WEBVTT 00:00.868 --> 00:03.451 (gentle music) 00:10.015 --> 00:12.598 (somber music) 00:18.047 --> 00:20.880 (energetic music) 00:25.706 --> 00:28.289 (upbeat music) 00:33.480 --> 00:35.970 Hello, welcome back to "Invisible Encourage" 00:35.970 --> 00:38.730 with the Invisible Disabilities Association. 00:38.730 --> 00:41.100 Today I am here with Dr. Beth Morton, 00:41.100 --> 00:44.280 and we're discussing her efforts in research, advocacy, 00:44.280 --> 00:46.701 and her journey with chronic migraine. 00:46.701 --> 00:47.550 Hi Beth. 00:47.550 --> 00:49.140 Hi Kelly. 00:49.140 --> 00:51.040 So tell us a little about 00:52.140 --> 00:53.610 your journey with education 00:53.610 --> 00:55.983 and then how migraine has affected that. 00:56.940 --> 00:57.990 Yeah. 00:57.990 --> 01:00.480 So I was... 01:00.480 --> 01:01.830 I was living in Boston 01:01.830 --> 01:06.270 and in the middle of finishing my PhD 01:06.270 --> 01:11.270 when my migraine attacks decided to become a problem. 01:12.330 --> 01:14.520 It was episodic for about 20 years. 01:14.520 --> 01:18.423 And then in the last year of my PhD, 01:19.740 --> 01:22.320 it was just sort of the perfect storm of stressful events. 01:22.320 --> 01:25.500 I had the stress of finishing a dissertation. 01:25.500 --> 01:27.840 I was working almost full time, 01:27.840 --> 01:30.390 and I had some sort of personal family stress, 01:30.390 --> 01:34.440 and all of those things kind of combined. 01:34.440 --> 01:38.460 And my migraine attacks went from episodic to chronic 01:38.460 --> 01:41.820 pretty quickly over a period of about six months. 01:41.820 --> 01:46.110 So I finished my PhD. 01:46.110 --> 01:51.110 I worked for another about six to eight months, 01:53.160 --> 01:56.940 and then they became just too... 01:56.940 --> 01:58.140 Even with accommodations, 01:58.140 --> 02:00.430 my work was great at 02:01.380 --> 02:03.750 giving me all the accommodations that we could come up with, 02:03.750 --> 02:07.500 and I could still not keep up. 02:07.500 --> 02:08.670 I tried. 02:08.670 --> 02:12.460 I'm sure a lot of the people who are listening who are 02:13.620 --> 02:15.963 like me can relate to that. 02:16.890 --> 02:19.360 So yeah, that's sort of 02:21.298 --> 02:25.110 how my invisible disability 02:25.110 --> 02:28.280 became a little less invisible, I guess. 02:28.280 --> 02:31.290 That's when I couldn't really hide it anymore. 02:31.290 --> 02:36.290 Exactly, and the emotional, financial, social, 02:36.390 --> 02:39.870 every part of your life is impacted when you have to 02:39.870 --> 02:43.650 give up working and prioritize your health really. 02:43.650 --> 02:45.228 Exactly. 02:45.228 --> 02:46.960 It was a point where 02:48.660 --> 02:49.920 chronic migraine... 02:49.920 --> 02:51.363 And even before that, 02:53.730 --> 02:55.980 I had developed another chronic illness which had 02:55.980 --> 02:58.380 sort of started to impact my life 02:58.380 --> 03:00.090 in some pretty meaningful ways, 03:00.090 --> 03:03.990 but chronic migraine really, at that point, was 03:03.990 --> 03:05.970 impacting every decision I made. 03:05.970 --> 03:10.970 Like you said, it impacted work, social, school, 03:11.190 --> 03:14.790 and every decision I made from the time I woke up 03:14.790 --> 03:18.390 to the time I went to bed was affected by, 03:18.390 --> 03:19.500 am I having an attack? 03:19.500 --> 03:20.973 Am I going to have an attack? 03:22.440 --> 03:25.647 And it became a huge part of my life. 03:25.647 --> 03:27.780 And the way our society is ordered, 03:27.780 --> 03:30.540 there's so much value on what your occupation is, 03:30.540 --> 03:31.373 what you're doing, 03:31.373 --> 03:34.650 and when it feels like you're almost providing nothing, 03:34.650 --> 03:37.050 it's such a huge burden to carry. 03:37.050 --> 03:40.170 Yeah, yeah, exactly. 03:40.170 --> 03:41.340 Before we go on, will you explain 03:41.340 --> 03:43.800 what episodic and chronic migraine mean? 03:43.800 --> 03:47.230 Yeah, so episodic migraine is 03:48.360 --> 03:52.260 when you have fewer than 15 attacks per month, 03:52.260 --> 03:57.260 and chronic migraine is 15 or more headache days per month. 03:58.320 --> 04:01.810 And of those, I think eight of them need to 04:02.730 --> 04:04.200 have migraine features, 04:04.200 --> 04:08.223 so sort of the light sensitivity, the nausea, 04:10.650 --> 04:13.890 sort of the other migraine symptoms beyond 04:13.890 --> 04:17.190 the head pain that you might have. 04:17.190 --> 04:20.370 So you're living with chronic pain every day 04:20.370 --> 04:21.540 For me, yep. 04:21.540 --> 04:24.390 So for chronic migraine, not everybody does. 04:24.390 --> 04:28.350 For me, I have migraine symptoms every day at this point, 04:28.350 --> 04:31.650 and that's despite my best efforts 04:31.650 --> 04:33.780 at trying every treatment. 