#migrainechat Transcript
Healthcare social media transcript of the #migrainechat hashtag.
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See #migrainechat Influencers/Analytics.
| Profile | Tweet |
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 | Beth Morton @beth_morton It’s not an April Fool’s! Just under two hours until #MigraineChat begins! Are you joining us today? We will talk about #migraine and social media. If you haven’t joined before, chat etiquette and questions are posted here: https://t.co/Wuemu2Ihop. |
 | My Chronic Brain @mychronicbrain @itskac You feeling up for some #MigraineChat in an hour? :) |
| My Chronic Brain @mychronicbrain @blueraccoon Come by for #MigraineChat today? |
| My Chronic Brain @mychronicbrain @NHF Hi friends! Are you available to come chat again today? #Migrainechat |
| My Chronic Brain @mychronicbrain @MoretoreadO PIA! (That's a beautiful thing about online. You can shout in excitement without hurting your head ;)) Are you able to come chat with us today? #MigraineChat |
| My Chronic Brain @mychronicbrain @Noah_theNarwhal Able to join us for some #MigraineChat? |
| My Chronic Brain @mychronicbrain 18 minutes! We're going to be tweeting a lot during #MigraineChat (1-2pm EST) so feel free to mute the hashtag. But we hope you'll join us instead. You're invited, even if you don't have Migraine. 💜 |
| Beth Morton @beth_morton Hello everyone! Welcome to #MigraineChat! Thanks for being here today. I hope you’re doing as well as possible. If you haven’t before, take a quick moment to review the chat guidelines: https://t.co/Wuemu2Ihop |
 | Krista @Kristacatlady I'm going to be tweeting a lot during #MigraineChat (1-2pm EST) so feel free to mute the hashtag. But i hope you'll join us instead. You're invited, even if you don't have Migraine. 💜 |
| Beth Morton @beth_morton There are two helpful chat tips: (1) I’ll start each question with Q1, Q2, etc. You should start your corresponding reply tweet with A1, A2, etc. (2) **Always** remember the #MigraineChat hashtag! It helps make following the conversation easier. |
| My Chronic Brain @mychronicbrain @migrainekrista Krista! You made it! 💜 #migrainechat |
| Beth Morton @beth_morton Before we start with questions, let’s see who is here today. I’m Beth. I’m moderating today’s chat. My friends @mychronicbrain will be retweeting to their audience, too. I live in #Vermont and I promise, no practical jokes today! #MigraineChat |
| My Chronic Brain @mychronicbrain @Alexandria_SZ @beth_morton I wish Migraine was an April Fool's joke. 😂 Alas. #MigraineChat |
| Beth Morton @beth_morton While you continue introductions, a few standing reminders. This #MigraineChat is purely informational. Nothing should be considered medical advice or a substitution for talking with your doctor. If you don’t have one, find a #headache specialist here: https://t.co/ECwDhBTzAw |
| Beth Morton @beth_morton Also, don’t forget that Twitter is public forum and we are discussing health-related topics. Share only what is comfortable for you. #MigraineChat |
| My Chronic Brain @mychronicbrain Hi! We're My Chronic Brain! We're friends with the beautiful @beth_morton and are excited to help facilitate conversation about migraine. #MigraineChat |
 | Rebecca @PyesMusings @beth_morton @mychronicbrain Rebecca from DC, having a rough pain day and seeing double but I am here on time! #MigraineChat |
| Krista @Kristacatlady I am Krista. I live in the St Louis suburbs. Have had chronic migraines for about 12 yr. Thought it was shorter but my hubby corrected me. 😳 #MigraineChat |
| My Chronic Brain @mychronicbrain @smithbrainz @beth_morton Amazing introduction. Hey, Lisa! 👋 #migrainechat |
| My Chronic Brain @mychronicbrain @PyesMusings @beth_morton You made it! Hi Rebecca! If you need to leave, we'll understand. But so glad you made it! #migrainechat |
| My Chronic Brain @mychronicbrain @SarahLerner @beth_morton Hi, Sarah! So happy you made it! Also, is the weather warm where you are? #migrainechat |
| My Chronic Brain @mychronicbrain @migrainekrista Hubbies are good for that. Ha ha #migrainechat |
| Beth Morton @beth_morton So happy to have everyone here despite various states of #migraine. Here comes Question 1…! #MigraineChat |
| Beth Morton @beth_morton Q1. What role does social media play in your life with #migraine? #MigraineChat |
 | Dr. Alexandria Szeman: Award-Winning Author @Alexandria_SZ RT @beth_morton: So happy to have everyone here despite various states of #migraine. Here comes Question 1…! #MigraineChat |
| My Chronic Brain @mychronicbrain @bhendykat @beth_morton Hi Eric! Hope it works out! (Psst, don't forget #migrainechat so that others can find you easier) |
| My Chronic Brain @mychronicbrain A1: Social media in its various forms help us stay engaged with others. Having Chronic Migraine means that more traditional ways of being around people are really hard. #migrainechat |
 | Jenn Heater, Chief Oddity (she/her) @Medical_Oddity Hi, I’m Jenn, from the San Francisco Bay Area. I am an editor at @mychronicbrain and I have been living with Migraine Disease for 21 years—chronic for approx 6. #MigraineChat |
| Beth Morton @beth_morton A1.a. When my #migraine attacks first started getting worse, I turned to social media for information about the disease and treatments – Facebook groups, migraine organizations, doctors, research. #MigraineChat |
