Best Ways to Overcome Vestibular Migraine

Megan Howard is a vestibular migraine sufferer turned VM warrior. She’s the digital strategist at Migraine Again. In this podcast, she gives us ways to overcome the perils of VM.

Below is the podcast transcript:

Dr. Pearce

Hello and welcome back to our podcast Deep in Dizziness. My name is Dr. Pearce alongside Dr. Nava. We specialize in leading vestibular diagnostic testing and therapeutic techniques. Today’s show is very exciting. We have Megan Howard on the show today, Megan actually leads digital strategy for migraine again, their focus is an online audience and development with community engagement. Megan brings over 15 years of experience in product marketing, content, and community as a strategist, advisor to fast-growing startups, digital media businesses, and nonprofits. Prior to working with Migraine Again, Megan served as a product and marketing executive. She’s done all kinds of wonderful things. And she began her career in digital consulting with a lot of different medical groups. Megan now serves as the social media lead for the Migraine World Summit. They feature 30 World Class different world-class experts on migraine, headache, health, and wellness. She is a migraine sufferer herself turned migraine warrior, and we are thrilled to have her on the show today to give us some insight and share some stories. Welcome, Megan.

Megan

Thanks for having me.

Dr. Nava

How are you doing?

Megan

I’m pretty good today. Only slightly dizzy today.

Dr. Pearce

Dun dun dun.

Dr. Nava

Okay, Megan, we hear that you’re a migraine sufferer turned migraine warrior. Can you fill us in on your story and how you became a migraine warrior.

Megan

Yes, of course. Well, it’s been a long and winding road. I call it a rocky road. Eight years ago, I came back from a trip to Europe. And the day after I landed back in New York City where I was living at the time, I went straight back to work. And I started experiencing all of these very disturbing symptoms. I had tremendous pressure on the right side of my head and my balance was really off. And it felt like I was listening to one side like if you were on a sailboat, and you’re trying to fight against the way the boat tips, and so, you know, I’m getting over a cold from the trip and I thought maybe I was just jet-lagged or had a virus but after a few days, I was concerned enough to go into urgent care.

And it was a big deal because I generally had avoided doctors in the past. But that trip to Urgent Care really started a bewildering five-month journey where I bounced from specialist to specialist, and they considered a number of different diagnoses and did countless tests.

And by the end, I was really, really falling apart, both personally and professionally. And having a difficult time getting answers. But in my research, I stumbled upon Dr. Timothy Hain. I kind of consider him the godfather of vestibular migraine and the way he described on his website to vestibular disorders that sounded like they could be a fit for what I was experiencing. So we finally got a referral to a neurologist in New York who specialized in balance disorders. And she looked at all my paperwork and she diagnosed me that day, not with vestibular migraine, but with something called Mal de Debarquement syndrome. And then I had been experiencing migraine attacks, but they really came in the form of extreme dizziness and also head pain at that time.

Mal de Debarquement for those of your listeners who don’t know is this neurological disorder where after you get off a boat or a plane or a train, you never quite get your land legs back, you feel like you are rocking or bobbing or swaying forever. And it’s the kind of torture you really can’t fathom until you experience it for yourself. I’m sure you’ve seen patients with this at your clinic. When I saw this doctor, what’s interesting is she said she had a treatment from Debarquement. And if I was willing to engage in this research study, I would immediately feel better. And at this point, I was desperate. And I asked, was it invasive? And she said, No, so I went for it. And set up for this therapy was really wacky. So there was a Ph.D. in a lab who had all sorts of wires and ways to measure your balance and your eye movements. And he put me through his treatment protocol. And, you know, I am the ultimate skeptic, but it really gave me a sense of tangible relief right away.

I had been four months relying on people’s arms or railings to navigate my way through New York City and I came out of that treatment with an improved gait, the head pressure went away immediately, and I honestly skipped my way through Central Park. I was so happy but the follow-ups were less promising. I still had these residual sessions. This pulsating feeling on the right side of my head and dizziness and brain fog that just wouldn’t resolve. And when I went back to the scientist who gave me the treatment protocol for MDD, he said, You know what, I think you have a migraine and you need to go back for treatment. So I did that and I was really unwilling to get prescription medications because I had been so sensitive to some trials I had done in the past.

And I thought lifestyle changes would help resolve my symptoms. Unfortunately, they didn’t. So I took a desperate measure, I moved cross country to Southern California, to see if a change in weather and environment would cure me. It didn’t but it helped to be out of New York City.

