#migrainechat Transcript
Healthcare social media transcript of the #migrainechat hashtag.
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See #migrainechat Influencers/Analytics.
| Profile | Tweet |
|---|---|
 | 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 tips & guidelines: https://t.co/Wuemu2Ihop |
| Beth Morton @beth_morton Two helpful tips: (1) I’ll start each question with Q1, Q2, etc. Remember to start your corresponding reply w/A1, A2, etc. (or quote tweet). (2) *Always* remember the #MigraineChat hashtag! Makes following the conversation easier & gets your tweets in the transcript. |
| Beth Morton @beth_morton Who is joining #MigraineChat today? If you want, introduce yourself in a way you are comfortable. I’m Beth and I’m moderating from Vermont where we are in full on fall. Leaf peeping anyone? #MigraineChat https://t.co/rA0HJfjjXr |
| Beth Morton @beth_morton @Alexandria_SZ Hello! Thanks for joining #MigraineChat today! 💜 |
 | Rebecca @PyesMusings @beth_morton #migrainechat let’s see if I can remember to hashtag... |
 | Roni Jones(she/her)💉💉💉 @MsRoniAnne @beth_morton I'm going to try and hang in there with you, still in hospital and feeling very nauseous. Medications coming soon. Otherwise have a great #MigraineChat! 💜 |
| Beth Morton @beth_morton I'm not sure if our guest co-host, Shoshana (@MigraineMeanderer), is with us this afternoon. She's an invaluable source of info on today's topic, but might be out with #migraine today. Shoshana, check in with the #MigraineChat folks if you're online! |
 | Dr. Alexandria Szeman: Award-Winning Author @Alexandria_SZ RT @beth_morton: I'm not sure if our guest co-host, Shoshana (@MigraineMeanderer), is with us this afternoon. She's an invaluable source of info on today's topic, but might be out with #migraine today. Shoshana, check in with the #MigraineChat folks if you're online! |
| Beth Morton @beth_morton Ooops, that's @migrainemeander. #MIgraineChat |
| Beth Morton @beth_morton A few standing reminders. This #MigraineChat is purely informational. Nothing shared should be considered medical advice or a substitute for talking with your doctor. If you don’t have one, find a #headache specialist here: https://t.co/ECwDhBTzAw |
| Dr. Alexandria Szeman: Award-Winning Author @Alexandria_SZ .@MigraineMeander |
| Beth Morton @beth_morton Also, Twitter is a public forum and we are discussing health-related topics. Share only what is comfortable for you. #MigraineChat |
| Beth Morton @beth_morton The last year has brought some new migraine treatments to the US, Canada, and other parts of the world. Others are still awaiting their approval. Let’s chat about them and our experiences (or lack thereof...). #MigraineChat |
 | JenX 👻 @Jen9Cat @PyesMusings @beth_morton Jen Northern IL. 2nd to booooo weather changes. So. Much. Rain. #migrainechat. |
| Beth Morton @beth_morton Q1: Have you been able to try one – or more – of the #CGRP antibodies for #migraine? What has been your experience, so far, in terms of effectiveness? #MigraineChat https://t.co/7vy1yjNW1S |
| Rebecca @PyesMusings @beth_morton A1 I tried Ajovy 1st (bc aimovig’s original no/low-cost program was so badly done) but didn’t see a change after 3mo, which my neuro said should be enough. Now on aimovig for ~6mo, and have seen a significant improvement. #MigraineChat |
| Beth Morton @beth_morton A1c: I now have the loading doses of #Emgality sitting in my fridge and am debating trying it. Actually, curious about all your experiences going through the three #CGRPs. #MigraineChat |
| Beth Morton @beth_morton A1a: I first tried #Aimovig. Though I thought it helped at first, after six months, I switched to #Ajovy. I had no benefit on that. I’ve blogged about both experiences in detail. I’ve also written about the #CGRP antibodies for @mychronicbrain. #MigraineChat |