| My Chronic Brain @mychronicbrain @Medical_Oddity Glad you made it, Jenn! #migrainechat |
| Beth Morton @beth_morton A1.b. I still use social media to support my treatment, but now I also have found friendships and social support from others with #migraine. I also use it to advocate for myself and others. #MigraineChat |
| Dr. Alexandria Szeman: Award-Winning Author @Alexandria_SZ RT @beth_morton: A1.a. When my #migraine attacks first started getting worse, I turned to social media for information about the disease and treatments – Facebook groups, migraine organizations, doctors, research. #MigraineChat |
| Krista @Kristacatlady A1: social media helps keep me connected to others. I am very isolated otherwise. Helps me get and give support.#MigraineChat |
| Rebecca @PyesMusings @beth_morton A1 social media in general is how I stay in touch with people, since I don’t see them in person anymore. Migraine/chronic pain twitter is a source of advice and validation and sense of community, which is crucial since, again, in-person support groups are iffy #MigraineChat |
| My Chronic Brain @mychronicbrain @smithbrainz @beth_morton We hear this! There's something very... encouraging and comforting about knowing you're not the only person living with this, isn't there? #migrainechat |
| Dr. Alexandria Szeman: Award-Winning Author @Alexandria_SZ RT @beth_morton: A1.b. I still use social media to support my treatment, but now I also have found friendships and social support from others with #migraine. I also use it to advocate for myself and others. #MigraineChat |
| My Chronic Brain @mychronicbrain @migrainekrista The "giving" portion of that seems just as important as the getting portion in so many ways. You feel less useless. Not that we are. Not a single one of us! #migrainechat |
 | WillWork4Icecream @greengoddess892 I check into social media when I have a barometric pressure migraine because I am glad to find out that I'm not the only one suffering in my zip code. Usually someone can tell me when the front is passing and I can hang on. #migrainechat |
| Jenn Heater, Chief Oddity (she/her) @Medical_Oddity A1: I am often homebound. My ability to drive has been virtually non-existent. So, I have made lots of connections with people I consider close friends on social media. They understand the limitations that migraine puts on life and the community has helped so much #migrainechat |
| My Chronic Brain @mychronicbrain @greengoddess892 That's a really neat use of social media! (read: why didn't I think of that) #migrainechat |
| Jenn Heater, Chief Oddity (she/her) @Medical_Oddity Again, so much this! #migrainechat |
| Beth Morton @beth_morton Q2. What advice can you give for finding online #migraine support and resources? #MigraineChat |
| My Chronic Brain @mychronicbrain @bhendykat @Medical_Oddity Agreed! #migrainechat |
| Jenn Heater, Chief Oddity (she/her) @Medical_Oddity @bhendykat Plus, if you have to cancel, they totally understand #MigraineChat |
| Beth Morton @beth_morton A2.a. Vet your resources. Follow groups/orgs that provide quality information from peer reviewed (academic) sources. Join groups on Facebook, etc., that have moderators that cultivate the resources similarly. There is fake news even in the #migraine community! #MigraineChat |
| Beth Morton @beth_morton A2.b. Less formally, use social media for support. I wish I’d met all of you under other circumstances, but I’m grateful for all the advice & support you provide on a near daily basis. Don’t be afraid to reach out to others with #migraine. It can be isolating. #MigraineChat |
| Dr. Alexandria Szeman: Award-Winning Author @Alexandria_SZ RT @beth_morton: A2.a. Vet your resources. Follow groups/orgs that provide quality information from peer reviewed (academic) sources. Join groups on Facebook, etc., that have moderators that cultivate the resources similarly. There is fake news even in the #migraine community! #MigraineChat |
| Krista @Kristacatlady A2: I follow people with migraines, comment on other people's tweets, branch out from there. #MigraineChat |
| My Chronic Brain @mychronicbrain A2. Use the power of search: "migraine" is one way to get your foot in the door on a new platform. #migrainechat |
| Dr. Alexandria Szeman: Award-Winning Author @Alexandria_SZ RT @beth_morton: A2.b. Less formally, use social media for support. I wish I’d met all of you under other circumstances, but I’m grateful for all the advice & support you provide on a near daily basis. Don’t be afraid to reach out to others with #migraine. It can be isolating. #MigraineChat |
| My Chronic Brain @mychronicbrain @Croomsky Hi Tori! Sorry to meet under these circumstances, but we're glad you're here! #migrainechat |
| My Chronic Brain @mychronicbrain @Alexandria_SZ @Migrainedotcom @MigraineAgain @Healthline @DrWeil Oh the "cure". #migrainechat |
| Krista @Kristacatlady A2: on Fb, I just searched out migraine groups. Some of them are ginormous. It can be a great way to get info. #MigraineChat |
| Jenn Heater, Chief Oddity (she/her) @Medical_Oddity @beth_morton I think this is SO IMPORTANT. The migraine community is there to help. If you are feeling like you are isolated and lonely, reach out. We’ve all been there. #MigraineChat |
