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08 December 2021

Pain Secrets: The Science of Everyday Pain on PBS



Those of us who live with chronic pain understand that there is more than just the physical pain we experience on a daily basis. Our emotions and psychological response to pain all play a part in how that pain manifests. This program discusses the pain-brain connection and ways in which we can disrupt the hyperactivity of the pain we live with. A multi-layered approach to changing our pain journey can help us gain better pain relief.

The modalities touched on in the program include biofeedback, neurofeedback, EDMR, mindfulness meditation, acupuncture, and nutrition. 

In this program, I discuss how mindfulness meditation has become an integral part of my migraine toolkit to help manage daily pain as well as foster a healthier way to deal with depression and anxiety.

Watch Pain Secrets: The Science of Everyday Pain* and let me know if you have included any of these techniques in your pain toolkit!


*Originally aired on November 27, 2021, on PBS. A PBS Passport is required to watch this program online. You can sign up with a $5 donation. 


27 October 2021

Whoopi's View on Migraine

This blog is sponsored but reflects my personal experience. 

Whoopi Goldberg needs no introduction. Who doesn’t know the great EGOT that is Whoopi? She’s one of the rare people who has won an Emmy, Grammy, Oscar, and Tony award. She’s the penultimate actor. She’s our favorite auntie in our heads. Most importantly, Whoopi is just like us. Just in case you never heard of Whoopi Goldberg or know of her background you can read her bio here



When I heard that Whoopi was the new celebrity spokesperson for Nurtec® ODT (rimegepant), the first and only FDA-approved migraine treatment for both the acute treatment of migraine and preventive treatment of episodic migraine in adults, I was beyond excited. Throughout my time working in migraine advocacy, there has been a lack of BIPOC celebrity representation when it comes to relating to the experience of living with migraine disease. Yes, we know of several who live with migraine but there hasn’t been a relevant voice people of color could relate to on a regular basis. 

My first memory of watching Whoopi Goldberg was in The Color Purple when I was around 8 or 9 years old. That movie became an instant favorite of mine and so did Whoopi. I grew up with her movies and the Comic Relief specials my dad used to watch. She is one of my favorite people on the planet. Her humor, humanitarianism, sincerity, unwavering self-confidence and self-identity, and pure talent all made Whoopi that auntie in my head. 

With Whoopi sharing her journey and experience living with migraine, it has made me feel seen in a way I haven’t before. Representation matters. She is tangible, attainable, familiar, and down-to-earth. Whoopi is real and we really need that realness in the migraine and headache community. So, when I had an opportunity to request an interview with her, I went for it. I wanted to know more about her life with migraine and share that with all of you. 

Nurtec® ODT (rimegepant) 75 mg is for the acute treatment of migraine and the preventive treatment of episodic migraine in adults. Prescription-only. Individual results may vary. Don’t take if allergic to Nurtec ODT. The most common side effects were nausea and stomach pain/indigestion. 


The First of Many 

Whoopi was a young woman when she had her first migraine attack. She would get bad menstrual cramps and she explained her attack felt as if those cramps moved to her head. And her vision changed. They were what Whoopi calls sparkles and silver twists, just like you would see if you were looking through a kaleidoscope. What Whoopi was experiencing was a migraine with visual aura which typically peaks in women in their early 20s. 

There weren’t many answers to why Whoopi started getting these attacks. She basically resorted to what we all do or have done — “lie down, crawl into a ball, and hope for the best.” Some days migraine would hit really, really hard, and other days it would linger in the background letting Whoopi know that it was still around. This cycle of pain continued for years with no real relief. 


A New View on Relief 

Whoopi had tried a lot of different therapies and has heard many reasons as to why she has migraine. But nothing really helped in the long term. Then one day, Khloé Kardashian had a conversation with Whoopi and suggested that she give Nurtec ODT a try because “it’s been very helpful for her.” 

At first, Whoopi was not convinced because there are so many products on the market claiming to help get rid of migraine but had not worked for her. However, Khloé convinced Whoopi to call her doctor and ask about trying Nurtec ODT for her migraine. Which she did and shortly after received a prescription from her doctor. 


And if you get them, it might help relieve your migraine attacks. So, I said okay. I said to my doctor listen, we need to talk about this. Because I would like not to be fearful on a daily basis that I'm going to hit a point in the day and then I'm going to see the silver heading my way and not be able to do anything at all.