04:33.780 --> 04:37.020 I am the person who a treatment comes out 04:37.020 --> 04:41.070 and I am the first one to, 04:41.070 --> 04:43.680 sometimes literally the first person to bug my doctor, 04:43.680 --> 04:46.023 my headache specialist, and say, 04:47.947 --> 04:49.200 "It was just approved. 04:49.200 --> 04:50.800 What do I need to do to get it?" 04:51.900 --> 04:53.820 And sometimes my insurance company 04:53.820 --> 04:56.130 doesn't even have it on the formulary yet, 04:56.130 --> 04:59.430 and I have to set reminders in my calendar 04:59.430 --> 05:04.080 to call them back week by week until they get it set up. 05:04.080 --> 05:06.363 So yeah, and despite all that, 05:07.380 --> 05:09.543 my migraine has been stubborn. 05:10.650 --> 05:12.720 So you are constantly researching with that. 05:12.720 --> 05:14.550 How does research help empower you 05:14.550 --> 05:16.080 to take some control back? 05:16.080 --> 05:19.500 Yeah, so my PhD was in research. 05:19.500 --> 05:21.360 My PhD was in education research. 05:21.360 --> 05:25.470 I was working in education program evaluation. 05:25.470 --> 05:28.080 And when my career was derailed, 05:28.080 --> 05:32.820 I decided my best thing to do was to 05:32.820 --> 05:37.820 start researching myself and migraine. 05:38.130 --> 05:41.040 And so I kind of turned my efforts inward 05:41.040 --> 05:44.493 and learned everything I could about migraine. 05:47.938 --> 05:48.771 At first, 05:51.131 --> 05:53.320 it was kind of a very personal and 05:56.250 --> 05:57.540 selfish thing to do. 05:57.540 --> 06:00.330 I just wanted to learn everything I could to help myself, 06:00.330 --> 06:02.340 and then got to a point where I was like, 06:02.340 --> 06:04.380 okay, I've learned what I can 06:04.380 --> 06:06.210 and I'm seeing that other people are 06:06.210 --> 06:08.640 where I was six months ago, a year ago. 06:08.640 --> 06:10.170 What can I do to help them? 06:10.170 --> 06:13.320 Can I do anything to help others that were like me? 06:13.320 --> 06:14.630 It's very... 06:16.890 --> 06:18.970 I guess, I felt like I had some 06:19.950 --> 06:22.740 advantage having the background I have in research. 06:22.740 --> 06:24.240 It's not clinical research. 06:24.240 --> 06:27.210 It's not even in health, 06:27.210 --> 06:28.890 but I knew statistics 06:28.890 --> 06:31.710 and I knew how to read an academic paper. 06:31.710 --> 06:35.310 So I had a little bit of an advantage over 06:35.310 --> 06:36.390 other migraine patients. 06:36.390 --> 06:39.360 So I was a little more equipped to 06:39.360 --> 06:42.840 break down some of the research and help others. 06:42.840 --> 06:47.610 So I've been trying to do that as much as I can. 06:47.610 --> 06:49.860 I know there are many people who are better equipped, 06:49.860 --> 06:52.923 but I feel like if I can do what I can, 06:54.450 --> 06:57.630 that's kind of been what I've been trying to do 06:57.630 --> 07:00.720 as a sort of pay it back, pay it forward. 07:00.720 --> 07:02.670 You've done such an incredible job. 07:02.670 --> 07:04.830 I have been following you for so long, 07:04.830 --> 07:07.440 and all of your research breakdowns are so helpful. 07:07.440 --> 07:10.830 So tell us ways that you have been 07:10.830 --> 07:13.290 breaking down the research and making it more accessible. 07:13.290 --> 07:15.870 Well, I'd like to do more and try to do it more formally, 07:15.870 --> 07:18.210 but a lot of what I do is... 07:18.210 --> 07:19.590 Twitter is kinda my home base. 07:19.590 --> 07:21.170 That's where I like to... 07:22.530 --> 07:25.380 It's just you can get a lot of information across on Twitter 07:25.380 --> 07:27.210 and there's a lot of great people to follow on Twitter. 07:27.210 --> 07:31.433 So I think when I first was... 07:33.030 --> 07:35.010 When my attacks were first becoming chronic, 07:35.010 --> 07:36.840 I spent a lot of time in Facebook groups 07:36.840 --> 07:40.500 and I would say even three years ago, 07:40.500 --> 07:43.660 some of the groups I was in were not as 07:45.480 --> 07:47.340 high quality as some of the ones that are out there now. 07:47.340 --> 07:49.770 There's some really great Facebook groups out there 07:49.770 --> 07:53.340 that are led by some really great migraine advocates 07:53.340 --> 07:56.850 that the research that they share very well. 07:56.850 --> 07:59.700 And so those are great resources. 