 | ChronicMigraine Girl 🌈✨🌈 she/her @migrainesallday A1: it plays a huge role. Often times it’s the only place I feel supported and validated by people who know exactly what I’m going through. Twitter and Instagram are my mini support groups that I can access whenever I want #MigraineChat |
| My Chronic Brain @mychronicbrain a2. Also, don't be afraid to leave a group, even a popular one. Not everyone clicks! And what works for one group (e.g. humor, venting, etc) might not work for you. #migrainechat |
| Beth Morton @beth_morton @bhendykat Yes, reread and sometimes retry things. That's great advice! #MIgraineChat |
| Beth Morton @beth_morton RT @migrainesallday: A1: A1: it plays a huge role. Often times it’s the only place I feel supported and validated by people who know exactly what I’m going through. Twitter and Instagram are my mini support groups that I can access whenever I want #MigraineChat |
| My Chronic Brain @mychronicbrain @migrainesallday Pocket sized support ;) (By the way, glad you made it!) #migrainechat |
| Beth Morton @beth_morton Q3. If you haven't shared already, in what ways has social media positively affected your life with #migraine? #MigraineChat |
| My Chronic Brain @mychronicbrain @smithbrainz Exactly. It's one of the benefits of online support-- you're not limited by geography. You can search out the people you feel most comfortable with. #migrainechat |
| Beth Morton @beth_morton @SarahLerner I was going to share that in a later response (the pitfalls). I agree and this is a fantastic piece. #MigraineChat |
 | Pia @MoretoreadO It's important to find groups that are supportive and informative. There is a lot of negativity out there. #migrainechat |
| Krista @Kristacatlady A3: scoal media has helped keep me semi sane. People have really helped me feel better emotionally. #MigraineChat |
| Beth Morton @beth_morton A3.a. In so many ways! I’ve been able to connect with researchers, doctors, and advocates who have all taught me so much about #migraine. I’ve become a better advocate for myself. It also gives me a way to advocate for others without leaving home. #MigraineChat |
| Beth Morton @beth_morton A3.b. I’ve also made friends who keep me positive and motivated. Social media keeps me from feeling too isolated given I now live quite far from many of my closest, healthier friends. #MigraineChat |
| Dr. Alexandria Szeman: Award-Winning Author @Alexandria_SZ RT @beth_morton: A3.a. In so many ways! I’ve been able to connect with researchers, doctors, and advocates who have all taught me so much about #migraine. I’ve become a better advocate for myself. It also gives me a way to advocate for others without leaving home. #MigraineChat |
| My Chronic Brain @mychronicbrain @SarahLerner So true. Like, "I have this weird thing--" and someone jumps in, "Me too!" You can learn a lot about migraine that way. #migrainechat |
| Jenn Heater, Chief Oddity (she/her) @Medical_Oddity A3: I feel like sharing what I’ve been going through, the good, the bad and the ugly, can be scary—but if it helps someone else feel less alone—I’m happy. #MigraineChat |
| Krista @Kristacatlady @bhendykat Great point, Eric. Me as well. #MigraineChat |
 | Aparna R. @aparna_r_writer A1. I have chronic migraine & have been involved in Facebook support groups for years. I’ve recently started to get more involved in this community on Twitter. The support, info, & community I find in social media is a lifeline in dealing with an isolating disease. #MigraineChat |
| Jenn Heater, Chief Oddity (she/her) @Medical_Oddity RT @beth_morton: A3.a. In so many ways! I’ve been able to connect with researchers, doctors, and advocates who have all taught me so much about #migraine. I’ve become a better advocate for myself. It also gives me a way to advocate for others without leaving home. #MigraineChat |
| My Chronic Brain @mychronicbrain @aparna_ramen Hi, Aparna! Nice to meet you. We cannot agree more: "The support, info, & community I find in social media is a lifeline in dealing with an isolating disease." #migrainechat |
| Beth Morton @beth_morton Q4. What have been some pitfalls to #migraine-related social media? #MigraineChat |
| My Chronic Brain @mychronicbrain @migrainediva @beth_morton Glad you made it, Jamie! Wish we could send you an ice pack and chicken noodle soup. #migrainechat |
| Beth Morton @beth_morton @migrainediva @mychronicbrain Happy to have you, Jaime! Catch up as you can and answer what you feel up to. 💜 #MigraineChat |
| Aparna R. @aparna_r_writer A2. Don’t be afraid to reach out. Often one group or connection leads to another. The American Migraine Foundation and the Migraine World Summit are great resources for information, advocacy, & treatment. #MigraineChat https://t.co/6mhkCE9RMf |
| Jenn Heater, Chief Oddity (she/her) @Medical_Oddity A4: I think it’s true when they say social media can be addictive. Sometimes I need to just stay off of it and give my eyes and brain a break, but….. #MigraineChat |
 | Jaime M Sanders | The Migraine Diva (she/her/hers) @migrainediva @beth_morton A1. Social media gave me a family of Warriors I would have never known without it. And it has been a key instrument in my journey to patient advocacy. I wouldn’t be who I am today if I never started blogging and posting on social media. #migrainechat |
