Talking Head Pain

On this episode of Talking Head Pain, Sarah is joined by Judith Klausner, a migraine patient and an artist from Massachusetts with a love for small, intricate, and overlooked things. Judith’s experience of invisible disability and chronic pain plays an integral role in how she views the world and creates art. Her work has been featured in Harper’s magazine, Reader’s Digest, the Huffington Post, and NPR. 

Join Sarah and Judith as they discuss the inspiration for her children’s book on migraine attacks, Noah the Narwhal: A Tale of Downs and Ups as well as creating art with chronic and mental illnesses, and the importance of rest as a form of productivity.

Among the highlights in this episode:

01:00: Sarah kicks off the episode by asking Judith what word she would use to describe her migraine attacks

01:48: Judith shares about the complexity and various aspects of migraine and recounts her worst migraine attack

02:58: Sarah emphasizes the importance of discussing how migraine attacks can impact significant life events, like a wedding

05:12: Judith shares her journey of finding a supportive community of migraine patients on Twitter and how it led her to write a children's book

08:19: Judith explains why she chose a narwhal as the protagonist of her book

09:32: Judith discusses how her art is influenced by her chronic condition, creating visual representations of her migraine attacks and turning her medical ephemera into pieces of art

11:59: Sarah and Judith discuss the importance of recognizing and celebrating the chronic illness community and how strength and beauty is often overlooked in the chronic illness community

14:14: Sarah asks what advice Judith would give to artists who have a chronic condition and who are just beginning their artistic journey

17:39: Judith shares her best self-care tips

Contact Our Hosts:

Joe Coe, Director, Therapeutic Area Growth and Integration at GHLF: [email protected]

Sarah Shaw, Senior Manager of BIPOC Community Outreach at GHLF: [email protected]

We want to hear what you think. Send your comments, or a video or audio clip of yourself, to [email protected].

Catch up on all our episodes on our website or on your favorite podcast channel.

See omnystudio.com/listener for privacy information.

On today’s episode of Talking Head Pain, Sarah is joined by chronic migraine patient D’Sena’ and Bailey, her service dog, who helps her with her chronic illnesses. D’Sena’ is also a single mother of a child with migraine attacks, and she shares with us how she supports him during these episodes.

Join Sarah and D’Sena’ as they dig into topics such as caregiving, parenting, advocacy for children, service dogs, health insurance, and discrimination related to chronic migraine and health care for women of color. 

Among the highlights in this episode:

01:14: Sarah kicks off the episode by asking D’Sena’ what word she would use to describe her migraine attacks

02:21: D'Sena' shares her experience as a mom with chronic migraines while caring for her son, who also experiences migraine attacks

03:52: D'Sena' and Sarah discuss the challenges faced by parents of children with migraines and the importance of recognizing their specific needs

05:57: D'Sena' discusses the importance of recognizing migraine symptoms in children and helping them advocate for themselves

07:27: Sarah and D'Sena' talk about the different types of migraine attacks and the importance of early diagnosis and treatment

07:56: D'Sena' shares the challenges of not being believed by health care professionals

09:56: The struggle of finding the right balance of medications and working through pain for people with chronic migraines

10:48: D'Sena' shares how her experience with the migraine community and participating in events like Headache on the Hill have helped her feel more supported and informed

12:18: D'Sena' discusses the challenges of navigating the health care system and insurance companies in order to get proper migraine care

Contact Our Hosts:

Joe Coe, Director, Therapeutic Area Growth and Integration at GHLF: [email protected]

Sarah Shaw, Senior Manager of BIPOC Community Outreach at GHLF: [email protected]

We want to hear what you think. Send your comments, or a video or audio clip of yourself, to [email protected].

Catch up on all our episodes on our website or on your favorite podcast channel.

See omnystudio.com/listener for privacy information.

In this episode of Talking Head Pain, Sarah is joined by Kate Schwab, LCSW, a somatic therapist who also happens to live with migraine. Kate uses a client-centered approach to therapy, tailoring her treatment to each individual’s unique needs and goals. Kate integrates evidence-based techniques such as cognitive-behavioral therapy (CBT), mindfulness, and psychodynamic therapy to help her clients achieve lasting change.

