Cluster Headache Awareness and Advocacy | Webinar

Content warning: This webinar contains discussion surrounding depression and suicide.

In honor of Cluster Headache Awareness Day 2022, we invited Dr. Mark Burish and patient advocate Jason Zenobia to shine a light on this headache disorder. Dr. Burish discussed the cluster headache diagnosis, symptoms and treatment while Jason shared his own diagnosis journey and how others with cluster can advocate for themselves.

The Ask the Expert series webinars are supported in part by sponsorship support of Biohaven, Amgen, Lilly, Teva, Allergan and Lundbeck.

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[heidijean]

My husband suffers from cluster headaches it is the scariest thing I have ever seen. He takes emgality twice a month And nertec at the 1st sign of the 1st attack once per day. He is up to 5 times a day and the attacks are getting worse. I have found him on our bathroom floor banging his legs on the wall holding his eye and head. It feels like someone crushing my heart bc I cant do anything to help. I can only make my presence known by sitting near him. I cant touch him or it gets worse. He hasn't gone 1 month in the past 2 years without one. They seem to start around 3pm and last till 1am. Approximately 15min to 45 min each one. We are up to 5 times a day right now. I suffer with Arnold chiari and I'd never wish anyone to have head pain, I understand what he's going through, but at the same time I dont. He is a God fearing man, always glass half full, today he told me for the first time he doesnt think that way. My heart breaks for those going through this. Its not fair. I pray every night it stops. That he'll be one of the people that get a couple of months, years or even a week without one. I've read that oxygen works, but his neurologist said it won't help. We are looking for a second opinion but scared . I pray they can heal all "headache" sufferers . This has been a hard road and an eye opening experience. I pray everyone that suffers will have a cure that works.

[sbolfing]

I tried the subQ injection - it hurt almost as much as the cluster headache. I started having chronic migraine about the same time as my fist cluster (cluster headaches ALWAYS lead to migraines; migraines do not always lead to clusters). My cluster headaches hit at ~2AM and again at ~2PM, they last for 1~2 weeks then will usually stop for months. I believe my migraine treatments (verapamil, topiramate, gabapentin, Botox, Ajovy, and more) have diminished the CH attacks. All of this started in August 2013 (57 at the time). I haven't had another CH in >1 year - but I never know.
The best way I can describe it - it felt like someone was banging on my left temple with a ball-peen hammer.