07:59.700 --> 08:01.320 But when I was first looking on Facebook, 08:01.320 --> 08:02.943 I felt like I wasn't getting, 08:05.340 --> 08:08.400 I wasn't feeling the information I was seeing was 08:08.400 --> 08:10.830 this sort of quality I was looking for. 08:10.830 --> 08:13.740 So I somehow kind of wandered over to Twitter 08:13.740 --> 08:14.573 and was finding, 08:14.573 --> 08:16.520 oh, well, here I'm finding more sort of, 08:18.060 --> 08:19.503 I guess, primary sources. 08:20.594 --> 08:21.960 I could see the authors of papers. 08:21.960 --> 08:24.870 I could see, I could follow headache specialists 08:24.870 --> 08:26.977 I could tweet at them and be like, 08:26.977 --> 08:29.370 "Your paper's great, could I maybe get a copy 08:29.370 --> 08:31.860 'cause I lost access to..." 08:31.860 --> 08:34.890 Now that I'm not at school, I have to pay for it. 08:34.890 --> 08:35.723 So 08:38.160 --> 08:43.160 I ended up on Twitter and a lot of times I will just... 08:44.040 --> 08:45.240 I think the greatest trick is 08:45.240 --> 08:47.430 you just sign up for Google alerts, 08:47.430 --> 08:49.380 and you get your daily alert 08:49.380 --> 08:51.570 in migraine, or headache, or cluster headache, 08:51.570 --> 08:54.030 or post-concussion syndrome. 08:54.030 --> 08:55.950 Whatever the topic you want, 08:55.950 --> 08:57.570 you get it delivered to your inbox, 08:57.570 --> 08:59.730 and there's some great articles in there, 08:59.730 --> 09:01.860 and then I just retweet them. 09:01.860 --> 09:03.997 and If I feel like there's some caveat like, 09:03.997 --> 09:05.460 "Hey guys, this is a great article, 09:05.460 --> 09:07.470 but there were only 30 people in it, 09:07.470 --> 09:10.650 or it wasn't randomized. 09:10.650 --> 09:12.180 There was no control group. 09:12.180 --> 09:16.380 So there's only so much you can do in a tweet." 09:16.380 --> 09:17.940 And I probably... 09:17.940 --> 09:20.700 What I'd love to do on my blog is, 09:20.700 --> 09:23.550 if I have more time, I've kind of set up a space 09:23.550 --> 09:26.760 and I need to be more vigilant about it. 09:26.760 --> 09:29.070 I'd like to take some of those tweets 09:29.070 --> 09:31.620 and put a little more context around them 09:31.620 --> 09:34.320 and say a little more about 09:34.320 --> 09:36.790 the pros and cons to some of the research, but 09:39.240 --> 09:40.470 best laid plans- 09:40.470 --> 09:43.500 And so, on Twitter, you set up a way that 09:43.500 --> 09:46.470 if anyone has a migraine question whatsoever, 09:46.470 --> 09:49.060 they can use a specific hashtag and then 09:50.370 --> 09:52.020 everyone will answer. Yeah. 09:52.020 --> 09:55.020 Yeah, so for the last year and a half 09:55.020 --> 09:56.610 we've been doing these migraine chats. 09:56.610 --> 09:59.670 So once a month, we have migraine chat, 09:59.670 --> 10:00.503 and 10:02.580 --> 10:03.930 that's been great. 10:03.930 --> 10:05.310 We have a few regulars. 10:05.310 --> 10:07.530 Every month, we get a few new people, 10:07.530 --> 10:09.780 There's a topic, 10:09.780 --> 10:10.920 sort of a rotating topic 10:10.920 --> 10:13.860 that I try to keep really timely and relevant, 10:13.860 --> 10:18.387 but I follow another... 10:20.280 --> 10:23.040 On Twitter, I follow this person, Brianne Benness, 10:23.040 --> 10:24.153 who's fantastic. 10:26.310 --> 10:27.213 She's incredible. 10:28.170 --> 10:29.160 She's really cultivated 10:29.160 --> 10:31.350 this great following around everybody, 10:31.350 --> 10:34.650 just a general chronic illness, disability, 10:34.650 --> 10:39.650 invisible illnesses, disabilities, undiagnosed people. 10:39.780 --> 10:41.160 It's a really great community, 10:41.160 --> 10:43.960 and she has this hashtag for people to just use 10:45.300 --> 10:48.630 for questions, even just rants, 10:48.630 --> 10:51.360 or "I'm having a symptom, what is it?" kinda thing. 10:51.360 --> 10:53.010 And so I asked her one day, like, 10:54.899 --> 10:57.810 "Would you be okay if I borrowed your idea for migraine?" 10:57.810 --> 10:59.700 We have this hashtag for migraine 10:59.700 --> 11:01.567 for people who was like, 11:01.567 --> 11:03.150 "I've got this question about migraine," 11:03.150 --> 11:04.470 and they could put the hashtag in, 11:04.470 --> 11:07.530 and I can kind of follow it, find it, retweet it. 11:07.530 --> 11:10.950 And she was more than okay with that. 11:10.950 --> 11:13.410 And so in the last like month, six weeks, 11:13.410 --> 11:15.690 we've been trying to use that. 11:15.690 --> 11:20.133 So if I see a migraine question, I'll attach the hashtag. 11:22.200 --> 11:24.750 it's sort of slowly people are finding it and using it, 11:24.750 --> 11:25.860 and that's been great. 