| Beth Morton @beth_morton A4a. I get frustrated by misinformation. I sometimes feel like I have to correct everything I see, but it is exhausting & never ending & sometimes engages people who aren’t kind. I’ve encountered stigma, people who think #migraine isn’t serious or disabling, etc. #MigraineChat |
| My Chronic Brain @mychronicbrain A4. Comparison. Look at them work/parent/travel/exercise/be-generally-amazing! All I do is [fill in the blank]. You know? #migrainechat |
| Dr. Alexandria Szeman: Award-Winning Author @Alexandria_SZ RT @beth_morton: Q4. What have been some pitfalls to #migraine-related social media? #MigraineChat |
| Jenn Heater, Chief Oddity (she/her) @Medical_Oddity @migrainediva @beth_morton And the migraine community is thankful for your advocacy @migrainediva!!! #MigraineChat |
| My Chronic Brain @mychronicbrain @aparna_ramen Agreed! Two good ones. Here are the user names for anyone following along who isn't connected with them already: @amfmigraine and @MigraineSummit #migrainechat |
| Beth Morton @beth_morton A4.b. There’s also FOMO, seeing all the posts from healthier friends and missing my old life before #chronicmigraine. Or having something I post misinterpreted. #MigraineChat |
| My Chronic Brain @mychronicbrain @greengoddess892 Sounds like you have a good life partner! Also, "annoyed surprise" is such a great description #migrainechat |
| Beth Morton @beth_morton @Medical_Oddity Do we need to start a support group for staying *off* social media. Wait, how would we do that? By text? #MigraineChat |
 | Joseph Falzone, M.D. @JosephFalzone3 RT @migrainekrista: A2: A2: on Fb, I just searched out migraine groups. Some of them are ginormous. It can be a great way to get info. #MigraineChat |
| Rebecca @PyesMusings @beth_morton A4 Giving up sleep for twitter is clearly foolish but happens. Sometimes it would be better for me to think about something else. And it can be demoralizing when the discussion happens to be predicated on not-constant migraine. #MigraineChat |
| My Chronic Brain @mychronicbrain @SarahLerner @beth_morton 100% yes. #migrainechat |
| Jenn Heater, Chief Oddity (she/her) @Medical_Oddity @bhendykat Oh, I 100% feel this. Like, why can’t I do this if she did? But you’re right, it’s not a competition. It’s more about self-care and making sure YOU are doing the best you can. #migrainechat |
| Krista @Kristacatlady A4: I have to moderate my use because I can go from getting supported to feeling hopeless and helpless if I spend much time online. I start to get scared I will never get better, won't be able to find a good doc, etc since these seem to be common issues. #MigraineChat |
| Dr. Alexandria Szeman: Award-Winning Author @Alexandria_SZ RT @beth_morton: A4a. I get frustrated by misinformation. I sometimes feel like I have to correct everything I see, but it is exhausting & never ending & sometimes engages people who aren’t kind. I’ve encountered stigma, people who think #migraine isn’t serious or disabling, etc. #MigraineChat |
| My Chronic Brain @mychronicbrain @beth_morton @Medical_Oddity We're here for this! We can set up a Facebook group... oh wait... ;) #migrainechat |
| Jaime M Sanders | The Migraine Diva (she/her/hers) @migrainediva @beth_morton A2. There are so many great support groups on FB that you can find by searching “migraine” and awesome organizations like @CoalitionCHAMP, @NHF and @MigraineDisordr that have great resources. #migrainechat |
| Jenn Heater, Chief Oddity (she/her) @Medical_Oddity @migrainekrista Yep, the never getting better blues, get me a lot. #MigraineChat |
| Rebecca @PyesMusings @beth_morton A4b I could totally participate in those discussions and not just be passively sad, I know! Some days it’s just not happening, though. #MigraineChat |
| Aparna R. @aparna_r_writer A3. Chronic migraine is very isolating, with little recognition. Having a virtual community of people I can reach out to, follow, & share resources and information with makes a huge difference not only with helping me access treatment, but in knowing I’m not alone. #MigraineChat |
| My Chronic Brain @mychronicbrain @migrainekrista Or fearing to try a certain treatment because it didn't work for so many in a particular group. #migrainechat |
| Dr. Alexandria Szeman: Award-Winning Author @Alexandria_SZ RT @beth_morton: A4.b. There’s also FOMO, seeing all the posts from healthier friends and missing my old life before #chronicmigraine. Or having something I post misinterpreted. #MigraineChat |
| ChronicMigraine Girl 🌈✨🌈 she/her @migrainesallday A4: This hasn’t happened to me personally but always be careful exactly how much information you give away, including your name on social media. Insurance companies have been known to use this against you. Same thing with jobs.. #migrainechat |
| Pia @MoretoreadO @Medical_Oddity @bhendykat You're right it's all about what works for you. #migrainechat |
| Jaime M Sanders | The Migraine Diva (she/her/hers) @migrainediva @beth_morton I’ve met the most amazing advocates and people living w/#migraine through social media. And have forged relationships with organizations that value my story, expertise as a patient advocate and support me in ways I never expected. #migrainechat |