Then I was trialing meds out here when I ran across something called the Migraine World Summit. And that was a real turning point for me in terms of turning from a migraine sufferer to a migraine warrior. I started using some evidence-based supplements that were discussed in the summit and they helped a little. And then I decided to volunteer for the summit in 2008. Then while I was going through another medication trial, this time for vestibular migraine, I did that volunteer project to distract me and give me a sense of purpose while I was waiting to see if medication would kick in because as you know, these trials take forever. The summit turned me into the warrior I am today by arming me with information and new treatment options to consider. And a real community of people who get it. Both the clinicians and the patients who kind of lived the experience of migraine. And that’s how I met Paula Dumas, who is the co-producer of the migraine World Summit, and also the CEO of Migraine Again.

Dr. Pearce

What’s going to be first and forefront of a lot of our listeners’ minds is the second you talked about getting in and doing a treatment protocol that helped with the symptoms of the veering, and the listing, and the dizziness. Do you mind sharing what that was? What that looked like? And what that first step was? Because it sounds like that initially started to give you a little bit of hope and relief.

Megan

I tried to capture all the steps that we went through, but the first thing the scientist did is he had me close my eyes and walk in place. I believe that’s called the Yukata test. So he’s trying to understand how I perceived my place in the world and where I’m off-center. That gave him a baseline to work from. Then he put me on a new Nintendo Wii board, which no joke, I didn’t realize that that would be part of the setup, but it was to entertain me. I got on there and stood in place. He observed any imbalance that I was experiencing. And then he had me close my eyes and do the same thing. Then he put on a pair of what I call goggles, where he could take a close look at my eyes and my eye movements, as he rocked my head back and forth. And as he was doing this, he was coming up with a very bespoke treatment protocol that would address how I’m experiencing my particular form of dizziness and rocking. And the final step was to take all that information and create a pattern of lines that he cast up onto a wall and a circular room. These lines moved in a particular direction while he rocked my head back and forth in time. And the idea is that he was resetting something that had gone a little haywire in my brain called the vestibular ocular reflex. So that’s a lot of science and craziness that happened. But he had been studying this for years. And he had just organized the study and needed candidates. And I’m so glad that I was able to step into that and receive that treatment. Now, they offer it to several people across the country and throughout the world who can afford to make the trip to New York. But really, this is one of the few places in the world where you can get some sort of resolution for MDD. So I was very fortunate to have met him and participate.

Dr. Pearce

That’s amazing and was that Dr. Dye in New York or do you remember the name of the clinic?

Megan

It was Dr. Dye. And you know getting ready to speak with you today I was checking back in with him because we were in touch and realized that he had passed away. But he’s a tremendous scientist and just a wonderful guy who understood the experience of a dizzy patient and was working hard to find a resolution for what people consider as a very rare disease and doesn’t get a lot of attention.

Dr. Pearce

I think it’s pretty amazing and a lot of his protocols and a lot of research arenas have been shared. There’s a lot of clinicians that are excited to really pick up where he left off. So I think with his work with optokinetic exposure, which is what you were getting with the lights and the movement in the room. It’s amazing stuff. So it’s pretty incredible that you were you know, able to receive that firsthand but just knowing that within the dizzy community there’s a lot going on in clinics now and with patients and populations in research. So he really did some amazing stuff to kind of move things and catapult things along for a lot of disease sufferers. So wonderful to hear that you have turned that corner at least initially.

Now, what other kinds of topics, now that you’ve moved through the dizzy piece, do you get approached by from migraine patients? What do most people that you’re working with now wonder about or discuss with you?

Megan

Yeah, there are two subjects that really never go out of style. The first is how do I get relief? So on Migraine Again, we are always covering treatment options whether they are pharmaceutical devices, lifestyle changes, diet, supplements, etc. and fortunately, we’re in an era where there’s so much new ground to cover with some of the new drug classes that are coming out specifically for migraine. And so we are trying to cover that as much as possible. And what we found is that a lot of the information that we’re sharing is news to some of our community’s health care providers. So they are taking these articles and actually showing up at their GP or to their neurologists and saying, “What do you think of this” and sometimes the neurologists and GPs haven’t had a chance to digest that information through their professional programs. They’re appreciative and can go back and do their own research and figure out how it relates to the patient treatment plan. So that’s subject never going out of style. How do I get relief?

The second one is what I like to call “Am I normal?” So people really want to know if what they’re experiencing symptom-wise is due to migraine and then once they can pinpoint it then how best to manage it. And so at Migraine Again, we do deep dives into individual symptoms that make up what I feel is a very complex disease. I recently did a little inventory of symptoms related to migraine and there’s over 40. So there’s no shortage of material there to cover. And for vestibular migraine patients, I think what they really need is an articulation of their symptoms and experiences in relatable language because it’s so bizarre, and it’s just not talked about in the public. I don’t think physicians often have the vocabulary for it either unless they’re very specialized. And so providing that language or description that people can relate to, and maybe even a small description of what’s going on in the brain and the body is really powerful for vestibular migraine patients. But there’s still so much we don’t know and physicians don’t know that it’s difficult to go too deep into the science. A little science never hurts because people want to have a mental model for what’s going on with their brain and body.