Join Sarah and Kate as they have a real conversation about how migraine and mental health intersect, what drew her to become a therapist, the stigma around speaking up about mental health and pain, and the importance of having an inclusive therapist that creates a safe space for those living with chronic pain like migraine. 

Among the highlights in this episode:

00:58: Sarah kicks off the episode by asking Kate what word she would use to describe her migraine attacks

02:26: Kate recalls her worst migraine attack, which coincidentally was also her first one

04:50: Kate describes her allergic reaction to an anti-nausea medication she experienced while being treated for migraine at the ER

07:08: Sarah and Kate discuss the intricate connection between migraine and mental health and how patients should be considered experts on their own bodies and experiences

09:13: Kate explains her journey to becoming a migraine therapist and her emphasis on connection, disconnection, and safety in therapy

12:27: Sarah highlights the importance of having a therapist who understands and validates patients with chronic pain

17:34: Kate emphasizes the importance of building relief and connection in therapy, as people with migraine often don't receive adequate support or understanding from others

Contact Our Hosts:

Joe Coe, Director, Therapeutic Area Growth and Integration at GHLF: [email protected]

Sarah Shaw, Senior Manager of BIPOC Community Outreach at GHLF: [email protected]

We want to hear what you think. Send your comments, or a video or audio clip of yourself, to [email protected].

Catch up on all our episodes on our website or on your favorite podcast channel.

See omnystudio.com/listener for privacy information.

In this special episode of Talking Head Pain, Joe is joined by his colleague Sarah Shaw, Senior Manager of BIPOC Community Outreach at the Global Healthy Living Foundation, to discuss an exciting update for Talking Head Pain: Sarah will be joining the podcast as a co-host.

Join Joe and Sarah as they discuss the podcast’s new direction, and how they will continue to uplift the voices of the migraine community that are not always represented.

Among the highlights in this episode:

00:45: Joe kicks off the episode by sharing that Sarah will now be co-hosting Talking Head Pain

00:59: “We took some time to think about how we can better serve our community, and one of the ideas that we came up with was making it bigger than me being the singular host,” says Joe

01:34: “I feel really honored to help pass the mic, theoretically, hypothetically, to more and more patients in the migraine community,” says Sarah

02:10: Sarah discusses the direction she will be taking with the episodes she will host on Talking Head Pain

03:50: Joe explains that he will focus his interviews on health care providers, researchers, and other medical professionals and provide updates from the medical conferences he regularly attends

04:26: Sarah plans to speak with patients and to pass the mic to underserved communities that typically are not as well heard, such as the BIPOC and LGBTQ communities

04:42: If you want your story to be featured on Talking Head Pain, you can send an email to our hosts at: [email protected] and [email protected]

Contact Our Hosts:

Joe Coe, Director, Therapeutic Area Growth and Integration at GHLF: [email protected]

Sarah Shaw, Senior Manager of BIPOC Community Outreach at GHLF: [email protected]

We want to hear what you think. Send your comments, or a video or audio clip of yourself, to [email protected].

Catch up on all our episodes on our website or on your favorite podcast channel.

See omnystudio.com/listener for privacy information.

In this episode of Talking Head Pain, Joe is joined by Dr. Nina Riggins, Director of the Headache and Traumatic Brain Injury Center at UC San Diego Health, a Neurologist, and Headache Specialist. By applying her passions for education and advocacy, Dr. Riggins is very active in the headache community and has participated in Neurology on the Hill as well as Headache on the Hill.

Join Joe and Dr. Riggins as they discuss her work providing migraine education to primary care doctors as well as her education and advocacy efforts aimed at bolstering awareness so patients can reach earlier diagnosis and achieve better management of their symptoms. Dr. Riggins also shares the latest on migraine treatment options and research advancements.

Among the highlights in this episode:

01:25: Dr. Riggins kicks off the episode by sharing her excitement with her work in the field of headache medicine

02:17: Dr. Riggins describes her work for the American Headache Society in providing education directly from headache specialists to primary care doctors

04:43: “It was amazing to me to see that Headache on the Hill this year did address pediatrics [on] kids issues with migraine… proposing [a] letter to the Department of Education to support our kids when they need extra resources in school to be successful in the long run, because migraine is not just a headache, it's a whole disorder of brain networks,” says Dr. Riggins

07:06: The challenges migraine patients face in terms of advocacy and access

09:42: Joe and Dr. Riggins discuss unmet needs for researchers, including biomarkers and precision medicine

12:08: The importance of pursuing research for long COVID, especially in the area of headache medicine

13:07: The link between autonomic dysfunction and migraine

13:42: “Some people can have these multiple headache disorders, migraine and cluster, even hoarse voice during attacks and it's because [of] this autonomic neurosystem,” says Dr. Riggins

Contact Our Host:

Joe Coe, Director, Therapeutic Area Growth and Integration at GHLF: [email protected]

We want to hear what you think. Send your comments, or a video or audio clip of yourself, to [email protected].

