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26 July 2021

Migraine and Multidisciplinary Treatment with Dr. Kyle Bills

Chronic headache patients frequently encounter major obstacles in terms of everyday function and psychological health. According to research, up to 34% of these people have restricted participation in several aspects of their lives, including employment, household management, and family activities, and up to 78 percent of patients have comorbid psychological problems.

Because of the complexity of such instances, headache specialists concur that multidisciplinary treatment (MDT), which may include psychological support as well as physical or occupational therapy in addition to the medical care provided by the referring physician, is the most effective strategy.¹

Dr. Kyle Bills is the founder of the Migraine & Neuro Rehab Center in Provo, Utah. The center was founded to provide specialized care to people living with severe, chronic migraine, and advance current research efforts in improving that care. Dr. Bills has his Ph.D. in Neuroscience from Brigham Young University and is currently the Associate Dean of Research at Noorda College of Osteopathic Medicine and holds adjunct faculty appointments in the Department of Psychology at Brigham Young University, and in the Department of Neurology at Parker University.

I had the pleasure of speaking with Dr. Bills about his family history with migraine and the importance of patient empowerment, multidisciplinary care for migraine disease, and how patient education can help bridge the gap in care.



Your mother experienced migraine when you were younger. How did seeing her go through her attacks influence your interest in helping others with migraine and headache? Did you personally experience migraine or has anyone else in your family? Did your family history with migraine influence your decision to go to medical school?

This was something that I watched in my childhood that affected my mother greatly. I watched it, tear her apart, watched her go to different visits, never get answers, and just kind of go through this cycle. And a couple times a week, she'd be, you know, locked up in a room unable to do the things that she wanted to do. I watched it dig at her, watched it fill her with guilt because she couldn't do the things she felt like she should be doing. And, you know, from our perspective, we think, no worry, everything's fine. We got your back, you know. Well, we're family, we're gonna work through this. But from her perspective, you know, you just watched it kind of tear at her and beat her down. And I think that's something that is now that she's doing better, it's still something that I think is producing PTSD in her life. That phase where, you know, she feels like she lost years, she lost interaction, she lost some of those things and that's a big deal to me. 

And even today, you know, I watched that in her and, you know, we do everything we can to kind of help her through that and say, ‘No, don't. You know, this is not something you need to be worried about.’ But I know, it still gets her. And she carries that, and she'll carry that, I think. So, you know, that was really, for me, one of the reasons that, you know, when I got through training, and then some of those things, this has just been a very passionate topic for me, it hits close to home, it's something that's hit my mother has hit my aunt's, it hit my grandmother, it hit my uncle, you know, these are things that I've watched it have a pretty devastating impact on relationships and families and some of those things. And so, we really had a significant amount of drive to be able to dedicate time to this and figure this out.

My background is a little eclectic, in that we kind of combine traditional training with alternative training, we kind of went both routes. I have a Ph.D. in neuropsychopharmacology and training in more traditional neuroscience, neurology, and then also a doctorate in chiropractic. And I spend the majority of my day at the medical school as a professor of neuroscience, and as one of the Associate Deans of the medical school. And then we move into the clinic, during the last part of the day, where we attempt to implement some of the latest research. And so we spend a good amount of time trying to find new solutions. And scouring for the latest data that's been published from across the world that relates to some of these conditions.


Not everyone understands that migraine is a complex neurological disease that runs on a spectrum and is essentially, a whole-body disease that impacts more than just the brain. The Migraine Rehab & Neuro Center focuses on a multimodal discipline in the treatment of migraine. How did you and your team decide this was the best way to approach migraine?

Migraines, they're multisystemic. And they're multimodal, and they're multidisciplinary. And today in medicine, we are so specialized, that a lot of times, that's very helpful when we have a very particular condition that needs to be treated. But when you end up in a condition that's cross-disciplinary, it's actually the greatest weakness that we're facing in migraine treatment today is that it requires a broad, holistic, all-around approach. And there are very few that are specialized in that way to be able to provide that because once either a neurologist or an orthopedist or a gynecologist or a family practice physician, and each holds a piece of the key to this to this particular lock, but it needs to be brought together in all of these disciplines. And it's not reasonable to expect someone to manage five different physicians. And I say that on purpose because it requires the patient to manage the physicians to find answers, and that's not fair. And so that's really, I think the crux of how we've tried to understand and approach migraine is we need to focus everything down to the point that we're able to keep on top of all of these things as they relate to migraine.

