S2:Ep1 – Navigating Your Treatment Journey with Peer Support

TRANSCRIPT

Voice-over: Welcome to Spotlight on Migraine, hosted by the Association of Migraine Disorders. Join us for fresh perspectives by medical experts and advocates as we explore the spectrum of migraine and dig deeper into this complex disease. This episode is brought to you in part by our generous sponsors Amgen and Novartis.

Shoshana Lipson is proving there is hope for the migraine community. Join us as we learn more about her online migraine support groups, which provide education on emerging treatments, guidance on insurance issues, and emotional support.

Since 2015, Amgen and Novartis have been working together to develop pioneering therapies in Alzheimer’s disease and migraine. Together, Amgen and Novartis share in a mission to fight migraine and the stereotypes and misconceptions surrounding this debilitating disease.

Molly O’Brien: Hello and welcome to Spotlight on Migraine. I’m Molly O’Brien. Today we’re taking a closer look at migraine treatment, support groups, advocacy, and more, all from the patient perspective. I’d like to welcome our guest, Shoshana Lipson. She’s a writer, a migraine patient, and an advocate. Shoshana, hello.

Shoshana Lipson: Hi.

Molly: Shoshana, will you tell us a little bit about what you do and a little bit about your background?

Shoshana: Absolutely. Well, my background is really all around the non-profit arena, different roles, and I ended up doing non-profit management and a lot of public speaking for several decades, actually. But it’s always amazing to me, as I look back, that I never actually spoke about migraine or chronic pain. So that is very new to me, and it’s just happened in the past 14, 15 months that I’ve got actually involved in advocacy.

And I started that out by beginning a group that was specifically aimed at helping people who are navigating the new CGRP medications that were made available last year. And it was such a maze of information. It was so confusing. It was such an emotional rollercoaster. And so my group quickly grew, and that was how I initially got into patient advocacy.

Molly: Wonderful. So you said you recently entered the world into advocacy. Can you tell us a little bit about what that journey has been like for you?

Shoshana: It’s been quite an amazing journey, actually. Sometimes I would describe it as skiing down a triple black diamond ski slope where I didn’t really know what I was getting myself into. And then I got invited to be involved in different organizations like CHAMP, and then after that, it just kind of took off. 

My group took off and exploded in size. I started a second group called Migraine Meanderings. I started getting asked to go speak places and then to write for different organizations, and it’s really just been this amazing journey of, I think for me, just discovering that there actually is a life even in the midst of chronic migraine, chronic intractable migraine. 

So for me, it’s been a very exciting journey, and it’s also been a journey where I’ve had to learn how to set many good boundaries for myself. And that’s been such a key part of the past year is learning to set those boundaries, not getting overinvolved in things even though I really want to, but on the other hand, just discovering that this is really an amazing thing to do is to be involved in advocacy.

Molly: Can you tell us a little bit about the support groups you run and the website?

Shoshana: Absolutely. So my biggest support group is called Hope for Migraine: CGRP & Emerging Treatments. It used to just be called CGRP & Migraine because those were the first three medications that came out. Well, we wanted to expand it to make it so that it covered all the new and emerging medications, which are not just CGRP inhibitors. 

So that group, the goal of it is to support, guide, and educate people who are navigating these new medications. So we hope to provide a supportive community. We provide guidance on how to access the medications, how to deal with insurance denial, what the medications are. We do comparison sheets. We have an FAQs document for each and every medication that comes out. We have another document for every medication that shows all the clinical trials that happened. So there is as much information there as people want.

Or if they just want to come and say, “Hey, I’m trying this new medication; send up a prayer for me,” then they can also do that. So that’s the Hope for Migraine group. It’s basically — it’s just giving us hope back. But we’re very small focus. And then, of course, we realized that there’s so much more to migraine than that. So we tend to decline posts that are off topic from those particular medications, and the reason for that is because there is so much information about the new medications, we don’t want it to get lost in the general migraine topics. 

So I started another group called Migraine Meanderings. I have a website for that. I’m on Twitter. I’m on Instagram. And that group is — the goal of it really is to empower, inspire, and encourage people who live with migraine. That could be someone who’s newly diagnosed, it could be a parent whose child has just started getting migraine attacks, or it could be someone like me who is really a lifetime migraine warrior. And it’s an open group. It’s not really for confidential sharing at all, so our focus is more on sharing different information about migraine that can then be reshared easily, so memes that can be reshared, just kind of raising awareness, articles that could be reshared. So that is the focus of that group is to really help raise awareness of migraine in society in general and to give people a tool where they can learn to speak out easily about it. And that’s not an easy thing to do.