| My Chronic Brain @mychronicbrain @PyesMusings @beth_morton Some days it's fine to be passively sad too though. If you ever need a buddy to send you random happy gifs, hit us up. #migrainechat |
| Jenn Heater, Chief Oddity (she/her) @Medical_Oddity @bhendykat @smithbrainz @beth_morton I just got one yesterday! #migrainechat #nothankyou |
| Rebecca @PyesMusings @mychronicbrain YES. “They do all that stuff with migraine, why can’t I, I must just be lazy.” #MigraineChat |
| Beth Morton @beth_morton Q5. How can people get the most out of social media, for example, online #migraine support groups or the migraine Twitter community? #MigraineChat |
| Krista @Kristacatlady A4b: it gets hard knowing what to say to people seriously struggling as well. I feel so bad for them and feel powerless to help. I feel goofy saying 'I am so sorry you are going through this" so many times. #MigraineChat |
| Beth Morton @beth_morton A5. Aside from my recs in A2, know when to say when – take a break, if necessary. Have a filter – not all information is good information. Be mindful of what you take in, make sure it is helping your “treatment,” not hurting (mentally, physically, etc.). #MigraineChat |
| Jaime M Sanders | The Migraine Diva (she/her/hers) @migrainediva @beth_morton A4. Definitely the unsolicited cure-all for migraine, DM’s from people wanting to sell you their products, and the FOMO when you’re stuck in bed for days and see others living their lives in a way you wish you could. #migrainechat |
| My Chronic Brain @mychronicbrain @migrainesallday Pictures can be completely taken out of context too. You're too disabled to work but go on vacation? Like, shut the front door & try living your entire life in pain. When the one vacation a decade comes I'm going to drug up and try to get a good pic. #migrainechat |
| Dr. Alexandria Szeman: Award-Winning Author @Alexandria_SZ A very big thing, especially since medical marijuana got legalized in some US states. Oh, man, the DMs for products and services to cure #migraine #MigraineChat |
| Dr. Alexandria Szeman: Award-Winning Author @Alexandria_SZ RT @migrainediva: @beth_morton I’ve met the most amazing advocates and people living w/#migraine through social media. And have forged relationships with organizations that value my story, expertise as a patient advocate and support me in ways I never expected. #migrainechat |
| My Chronic Brain @mychronicbrain This hurts because it's true. #migrainechat |
| Dr. Alexandria Szeman: Award-Winning Author @Alexandria_SZ RT @beth_morton: Q5. How can people get the most out of social media, for example, online #migraine support groups or the migraine Twitter community? #MigraineChat |
| Jenn Heater, Chief Oddity (she/her) @Medical_Oddity @SarahLerner YES! I went on my first vacation since moving back to the Bay from LA 5 years ago and posted zero pictures because I was afraid of being judged and the aforementioned social media monitoring. Now what did I do on vacation. Lay in bed in a different locale? #MigraineChat |
| My Chronic Brain @mychronicbrain "the biggest gift you can give to a friend who has one is your understanding and compassion." Well put. #migrainechat |
| My Chronic Brain @mychronicbrain @PyesMusings Ugh! The "L" word. #migrainechat |
 | Cascadia Fire Has No Season @barkflight @beth_morton A4: Makes it that much easier for people to bombard you with unsolicited advice (i.e., "it's just a headache!). #MigraineChat |
| Jaime M Sanders | The Migraine Diva (she/her/hers) @migrainediva @beth_morton A5. Know that it’s okay to take a break from it all. Sometimes it’s easy to get overwhelmed by all of it. And take everything with a grain of salt. Try not to let others negativity or victories dictate how you feel or see yourself. #migrainechat |
| Jenn Heater, Chief Oddity (she/her) @Medical_Oddity I mean, this goes for anyone with chronic illness. Take it to heart please. Kindness is always the way. #MigraineChat |
| My Chronic Brain @mychronicbrain A5. We said it before, but it bears repeating: find a group that works for you. It's not worth your limited energy to be around people who make this already difficult life harder. It's not a failure (on either end) to leave a group. #migrainechat |
| My Chronic Brain @mychronicbrain @migrainediva @beth_morton Well put. But so hard. #migrainechat |
| Jenn Heater, Chief Oddity (she/her) @Medical_Oddity @beth_morton I have nothing to add. What Beth said. #MigraineChat |
| Aparna R. @aparna_r_writer This is a large part of why I avoided posting on public social media pages (Twitter, public FB profile) and stuck to private FB groups until recently, even though I had chronic migraine for >15 years. Due to this and the stigma. But I’ve run out of fucks to give. #MigraineChat |
| Beth Morton @beth_morton Q6. If you haven't already, do you want to share some of your favorite #migraine-related social media resources and why you like them? #MigraineChat |
| Jenn Heater, Chief Oddity (she/her) @Medical_Oddity @SarahLerner @beth_morton Especially when you are forced to leave a career and make major life changes to accommodate your chronic illness. The grieving process is long and the hurt echoes and pops up when you least expect it. #MigraineChat |