But my experience has been, you know that the word doctor has become a little bit odd over the last 100 years. It's supposed to mean teacher. And that's what the word means. That's the root of that word. And unfortunately, it often has become transliterated into a dictator. And a patient goes in and I love that term. In fact, we were just discussing this term, this medical PTSD, this is a real thing. And it arises from not being listened to; not being heard. And then the hopelessness of not being able to find answers. And then you hear comments, like, there's nothing else that can be done for you. And what that really means is if we translate that into actual English, that means I don't know what else to do for you. That's what should have been said. And what that projects to a patient in the sense of hopelessness. And it should be that if a doctor doesn't know what to do, they should refer the patient to someone who does so that they can help me, we're supposed to be educators and facilitators and partners with patients to educate on as much as we can so that a patient can decide what care is best for them. And this is the art that's been lost in the last 150 years.

 

What types of migraine patients wind up in your center? Are they typically chronic, intractable, and/or refractory? Do you also treat people who are mid-to high-frequency episodic?

There is a little bit of range, but honestly, we pretty much focus almost entirely on intractable refractory. This needs to be a pretty chronic condition that's not responded properly to normal protocols. Because if there's an easy answer, well, let's find it. And so generally speaking, we will work with their primary care physician or their normal neurologist. And if someone comes in and we're their very first line of defense, often we will say hey, you know, we've got in the clinics some primary care physicians and sports medicine doctors and pediatricians and things like that. And, and I'll say, hey, let's explore some simpler options. By the time someone gets to meet with us, you know, we'll spend three or four hours in the process of diagnostics. And if there's a simple answer, like you're dehydrated, we want their primary care physician to have found that and dealt with something a little bit easier on the path. And so, we're almost entirely chronic, intractable, and refractory.


What do you want to say to someone who has lost hope in ever returning to a life where pain and migraine isn’t the dominant factor in it? 

What a great question. I mean, that's, that's every patient encounter I have at this point, right? If you look in someone's eyes, you can see it. I mean, you've seen this if you've experienced it, and as you work with patients, I know you've seen this. And honestly, I think it's one of the most important critical pieces the first time we meet with somebody. You have to stop and listen first. And sometimes people need to talk for 30 or 40 minutes. And, and I think really, that is probably one of the most important first steps to someone getting over this medical PTSD. I think some of the hopelessness comes because for a good number, because they've simply not been heard, no one will listen. And no one will allow them to describe and, and, you know

It's nobody cares what they have to say, nobody stops to listen. And my experience has been that if someone has a chance to just download, and they can do it in a safe environment, there's instantly a boost in hopefulness just from being heard. Somebody goes, “Oh, my gosh, somebody is going to listen to me”. And it instantly sparks in their mind a hope of maybe this will be different.

I think the relationship is the most important thing. And it has to start on that mutual respect. A patient needs to be heard. And then probably the second main point is education. Because if we can educate someone on what's happening, it's extraordinarily empowering for someone. Because finally, they go, I understand what's happening. When I experienced this symptom, I know what's happening. And in my experience, people are not dumb. People are far smarter than we give them credit for. And if we can educate people, we can start to find solutions. People start to partner (with their healthcare provider). They know things about their body that I never will. I could have gone through 25 years of training, but I'm not inside their skin. I don't know what they're experiencing. And I need them to live it. And to be able to express and to feel and to go through that process. And so listening intently, and then educating deeply. And then empowering a patient to move forward, I think is the key to helping somebody move out of hopelessness into a proper path of healing. And so you know, I guess it's in my experience, it's less about what you say, and more about empowering and getting them to that point where they feel like they can do something about this.


What advice would you give to those looking for comprehensive treatment of their migraine but do not have access to a center like yours?