Molly: So your groups have a lot of outreach through social media. How do you think social media has helped you manage migraine and helped others manage migraine as well?

Shoshana: Of course. That’s really such an important question, and I would say that one of the most devastating aspects of migraine is the isolation that comes along with it. So I’ve heard it termed as like a diabolical isolation, which is a really emotive term but I think is so important because we tend to isolate because other people don’t understand. We isolate because we’re afraid of triggers causing another migraine attack. We isolate because we’re just so exhausted from trying new medications and going to doctors and just the fatigue that comes with migraine as well. And then, of course, there’s the attacks when you really can’t do anything. 

So that isolation has a lot of negative effects on us psychologically. When I discovered that there was an online community, it’s not like, physically, I all of a sudden became better. I didn’t; in fact, I’ve gone downhill since I’ve got involved in this. But emotionally, I would say I’m just coping so much better because I met some amazing people. I’ve discovered that I’m not alone, that there are so many other people out there like me who are really sick and that — it’s horrible to get excited about other people being sick, but — it sounds like a terrible thing to say, but it’s really very comforting to know that you’re not the only person, and it kind of normalizes things. Does that make sense?

Molly: Oh my goodness, it makes so much sense. One of your groups, Hope for Migraine, really takes a look at the CGRP medication, the CGRP blocker. What have you learned about this medication over the past year?

Shoshana: So I’m really not sure where to start. I think just kind of discovering that this really is a new frontier in the treatment of migraine, so that’s a huge thing. That they are not a cure-all — they’re not a cure at all, but they don’t even — you can’t even say that they’re going to help everybody. So about 50% of people get about 50% of relief. That’s a really broad way of putting it. Obviously, there’s a large number of people that get no relief at all. There’s the amazing lucky few who are super-responders, and we all want to be a super-responder, of course. And then there’s all the people that are somewhere in between, between not responding and just no longer having migraine attacks while they’re on the medication.

So just discovering that there’s this huge spectrum has been really eye-opening to me, and then I think getting kind of like a little glimpse into the world of a new medication where we really don’t know what’s going to happen when a medication is released. You don’t know if the efficacy is going to hold up in the real-world use. We don’t know what the side effect profile is going to look like. 

And then there’s just odd things that happen, like some people are taking these medications, and they seem to wear off before the end of the month, which shouldn’t really happen because they have a 30-day or approximately 30-day half-life. So it shouldn’t — it’s just kind of a wear-off effect that nobody really expected. And then there’s other people who they seem to work for a few months, and then they just suddenly stop working, and that was not expected as well.

So there’s all these little unexpected things that happen, and I didn’t know anything about new medications and the process of them or the limitations of the clinical trials. And so that has been just a huge learning process for me. And I think it’s given me a much more realistic approach to new medications and just opened my eyes in general to the complexity of it all. And that’s added, of course, on top of the complexity of migraine, because this disease is already complex, and now we’re dealing with new medications and a lot of new medications all at the same time. So it’s just been really interesting to learn more about them and more about that process.

Molly: And again, the CGRP blockers are still very new, so we’re still continuously learning about these medications, and there’s still a lot more to learn. What are people talking about within some of your support groups just about these medications? You kind of touched on a little bit, but what are people saying and talking about, about whether they work, they don’t work, the efficacy, or just some of those small things that you touched upon?

Shoshana: I would say just trying to amass information, so are there any trends for side effects that we didn’t know about? Now that we’re seeing hundreds of thousands of people on these medications, are there really any trends? And so people are talking about that a lot. They want to know how to report potential side effects, and that’s so important to do because that way, all the information can be amassed together, and then hopefully a scientific approach can be put to — because my group, obviously, is not a scientific group. It’s not for research. It’s anecdotal. But when you have 10,000 people saying something, then that definitely has weight. So it’s important.

And then on the other side, we have people who talk about the new normal. These medications have transformed their lives, and you would think that that would be fabulous. But if you’ve had chronic migraine for years and all of a sudden you don’t — let’s say you go from 30 days to 1 day a month of migraine — what do you do with your life? I mean, it’s fabulous, but really, what do you do? You have to relearn how to interact with people and how to respond to society and how to just make appointments that you think you may be able to keep. And are you going to be able to go back to work if you had to stop working? So we have a lot of conversations about that. What does it mean if I get better, and if I get better, am I still afraid I’m going to get worse again? 