| Beth Morton @beth_morton A1b: #Aimovig blog - https://t.co/zJrBQctpKR #Ajovy blog - https://t.co/R2j2GxWUPo My Chronic Brain article - https://t.co/pEEbVqQsH7 #MigraineChat |
| Dr. Alexandria Szeman: Award-Winning Author @Alexandria_SZ RT @beth_morton: Q1: Q1: Have you been able to try one – or more – of the #CGRP antibodies for #migraine? What has been your experience, so far, in terms of effectiveness? #MigraineChat https://t.co/7vy1yjNW1S |
| Rebecca @PyesMusings @beth_morton A1.2 I started seeing improvement w/in a month or 2 of starting aimovig. Fascinating (also frustrating) how the different meds work so differently on different people #migrainechat |
| Dr. Alexandria Szeman: Award-Winning Author @Alexandria_SZ RT @beth_morton: A1a: A1a: I first tried #Aimovig. Though I thought it helped at first, after six months, I switched to #Ajovy. I had no benefit on that. I’ve blogged about both experiences in detail. I’ve also written about the #CGRP antibodies for @mychronicbrain. #MigraineChat |
| Dr. Alexandria Szeman: Award-Winning Author @Alexandria_SZ RT @beth_morton: A1b: A1b: #Aimovig blog - https://t.co/zJrBQctpKR #Ajovy blog - https://t.co/R2j2GxWUPo My Chronic Brain article - https://t.co/pEEbVqQsH7 #MigraineChat |
| Dr. Alexandria Szeman: Award-Winning Author @Alexandria_SZ RT @beth_morton: A1c: A1c: I now have the loading doses of #Emgality sitting in my fridge and am debating trying it. Actually, curious about all your experiences going through the three #CGRPs. #MigraineChat |
| Beth Morton @beth_morton @rachel_x_graves I wish this was really local. Unfortunately, just a GIF I searched. It's rainy and dreary today. Thanks for being here today! #MigraineChat |
 | Aparna R. @aparna_r_writer @beth_morton I’m Aparna from Minnesota. It’s full on fall here too, and while I love the colors, I’m not looking forward to the long winter! #MigraineChat |
| Beth Morton @beth_morton @aparna_r_writer Same. Every winter, I dream about moving south six months a year. #MigraineChat |
| Beth Morton @beth_morton Q2: If you’ve had a positive experience, how has your life changed since starting a CGRP antibody? #MigraineChat |
| Beth Morton @beth_morton #MigraineChat https://t.co/dP0TUoL6VG |
| Rebecca @PyesMusings @beth_morton A2 I honestly still feel like I’m constantly going balls to the wall, but the wall is a lot farther out. The improvement is mostly going towards being more there for my kids, but I’m also working more, #MigraineChat |
| Rebecca @PyesMusings @beth_morton A2.2 esp now that weather is permitting my daily walk—the walk seems to be vital, and the cgrp got me well enough to do it most days. #MigraineChat |
| JenX 👻 @Jen9Cat @beth_morton A1a. Aimovig first for about 4 mths. I didn't notice a big difference & side effects weren't fun. Switched to Emgality. Aside from premenstrual & pressure migraines, I'm def having less downtime. #migrainechat |
| Beth Morton @beth_morton @rachel_x_graves @SarahLerner Me, three. I keep hoping there's another mechanism besides CGRP that they'll come up with a treatment for ASAP. I know there are some being investigated, it just feels so far off... #MigraineChat |
| Aparna R. @aparna_r_writer @beth_morton A1: I’ve been lucky enough to try all 3 out so far. I was actually in a phase III clinical trial for Ajovy last spring, and it halved the severity & frequency of my daily migraines. Severe fatigue as a side effect though, & was compelled to drop out of the trial. #MigraineChat |
| Aparna R. @aparna_r_writer @beth_morton A1: Next I tried Aimovig and the Emgality, but neither were effective, and Emgality especially came with severe side effects (severe body pain/arthralgia). Was finally able to get back on Ajovy in January. #MigraineChat |
