Cluster Headache Awareness and Advocacy | AMF Webinar

For people who live with cluster headache, the unfortunate reality is that it may be years until they receive the diagnosis and care they desperately need.

During this AMF educational webinar, Clusterbusters President Eileen Brewer and AMF advocate Gillean Dean discussed the disabling traits of cluster headache, its symptoms and tips for self advocacy. Gillean also bravely shared her story and experiences of living with this disease—including her long road to an accurate diagnosis and how cluster headache stole her career.

Helpful resources mentioned in the webinar:

Join the community:

[ponzo]

30:10 yes! I grew mushrooms in 2017 and went into a five year remission, the first and only remission lasting more than one year and skipping a year only happened 3 times in 38 years. There is something to it i believe.

[huyton]

Really enjoyed this webinar! As someone who has suffered from migraines for the past 42 years this was a great insight into the issue. Hope to see more of these webinars in the future!

[JrellNY]

Thank you for this. I am in my cluster headache period, and it is affecting me working and my lifestyle even going to the store or shopping or doing simple things.

[ponzo]

OMG! 9 years to be diagnosed makes me want to cry 😭 I remember being treated like a drug seeker for four years before seeing a neurologist and getting a diagnosis was so validating and hopeful.

[annkavanagh]

My son is suffering with cluster headaches and he couldn't take any more he has about 8 attacks a day my heart is just broken seeing him in this pain he is waiting for oxygen and the injection!

[ponzo]

I bought a an electric bug zapper because of the mosquitos here in Florida and when a moth hits it if I get a whiff it can trigger a cluster headache but only when im in a cycle. An interesting thing i noticed is when I lived up north in Indiana my cycles were almost always in the fall but down here in Florida they hit me during summer.

[reginablaker]

One more thing…don’t ever let a Dr. dismiss you!! Go to a specialist if you can!! I had an ER Dr. once tell me that women don’t get clusters!! After I told him what he could do with himself and that he must know much more than my neurologist who happened to be the Chief of Neurology at the same hospital…he sighed and then said that I must be a textbook case…whatever he was trying to imply with ghat remark. Needless to say, I never had another problem with him again.

[JrellNY]

Btw, you can use some of the videos i have on my channel of me having a cluster, in the future. They are there for awareness

[patsyizuorgu]

😢😢😢😢in cycle and the misery is un matched, I have given birth 5 times and this is truly unimaginable pain😢😢😢

[mazie]

My Nero said headache should not be after the word clusters. Ppl.hear headache and think regular headaches
My Nero calls them nerological disorder
He said they are so complex that a cure is slim.

[maciejziara]

Plz help. I need oxygen and imigram. Plz

[DonDahlen]

Lamotrigine

I’ve had cluster headaches for more than seven years now been on many medications that do not work
But I’ve been using a medication called lamotrigine for few years now and has helped immensely please talk to your doctor to try it.

[kimfreeman]

Would sound frequency help relieve cluster headaches?