11:25.860 --> 11:29.430 It's been sort of a good way to tag questions on Twitter 11:29.430 --> 11:31.440 for other others with migraine 11:31.440 --> 11:35.730 to find an answer and be sort of a common thread. 11:35.730 --> 11:37.410 Right, and you've also been 11:37.410 --> 11:39.630 being the science editor for a specific 11:39.630 --> 11:41.820 magazine about migraine, correct? 11:41.820 --> 11:43.290 Yes, My Chronic Brain, 11:43.290 --> 11:44.910 it's a great resource 11:44.910 --> 11:48.870 specifically for people with chronic migraine, 11:48.870 --> 11:53.870 the sort of articles about just sort of way to thrive 11:54.450 --> 11:58.270 and live your best life despite 12:01.440 --> 12:03.630 the ways that chronic migraine 12:03.630 --> 12:05.660 can have an effect on your life. 12:05.660 --> 12:08.430 So there's still lots of ways that you can 12:08.430 --> 12:12.870 adapt and accommodate and still have 12:12.870 --> 12:15.060 sort of as normal life as possible. 12:15.060 --> 12:17.260 And so there's a lot of great articles about 12:21.390 --> 12:23.670 sort of mainstream treatments 12:23.670 --> 12:25.830 and sort of alternative treatments, 12:25.830 --> 12:30.830 and just great artists that also have migraine 12:30.840 --> 12:33.390 and the art that they create 12:33.390 --> 12:35.853 around themes related to migraine. 12:36.870 --> 12:38.740 We used to exercise 12:40.290 --> 12:42.870 in really gentle 12:42.870 --> 12:47.163 and ways that accommodate a migraine body. 12:49.320 --> 12:50.910 Features on other advocates 12:50.910 --> 12:55.140 and just that advocacy is multifaceted. 12:55.140 --> 12:57.150 And ooh, I hope I don't lose my power. 12:57.150 --> 13:00.003 Just a fair warning, we're getting the tropical storm. 13:01.950 --> 13:03.063 Yeah, so sorry. 13:04.020 --> 13:05.130 Yeah, it's a great... 13:05.130 --> 13:07.230 there's lots of great articles 13:07.230 --> 13:10.080 and a great team of writers and editors and (indistinct). 13:11.430 --> 13:14.610 What are some tips that you about 13:14.610 --> 13:16.500 maintaining a sense of normalcy 13:16.500 --> 13:19.440 and trying to maintain as much control 13:19.440 --> 13:22.140 and, like I said, normalcy over your life 13:22.140 --> 13:27.140 when every single minute you're impacted by your disease? 13:27.570 --> 13:31.023 Yeah, that's funny. That's hard. 13:32.610 --> 13:36.660 I think I try to 13:36.660 --> 13:39.810 do as many of the same activities that I used to do. 13:39.810 --> 13:42.060 and find a lot of the same, 13:42.060 --> 13:44.730 even some of the same distractions that... 13:44.730 --> 13:47.430 Some of the things that I use as distractions now 13:47.430 --> 13:51.810 are the activities that I enjoyed before. 13:51.810 --> 13:55.360 So I try to still find 13:57.030 --> 13:58.750 comfort and fun in 14:02.940 --> 14:06.990 the pastimes and activities that I used to do before. 14:06.990 --> 14:11.990 So I think that's something I try to remind my 14:12.000 --> 14:13.350 friends and family of, 14:13.350 --> 14:16.350 that I can still, on my good days, 14:16.350 --> 14:19.030 I can still do the things 14:21.660 --> 14:23.133 that you remember me doing. 14:26.640 --> 14:29.310 It's not every day, but yeah. 14:29.310 --> 14:31.860 So like that, what can they do, 14:31.860 --> 14:33.810 your friends and family and loved ones, 14:33.810 --> 14:36.480 what can they do to show you that they care, 14:36.480 --> 14:39.090 whether you're having a really hard day or a better day? 14:39.090 --> 14:41.280 What are some gestures that mean a lot 14:41.280 --> 14:43.920 that most people wouldn't think about? 14:43.920 --> 14:45.910 I think what really helps is 14:48.184 --> 14:51.317 to come up with concrete offers. 14:52.620 --> 14:55.230 It can be really hard when you're- 14:55.230 --> 14:57.390 Definitely In pain 14:57.390 --> 15:00.963 or just not feeling well, 15:02.130 --> 15:04.380 and that can just be all consuming. 15:04.380 --> 15:05.647 So when someone says, 15:05.647 --> 15:07.047 "Let me know what you need," 15:07.980 --> 15:09.660 and it's just sort of this big offering, 15:09.660 --> 15:13.020 it can be really hard to say, "I need this." 15:13.020 --> 15:15.040 So I think 15:18.090 --> 15:21.573 part of it might be that we need to say, 15:24.757 --> 15:27.420 "These are the six things I need help with. 15:27.420 --> 15:30.783 So on a bad day, can you just do? 15:33.360 --> 15:36.030 Can you just ask me for my grocery list 15:36.030 --> 15:37.320 and go get groceries?" 