Hi all.
Im a newbie here but not a newbie to cluster headache.
I am 33 and have been suffering from the past 15 years with episodic cluster headache. However, i was only correctly diagnosed 4 years ago. I had the longest remission since then, until april 2022 when they came back.
My neurologist started me on verapamil and short 10 day course of steroid 40mg. I was absolutely pain free while i was on steroid. But i was advised to stop them without tapper, and as soon as i did, i started to get worse attacks and persistent shadows. I wasnt aware of shadows until this cycle, since i never had them before. I was still on low dose of verapamil. So was started on steroid again with gradual taper over 20 days, meanwhile gradual titration of verpamil until i reached 40-120-120.
After stopping steroids, i still had some bad attacks but it settled. Meanwhile, effect of verapamil kicked in and i started to get less and less attacks until i went 1 week without attacks. Sadly, because of some insurance issues, i ran out of verapamil for 2 days and as soon as i started them again, pain became worse. About 4-5 attacks per day, only partailly responding to oxygen amd persistent debilitating shadows.
Now, 2 months into my cycle and 1 month after stopping steroid, the neurologist has again started me on short course of steroid 40 mg for 7 days. I feel better already but my greatest fear and anxiety now is that all the treatments has just made the cycle worse and so prolonged?
I never took all these treatments before because i was never correctly diagnosed. 4 years ago, i only used oxyegn as an abortive.but my cycle always ended on its own in 4-6 weeks.
I feel all the preventive have made it so worse. And my greatest fear is that i will never be able to get off them and this feeling makes me so depressed and suicidal.
Please share in your thoughts and advice.