| Beth Morton @beth_morton @RoyallyRebecca Insurance barriers are incredibly frustrating and a huge disservices to people with #migraine who've found a treatment that works. I hope Emgality works as well for you. #MigraineChat |
| Beth Morton @beth_morton Q3: Did you experience any side effects you think you can attribute to the CGRP antibody? Remember, it’s not always possible to know for sure if side effects are from the medication. Be honest, but try not frighten others. Everyone is different. #MigraineChat https://t.co/3sf4gCeqlJ |
| Rebecca @PyesMusings @beth_morton A3 I’m usually side effect city (which I gather is normal for people with chronic migraine), and I haven’t noticed a single side effect 🤷♀️ #MigraineChat |
| Dr. Alexandria Szeman: Award-Winning Author @Alexandria_SZ RT @beth_morton: @RoyallyRebecca Insurance barriers are incredibly frustrating and a huge disservices to people with #migraine who've found a treatment that works. I hope Emgality works as well for you. #MigraineChat |
| Beth Morton @beth_morton A3a. I definitely had constipation on Aimovig, but I also have IBS, so wonder if I was more prone to it. I think the CGRPs affected my menstrual cycle, but after four months off them, I’m still irregular, so now I’m unsure. #MigraineChat |
| Beth Morton @beth_morton A3b: There were times I wondered if Ajovy made me feel a little worse. I sometimes noticed my #migraine attacks were slightly better as I was nearing the time for my next injection. That was what made me stop it. #MigraineChat |
| JenX 👻 @Jen9Cat @PyesMusings @beth_morton A2 I can't say I get out daily. But yes, I'm also able to go for a walk/ workout more often than before which is HUGE! #migrainechat |
| Dr. Alexandria Szeman: Award-Winning Author @Alexandria_SZ RT @beth_morton: A3b: A3b: There were times I wondered if Ajovy made me feel a little worse. I sometimes noticed my #migraine attacks were slightly better as I was nearing the time for my next injection. That was what made me stop it. #MigraineChat |
 | Migraine World Summit @MigraineSummit Check out this month's #migrainechat to discuss your experience with CGRP antibodies and hear the stories of others! |
| Rebecca @PyesMusings @beth_morton A3.1 but looking at @aparna_r_writer’s comment about body/joint pain, I’m going to need to go back and figure out when I started experiencing that. Even if it’s a side effect of aimovig, mine is acceptable so far #migrainechat |
| Aparna R. @aparna_r_writer @beth_morton A1: Since starting Ajovy last year, which cut the severity & frequency of my CM by 50% and broke the cycle of daily migraines, I’ve been more functional, able to do more. Started a PT job over the summer, been able to take more classes this fall. Write more. #MigraineChat |
 | Julie is A REAL BIRD @jmatwood A3: Yup, and they were easy to tell because of how long it took the medication to wear off. The listed side effect of constipation, plus waking up a lot in the night, massive fatigue flare, sneezing. Basically I felt like I was on Maxalt the whole time. Happy I only got one dose. |
| Beth Morton @beth_morton Q4: If you’ve had no benefit or a poor experience on a CGRP antibody, what treatment are you looking to next? How are you maintaining hope? #MigraineChat https://t.co/cvBP70GbwV |
| Beth Morton @beth_morton A4a: I’m awaiting some of the small molecule CGRPs and Lasmiditan which should be approved later this year. The new device, Nerivio Migra should be available in some HAS’ offices this month and more widely next spring. #MigraineChat |
| Beth Morton @beth_morton A4b: Personally, I’m setting expectations low for these, but the fact that #migraine researchers are working on targeted therapies is encouraging to me. Hopefully, as more mechanisms of #migraine are uncovered, a corresponding treatment will help me. #MigraineChat |