15:37.320 --> 15:41.100 or "Can you come do a load of laundry for me?" 15:41.100 --> 15:46.100 or "Come drop off some safe... 15:47.100 --> 15:51.510 Here are five safe recipes for me. 15:51.510 --> 15:53.700 Could you just keep them on hand 15:53.700 --> 15:56.490 and if I'm having a bad week, 15:56.490 --> 15:58.707 make one and drop it off for me." 16:00.120 --> 16:01.820 I know we're kind of in this weird 16:03.420 --> 16:07.190 pandemic times where some of this is hard, but... 16:08.850 --> 16:12.456 As much as you can help your friends and family 16:12.456 --> 16:15.204 when they're dealing with a flare up 16:15.204 --> 16:18.060 and have concrete offers, 16:18.060 --> 16:20.030 it's a lot easier than... 16:21.390 --> 16:24.700 Sometimes it can be hard to be the sick person and 16:26.880 --> 16:28.710 come up with specific things 16:28.710 --> 16:30.393 when you're really just like- 16:31.470 --> 16:33.090 Got nothing. Yeah. 16:33.090 --> 16:35.850 Incredible tips, I love those. 16:35.850 --> 16:39.270 I read somewhere that someone suggested to 16:39.270 --> 16:43.560 give gift certificates to either food delivery services 16:43.560 --> 16:45.900 for when they're feeling too bad to even make a meal 16:45.900 --> 16:49.350 or also driving services. 16:49.350 --> 16:50.970 So in case like their medication 16:50.970 --> 16:52.410 or they just not feeling well 16:52.410 --> 16:54.960 and they lose the ability to drive for either forever 16:54.960 --> 16:57.270 or just that day or that afternoon, 16:57.270 --> 16:58.920 they can actually get to different places, 16:58.920 --> 17:01.110 which is a huge, huge help 17:01.110 --> 17:03.180 that, again, who would think about? 17:03.180 --> 17:06.330 Unless you live in rural Southern Vermont 17:06.330 --> 17:09.660 where Uber and Uber Eats don't exist, 17:09.660 --> 17:12.363 but, otherwise, those are fantastic ideas. 17:13.530 --> 17:15.813 Yeah, probably not so helpful for you. 17:16.800 --> 17:20.040 Not where I live, but those are great ideas otherwise. 17:20.040 --> 17:23.820 All right, so Beth, what advice would you give to yourself 17:23.820 --> 17:27.300 if you could talk to yourself who was just newly diagnosed 17:27.300 --> 17:30.060 or even maybe newly chronic? 17:30.060 --> 17:30.893 Yeah. 17:32.688 --> 17:35.940 I think I did pretty well for myself. 17:35.940 --> 17:39.540 I feel like I would 17:39.540 --> 17:42.150 kind of give myself the same advice 17:42.150 --> 17:44.253 as just sort of what I did. 17:45.210 --> 17:47.610 Find a community, 17:47.610 --> 17:49.743 find people that are like you. 17:50.790 --> 17:54.480 You have tips for that? 'Cause what I realized is 17:54.480 --> 17:55.590 my doctors were helpful, 17:55.590 --> 17:57.750 but you only have so much time with them, 17:57.750 --> 17:59.250 and they're doctors. 17:59.250 --> 18:00.600 they aren't living in your body. 18:00.600 --> 18:02.190 So find other people who are 18:02.190 --> 18:05.850 living in the same reality, 18:05.850 --> 18:08.520 dealing with, "Do I take my meds? 18:08.520 --> 18:09.870 I've got a migraine every day. 18:09.870 --> 18:13.290 So how do I figure out what days I'm gonna take my meds? 18:13.290 --> 18:15.180 What do I do on the days I can't take my meds? 18:15.180 --> 18:16.650 I can only take them so many times." 18:16.650 --> 18:19.950 I literally find people who have to go through 18:19.950 --> 18:22.078 those types of decisions. 18:22.078 --> 18:22.911 How do you do that? 18:22.911 --> 18:24.420 How do you find them? 18:24.420 --> 18:25.680 So I mean, like I said, 18:25.680 --> 18:27.627 I started out going to Facebook 18:27.627 --> 18:30.573 and that was semi successful. 18:31.920 --> 18:33.330 That was at least a good place to start, 18:33.330 --> 18:37.200 and I think, right now, there are some great Facebook groups 18:37.200 --> 18:39.630 that are focused on new treatments, 18:39.630 --> 18:43.530 and there's some that focus on 18:43.530 --> 18:45.600 sort of lifestyle and diet, 18:45.600 --> 18:50.600 and the sort of lifestyle changes and managing that. 18:51.210 --> 18:54.483 So there are a couple really good, big, well, 18:56.160 --> 18:58.920 well-moderated groups that are out there 18:58.920 --> 19:01.040 that I don't think existed... 19:02.820 --> 19:04.710 If they existed, they were much smaller and I didn't... 19:04.710 --> 19:06.690 They weren't the first ones I found 19:06.690 --> 19:08.133 when I was sort of looking. 19:09.330 --> 19:11.850 There's, I think, a good community on Twitter, 19:11.850 --> 19:13.713 a good community on Instagram. 19:15.982 --> 19:16.867 And everybody- 19:16.867 --> 19:19.830 A hashtag or search, for example, migraine 19:19.830 --> 19:20.663 if someone had to- 19:20.663 --> 19:24.990 Yeah, I think search migraine, search chronic migraine. 