You know, that's a great question. And I think that the biggest thing that we can do is if we can improve the accessibility to education. I think that's the most empowering thing because we can only see so many patients as we said earlier. Working at the Medical School and spending two or three hours with a patient… There are logistical problems with some of these things. Like we're never going to be able to treat 50% of the patients in the United States and abroad, we can't. It's not, it's not even feasible. And so I think the only way is we have to educate, we have to teach. And we have to be relentless in the dedication to getting information to the populations that need it and go through that process of empowerment. I think that's the most important thing we could do.


How can people get in touch with you?

One of the things that we're really trying to do and kind of in the same context of education is trying to work with partners to create things like Facebook live events where we can educate, teach, and then field questions in real-time. And we can have patients that can interact. And so, I think one of the most profound things is, where we're looking to partner with people that are so invested like you to say, “Okay, how do we educate?” How can we work together to get information to the people who need it and the populations that need it? So I think if that would be one of the more profound things, I think that could come of this, if we could find a way to say, “Hey, you know, what, let's educate, let's let's work together, let's see how we take this to the world, and let's see what kind of a difference we can make.”

💻I will be hosting a Facebook live event with Dr. Bills in the upcoming weeks about the new developments in migraine-specific treatments over the past few years and what is coming down the pipeline in the near future. Be sure to sign up for the event on my Facebook page and submit any questions beforehand on the event page when it becomes available!

1. Rodriguez, T. (2018, December 18). Multidisciplinary Treatment Teams for Chronic Headache: Tips for Getting Started. Retrieved from https://www.neurologyadvisor.com/topics/migraine-and-headache/multidisciplinary-treatment-teams-for-chronic-headache-tips-for-getting-started/


15 July 2021

European Migraine Patients Needed for Focus Group

 



admedicum is looking for people living in Denmark, Poland, or the Czech Republic with severe forms of migraine to provide feedback on the usefulness, the burden, and the needs of a migraine patient to participate in a clinical trial.

admedicum is dedicated to ensuring that the interests and experiences of patients are better integrated into research, development, and provision of health care.

Find out more at: www.admedicum.com

About the Focus Group

This will be an online focus group with a total of 6 patients. The goal of the focus group is to understand how useful you would consider several elements in a clinical trial to participate as a migraine patient. For example, would you see any burdens for those elements and your needs if you took part in a clinical trial?


Requirements to Participate

To participate in the focus group, you would need to have:
  • At least 8 migraine days/month on average
  • Access to a computer or tablet with a camera


More Details

The online focus group will use Zoom with appropriate visuals, sounds, and sufficient off-camera time and is planned to begin around the end of August. Each session is scheduled for 1.5 - 2 hours with a total of two (2) sessions. Little preparation is needed for participants before the sessions. Data protection is ensured and you will receive compensation for your participation.

If you are interested in participating, we would like to ask you to complete a short online survey that takes approximately 5 minutes of your time:




10 June 2021

HDPAN Advocacy Day of Action



What is the Headache Disease Policy Action Network?

The Headache Disease Policy Advocacy Network (HDPAN) is a new multi-stakeholder group working together to create, implement, and support advocacy and policy initiatives that benefit the headache disease community. HDPAN (pronounced head pain) was formed in early 2021 with an ambitious goal in mind: launching a four-year strategic plan that would take a proactive approach to advocacy to make real and strategic gains while the community continued to address regular policy and access challenges. The thought of any patient living in pain and unable to access relief motivated our decisions. We’ve had individual successes addressing state-based issues as they arise, but we know policy changes come from the top down. We must focus on system-wide change.

The headache disorder and migraine disease community is growing. As more achieve diagnosis and begin to seek care, advocates for health are stepping forward and stepping up. This has presented opportunities to not only advance research and raise public awareness but also shed light on the need for meaningful policies that can help headache and migraine patients access much-needed care.

Why Advocacy Matters

In recent years, the migraine community has been called to action with intensifying frequency. Longtime advocates have been joined by newer groups to address complex value assessments, raise awareness with and increase support from Capitol Hill, and break down payer access challenges to innovative treatment options. We have made partnerships with like-minded advocates in other communities such as the veterans' population. We have acknowledged disparities in care and sought to address them. At every turn, the community has risen to the occasion, set record levels of patient and clinician engagement, and created change.