Catch up on all our episodes on our website or on your favorite podcast channel.

See omnystudio.com/listener for privacy information.

This week on Talking Head Pain, Joe is joined by Susan McManus, a migraine patient and advocate who was diagnosed 20 years ago. Describing herself as a “highly functioning migraineur” when her kids were still at school, Susan’s life was turned upside down after her condition became chronic.

Join Joe and Susan as they discuss how she navigated the shift to chronic migraine, her advocacy journey, her involvement with Headache on the Hill, and what she’s learned in trying to remain active while surrounding herself with a great team of doctors.

Among the highlights in this episode:

01:13: Joe and Susan McManus kick off the episode by each sharing an analogy about how fatigue feels

02:07: Susan shares about getting diagnosed 20 years ago and how she was able to manage her condition back then while staying busy

02:54: Joe asks Susan how her family reacted as her condition shifted from episodic to chronic

04:18: Susan discusses her advocacy journey and what led her to participate in her first Headache on the Hill in 2020 

05:19: Joe shares he was recently a speaker at the Migraine World Summit. You can watch his interview via the link below:

https://migraineworldsummit.com/talk/lgtbq-migraine-care-disparities/

06:13: Susan shares why she doesn’t want to think about her migraine all the time and how she is making it a point to remain active

07:25: “I'm just going to pretend I don't have migraine, and I'm going to try to get out of the house and do something every day,” says Susan

08:58: Susan discusses how she’s tried to push through her symptoms and the reality of living with chronic migraine as well as the impact on her personal and professional life

11:27: “I've created a team of doctors, and they listened to me... So that's so important because I think a lot of doctors don't listen to the patient. And that's exhausting being your own advocate,” says Susan

Contact Our Host:

Joe Coe, Director, Therapeutic Area Growth and Integration at GHLF: [email protected]

We want to hear what you think. Send your comments, or a video or audio clip of yourself, to [email protected].

Catch up on all our episodes on our website or on your favorite podcast channel.

See omnystudio.com/listener for privacy information.

On today’s episode of Talking Head Pain, Joe is joined by chronic migraine and long COVID patient Marnie Russ, Program Administrator for the National Kitten College Program (NKCP). Through her work at the Kitten program and speaking at migraine events like Headache on the Hill, Marnie has had a positive impact on both humans and our feline friends.

Join Joe and Marnie as they discuss caring for kittens, how migraine impacts relationships, and how COVID can change one’s headache.

 

Among the highlights in this episode:

00:32- Joe kicks off the episode by introducing today’s guest, Marnie Russ, a chronic migraine and long COVID patient and the Program Administrator of the National Kitten College Program

 

03:15- Marnie discusses her background working with nonprofits

 

03:57- Joe asks Marnie what lead her to speak at the Headache and Migraine Policy Forum to talk about migraine and long COVID

 

05:46- Marnie tells Joe how her romantic relationships changed when she developed chronic migraine

 

08:43- Joe and Marnie discuss what it means to not have the luxury to fail

 

10:24- Marnie talks about how COVID changed her health

 

13:19- During her briefing about migraine and COVID, Marnie talked about the fear and uncertainty surrounding migraine after having COVID

 

16:21- Marnie tells Joe about how she manages her triggers

Contact Our Host:

 

Joe Coe, Director, Education and Digital Strategy at GHLF: [email protected]

 

We want to hear what you think. Send your comments, or a video or audio clip of yourself, to [email protected].

 

Catch up on all our episodes on our website or on your favorite podcast channel.

See omnystudio.com/listener for privacy information.