| My Chronic Brain @mychronicbrain A4. Lingo. Each social media group has their own jargon and it can be intimidating. Just saying... #migrainechat |
| My Chronic Brain @mychronicbrain @MommaJacy Hi Jacy! Thanks for the kind offer. We're here for you too. #migrainechat |
| Beth Morton @beth_morton Sorry, had a short internet connection interruption (of course, perfect timing)! #MigraineChat |
| Beth Morton @beth_morton A6. Just a fraction, check who I follow... Orgs: @amfmigraine @CoalitionCHAMP @headachemigraine @NHF Docs: @headachedoc @AmaalStarling @DawnBuse Advocates: @CMLifeblog @GoldenGraine Support: @migrainemeander @MigraineStrong1 @mndflmigraine @mychronicbrain #MigraineChat |
| Aparna R. @aparna_r_writer A5. Pace yourself, take breaks, and don’t compare yourself with others. We’re all on our own journey with this disease. And many of us are dealing with multiple chronic illnesses. All of our ways of dealing are valid. #MigraineChat |
| My Chronic Brain @mychronicbrain Great list of migraine Twitter accounts! #migrainechat |
| Beth Morton @beth_morton @amfmigraine @CoalitionCHAMP @NHF @headachedoc @AmaalStarling @DawnBuse @CMLifeblog @GoldenGraine @migrainemeander @MigraineStrong1 @mndflmigraine @mychronicbrain No disrespect to the dozens of folks left off the above tweet. #MigraineChat |
| My Chronic Brain @mychronicbrain A6. Just discovered Migraine Memes (group on Facebook). If you use humor as a coping tool, you might enjoy that bunch! #migrainechat |
| My Chronic Brain @mychronicbrain @beth_morton @amfmigraine @CoalitionCHAMP @NHF @headachedoc @AmaalStarling @DawnBuse @CMLifeblog @GoldenGraine @migrainemeander @MigraineStrong1 @mndflmigraine Feel like we'd be tweeting for hours if we included every awesome person and group. #migrainechat |
| Jenn Heater, Chief Oddity (she/her) @Medical_Oddity @US_Pain is not specifically migraine focused but they have great migraine resources and great advocacy tools. #MigraineChat |
| My Chronic Brain @mychronicbrain @SarahLerner @beth_morton We accidentally searched for "applesauce" instead of "applause" on gify and well... #migrainechat https://t.co/r7ZFFNsIUj |
| Beth Morton @beth_morton @SarahLerner I'm a SO happy that you find it useful and that you join us each month, Sarah. Your insights are really valuable. Thank you! #MigraineChat |
| Beth Morton @beth_morton Closing Thoughts (CT): Whoosh! That went fast, but fantastic chat! Please keep replying if you feel up to it. Also let us know… did you learn something new today? Do you have any questions we could answer after the chat? Feedback is welcome, as always. #MigraineChat |
| Jenn Heater, Chief Oddity (she/her) @Medical_Oddity @bhendykat @beth_morton I hope you come back again next month! #migrainechat! |
| My Chronic Brain @mychronicbrain Definitely welcome! We want this chat to be a helpful online resource for you. Contact either us or the amazing @beth_morton by DM or online at https://t.co/0VXjuuCi13 to send your thoughts! #migrainechat |
| Beth Morton @beth_morton @bhendykat Thanks so much for being here. Set your calendar for every first Monday of the month! #MigraineChat |
| Aparna R. @aparna_r_writer Yes! I’m tired of hiding something that affects my daily life so much. If that’s a problem for some, too bad. I’m no longer interested in air-brushing how I present my life for the comfort of able-bodied people. #MigraineChat #Disability |
| My Chronic Brain @mychronicbrain @bhendykat @beth_morton We're so glad you made it and that it's been a good experience! The chat is every month on the first Monday! Let us or @beth_morton know if you want a reminder. #migrainechat |
| My Chronic Brain @mychronicbrain @Alexandria_SZ @beth_morton Thank *you* for coming and sharing your thoughts! We'll see you next month. 💜#migrainechat |
| My Chronic Brain @mychronicbrain Thank you for chatting with us and @beth_morton today! We'll ghost on the hashtag for the next few days to answer any additional thoughts you all have. Looking forward to seeing you next month! #migrainechat https://t.co/goKa8rGOjQ |
| Beth Morton @beth_morton Last thing... On the topic of social media, if we started a #MigraineChat Facebook group to discuss the monthly topic – or other topics – between chats, would you be interested in joining or have you already hit your #migraine social media group saturation point?! (Be honest!) |
| My Chronic Brain @mychronicbrain @Alexandria_SZ @MigraineMantras Wonderful! #migrainechat |
 | Migraine World Summit @MigraineSummit It can be difficult to find objective reviews of treatments online. Those with incredible or awful reactions become the most passionate and vocal reviewers. Be mindful of this bias. #MigraineChat https://t.co/b0LR89zW5j |
| Beth Morton @beth_morton @Alexandria_SZ The concept that people can have #migraine most days or every day is so foreign. People don't get the scope of the disease. I'm not sure even social media has really helped me convey to family/friends how severe my migraine disease really is. #MigraineChat |
 | Kelly Ann Collins @itskac @beth_morton It helped me figure out what was going on! And, it allowed me to connect with others who'd been through it. Social was super useful - from Twitter and Instagram to YouTube! #MigraineChat |