Dr. Nava

Can you give us an example of the approach you use to educate these people with vestibular migraine?

Megan

Yeah, my basic mandate is to raise awareness of vestibular migraine in general within the migraine advocacy community. They have been very focused on classic migraine which presents with a headache so it’s important to share with people who are advocating hard for people living with migraines to share with them what vestibular migraine experience is like and so on. A couple of ways that I’ve done that are working directly with the creators of the Migraine World Summit to make sure that we incorporate talks that address vestibular migraine. They did a wonderful one last year by Dr. Michael Tixado. That I just was so thrilled about. I read the transcript last night and he just did a wonderful job explaining what we know and don’t know and what that experience really is like for the patient and doctor. And then in terms of educating people through Migraine Again, I think we’re really in the early stages.

Now, when I joined Migraine Again, they had some very baseline content about vestibular migraine that you could find on websites like Johns Hopkins, the VeDA website, and so I have encouraged my team to dig deeper on certain topics that vestibular migraine patients want to know about but might not be as relevant to folks who have migraine with aura or more traditional migraine. Just a few weeks ago I was explaining to my team, they’re trying to advocate for access to alternative triptans and they wanted my take on it. And I said, well, you know, the vestibular migraine patients don’t have a board of options Not really. And they were thrown by that. So these are people who are very, very well versed in migraines but they don’t have a complete understanding of what that experience is like. So educating the groups who are advocates and experts who are adjacent to a vestibular migraine I think is where we’re starting and then bringing it to the mainstream public through channels like Migraine Again, as is the next step.

Dr. Pearce

Knowing a lot of what happens with patients and once they hear the migraine word, a lot of times, it kind of freaks them out a little bit in the sense of, “I don’t have a migraine, I have this dizziness.” So I think it’s pretty amazing the work that you all are doing to help them understand what that feels like and what that normal or that sense of normal with regard to that population is. How do you keep your advice fresh and non-repetitive once you dig in? How do you keep those channels fluid and exciting?

Megan

The good thing about this chapter and the history of migraines is there’s so much new stuff on the horizon to talk about. So I don’t feel like anything that we’re sharing is stale. Our challenge is taking this new information and making sure that it’s grounded in the evidence, and also caveat adding it if there needs to be more research done. For example, cannabis for migraine is an area that hasn’t been well studied because we haven’t been able to get the funding for it federally, but we’re keeping our eye on it. So, I think once you go beyond the basic approach to how to lead a healthy lifestyle and live with migraines, there’s just a lot of new material out there that people are hungry for. And like I said, I’m not sure that physicians always have access to all of it. So it’s a true partnership, getting that out to both patient and physician so that they can partner together and make good decisions about health care.

Dr. Pearce

Well, as a digital strategist for the medical focus media, how do you determine the right balance of home remedy advice with telling people to get medical attention?

Megan

Yeah, it’s a good question. We have a huge disclaimer that we’re not dispensing medical advice. We’re not physicians, right? So we’re not there to do that job. There are people who are qualified to do it, although we do have a shortage of headache specialists in the US, and definitely a shortage of people who can address vestibular migraine. And so we encourage our readers to talk over any information they take in from Migraine Again with their health professional, and we’re really here to empower people living with migraine with information and news but always in partnership with their doctor. And I will say that we have some articles to help people think about when it’s time to stop with the home remedies and go back to their doctor and try something new. Or find a new doctor or specialist or try a specialty clinic because you really need to partner with someone in the healthcare space to come up with a good treatment protocol. We want to encourage people to not go at it alone.

Dr. Nava

So going back to your personal story, you said that you had some lifestyle changes and you took some additional supplements. Can you go into detail about that?

Megan

Yeah, with all the usual suspects, right, get enough sleep if you have sleep disruption that’s just begging for a migraine. Hydration was a big thing for me to move to Southern California. And I just feel like I need to chug water. And there’s some stress reduction stuff that I honestly haven’t been completely successful incorporating. Meditation is this challenge for me, but I know other people who’ve benefited from it. And then on supplements, I will tell you, the big ones that are evidence-based are magnesium B2, CoQ10. I tried all of them and magnesium has been a real winner for me. It is something that I continue to use. So those changes were all helpful. They raise your threshold for migraine but eventually because I had turned to chronic I needed medication to break the cycle.

Dr. Pearce

You’re really experts at storytelling. I think that’s what really resonates with a lot of people. What do you feel really are the stories that convince people to actually go in and get treatment?