On this week’s episode of Talking Head Pain, Joe is joined by Wayne Anderson, DO, FAHS, FAAN, a neurologist in San Francisco, CA. In addition to being a provider, Dr. Anderson is on the Board of Directors of the American Academy of Neurology and takes part in advocacy events like Neurology on the Hill, so that he can be a part of a chorus of healthcare providers trying to improve the lives of those living with neurological disorders. 

 

Join Joe and Dr. Anderson as they discuss Neurology on the Hill, the challenges facing providers, and how providers can become advocates.

 

Among the highlights in this episode:

00:22- Joe kicks off today’s episode by introducing Dr. Wayne Anderson, a neurologist and advocate, and asks Dr. Anderson about his involvement in Neurology on the Hill

 

01:50- Dr. Anderson talks about the issues that Neurology on the Hill has advocated for in the past

 

03:18- Joe asks about the impact that Step Therapy can have on the patient experience and journey

 

04:41- Dr. Anderson discuss the impact Prior Authorization has on him as a physician and the reforms that may be coming

 

09:50- Joe asks Dr. Anderson if he thought he would be involved in policy when he started medical school

 

10:33- Dr. Anderson shares what excites him about the future of neurology

 

13:58- Dr. Anderson shares ways providers can get involved in advocacy

See omnystudio.com/listener for privacy information.

This week on Talking Head Pain, Joe is joined by Laura Laureta, a migraine patient and creator of Lit Up My Mind, a website dedicated to making resources about migraine and traumatic brain injury accessible to the community. Through this work, Laura turns the pain she’s experienced into hope for others.

Join Joe and Laura as they discuss Lit Up My Mind, being written off by doctors, and the fun of virtual game nights.

Among the highlights in this episode:

00:49- Joe kicks off the episode by introducing today’s guest, Laura Laureta, creator of Lit Up My Mind

01:25- Joe asks Laura about the process of getting a traumatic brain injury (TBI) and migraine diagnosis

03:18- Laura tells Joe about the feeling of validation she got when she went to a provider that didn’t write her off

04:18- Laura shares advice for those who are being written off by the medical system

05:16- Laura tells the story of her worst migraine attack

07:09- Joe and Laura talk about the beginnings of Lit Up My Mind and what inspired Laura to create a free resource

09:08- With Talking Head Pain being a resource featured on Lit Up My Mind, Laura tells Joe what connected her to the podcast

10:45- With the prevalence of virtual meet ups that came about from the pandemic, Laura started Brain Busters, a virtual game night for people in the TBI and migraine communities

14:01- Joe asks Laura about what it feels like to find the right treatment plan

16:25- Laura shares what she wishes people who don’t live with migraine would know about living with the disease

Contact Our Host:

Joe Coe, Director, Education and Digital Strategy at GHLF: [email protected]

We want to hear what you think. Send your comments, or a video or audio clip of yourself, to [email protected].

Catch up on all our episodes on our website or on your favorite podcast channel.

See omnystudio.com/listener for privacy information.

See omnystudio.com/listener for privacy information.

Last week, Joe attended Headache on the Hill, an advocacy event which brings migraine patients and providers to Capital Hill to share their stories with elected officials. Joe was able to meet up with Natalie Copeland, migraine patient/advocate, and Dr. Stephanie Nahas, a neurologist/advocate, who brought their stories and expertise to the nation’s capital.

Join Joe, Natalie, and Dr. Nahas as they discuss their goals for the 2023 Headache on the Hill.

Among the highlights in this episode:

00:24- Joe introduces Natalie Copeland, a migraine patient from Vermont, who tells Joe about the importance of sharing her story at Headache on the Hill

00:54- Natalie shares her connection to migraine

01:16- When meeting with lawmakers, Natalie wants them to know that migraine is more than a headache and affects the way she lives her life

01:50- Joe introduces neurologist and migraine advocate, Dr. Stephanie Nahas

02:07- Dr. Nahas talks about the importance of neurologists and providers to attend events like Headache on the Hill

02:56- As advocates and neurologists meet with lawmakers, Dr. Nahas shares what she hopes the elected officials will take away from their conversations

Contact Our Host:

Joe Coe, Director, Education and Digital Strategy at GHLF: [email protected]

We want to hear what you think. Send your comments, or a video or audio clip of yourself, to [email protected].

Catch up on all our episodes on our website or on your favorite podcast channel.

See omnystudio.com/listener for privacy information.

See omnystudio.com/listener for privacy information.