 | Angie Glaser @winedarkme RT @beth_morton: A2.b. Less formally, use social media for support. I wish I’d met all of you under other circumstances, but I’m grateful for all the advice & support you provide on a near daily basis. Don’t be afraid to reach out to others with #migraine. It can be isolating. #MigraineChat |
 | Amy Mincher @historymincher Sorry I missed #MigraineChat this afternoon! @beth_morton It looks like you did a great job moderating! NEXT TIME! |
 | Sylvia Sierra @sociolinguista @beth_morton @mychronicbrain Sad that I missed this, but wanted to let people know I created a "Headache Research" Twitter list with over 60 accounts--feel free to check it out or subscribe! #MigraineChat |
 | Dr. Melissa Geraghty, Psy.D. (She/Her/Dr)🦓♿ @MindfulDrG RT @MigraineSummit: It can be difficult to find objective reviews of treatments online. Those with incredible or awful reactions become the most passionate and vocal reviewers. Be mindful of this bias. #MigraineChat https://t.co/b0LR89zW5j |
 | Nina Riggins, MD, PhD, FAAN, FAHS, UCNS Diplomate @NinaRiggins RT @MigraineSummit: It can be difficult to find objective reviews of treatments online. Those with incredible or awful reactions become the most passionate and vocal reviewers. Be mindful of this bias. #MigraineChat https://t.co/b0LR89zW5j |
 | Jessie Miller Unboxings and More @JessLj1 RT @MigraineSummit: It can be difficult to find objective reviews of treatments online. Those with incredible or awful reactions become the most passionate and vocal reviewers. Be mindful of this bias. #MigraineChat https://t.co/b0LR89zW5j |
 | Lifegraph - clinically proven migraine forecast @LifegraphM Wouldn't it be great to predict when a migraine will hit? @LifegraphM created a clinically validated smartphone app that's available now. 48 hours after you download the app, you will see your personalized migraine insights. https://t.co/LSPR7TWJfI #MigraineChat #ChronicPain https://t.co/76cQFHN2u3 |
 | Migraine, Chronic Illness, Mental Health @MigraineMantras RT @beth_morton: A6. Just a fraction, check who I follow... Orgs: @amfmigraine @CoalitionCHAMP @headachemigraine @NHF Docs: @headachedoc @AmaalStarling @DawnBuse Advocates: @CMLifeblog @GoldenGraine Support: @migrainemeander @MigraineStrong1 @mndflmigraine @mychronicbrain #MigraineChat |
| Migraine, Chronic Illness, Mental Health @MigraineMantras RT @migrainesallday: A4: A4: This hasn’t happened to me personally but always be careful exactly how much information you give away, including your name on social media. Insurance companies have been known to use this against you. Same thing with jobs.. #migrainechat |
| Migraine, Chronic Illness, Mental Health @MigraineMantras RT @migrainekrista: A4: A4: I have to moderate my use because I can go from getting supported to feeling hopeless and helpless if I spend much time online. I start to get scared I will never get better, won't be able to find a good doc, etc since these seem to be common issues. #MigraineChat |
| Migraine, Chronic Illness, Mental Health @MigraineMantras RT @beth_morton: A3.b. I’ve also made friends who keep me positive and motivated. Social media keeps me from feeling too isolated given I now live quite far from many of my closest, healthier friends. #MigraineChat |
| Migraine, Chronic Illness, Mental Health @MigraineMantras RT @beth_morton: A4a. I get frustrated by misinformation. I sometimes feel like I have to correct everything I see, but it is exhausting & never ending & sometimes engages people who aren’t kind. I’ve encountered stigma, people who think #migraine isn’t serious or disabling, etc. #MigraineChat |
| Migraine, Chronic Illness, Mental Health @MigraineMantras RT @migrainesallday: A1: A1: it plays a huge role. Often times it’s the only place I feel supported and validated by people who know exactly what I’m going through. Twitter and Instagram are my mini support groups that I can access whenever I want #MigraineChat |
| Migraine, Chronic Illness, Mental Health @MigraineMantras RT @aparna_ramen: A5. Pace yourself, take breaks, and don’t compare yourself with others. We’re all on our own journey with this disease. And many of us are dealing with multiple chronic illnesses. All of our ways of dealing are valid. #MigraineChat |
| Migraine, Chronic Illness, Mental Health @MigraineMantras RT @MigraineSummit: It can be difficult to find objective reviews of treatments online. Those with incredible or awful reactions become the most passionate and vocal reviewers. Be mindful of this bias. #MigraineChat https://t.co/b0LR89zW5j |
 | I Slapped FedSoc & Ouiser Boudreaux💉💉💉💉😷🇺🇦 @nwayne66 RT @beth_morton: Q4. What have been some pitfalls to #migraine-related social media? #MigraineChat |
| Migraine, Chronic Illness, Mental Health @MigraineMantras RT @MoretoreadO: It's important to find groups that are supportive and informative. There is a lot of negativity out there. #migrainechat |
| Migraine, Chronic Illness, Mental Health @MigraineMantras RT @beth_morton: A3.a. In so many ways! I’ve been able to connect with researchers, doctors, and advocates who have all taught me so much about #migraine. I’ve become a better advocate for myself. It also gives me a way to advocate for others without leaving home. #MigraineChat |