What A Difference A (Dissolving) Pill Makes 

Many of us with migraine are used to having to swallow a pill and then wait for any level of relief. Nurtec ODT works differently as it is an oral dissolvable tablet, hence ODT. You don’t need to drink any water to take it. It dissolves under the tongue which makes it super easy and convenient to use at any time or any place. 

For Whoopi, this was an important moment in her migraine journey. Panic and fear always set in when she sees the migraine coming. Panic in having to find somewhere to lay down and fear of the kaleidoscope of silver and stars and pain that were imminently coming. Once Whoopi got her Nurtec ODT out of the package and realized no water was needed to take it, some of the panic started to settle down. 

What Whoopi loves most about Nurtec ODT is that it is in her bag and she can take it anywhere at any time without any water. “I don't need water. You know, I don't need water. I can just take it and know that relief is on the way,” she explains. The relief this medication gives to Whoopi makes her feel like dancing and telling everybody to talk to their doctor about it. “If you get migraines, I want to say go to your doctor, let them know that there may be something out there that can help you. That Nurtec ODT might be something that works for you. I can't say that it will. Everybody has to do it on their own. And if it does, if it works for you, tell everybody you know.” 


Life After Nurtec ODT 

We all want to beat migraine, and no one understands that more than Whoopi. That’s always been her goal. After taking Nurtec ODT for the first time her migraine was gone and that was something she had not experienced in a long time. “I realized that it meant there was one fear I didn't have to carry anymore,” Whoopi explains. Migraine is that thief that lurks around the corner waiting to disrupt your life. Fear is synonymous with migraine disease. But there is always hope. 


Now that I've been living with Nurtec ODT, I cuss a migraine out when it dares to come and tell me it's in the house. Get out!


It makes me feel less invisible to know that even monumental celebrities like Whoopi Goldberg experience the same emotions we do when it comes to living with and managing migraine. It really doesn’t matter who you are in life, migraine disease steals from anyone who has it. It is also refreshing to hear words of optimism and hope from those we look up to. 

Whoopi shared some important words during our conversation that really left a mark on me. It reminded me that she is a human being going through this journey like the rest of us and all she wants is to provide hope in the same way we try to do for each other. No matter where you are on the migraine spectrum, this quote may resonate with you. 


“And so, if you are a sufferer of migraines, this is something that can give you peace of mind. That, as you said, you might not be able to get everything, you know, it may not stop everything, but it may stop more than you had before.


And I feel like anything that gives you more than you had before, can only be helpful. 

So that's what I'm saying to people. I'm saying, listen, I don't know if it'll work for you. This is what it did for me. If it did this for me, it might do something for you as well. So, what's the worst that could happen? It actually might work for you.”

— Whoopi Goldberg


Important Safety Information: 

Do not take Nurtec ODT if you are allergic to Nurtec ODT (rimegepant) or any of its ingredients. 

Before you take Nurtec ODT, tell your healthcare provider (HCP) about all your medical conditions, including if you: 

have liver problems, 

have kidney problems, 

are pregnant or plan to become pregnant, 

breastfeeding or plan to breastfeed. 

Tell your HCP about all the medicines you take, including prescription and over-the-counter medicines, vitamins, and herbal supplements. 

Nurtec ODT may cause serious side effects including allergic reactions, including trouble breathing, and rash. This can happen days after you take Nurtec ODT. Call your HCP or get emergency help right away if you have swelling of the face, mouth, tongue, or throat or trouble breathing. This occurred in less than 1% of patients treated with Nurtec ODT. 

The most common side effects of Nurtec ODT were nausea (2.7%) and stomach pain/indigestion (2.4%). These are not the only possible side effects of Nurtec ODT. Tell your HCP if you have any side effects. 

You are encouraged to report side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch or call 1-800-FDA-1088 or report side effects to Biohaven at 1-833-4Nurtec. 

WHAT IS NURTEC ODT? 

Nurtec ODT orally disintegrating tablets is a prescription medicine that is used to treat migraine in adults. It is for the acute treatment of migraine attacks with or without aura and the preventive treatment of episodic migraine. It is not known if Nurtec ODT is safe and effective in children.

See full Prescribing Information and Patient Information


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.

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