Advocating Online and on the Hill: A Conversation with Kelsey Feng

Today on Talking Head Pain, Joe is joined by Kelsey Feng, a migraine advocate and creator of the social media page, Kelsey’s Migraine. Through their work online and advocacy efforts like Headache on the Hill, Kelsey aims to end the stigma of migraine within the LGBTQ+ and East Asian communities.

Join Joe and Kelsey as they discuss Headache on the Hill, representation on social media, and the importance of increased research efforts.

Among the highlights in this episode:

01:14- Today’s guest, Kelsey Feng, kicks off the episode by telling Joe about the worst migraine attack they’ve experienced

03:11- Joe asks Kelsey about how they talk about pain and chronic disease within the Asian community

05:07- Kelsey shares how when they see chronic disease represented in social media, they do not feel represented

06:33- With Kelsey’s first Headache on the Hill approaching, Joe asks them why it is important to participate in migraine advocacy

08:33- Kelsey speaks to the importance of attending Headache on the Hill as a member of both the BIPOC and LGBTQ+ communities

10:56- Kelsey talks about the need for research on migraine within the East Asian community

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.

In this episode of Talking Head Pain, Joe is joined by Dr. Jono Taves, a physical therapist specializing in the treatment of headache and migraine at the Novera Headache Center. Through his work at the center, his TikTok videos, and podcast, Dr. Taves inspires and educates the migraine community.

Join Joe and Dr. Taves as they discuss the neck’s connection to migraine, advice for those nervous about seeing a physical therapist, and easy stretches to try at home

Among the highlights in this episode:

00:23- Joe introduces his guest, Dr. Jono Taves, a physical therapist specializing in migraine and headache treatment options

01:12- Dr. Taves tells Joe about the connection between migraine and the neck

04:54- Joe and Dr. Taves walk through a stretch for patients who are feeling tension in the neck

08:24- Strength training is a big part of Joe’s fitness routine, so he asks Dr. Taves for his thoughts on strength training and how those with migraine can work out without triggering an attack

12:56- Going to a physical therapist can be a stressful experience for migraine patients, so Dr. Taves gives some advice to those feeling uneasy

17:35- Dr. Taves shares what he’s learned while creating content for TikTok as well as his most popular piece 

20:40- As host of The Headache Doctor Podcast, Dr. Taves tells Joe about the most interesting episode he has produced

23:31- Dr. Taves speaks to the audience about giving permission to get care for their migraine

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.

Today on Talking Head Pain, Joe is joined by Alan Kaplan, Founder of NDPHaware. Alan lives with New Daily Persistent Headache (NDPH) and started the organization to build community and advance research.

Join Joe and Alan as they discuss NDHP, online support groups, and the emergence of psychedelics.

Among the highlights in this episode:

01:20- Joe kicks off the episode by asking Alan Kaplan to tell the audience about New Daily Persistent Headache, NDPH, and the symptoms surrounding it

03:03- Alan shares how NDPH has affected his day-to-day life

03:54- Joe and Alan discuss the lack of information surrounding the origins of NDPH

04:39- Joe asks about the prevalence of NDPH in men

06:06- Alan talks about finding online support groups

07:18- Alan tells the story of how he decided to start NDPHaware.org

09:34- Joe and Alan discuss the emergence of psychedelics in Alan’s toolkit

11:09- Alan shares what starting a non-profit has taught him

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 today’s episode of Talking Head Pain, Joe is joined by Alicia Wolf, creator of the Instagram account, “The Dizzy Cook” and author of “The Mediterranean Migraine Diet: A Science-Based Roadmap to Control Symptoms and Transform Brain Health.”

Join Joe and Alicia in part two of their interview where they discuss the recipe for happiness, international cuisine, and meals with special meaning.

Among the highlights in this episode:

01:18- Joe kicks off part two of his interview with Alicia by asking her to share her recipe for happiness

05:42- Alicia talks about the meals and recipes that are special to her

10:56- Joe asks Alicia what region she’s traveled to has had her favorite cuisine

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.

To receive headache/migraine related resources, giveaways, and latest episode releases, text the word "Headache" to 1-845-285-1563 to sign up.

See omnystudio.com/listener for privacy information.

On today’s episode of Talking Head Pain, Joe is joined by Alicia Wolf, creator of the Instagram account, “The Dizzy Cook” and author of “The Mediterranean Migraine Diet: A Science-Based Roadmap to Control Symptoms and Transform Brain Health.”

In part 1 of their interview, Joe and Alicia discuss getting diagnosed, the impact vestibular migraine has on relationships, and Alicia’s journey to becoming The Dizzy Cook.

Among the highlights in this episode:

01:52- Alicia Wolf, The Dizzy Cook, shares with Joe the experience of her worst vestibular migraine attack

05:53- Joe asks Alicia whether health care providers ever brushed off migraine as anxiety or stress 

11:13- Alicia tells Joe about being diagnosed with vestibular migraine later in life

12:30- Joe asks Alicia about how vestibular migraine has impacted her relationships, especially with her husband

14:35- Joe and Alicia discuss the concept of her Instagram page, The Dizzy Cook

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.

To receive headache/migraine related resources, giveaways, and latest episode releases, text the word "Headache" to 1-845-285-1563 to sign up.

See omnystudio.com/listener for privacy information.

On this episode of Talking Head Pain, Joe is joined by Erica Carrasco, the founder of Achy Smile. Erica is a small business owner who creates migraine awareness apparel and merchandise, a great tool to advocate for chronic illness.