19:24.990 --> 19:26.880 If you're on Twitter, search migraine chat, 19:26.880 --> 19:28.203 I'll plug that. 19:29.880 --> 19:32.326 We do the chat once a month. 19:32.326 --> 19:33.363 And in between, 19:34.500 --> 19:36.240 hopefully, there's gonna be more 19:36.240 --> 19:37.800 communication between on Twitter 19:37.800 --> 19:40.530 with just people posting questions. 19:40.530 --> 19:41.490 Love that. 19:41.490 --> 19:42.960 Hopefully, that grows, 19:42.960 --> 19:47.960 but I think if you find people who are like you 19:48.090 --> 19:49.743 or find other advocates, 19:52.560 --> 19:56.460 even pick up any of the issues of "My Chronic Brain." 19:56.460 --> 19:57.293 Read through those. 19:57.293 --> 19:58.380 There's been some great features 19:58.380 --> 20:00.183 on other advocates in there. 20:03.060 --> 20:04.980 There's something so validating about 20:04.980 --> 20:07.447 just meeting someone, even if it's online, that says, 20:07.447 --> 20:08.640 "Yeah, me too." 20:08.640 --> 20:10.147 Yeah, yeah. I get that. 20:10.147 --> 20:14.820 Yeah, and I think following some of the big organizations, 20:14.820 --> 20:16.380 the American Migraine Foundation, 20:16.380 --> 20:19.500 and the Migraine World Summit, and some of these, 20:19.500 --> 20:20.333 yeah, right, 20:23.190 --> 20:27.690 put out some great educational information 20:27.690 --> 20:32.690 and also feature headache specialists that are 20:33.240 --> 20:37.860 sharing very relevant treatment information 20:37.860 --> 20:39.633 that feature advocates. 20:40.710 --> 20:44.030 I think you'll sort of quickly... 20:45.390 --> 20:47.610 It's a very kind of close knit community. 20:47.610 --> 20:50.373 I think once you kinda get in, you'll find it. 20:53.070 --> 20:55.020 I think once you're in it, 20:55.020 --> 20:59.800 the learning curve is much shorter than 21:01.903 --> 21:04.263 if you can kind of break through. 21:04.263 --> 21:07.140 So you said to follow the organizations that 21:07.140 --> 21:11.910 are national or international leaders for that condition. 21:11.910 --> 21:13.050 I think that's a good tip. 21:13.050 --> 21:16.950 What other tips do you have on finding research that's valid 21:16.950 --> 21:19.080 and is it just a bogus treatment from 21:19.080 --> 21:20.010 the ends of the internet? 21:20.010 --> 21:22.890 How can we tell what's real, what can help, 21:22.890 --> 21:25.800 and what is likely just to drain our money 21:25.800 --> 21:29.130 or drain our resources or possibly even hurt us? 21:29.130 --> 21:30.577 Yeah, let's see. Okay. 21:30.577 --> 21:32.430 so I gave a whole talk on that. 21:32.430 --> 21:36.120 So I do a whole other half hour on that. 21:36.120 --> 21:36.953 Yeah, right. 21:38.010 --> 21:39.960 I would say some quick tips, 21:39.960 --> 21:44.960 definitely following organizations that are 21:48.060 --> 21:52.053 sort of the nonprofits in your diagnosis. 21:55.050 --> 21:58.020 Even if you're not super confident about reading 21:58.020 --> 22:00.510 academic articles, 22:00.510 --> 22:03.660 if you follow those journals, 22:03.660 --> 22:08.020 sometimes they will share more 22:09.030 --> 22:12.150 layperson user-friendly summaries of their articles. 22:12.150 --> 22:17.150 So you can still follow the journals and read the abstracts 22:17.640 --> 22:20.073 or the summaries of the papers. 22:21.120 --> 22:26.120 So if you can figure out what the common journals are, 22:26.310 --> 22:28.770 and so like Headache 22:28.770 --> 22:33.770 or some of the big journals in migraine 22:34.440 --> 22:35.493 are worth following. 22:36.780 --> 22:41.190 I think I try to stay away from... 22:41.190 --> 22:42.920 I get wary of 22:49.080 --> 22:52.170 any product that is being 22:52.170 --> 22:57.150 sort of marketed by the company that makes it 22:57.150 --> 23:00.390 without any independent evaluation of it. 23:00.390 --> 23:05.100 So I kind of wanna see if it's been 23:05.100 --> 23:06.870 independently tested somehow. 23:06.870 --> 23:07.920 How can you test for that? 23:07.920 --> 23:09.210 How do we know? 23:09.210 --> 23:10.660 Yeah, that can be hard 23:12.318 --> 23:13.740 and, a lot of times, it doesn't exist. 23:13.740 --> 23:17.340 So in that case, if it's a pretty low risk thing, 23:17.340 --> 23:19.650 like, I don't know, 23:19.650 --> 23:22.713 like some sort of, 23:25.020 --> 23:29.040 something that's gonna just give you comfort, like some... 23:29.040 --> 23:30.983 I can't even come up with a good example. 23:32.220 --> 23:34.500 Something that's fairly low risk, 23:34.500 --> 23:36.000 I will still probably try it 23:36.000 --> 23:38.340 'cause, at this point, I've tried everything. 