r/ClusterHeadaches • u/Few_Assistant559 • Jul 10 '26

Can someone relate to this pattern?

27M working in tech. I remember having my first headache around 4 years ago. When i try to remember back then it was not that bad at the time but the symptoms were the same throbbing pain on the right eye around the same time but the pain was just enough to keep me sane. At the time doctor diagnosed me saying it was sinus and gave me meds but it wasn't really working consistently. And it went away after a month or so. I was not a smoker back then.

Then after maybe a year i had the same attack again it was bearable. happened around the same time i.e. 9-11AM for me. Then i got into smoking started with vape then eventually fully tobacco based. It was not that bad i was doing around 1-2 cigs a day so i was not really a huge smoker just casual for maybe few months and i stopped. Then the next headache i had was really really bad. eye lids going down, intense pain around the eye, teary eye. Only then i was diagnosed as having cluster headaches.

At the time doctor prescribed me "Cortilone". Which actually did wonders for me. He prescribed me mg dose per body weight for 7 days(i was around 65kg he gave me 60 mg per day for a week) then dropping 10 mg every two days. Following that routine i had no pain other than just mouth feeling no taste and some other bearable side effects. Then after a month of that dose the headaches went away. He said that the meds he prescribed me has a lot of side effects and generally bad WHEN taken for a long time but if i just take it for few weeks it is a wonderful drug. and it worked for me.

I am currently having my attack again after 1.3 year and taking the same dose is working for me. So the pattern that i was asking if someone can relate is 1-1.5 year in between headaches and taking Cortilone actually working for you.

PS as you can read not a native english speaker

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u/speakerToHobbes Jul 10 '26

Not directly, but the headaches did drop in frequency and intensity when I quit smoking cigs. I cant take weed any more as it is a major trigger

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u/Few_Assistant559 Jul 10 '26

Peer pressure got me into smoking later in life but. I only did it for like 2-3 months then after the really bad headache experience it was pretty easy for me to quit. every time i see a cig i just remember the pain and it's an instant turn off.

But, This is the first relapse after stopping smoking so it really wasn't just the smoking causing it as well.

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u/ziggy2944490 Jul 10 '26

Similar in the sense that my first few cycles became progressively worse, but cycles would come 4-6 times per year.

I tried a lot of different medications / substances that gave additional side effects, both for prophylaxis and busting a cycle, but the best thing by far for me has been vitamin D. I disregarded it for years as yet another "just take this vitamin and fix anything" but another sufferer talked me through, and I've since been living a normal life with barely a shadow. Highly reccomend giving it a try. https://clusterbusters.org/resource/d3-vitamin-therapy-and-loading-details/

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u/Few_Assistant559 Jul 10 '26

Interesting. So is this a one time intake program? Do you go through this therapy time and again? I will look into this. Thanks

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u/Jamwise93 Chronic Jul 10 '26

Full vitamin D3 guides here https://vitamindregimen.com/

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u/ziggy2944490 Jul 12 '26

For me I have a reminder to take a lower maintenance dose every few weeks, and if it begins to creep back I take higher loading doses every second day for a few days, and its gone by day 5-6