| JenX 👻 @Jen9Cat @beth_morton A3. The Aimovig constipation was REAL. That's why my doc switched me to Emgality. I do notice extra fatigue & general lethargy for a few days. I try not to schedule much and focus on house stuff. #migrainechat |
| Dr. Alexandria Szeman: Award-Winning Author @Alexandria_SZ RT @beth_morton: A4b: A4b: Personally, I’m setting expectations low for these, but the fact that #migraine researchers are working on targeted therapies is encouraging to me. Hopefully, as more mechanisms of #migraine are uncovered, a corresponding treatment will help me. #MigraineChat |
| Aparna R. @aparna_r_writer @beth_morton A3: With Ajovy: severe fatigue (increased a lot during the clinical trial, but I later learned I also have underlying CFS. For me, worth the benefit though). #migrainechat |
| Aparna R. @aparna_r_writer @beth_morton A3: With Emgality: severe body pain/arthralgia. Severe enough I ended up in the ER (sorry, don’t mean to scare anyone, but it definitely wasn’t for me). #MigraineChat |
 | InayVanDerWoodsen @InayVanDWoodsen RT @MigraineSummit: Check out this month's #migrainechat to discuss your experience with CGRP antibodies and hear the stories of others! |
| Beth Morton @beth_morton @aparna_r_writer Did the body pain resolve when you stopped Emgality (after a wear-off period)? I have some undiagnosed body pain/fatigue that I'm a little worried about exacerbating. #MIgraineChat |
| JenX 👻 @Jen9Cat @beth_morton A4. I always try to set my expectations low. Then I can be pleasantly surprised ;) Even tho I've had pretty good results, it makes the bad days that much worse, esp if they come in succession. I know what CAN be now and I want MOAR! I need to work on that. #migrainechat |
| Beth Morton @beth_morton @rachel_x_graves Sometimes, I'm not super hopeful and that's okay, too. #MigraineChat. |
| Beth Morton @beth_morton Q5: Have you tried one of the #migraine neuromodulators/devices; i.e., #Cefaly, #sTMS, or #gammaCore? What has been your experience? #MigraineChat https://t.co/eXPQk6Yfyx |
| JenX 👻 @Jen9Cat @beth_morton A4b. I have been doing Curable. Sporadically. I really should get more into it, but it's some deep work. Frankly, crying is a hug trigger, so I try to avoid it. Electrolyte drinks esp this summer helped a LOT! #migrainechat |
| Dr. Alexandria Szeman: Award-Winning Author @Alexandria_SZ RT @beth_morton: Q5: Q5: Have you tried one of the #migraine neuromodulators/devices; i.e., #Cefaly, #sTMS, or #gammaCore? What has been your experience? #MigraineChat https://t.co/eXPQk6Yfyx |
| Rebecca @PyesMusings @beth_morton A5 I tried one cefaly treatment when I was at an inpatient program. It kind of felt like tickling my frontal lobe, but I didn’t notice any change in the migraine, so the dr said probably not worth pursuing further #MigraineChat |
| Beth Morton @beth_morton A5a: I have the 2nd version of Cefaly. I’ve also tried sTMS mini (3 months) and gammaCore (7 months). I sometimes use Cefaly during an attack, on low, to temporarily dull the pain. It never helped preventively and is too painful at high settings. #MigraineChat |
| Beth Morton @beth_morton A5b. The sTMS didn't help after 3 months and was too expensive to keep trying. #MigraineChat |
| Beth Morton @beth_morton A5c: I’ve blogged about my gammaCore experience. If my #migraine starts out minimal and builds into an attack throughout the day, I can sometimes abort it with the device. https://t.co/GEV7VdsTAJ #MigraineChat |
| Dr. Alexandria Szeman: Award-Winning Author @Alexandria_SZ RT @beth_morton: A5c: A5c: I’ve blogged about my gammaCore experience. If my #migraine starts out minimal and builds into an attack throughout the day, I can sometimes abort it with the device. https://t.co/GEV7VdsTAJ #MigraineChat |