And then there’s — the big, big discussion is about insurance companies, so trying to access the medications. Medication switching that seems to happen — insurance companies will approve one, not the other, and even if you’ve been on one, they’ll try to switch you to another. Or your co-pays get changed, or all of a sudden, they decline the medications altogether. And so there’s a lot of frustration and exhaustion in trying to figure out how to navigate the insurance landscape for this as well, and that is a big discussion.

And I think finally — there’s so much I can say about this, it’s amazing — I think the other aspect would be discussion with people’s doctors since it’s no longer the parental model, right, where they tell us what to do and we do it. Most doctors are not trained in headache disorders. They’re just not trained, even neurologists, and that means that we need to educate ourselves and we need to partner with our doctors and we need to talk to them. And so we talk about that a lot in our group as well.

Molly: So really touching, some of the things that you pointed out there. Myself, I got emotional just thinking about what happens if I get better, what happens if I don’t get better. It’s so emotional, and I can totally relate. So tough discussions, but sounds like it’s really good for migraine patients to have each other, right, just to be able to have that network of people and support and know that there are others going through it.

You talked a little bit about those side effects and ones that were not expected. Anything that you are hearing from those within the support group maybe that were either expected or that were not expected?

Shoshana: Some of the unexpected side effects — and I think it’s becoming clear that these probably are side effects. They have not been officially added to any of the medication guides yet. Hopefully, they will be. Hair loss is a really big thing, and we’re not talking about just a few strands of hair. We’re talking about clumps of hair. I know for myself, there was hair all over my apartment, and you couldn’t tell that I was losing it — as you can see, I have a lot of hair — but my husband could see it because it was everywhere. It was just all over the carpet, and I just have never experienced hair loss before. And that stopped within six to eight weeks of me getting off that medication. So then I would — so that’s a very common side effect that we’re seeing in the group. 

Another one would be some GI issues, so whether it’s GI pain or GERD or just unexplained abdominal pain. Some people get this really swollen belly where they look like they’re nine months pregnant, which is very unusual. Some people have been to the emergency room over this, and it just happens suddenly out of the blue, no explanation. So let’s just kind of lump GI issues all together, and that was not something that people were expecting.

Some joint pain and fatigue, and then one of the things that has actually now been added to — at least to Aimovig, they’ve added it to their medication guide — is just warnings about constipation, and in terms of — it can be really, really serious. So they actually do have that down as a warning in their medication guide now about that and the importance of just looking out for it because people can end up in the hospital with that. 

I would say that those are the unexpected things that have — or at least some of the unexpected things. And then some of the expected ones are injection-site reactions. Some people are having allergic reactions. There are warnings on all the medications for potential allergic reactions, so that’s not really a surprise, and we’re seeing it. So those things.

And then the efficacy — what we saw in the clinical trials, we really are seeing in the group. So we tend to hear from the people who do not respond to these medications, for whom the medications are failing, basically, or for whom the medications are having concerning side effects. We don’t hear so much from the people who are having this amazing experience. So every now and again, we’ll do a post and say, “Hey, we want to hear from responders.” And we’ll get hundreds of comments from people who are just experiencing incredible relief. Every time we do a survey and a poll, it really does look like that, on average, 50% of people of people are getting 50% relief, with some more and some less. And honestly, in the world of migraine, that is pretty good. It really is.

Molly: I totally agree. So we talked a little bit about the CGRP inhibitors. You’ve mentioned that there are new medications coming out. Can you talk just a little bit about, briefly, what you think the average migraine patient should know about new medications in the pipeline?

Shoshana: The whole landscape of migraine treatment is changing as the understanding of migraine is changing. So with the injectables, they were targeting something which is one of the pathways for migraine — one of the pathways for migraine. So it’s really important to make that clear. It’s only one; that’s why not everybody responds. And so as we have these new ones that are coming out, they’re not going to work for everybody. They are just not going to, but they will work for some. And so for the people that they do work for, that’s amazing. It’s like another dent in the wall.

So I think if we were to [divide?] the next batch of medications — there’s four of them — that are coming up, one is another monoclonal antibody. It goes via the IV. It’s eptinezumab, and that one is supposed to work quicker. It’s supposed to be very effective, and we’re expecting it the first quarter in 2020. And for those people who have not seen success with the injectables, talk to your doctor. Maybe it is worth your while trying that. Obviously, we can’t give medical advice, but that medication does seem to have a lot of efficacy. And they all work slightly different, so you can’t say because one didn’t work, another won’t work for you.

