know exists. I suppose without the forums, we'd probably eke by the best we could, but I know it wouldn't be nearly as fun! (It's soooo good to have peeps!)

quote:

Originally posted by Katinthecorner:
I honestly can't imagine what I would do without this site, and all my friends here. Every migraineur I know or have met I direct here for information and support.

I was thinking about this post today and wanted to give my overdue response. I feel so many people can benefit from the information, support and direction offered by on-line forums.

With that said, I have been on other forums, but none compare to the camaraderie that you find here. You can feel the genuine caring and concern for the members on this forum from the top, Teri, through the moderators and from the other members as well.

Unfortunately, due to things beyond my control, I am not able to participate as often as I would like but I am still able to keep learning based off of the questions that more active members ask. I hope to become more involved when I can in the future as I want to give back all of the help I have received.

I have become stronger in dealing with my doctors, in knowing more about Migraine disease and finding direction. All of this has been invaluable and I would not have found it in any other format than this forum.

Puppet