MyClusters - Beyond the pain

darshanramanagoudra

My name is Darshan and I suffer from one of the most painful conditions to exist - cluster headaches. So I started MyClusters - a cluster headache app and a research platform In this podcast series, we will aim to understand that pain, go beyond that pain into what cluster headaches are, what research says about it, how we can create more awareness and advocate for better so that one day cluster headaches don't have to dictate our lives.

Afleveringen

  1. 9 APR

    Dr. Rolf Fronczek - Cluster headache triggers, treatments, role of hypothalamus, sleep and more things

    Disclaimer: MyClusters is not a medical podcast and anything discussed should not be considered medical or health advice. It is for informational purposes only. All views expressed are entirely personal. Sensitive content: Living with cluster headaches is a hard reality. In this episode, we discuss anxiety, depression, suicidal thoughts and euthanasia. If you are struggling with thoughts of self harm please reach out to a medical professional or call suicide hotlines in your country: https://findahelpline.com/ https://www.iasp.info/ In this episode of MyClusters - Beyond the pain, I speak with Dr. Rolf Fronczek - Neurologist, Somnologist, Cluster headache researcher, and leading Clusterhoofdpijn Leiden at the LUMC. It is packed with different relevant topics. We speak about How Dr. Fronczek's initial research in sleep turned him towards cluster headache treatment and research Overlap in Neurology and Somnology Hypothalamus - what it is Hypothalamus - why is it difficult to study Hypothalamalus and the biological clock - role in regulating sleep and circadian rhythms Circadian rhythm disruptions in cluster headache Sleep hygiene - why it's hard with cluster headaches and small ways to improve when not in a cycle Difference between cluster headache and migraine What are triggers? And many other topics. Tune in, let us know in the comments what you think.

    53 min.

  2. 20 MRT

    The burden of cluster headaches - Dr. Mario Peres

    Cluster headache awareness day special! In the run up for awareness day on March 21st we are releasing a special episode. Disclaimer: MyClusters is not a medical podcast and anything discussed should not be considered medical or health advice. It is for informational purposes only. All views expressed are entirely personal. Sensitive content: Living with cluster headaches is a hard reality. In this episode, we discuss anxiety, depression, suicidal thoughts and euthanasia. If you are struggling with thoughts of self harm please reach out to a medical professional or call suicide hotlines in your country: https://findahelpline.com/ https://www.iasp.info/ In this episode, I speak with Dr. Mario Peres, neurologist, founder of the São Paulo Headache Center and Program Director of the Headache Medicine training for the Neurology Residency Program at Albert Einstein Hospital in São Paulo, Brazil. Dr. Peres is also the president of the International Headache society. View his full profile here: https://ihs-headache.org/people/mario-f-p-peres/ Among other things we talk about Severity and suffering of cluster headaches The importance of treatment and follow ups during remission What can we learn from the way MS is treated? Anticipatory anxiety that clusterheads feel Integrated care and therapy for cluster headaches Cluster headache medications on the WHO essentials list Why advocacy and awareness campaigns are important Let us know what you think in the comments

    55 min.

  3. 17 MRT

    Psychological co-morbidities in cluster headaches

    Disclaimer: MyClusters is not a medical podcast and anything discussed should not be considered medical or health advice. It is for informational purposes only. All views expressed are entirely personal. Sensitive content: Living with cluster headaches is a hard reality. In this episode, we discuss anxiety, depression, suicidal thoughts and euthanasia. If you are struggling with thoughts of self harm please reach out to a medical professional or call suicide hotlines in your country: https://findahelpline.com/ https://www.iasp.info/ In this episode, I spoke with Dr. Lea Jabbarian, a psychologist and scientific advisor to MyClusters. We talk about Her first encounter treating cluster headache patients in therapy Why our brains like to create distraction pain How speaking up, asking for help, whether from therapy or reaching out to community can make a big differenceRecognising signs of anxiety or depression Different options to handle mental health and how it's not a one size fits all approach What an integrated care approach would like like and many more topics Tune in, let us know what you think in the comments.

    1 u 3 m

  4. 12 MRT

    Living with cluster headaches - diagnosis journeys, community support, caregiver support and much more

    Disclaimer: MyClusters is not a medical podcast and anything discussed should not be considered medical or health advice. It is for informational purposes only. All views expressed are entirely personal. Sensitive content: Living with cluster headaches is a hard reality. In this episode, we discuss anxiety, depression, suicidal thoughts and euthanasia. If you are struggling with thoughts of self harm please reach out to a medical professional or call suicide hotlines in your country: https://findahelpline.com/ https://www.iasp.info/ Psychedelics are discussed in this podcast. We do not advocate for any non-prescription and/or illegal substances to be used. We do advocate for more research in the field of cluster headache treatments and what works in the real world. Explicit content warning: We've tried our best to limit expletives but didn't want to trade off authenticity In this episode, I speak to clusterheads from different parts around the world and compare their experiences around Diagnosis journeys Community support and how important it is Partner/family support Cluster headache awareness Different treatment journeys Anxiety, depression and mental anguish How painful cluster headaches areand many other topics We didn't plan on this being such a long conversation, but as it turns out usually it was a long one. Listen to it in parts, or the whole thing. If you want to get on our podcast, let us know in the comments. Links we spoke about TikTok: @maladequiditnon Discord community: https://discord.gg/clusterbuds

    1 u 41 m

  5. 23-12-2025

    Dr. Peter Goadsby and Dr. Carmine Belin talk about cluster headaches

    I sat down with 2 of the foremost experts on cluster headaches to get their views on where cluster headache research is, what's good, what the challenges are, and where can we go from here? More specifically we talk about Their current researchWhat are the challenges with cluster headache research? Cluster headache imaging studiesGender differences in cluster headachesDiagnosis implicationsSmoking as causation?Why cluster headaches hurt so much?What do we think of the name?  An important disclaimer : We are hosting this video for informational purposes. Even though the guests are healthcare experts, preclinical research professionals, they're not here in an official capacity.

    51 min.

Trailer

Info

My name is Darshan and I suffer from one of the most painful conditions to exist - cluster headaches. So I started MyClusters - a cluster headache app and a research platform In this podcast series, we will aim to understand that pain, go beyond that pain into what cluster headaches are, what research says about it, how we can create more awareness and advocate for better so that one day cluster headaches don't have to dictate our lives.

Informatie

  • Maker
    darshanramanagoudra
  • Jaren actief
    2025 - 2026
  • Afleveringen
    5
  • Beoordeling
    Expliciet
  • Copyright
    © darshanramanagoudra
  • Website van aflevering
    MyClusters - Beyond the pain