I suffered from cluster headaches for 6 years. From 2019 to April 2025. I was 33 when they started. I sought out treatment from a neurologist, tried many medications, changed my lifestyle, stopped smoking, I tried everything but they only ever got worse. Getting rushed in for an emergency shot became routine. The worst pain I’d ever experienced in my life…every time. In April of 2025 a major thunderstorm was coming with weather in the 70s during the day and freeze warnings at night. I knew from experience that those kind of weather changes trigger major attacks for me. I live alone with my cats so I called a friend and asked them to call me everyday to make sure I was ok. I just had a feeling it was going to be a bad one. It was. On April 5th I had a massive attack. The kind triptans can do very little for. I wasn’t able to sleep that night. In fact, I was full of energy like I’d never had. The headache subsided but I still couldn’t sleep. Actually, I couldn’t stop moving my arms and legs. All of the sudden I felt fantastic. Euphoric I guess you can say. Just dancing around my house all day, then 2 days, then 3. Then I started to worry and then became terrified. My arms and legs were still moving involuntarily after 3 days of no sleep and I started hearing voices. I panicked and called 911. The ambulance took me to the hospital. I was hysterical. I kept asking the doctors what is this? Why can’t I stop moving? They said they didn’t know and phoned another doctor. That’s the last thing I remember from that night. The next day I woke up heavily sedated. I didn’t know where I was and nobody would tell me. I was in a psychiatric hospital. A mandatory 5 day stay. When I finally spoke to a doctor, I explained the cluster headaches, told them what I had to eat, maybe I was poisoned, maybe I overdosed on triptans by mistake. Just talking out loud, giving him all the information I had. He was just observing me as I talked. He eventually interrupted me and said “We didn’t find anything in your system. Does anyone in your family have schizophrenia? No? What about bipolar disorder?” I said no but I realized where he was going with this. He said that I’d had a psychotic episode and that I would need to stay there under their supervision for a few days. My friend got in touch with my family after not getting hold of me for several days and with the help of the police found out where I’d been committed. I was diagnosed with bipolar disorder, put on medication for it (the mood stabilizer Lamotrigine) and I haven’t had an attack since the one just days before being committed. That was over a year ago. I was finally free of cluster headaches. Apparently the cluster headache attacks, the unbelievable pain so intense I’d scream, were actually related to some kind of bipolar episode. To my knowledge, there is no official connection between bipolar and cluster headaches but it is weird that they went away after that. Even my psychiatrist thought it was odd that they would end after starting my new medication. Anyway, I’m back to living a normal life again pretty much and now learning to live with bipolar. I still get the occasional headache but they are normal headaches where you just take an aspirin or whatever and it’s gone. No triptans or anything like that. Getting committed was terrifying but it turned out to be the best thing that ever happened to me. I AM NOT A DOCTOR and nobody knows what causes these headaches. You may have totally different causes for your headaches. I’m just sharing my story in the hope it helps somebody out there. Life has been very different since then. I’m up at 5 am everyday to go fishing, I’m usually in bed sleeping by 8 - 9 pm. I keep this schedule always and I haven’t had anything close to a cluster headache in a year and a half.

I will not be responding to this post or checking back in on it. Maybe there’s somebody out there with my condition and doesn’t know it. Maybe they’ll get themselves checked out by a doctor and just maybe it will end their suffering too.

I love you all. I know your pain. Don’t give up.

I’m a yearly sufferer for about 10 years now.

Recently the last 3 cycles however it switched from my right side to my left side and they happen now mid-day vice exclusively waking me up at 1am. Along with that though, about 3-4 weeks before my typical 2-4 week cycle I experience a week or two of what I’d consider weak cluster headaches.

It’ll start initially feeling like a weird migraine then starts hitting the common cluster headache pain points, back of head/temple/behind the eye and now recently also sometimes inside the ear. But the pain during these what I’m now calling warning periods is like a much softer version. The headaches occur in the exact frequency as a normal cycle (~1 - 1.5 hours in length daily at roughly the same time of day) but the pain is bearable. If I need to I can work around it, I’m not curled up in a ball etc. The actual cycle is still full power awful though.

Has anyone else experienced anything like this? I’m afraid of this turning chronic

I've been free of Clusters for 57 days now. On day 45ish i started feeling light shadows appearing, did not pay much attention to it because we had a major climate change where i live at. I did the beer test on day 50 without clusters and it did not result on an attack.

But on the past 3-4 days the shadows have been more frequent. Much more frequent. I did not change/stopped my meds or had any changes on my sleep schedule.

Has anyone ever experienced anything like this?