Join Joe and Erica as they discuss creating Achy Smile, Erica’s experience with physical therapy, and the pressures of trying to stick to a strict diet.

Among the highlights in this episode:

01:24- Joe kicks off the episode by asking Erica to talk about her worst migraine experience

 

03:02- Erica shares what inspired her to create Achy Smile

 

06:17- Joe and Erica discuss Erica’s journey to wellness and the process of getting in touch with her body and mind

 

13:21- Joe and Erica talk about the myth of “the perfect diet”

 

17:43- Joe and Erica share their thoughts on the relationship one can have with food

 

19:08- Erica talks about her experience being in a migraine diet Facebook group where the members were less than friendly

 

21:01- Erica tells Joe about the correlation between mental and physical pain and the journal she created to help along the way

 

 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.

To receive headache/migraine related resources, giveaways, and latest episode releases, text the word "Headache" to 1-845-285-1563 to sign up.

 

See omnystudio.com/listener for privacy information.

This week on Talking Head Pain, Joe is joined by Kathy O’Shea, author of "So Much More Than a Headache: Understanding Migraine Through Literature.” In her book, Kathy delves into the pieces of literature that capture what it’s like to live with migraine.

Join Joe and Kathy as they discuss migraine in unexpected pieces, migraine as a literary tool, and the works that represent migraine poorly.

Among the highlights in this episode:

00:51- Joe kicks off the episode by asking Kathy what her worst migraine attack was like

02:38- Kathy tells Joe about the progress she’s seen in the treatment and understanding of migraine

03:56- Kathy and Joe talk about what motivated her to research migraine in literature for her new book

05:55- Kathy shares one of the most surprising pieces of literature that features migraine

07:14- Joe and Kathy discuss the genres that lend themselves to talking about migraine and how authors use migraine as a literary device

09:36- Joe asks Kathy about the pieces of literature that represent migraine poorly and how to combat poor representation

12:40- Kathy shares about how the book helped her and how she wants the book to help others

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.

To receive headache/migraine related resources, giveaways, and latest episode releases, text the word "Headache" to 1-845-285-1563 to sign up.

See omnystudio.com/listener for privacy information.

In the second part of our look back at 2022, we hear previous guests talk about topics such as mental health, social media, and being a guest on Jeopardy while having vestibular migraine.

Among the highlights in this episode:

00:24- Dr. Nicole Rosendale talks about research looking into migraine and trauma in the LGBTQ+ community

2:49- Shruti tells Joe about the effect migraine has had on her mental health

05:30- Samuel Kelokates offers physical therapy tips for those living with migraine

06:25- Nicky Smith shares their experience being a contestant on Jeopardy while having vestibular migraine

08:19- Dr. Dawn Buse gives insight into the wellness journey for those living with migraine

12:02- CarmenRose explains why she started posting her injection days on social media

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.

To receive headache/migraine related resources, giveaways, and latest episode releases, text the word "Headache" to 1-845-285-1563 to sign up.

See omnystudio.com/listener for privacy information.

On this very special episode of Talking Head Pain, Joe walks us through a few of the standout moments from the past year of incredible conversations with health care providers, migraine patients, and chronic illness advocates. With more than 50 episodes released in 2022, this was a memorable year to be a part of the Talking Head Pain community. Thank you for being a member of this fantastic network!

Among the highlights in this episode:

01:22- Dr. Matthew Robbins tells Joe about the connection between migraine and COVID

04:52- Namira Islam Anani speaks about the importance of holding space as a chronic disease patient

07:30- Carl Cincinnato tells us where he finds “hopium” when faced with the hardships of living with migraine

09:32- Cannon Tekstar Hodge tells the story of how migraine affected her skyrocketing career

12:06- Dr. Alan Rapoport shares some insight into medication overuse headache

16:02- Jaime Sanders tells Joe about her experience being a woman of color in the migraine advocacy space

 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.

To receive headache/migraine related resources, giveaways, and latest episode releases, text the word "Headache" to 1-845-285-1563 to sign up.

See omnystudio.com/listener for privacy information.

On this episode of Talking Head Pain, Joe is joined by Emily Klein, Professor of Education at Montclair State University, a migraine patient, and activist. Emily has lived with migraine for many years, and her patient journey echoes the experiences of many. From parenting with migraine to worrying about job performance, her story is one of perseverance and strength.

Join Joe and Emily as they discuss being an educator with migraine during the pandemic, parenting with migraine, and the importance of having the right health care team in your corner.

Among the highlights in this episode:

00:59- Joe introduces his guest for today’s episode, Emily Klein, who tells us about what her worst migraine attack was like

01:57- Emily tells Joe about what migraine took away from her before she got it under control

03:17- Joe asks Emily where she found support in the difficult moments in her journey

04:20- Emily shares her current migraine status after working with a neurologist that supported her

06:36- Joe asks Emily how long it took to get to a place where the treatment options were working and helping her live life to the fullest

11:41- Emily talks about being a mother with migraine and talking to her child about having a chronic disease

13:29- Joe asks Emily about her experience being an educator with chronic disease during the pandemic and the increased conversations surrounding disabilities

17:04- Joe and Emily discuss the triggers of migraine attacks

19:26- Dr. Peter McAllister sheds some light on triggers for migraine patients

21:00- Emily gives advice to those who have not found the right treatments options yet

23:22- Dr. McAllister shares advice for navigating the wait-and-see period

25:00- Emily talks about navigating friendships with migraine

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.

To receive headache/migraine related resources, giveaways, and latest episode releases, text the word "Headache" to 1-845-285-1563 to sign up.

 

See omnystudio.com/listener for privacy information.