> Cluster Headaches > Stories

Cluster headaches and PPMS

I have had bad headaches and migraines for years. Maxalt helped to a point.  Last July (2015) I was diagnosed with Primary Progressive Multiple Sclerosis.  Initially the pain I was experiencing was thought to be MS related.  Then my Neurologist diagnosed it as Cluster Headaches.  It all starts with me getting super hot with the pain from my head to my tailbone; the room spins like I'm super drunk then as the pain recedes I become freezing cold.  I was experiencing these attacks up to 6 times a day and they lasted anywhere from 30 minutes to 2 hours each.  Since being diagnosed with cluster headaches I take Verapamil 120mg 3 x day and oxygen - the oxygen cuts the attacks down to 15 minutes in duration if I get to the oxygen as soon as they start.

World map of Cluster Headaches


Find people with Cluster Headaches through the map. Connect with them and share experiences. Join the Cluster Headaches community.