As advocacy efforts have deepened, adding new members and successes, there has also been an increased need to have a network to serve as strategic counsel to help identify ways the community could better leverage capacity on advocacy and policy initiatives. No single group can do this work alone - but we can find more ways to cross-collaborate in order to maximize resources and get to goals faster.

Join Us on June 16th

On June 16th, HDPAN will be asking all of our migraine and headache community advocates, friends, family, and supporters to join us by taking part in our first annual Advocacy Day of Action. On this day, you will be reaching out to your Representative in Congress to ask for their support of a House Resolution (H.Res), designating June 2021 as Migraine and Headache Awareness Month. This Resolution will serve to educate our Representatives about the substantial impact migraine and headache disease has on our community and show their support for us. 

This Resolution is being led by Representative Madeleine Dean (D-PA-4th). Sign up to join our virtual webinar on June 14th to learn more about this day.

Be a part of advocacy action and join our Voter Voice Campaign!

https://www.votervoice.net/AHDA/campaigns/85298/respond

RetreatMigraine 2021



RetreatMigraine is a conference that gathers people living with migraine disease for education, advocacy training, and support. This year it will be a hybrid event held from October 15-17, 2021 with the in-person portion at the Sonesta Redondo Beach & Marina. Our in-person event is currently sold out, but cancellations are unfortunately inevitable due to the nature of our population. You can add your name to our waitlist and we will offer spots as they become available.

Registration for the virtual event is open June 3rd and shipped welcome boxes including select products donated by supporters with virtual registration will be available on a first-come, first-served basis. For more information, visit https://headachemigraine.org/retreatmigraine/.

If you have any questions, please contact the RetreatMigraine planning committee at retreatmigraine@headachemigraine.org.

11 May 2021

SUNCT/SUNA & Trigeminal Neuralgia Town Hall

 


We’re sharing with you an opportunity to learn more about some less common headache types. The Coalition for Headache and Migraine Patients (CHAMP) is collaborating with Praxis Precision Medicines, a clinical-stage biopharmaceutical company, to host a series of virtual Town Halls on SUNCT/SUNA and Trigeminal Neuralgia.

Short-lasting unilateral neuralgiform headache attacks (SUNCT)At least once a day, attacks of mild to serious, purely unilateral head pain lasting seconds to minutes and are typically accompanied by pronounced lacrimation and redness of the ipsilateral eye.

Short-lasting unilateral neuralgiform headache attacks with cranial autonomic symptoms (SUNA) - Attacks fulfilling the criteria for SUNCT with only one or neither conjunctival injection and lacrimation (tearing).

During the town hall, Praxis will share its research in the rare headache and pain space. It is currently in the early stages of developing medicine for SUNCT/SUNA and Trigeminal Neuralgia. 

Due to the relatively small number of SUNCT/SUNA and TN patients, these Town Halls are unique events to learn directly from individuals with these conditions.

Virtual Town Hall: May 25 at 6pm ET


Register: https://tinyurl.com/yvv479je


21 April 2021

Join The Diva Squad for Miles for Migraine - Hartford 2021


Hi Guys!

I just wanted to take a moment to tell you about an organization that’s very special to me.

Miles for Migraine is a nonprofit whose mission is to improve the lives of people with migraine and their families.

They raise awareness about headache disorders and raise funds to help find a cure for migraine.

I’m going to be supporting them by participating in an upcoming Walk, Run, Relax event where I’ll be committing to some form of intentional movement, whether it is walking, stretching, hiking, or gentle yoga.

This year, as in past years, I am raising awareness for migraine because I and millions of other Americans live with migraine disease and Miles for Migraine is the one singular organization that allows migraine patients to show up in any way they can to support migraine research, fellowships, and awareness.

Anyone want to join my team and help advocate for those who experience migraine? We are The Diva Squad and we are participating in the event, Miles for Migraine - Hartford 2021.

I hope to "see" you there! The virtual event runs from April 28 through May 6. Remember that any intentional movement or relaxation activity counts!

Be sure to dress up in your best purple flair and post to social media for another chance at a fun prize!

As always, thanks for your support. 💜



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