I’ve been suffering for the past month or so from a particularly horrible cluster headache cycle and feel completely and utterly drained - emotionally, physically, and mentally. Feeling pretty alone and hopeless.
I was diagnosed with episodic cluster headaches my sophomore year in college - little over five years ago - after I experienced a headache I thought would kill me. Ever since then, I have struggled with managing them. Typically once or twice a year I get a cycle, and it lasts for 3-6 weeks. This year, I had a cycle in January and again, most recently, for most of September and all of October. My cycles don’t seem to be linked to any season - I’ve gotten them at all times of the year, in all different places of the globe.
The current cycle brings headaches at all times of day - when I sleep and sometimes randomly during the day, like earlier today. I’m on a lot of drugs now which leave me feeling lethargic, dizzy, tired, and sluggish - sumatriptan as needed (100mg pill), verapamil (x6), prednisone (a massive taper), depakote (x2). I also take CBD oil and some “preventatives” such as melatonin, vitamin b2, and magnesium, which I read could be helpful. I’ve also tried acupuncture and other “interventions” as well.
The verapamil appeared to work earlier in January, but it isn’t working now, despite an increase in dosage (I now take 6 pills a day vs 2). The sumatriptan can help me get through a night, usually, but I’m limited in how many I have which is a constant source of stress. It also seems to never work fast enough.. As for the other medications listed - Nothing else I take seems to work. Not as far as I can tell, anyways.
I’m struggling to deal with the pain. It’s impacting every aspect of my personal and professional life, and I don’t know what treatment I should go to next. Just would be grateful for a friend and some advice.
-Blair