| Migraine, Chronic Illness, Mental Health @MigraineMantras RT @PyesMusings: @beth_morton A1 social media in general is how I stay in touch with people, since I don’t see them in person anymore. Migraine/chronic pain twitter is a source of advice and validation and sense of community, which is crucial since, again, in-person support groups are iffy #MigraineChat |
| I Slapped FedSoc & Ouiser Boudreaux💉💉💉💉😷🇺🇦 @nwayne66 RT @beth_morton: @SarahLerner I was going to share that in a later response (the pitfalls). I agree and this is a fantastic piece. #MigraineChat |
| Migraine, Chronic Illness, Mental Health @MigraineMantras RT @aparna_ramen: A3. Chronic migraine is very isolating, with little recognition. Having a virtual community of people I can reach out to, follow, & share resources and information with makes a huge difference not only with helping me access treatment, but in knowing I’m not alone. #MigraineChat |
| Migraine, Chronic Illness, Mental Health @MigraineMantras RT @beth_morton: A2.a. Vet your resources. Follow groups/orgs that provide quality information from peer reviewed (academic) sources. Join groups on Facebook, etc., that have moderators that cultivate the resources similarly. There is fake news even in the #migraine community! #MigraineChat |
| Migraine, Chronic Illness, Mental Health @MigraineMantras RT @aparna_ramen: This is a large part of why I avoided posting on public social media pages (Twitter, public FB profile) and stuck to private FB groups until recently, even though I had chronic migraine for >15 years. Due to this and the stigma. But I’ve run out of fucks to give. #MigraineChat |
| I Slapped FedSoc & Ouiser Boudreaux💉💉💉💉😷🇺🇦 @nwayne66 @SarahLerner Jesus. I worry about getting kicked off all the time. Ugh. #MigraineChat |
| Migraine, Chronic Illness, Mental Health @MigraineMantras RT @beth_morton: A1.b. I still use social media to support my treatment, but now I also have found friendships and social support from others with #migraine. I also use it to advocate for myself and others. #MigraineChat |
| Migraine, Chronic Illness, Mental Health @MigraineMantras RT @mychronicbrain: A1: A1: Social media in its various forms help us stay engaged with others. Having Chronic Migraine means that more traditional ways of being around people are really hard. #migrainechat |
| Migraine, Chronic Illness, Mental Health @MigraineMantras RT @mychronicbrain: @Alexandria_SZ @beth_morton Thank *you* for coming and sharing your thoughts! We'll see you next month. 💜#migrainechat |
| Migraine, Chronic Illness, Mental Health @MigraineMantras RT @migrainediva: @beth_morton A5. Know that it’s okay to take a break from it all. Sometimes it’s easy to get overwhelmed by all of it. And take everything with a grain of salt. Try not to let others negativity or victories dictate how you feel or see yourself. #migrainechat |
| Migraine, Chronic Illness, Mental Health @MigraineMantras RT @migrainediva: @beth_morton I’ve met the most amazing advocates and people living w/#migraine through social media. And have forged relationships with organizations that value my story, expertise as a patient advocate and support me in ways I never expected. #migrainechat |
| Migraine, Chronic Illness, Mental Health @MigraineMantras RT @beth_morton: Find the April chat questions and tips here: https://t.co/Wuemu2Ihop Pass the word and invite your friends! #MigraineChat |
| Migraine, Chronic Illness, Mental Health @MigraineMantras RT @MigraineSummit: For all of those involved in the #migrainechat discussing the difficult balance of work and migraine, we don't want you to miss the year's lecture from Stacey Worthy on "Understanding Your Workplace Rights." https://t.co/A4vAcO6HY3 |
| Migraine, Chronic Illness, Mental Health @MigraineMantras RT @migrainediva: @beth_morton A5. Look into writing for an online publication about migraine (one that pays its contributors), start a blog or vlog. Become more active in the advocacy space. Participate in local events, join an organization or start a support group. #migrainechat |
| Migraine, Chronic Illness, Mental Health @MigraineMantras RT @migrainediva: @beth_morton A4. People living w/migraine are not lazy/invaluable. They are bright, eager, creative souls who want to be productive. Migraine is a complex neurobiological disease NOT the fault of the person who has it. Work with employees to create a healthy environment. #migrainechat |
| Migraine, Chronic Illness, Mental Health @MigraineMantras RT @MigraineSummit: 94% of those surveyed reported that employers don’t understand the burden of migraine on their employees. #migrainechat https://t.co/HxZlutuoMK |
| Migraine, Chronic Illness, Mental Health @MigraineMantras RT @migrainediva: @beth_morton A3. Light filters, screen filters for computer screens, flexible hours, telework, ergonomic chairs and desks, being allowed several small breaks, and making the office a fragrance free zone - including using green cleaning products. #migrainechat |
| Migraine, Chronic Illness, Mental Health @MigraineMantras RT @NHF: @beth_morton We recently wrote a blog post about coping with migraine at college. Keeping a headache diary, creating a plan and being proactive can go a long way towards minimizing the impact of migraine and headache. #migrainechat https://t.co/Rpjp9Zcekf |
#migrainechat content from Twitter.