23:38.340 --> 23:40.980 So if there's a pretty, pretty low risk of side effects, 23:40.980 --> 23:41.910 I may still try it. 23:41.910 --> 23:45.580 But if it's some device that's kind of like, 23:45.580 --> 23:46.813 "Ooh, I'm not..." 23:48.720 --> 23:51.960 I'd like to see you guys... 23:51.960 --> 23:54.240 I'd like to see some actual evidence of it. 23:54.240 --> 23:56.850 And if there isn't anything on their website 23:56.850 --> 24:00.420 or it isn't clear that it was actually independently tested 24:00.420 --> 24:05.340 and I can't clearly tell that, 24:05.340 --> 24:08.370 then I probably stay away from it 24:08.370 --> 24:12.000 and stick to things that like my doctor recommends 24:12.000 --> 24:13.800 or I can see it kind of come out of 24:13.800 --> 24:18.800 more clinical trials versus a private kind of thing. 24:19.830 --> 24:22.770 Have you ever brought up a new therapy with a doctor 24:22.770 --> 24:26.190 to ask him whether he or she thought it was valid 24:26.190 --> 24:28.560 or thought it could be dangerous? 24:28.560 --> 24:29.940 Is that an option? 24:29.940 --> 24:31.413 I have, yeah. 24:33.330 --> 24:38.330 Usually it's something that's sort of in that range of 24:38.857 --> 24:41.343 "This is new, I've heard about it, 24:42.420 --> 24:44.670 it hasn't gone through maybe the clinical trials, 24:44.670 --> 24:47.670 but people are buzzing about it. 24:47.670 --> 24:48.840 What do you think about it?" 24:48.840 --> 24:50.313 And generally, 24:51.367 --> 24:53.257 if my doctor says something like, 24:53.257 --> 24:55.920 "I don't see how it could harm you. 24:55.920 --> 24:57.723 It seems pretty low risk. 24:58.830 --> 25:01.350 It seems like it's safe to try." 25:01.350 --> 25:06.350 then that's kind of where I'll just go ahead and try it 25:06.570 --> 25:10.110 and trust that it's pretty safe. 25:10.110 --> 25:13.563 Those are usually the kind of, like I said, 25:14.730 --> 25:17.670 the lights or the heat packs 25:17.670 --> 25:20.913 or things that are pretty minimal risk. 25:23.040 --> 25:25.950 Do you have any misconceptions about chronic pain, 25:25.950 --> 25:28.350 migraine, invisible disabilities, et cetera, 25:28.350 --> 25:30.150 that you want to clear up right now? 25:32.670 --> 25:34.750 I think the one 25:35.910 --> 25:38.400 big one lately that I just, 25:38.400 --> 25:42.330 that I was guilty of myself was that 25:42.330 --> 25:43.800 the whole time I was episodic, 25:43.800 --> 25:45.810 the whole time I had episodic migraines, 25:45.810 --> 25:49.830 meaning like, for 20 years, I had maybe 25:49.830 --> 25:52.020 one or two migraine attacks a month, 25:52.020 --> 25:56.010 and I had no idea that I could end up 25:56.010 --> 25:58.740 with migraine every day. 25:58.740 --> 26:01.240 So I think 26:02.130 --> 26:05.910 I was guilty of being almost that person 26:05.910 --> 26:09.390 that thought migraine was just a headache. 26:09.390 --> 26:11.550 I'll take, pop a pill. 26:11.550 --> 26:14.790 I'll take my triptan and, in four hours, I'll be okay. 26:14.790 --> 26:15.630 I'll go back to work. 26:15.630 --> 26:17.100 I might need to take the morning off, 26:17.100 --> 26:18.990 but what's the big deal? 26:18.990 --> 26:21.783 So now that I'm on the other side, 26:24.351 --> 26:27.780 I'm very aware of that migraine is not just a headache. 26:27.780 --> 26:28.890 There's the head pain. 26:28.890 --> 26:32.523 There's The I can't think straight, 26:33.570 --> 26:36.333 nauseous, the light's bothering me. 26:37.290 --> 26:39.273 Everything hurts. 26:40.200 --> 26:42.270 There's a laundry list of symptoms, 26:42.270 --> 26:45.870 and there's an enormous amount of stigma 26:45.870 --> 26:46.890 attached to migraine 26:46.890 --> 26:51.360 because I think people generally think 26:51.360 --> 26:55.080 that it is a very simple disease. 26:55.080 --> 26:57.400 And sometimes even people who 26:59.340 --> 27:04.150 have a milder form of migraine don't realize 27:05.040 --> 27:09.753 that it can be as severe, and so it's hard, I think. 27:11.283 --> 27:15.150 I don't say that as anything against, 27:15.150 --> 27:16.680 I guess, anyone with migraine. 27:16.680 --> 27:20.040 It's just a misunderstanding that there's this continuum 27:20.040 --> 27:23.220 and the severity that it can take on 27:23.220 --> 27:24.573 and sort of the stigma. 27:27.450 --> 27:28.770 I've noticed, even within 27:28.770 --> 27:30.873 just any kind of chronic illness, 27:32.730 --> 27:36.180 a lot of us tend to be judgmental just because 27:36.180 --> 27:38.130 if I was going through that, I would be able to do that, 27:38.130 --> 27:39.900 or if I was in an attack, 27:39.900 --> 27:41.550 I would be able to be on the computer, 27:41.550 --> 27:44.040 but some of us don't have that option or that privilege, 27:44.040 --> 27:47.340 and it's just internalizing all of the stigma 27:47.340 --> 27:49.830 that we're trying to combat versus 27:49.830 --> 27:51.360 being understanding, empathetic, 27:51.360 --> 27:53.280 and just trying to understand that 27:53.280 --> 27:54.870 we just have to believe people, 27:54.870 --> 27:57.360 just believe what people are saying. 