In this episode, I speak with Christine, a chronic clusterhead from Norway, and an advocate, spreading awareness and supporting other sufferers.

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/

Follow Christine at

- https://www.instagram.com/klasepodden.123/

- https://open.spotify.com/show/5N1C31lRT9HOo0H3hk7eIZ?si=0bcf32bbbd084921

Clusterbuds support group

- https://discord.gg/clusterbuds

In this episode, we speak about

• Her first attack and diagnosis journey
• Different treatments she's tried over the years
• Her current treatment protocol
• Community support and how it can help
• Difference between migraines and cluster headaches
• Psychological burden, therapy and how to deal with facets of CH on top of the attacks
• How depression can creep in and lead to harmful thoughts
• How her family, partner supports her

And many more topics

Let us know in the comments what you think.

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.

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

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 difference
• Recognising 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.

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 are
• and 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

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 research
• What are the challenges with cluster headache research?
• Cluster headache imaging studies
• Gender differences in cluster headaches
• Diagnosis implications
• Smoking 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.