Megan

Well, there there are two sides to this coin. Success stories are powerful motivators that inspire people to act. They think, oh, if this works for someone else, maybe I don’t have to live this way. And it drives people to go see their health care provider and give them something, an example to speak to and talk about whether it could work for them. It also provides a sense of hope if you’re kind of living in the militated world and you don’t see any success stories that can be very overwhelming. So we like to share success stories, but also get honest about people who are really going through it and maybe not quite having positive improvements.

The other motivator, it’s not a story, but people when they feel desperate when migraine interferes with their family life, social life, or their career, or they might have missed a pivotal moment in their child’s development, or been passed over for a promotion, that’s when they go to their physician. And what’s so interesting to me is that a lot of people can really deal with this background headache and head pain and muddle through not really realizing that they have a migraine. And it’s not until the dizziness kicks in, when they’re completely debilitated and disoriented and frankly very scared, that they go in for help. So vestibular migraine and the dizziness that patients experience breeds real desperation. And unfortunately, patients don’t get answers quickly and treatment they need to bounce back.

Dr. Pearce

Well, the migraine World Summit is just around the corner. So is there going to be any programming about vestibular migraine this year?

Megan

Not specifically about vestibular migraine but last year in 2019, Dr. Michael Tixado his talk really encouraged folks to look it up and access it if they can make the investment because that’s behind a paywall, but it was really wonderful. And the way that talk came about was that the people in the migraine community voted for it overwhelmingly as the number one topic that they wanted to be covered. I think people who have VM are tired of being ignored and are hungry for information. So they made their voices heard. And they can do it again this year at the end of this summit and say, “Look, we want a deeper dive on these particular talks of subjects about the struggle or migraine that relate to us.”

So I would encourage anyone who wants that material to appear in the summit to vote at the end of this year’s summit. But I will say that this year, there’s a number of talks that will be very helpful to someone living with vestibular migraine and some of the ones that I have my eye on are weather, food, and the truth about triggers, diet and nutrition, hormonal seasons in a woman’s life, migraine-related mood disorders, supplements, and natural alternatives that are coming back. And then cognition and aging well with migraine. Those are some great talks that will be coming up during the Migraine World Summit, which runs from the 18th through the 26th of March.

Dr. Pearce

And then where is it? What do you have to sign up by?

Megan

It’s free as long as you attend the summit while it’s running live March 18 through the 26. This is the wonderful thing about it. Now. We know people are busy, and people don’t have time to watch all the wonderful material that airs on a given day. So there’s a 24 hour period, maybe a little bit longer where you can access the talks from the previous day. And then after the summit ends, it goes behind a paywall. But honestly, this resource is amazing. It changed my life and many of the other folks that I work within the migraine community, to really empower us to find new ways to treat and live with migraines. So anybody who wants access to these experts and these talks, sign up now and you’ll get emails every day reminding you of what’s on deck.

Dr. Nava

So completely free. They’re not asking for donations. You don’t have to apply for a subscription. Because even I thought, are we going to have to pay for this business?

Dr. Pearce

Break it down for us. So if I’m a patient, where do I go? What do we do?

Megan

Go to migraineworldsummit.com and there’s a big box on the homepage that says register now. It’ll give you all the details. And then while the summit’s running from the 18th, through the 26th of March, you’ll get daily emails letting you know what talks are going and what they’re airing and when they become unavailable or go offline behind a paywall. So at the end of the summit, if you want to spend a little more time you’ll have to pay and there’s different pay packages that you can look at on the website but really, if you can take advantage of it while it’s free, I encourage you to do it. It’s very motivating.

Dr. Pearce

That’s amazing. So just globally, what do you think is the most valuable piece of information for people suffering from migraine in your experience? What is step one?

Megan

Step one is to know that you don’t have to live like this. There are so many people who are dealing with this and suffering and not seeking out treatment. So I would encourage them to seek out resources as we talked about today, the summit, migraine again, but also to know that there are health care providers and physicians who have expertise in this area and can get you a plan that meets your needs and your particular case so that you thrive and not just survive. Your experience in your life with migraine because it’s really about making the most of the time you have here and living with migraines is not easy. It’s extremely difficult but it can be a lot better as long as you take ownership of your health.

Dr. Pearce

I love it. So, Megan, we’re really grateful I think this resource is just amazing for patients to have and getting on Migraine Again and digging around and seeing what resources are there I think will be one of the first steps for a lot of people to have hope. And then be flooded hopefully with the resources that you provide. So we thank you so much for being on today. Where can patients find you?

Megan

Sure, at migraineagain.com

Dr. Pearce

Well, thank you so much. That’s all for this episode, we’re going to thank all of our listeners for hanging out with us and remember, if you want to support what we do, just share and subscribe. We’ve got some wonderful resources for dizzy patients. For more information, you can visit our website at dizzyandvertigo.com

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