27:57.360 --> 27:58.590 Yeah, and at some point, 27:58.590 --> 27:59.580 I mean, that is, 27:59.580 --> 28:03.300 I think, a lot of people who are chronic and daily 28:03.300 --> 28:05.070 or near daily get that a lot. 28:05.070 --> 28:06.600 You wouldn't be... 28:06.600 --> 28:09.330 You wouldn't be doing an interview with Kelly 28:09.330 --> 28:10.680 for half an hour if you were 28:10.680 --> 28:11.910 in the middle of a migraine attack. 28:11.910 --> 28:15.180 Well, if I didn't do X, Y, and Z 28:15.180 --> 28:16.350 during the middle of a migraine attack, 28:16.350 --> 28:18.960 I wouldn't do 90% of what I do. 28:18.960 --> 28:22.040 So you just, at some point, kind of... 28:23.440 --> 28:25.623 You just do things, 28:26.657 --> 28:27.770 and some people... 28:30.210 --> 28:32.010 Everybody's experience is different. 28:33.330 --> 28:35.223 You just have to believe people. 28:36.240 --> 28:38.700 However it manifests, 28:38.700 --> 28:39.660 you have to believe people. 28:39.660 --> 28:41.910 Some people can do more than others, 28:41.910 --> 28:43.233 and that is okay. 28:44.220 --> 28:46.140 That's what they can do. 28:46.140 --> 28:47.520 Absolutely. 28:47.520 --> 28:49.740 All right, so to close out, 28:49.740 --> 28:51.840 I wanted to talk about the emotional burden 28:51.840 --> 28:54.510 of having a physical ailment. 28:54.510 --> 28:59.510 So you had to give up so much for your health, 28:59.820 --> 29:02.130 and that's definitely not where you expected to be. 29:02.130 --> 29:04.770 You did not expect to have to give up your career, 29:04.770 --> 29:08.190 move to a place that you didn't necessarily wanna be. 29:08.190 --> 29:09.690 There's just so much. 29:09.690 --> 29:12.570 You didn't expect to have every aspect of your life 29:12.570 --> 29:16.140 almost controlled by your disability. 29:16.140 --> 29:19.440 And so through your toughest times and your darkest hours, 29:19.440 --> 29:23.160 what gives you the courage just to get through one more day? 29:23.160 --> 29:24.603 How do you keep going? 29:25.470 --> 29:26.790 I think it's the... 29:26.790 --> 29:27.680 I think it's... 29:30.270 --> 29:33.450 A lot of times it's just knowing that there's a lot 29:33.450 --> 29:37.530 of smart people out there studying migraine 29:37.530 --> 29:41.313 and trying to find a solution. 29:43.230 --> 29:45.903 Even in the last two years we've had this, 29:46.830 --> 29:50.250 we've had kind of all these new treatments come out, 29:50.250 --> 29:53.610 and no, they haven't worked great for me, 29:53.610 --> 29:57.300 but there are more in the pipeline 29:57.300 --> 29:59.280 and they're studying other mechanisms 29:59.280 --> 30:00.900 and they're working on it. 30:00.900 --> 30:03.660 And yes, it's slow, but I, 30:03.660 --> 30:07.050 literally on my worst days, sometimes lay in bed and think 30:07.050 --> 30:11.250 there's hope, there are people working on this, someday, 30:11.250 --> 30:12.750 someday, something will work. 30:12.750 --> 30:16.410 And I just tell myself that, 30:16.410 --> 30:18.603 someday, research will catch up with me. 30:20.430 --> 30:24.660 Finally, they are actually doing research 30:24.660 --> 30:26.580 on treatments for migraine, 30:26.580 --> 30:29.280 and we are not getting just hand me down drugs 30:29.280 --> 30:31.683 from other diseases. 30:34.200 --> 30:36.003 It's moving faster than it ever has. 30:38.493 --> 30:43.037 It may sound like a strange thing to hang my hope on, 30:44.220 --> 30:47.010 but that's what it is. 30:47.010 --> 30:47.843 I love that. 30:47.843 --> 30:50.400 I think that makes perfect sense for 30:50.400 --> 30:52.210 your hope to, again, stem from research just like- 30:52.210 --> 30:53.670 Yeah, yeah. 30:53.670 --> 30:54.780 Most of your (indistinct). 30:54.780 --> 30:56.430 Yep. I love that. 30:56.430 --> 30:58.500 Well, Beth, thank you so much for being on here today, 30:58.500 --> 30:59.470 and thank you for- Thank you. 30:59.470 --> 31:01.770 Going through research, tactics, 31:01.770 --> 31:03.870 and just what to look out for. 31:03.870 --> 31:05.430 I appreciate it so much. 31:05.430 --> 31:06.720 Thanks for having me. 31:06.720 --> 31:08.616 All right, everyone, see you Thursday. 31:08.616 --> 31:11.199 (upbeat music) 31:30.983 --> 31:33.566 (gentle music)