And then for, we have lasmiditan, which is — the brand name is Reyvow. So that one was just FDA approved, and it’s going through a further FDA review right now, which we expect to be done sometime in January. We’re hoping it’s going to be on the market in January, and that is for those people who can’t take triptans. So if you have some kind of cardiovascular condition, this is really, really good news for you. This is good news for me, personally.

The other ones that are coming out, ubrogepant and rimegepant — so ubrogepant’s expected by the end of this year, and rimegepant sometime in the first quarter. And those are both abortives as well. They have a remarkably low side effect profile. They also have a very short half-life, so if something happens that isn’t good or that you don’t like, it’s going to be out of your body pretty quickly. 

And I would say to people who do not have effective treatment of their migraine right now, then this is good news. Have hope. For those who really do not have effective, tolerable treatment, there is so much hope right now, and talk with your doctor about trying these options.

Molly: It’s a very exciting time, I think, in the world of migraine.

Shoshana: Yes, m-hm.

Molly: Shoshana, you write, you speak publicly, you’re doing this interview, obviously. So you have come a long way along your migraine journey. What have you learned about yourself in all of this?

Shoshana: What I’ve learned about myself is that there’s more to me than just the physical. It’s not just a matter of controlling pain, but that I need connection. I desperately need connection with people. We all do. That connection is so important, and I had cut myself off from connection with people. So not only was I physically in bad shape, but emotionally and spiritually, I was just in really, really bad shape, because we need that connection. So just discovering how important that was to me — how important it is to talk to people, to be around people who really get it — that has been just an amazing lesson from me in this journey. 

And then, I think, learning to set healthy boundaries, so the boundaries of, “Hey, I can do this, but it’s going to cost me, so I do I have the time to do that?”

Molly: All right, Shoshana, as we wrap up our conversation — we’ve talked about some exciting new treatments. We’ve talked about treatments that are just about a year or so old. So like I said before, I think it’s an exciting time in migraine. What do you hope to see for the future of migraine?

Shoshana: From society in general, I think just a greater awareness that this is a really serious disease. This is devastating, and it’s almost like it’s time for us to take our wigs off, to take the masks off our face, and say, “This is what we look like when we’re sick. This is what pain really looks like. This is how our lives have been devastated.” 

And so in Migraine Meanderings, I have an initiative called the Real Face of Migraine, where people have sent me pictures — not pretty pictures of them all made up with makeup like you and I are right now, but pictures of people in hospital and with needles in their arms and ice hats on their heads and just in tremendous amount of pain — to really show the world what migraine is like. So from that side, that’s what I really hope from society is a greater awareness of how serious this disease is.

With the medical community, there’s so little training on headache disorders and migraine specifically. And for a disease that takes nearly 40 million people in America alone and 1 billion globally, the fact that there is no mandated teaching in medical school for headache disorders is shocking. It’s not only shocking; it’s just unacceptable. And so I’m really hoping to see that change, because most people don’t go straight to a headache specialist. They go to their primary care doctor, or they go to their OB-BYN, or they go to another, an ENT, about something else. And it is so important for these doctors to understand what migraine is, what the options are, and how important effective management is for migraine, just kind of working towards that way of more awareness and effective, tolerable treatments so that we can start to get our lives back. It is so important, and that’s my hope.

Molly: My hope as well, Shoshana. Thank you so much for joining us here on Spotlight on Migraine. I’m Molly O’Brien. I’d like to thank our guest, Shoshana Lipson. She is a patient advocate, a migraine advocate, as well as a writer and public speaker. Thank you again for joining us here at Spotlight on Migraine. I’m Molly O’Brien. Hope to see you next time.

[music]

Catch Episode 28 with Shoshana, as she explains unexpected anecdotal finding about anti-CGRP medications gathered by a survey of her online group.

Thank you for tuning in to Spotlight on Migraine. For more information on migraine disease, please visit MigraineDisorders.org.

This podcast is sponsored in part by Amgen/Novartis.

*The contents of this podcast are intended for general informational purposes only and do not constitute professional medical advice, diagnosis, or treatment. Always seek the advice of a physician or other qualified health provider with any questions you may have regarding a medical condition. The speaker does not recommend or endorse any specific course of treatment, products, procedures, opinions, or other information that may be mentioned. Reliance on any information provided by this content is solely at your own risk.