| Beth Morton @beth_morton @Jen9Cat If you still have commercial insurance, make sure to also get in on the co-pay program. electroCore pays it while they attempt to get your insurance to cover the device (not valid for government ins, unfortunately). #MigraineChat |
| Beth Morton @beth_morton @smithbrainz I've seen quite a few anecdotal reports of CGRPs worsening Raynaud's symptoms. #MigraineChat |
| Beth Morton @beth_morton Q6: Have you encountered any barriers to accessing CGRP antibodies or neuromodulators/devices? Have barriers been a factor in deciding to continue using one of these treatments? #MigraineChat https://t.co/f6NXm42FOZ |
| Beth Morton @beth_morton A6b: I’m trying to get creative to keep access to the gammaCore. For those interested in any access issues with #CGRPs or gammaCore, check out the @CoalitionCHAMP assistance guides. https://t.co/j0zLN3oBAY #MigraineChat |
| Beth Morton @beth_morton A6a: I’ve been pretty lucky in terms of the #CGRPs. My insurance covered them and with prescription assistance, my copays are low. Devices on the other hand, are expensive and my insurance has denied sTMS and gammaCore. Both are too expensive to pay out of pocket. #MigraineChat |
| Rebecca @PyesMusings @beth_morton * A6 I’m on a good BCBS plan, and they’ve still managed to suck, but my neuro was able to give me samples for the months till BCBS got around to (a) telling me that they were wrong when they told me last year they were dropping cgrps from the formulary(!!) #migrainechat |
| Rebecca @PyesMusings @beth_morton A6.1 and then (b) admitting they’d lost the prior auth my neuro had sent them. (Which, side note, they already wrote me a fucking rx; making me get them to send an additional “no, really” to the insurer seems like such transparent bs). #MigraineChat |
| JenX 👻 @Jen9Cat @beth_morton And samples too. Love my neuro. #migrainechat |
| Beth Morton @beth_morton CT: Did you learn new anything today? Still have questions? Feel free to tweet or DM me. I'll check the hashtag throughout the rest of today and tomorrow, and reply to any questions I see. Thanks for another great #MigraineChat! I so enjoy our monthly gatherings! |
| Beth Morton @beth_morton Google form for #MigraineChat reminders: https://t.co/cuSVVWuqkE |
| Beth Morton @beth_morton I’ll only be sending tweet reminders, not DMs now. If you were previously signed up for DM reminders and I don’t hear from you opting in to tweet reminders (reply to my last DM, fill out form Google again), I’ll assume no #MigraineChat reminders. |
| JenX 👻 @Jen9Cat @smithbrainz @beth_morton Now that you mention it, while on Aimovig I had my first ever bout of night sweats. Did not put it together. Haven't since switching. Hrm. #migrainechat |
 | Cascadia Fire Has No Season @barkflight @beth_morton A6: I am on Medicare so I can't get prescription assistance. My insurance approved the pens at $100/month. Emgality didn't work anyway. #migrainechat |
| Beth Morton @beth_morton Between chats, I'll post questions in the private #MigraineChat Facebook page and set up monthly reminders there, too. Feel free to join. https://t.co/yNOnXikxEE |
| Beth Morton @beth_morton @barkflight Ugh, yeah, Medicare rules really suck when they don't allow financial assistance from pharma companies. I lost access to the gammaCore because of this. #migrainechat |
| Beth Morton @beth_morton @barkflight I picked a part D plan that would cover Emgality (the last of the CGRPs for me to still try) and my state has assistance that brings the copay down. If I try Emgality, I have pretty low expectations at this point. #migrainechat |
 | Amy Ferraro-Kick ED’s Butt @acf1973 @beth_morton Hi. I’m Amy from New Jersey. #MigraineChat |
#migrainechat content from Twitter.