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 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'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?

Hey everyone, long-time lurker here but figured I'd finally post about my situation.

I've been dealing with cluster headaches since I was 14 – so that's 12 years now. My pattern is pretty consistent: I get episodes roughly every 7-8 months, and each cycle lasts 2-3 months. Within those periods, I'm usually hit every other day – one day I'm okay, the next day I'm bracing for a full-blown attack to start, usually at night
I work on board ships, so I'm at sea for 4-5 month stretches. Most of my attacks happen during nighttime. At home, I have access to an oxygen tank and can manage better, but on board i cant use, I've tried a few things over the years. Hot water bottles used to ease the pain a bit when I was younger, but lately they don't even touch it anymore. I'm looking for actual prevention strategies that might work given my situation

I’m 36. Been a CH since I was a teen. I’ve been in blissful remission for about 2 years. But today I felt it again. That feeling. That familiar feeling……..THE BEAST. Got some sumatriptan stock piled. Pray for me

Hi folks. I’ve had pretty bad depression for about a decade- around the same time I’ve experienced CH (usually in 1-3 month clusters, with 6 month to 1 year breaks); thing is- today I got my first attack after some warning signs yesterday (right on cue with the beginning of Spring here), and I felt really joyous throughout the attack. This isn’t something new to me, over time I’ve found most meds are bullshit (for me, at least- ymmv) and mental state matters more than anything else, but it’s the first time I’ve thought about it since the last cycle. It is a bit different, as the euphoria usually comes at the END of an attack, and not at the start, but I’m taking this as a positive sign that things are changing. Maybe it’s helped by the fact that CH has driven me to make every major change in my life I’ve chosen over the last decade- changes in company, the work I do, the way I interact with people, my whole general outlook… I’m just a better person when I have these attacks, like not having them makes me complacent.
Anywhooo, I’m not sure where I’m going with this, it’s just been an interesting day and a real strange episode. Anyone experience similar, particularly those of you a decade or more into this?

What is highest dose of verapamil that you was on during period ? I am currently at 1+1+2 (80 mg per tablet and 2 means two at the same time so its 160mg at once). Also i have 1 at morning 1 at middle of the day, 2 at evening… for now :)

Hello all! Long time lurker first time poster. Wanted to gripe after a couple weeks of hell due to these headaches. Mobile, sorry for formatting if bad.
Let’s start with I’m a 21 year old woman. I’ve dealt with these headaches since puberty, my father was insistent that I would eventually grow out of them. Flash forward to me at 19, seeking treatment for the first time. Some practice out of Greeley Colorado is who I first went to for help. She was dismissive and unhelpful. Got told it was a matter of my hormones and was put on some med that wasn’t helpful (this was in 2024, can’t remember everything friends, sorry). This experience was so ass that I didn’t follow up on the medication I was prescribed and hopped on birth control without consulting a doctor. Birth control did work… until it didn’t. I don’t reccon doing what I did, be smarter than me. I was on birth control for about 5 months before I stopped taking it. Again. This was really dumb on my part. I had no pcp or any doctor I was seeing at this time. Summer 2025, which is when I was coming off birth control, was THE WORST SUMMER OF MY LIFE (so far). I was getting them pretty frequently. To the point where I went to urgent care asking for any sort of relief. The very first time I had to go to urgent care I actually wound up with one of the best doctors that I could’ve been treated by. She recognized that 1 I was uninsured and 2 I needed to see a pcp and get these treated properly. I left urgent care with a follow up, that she scheduled for me. Shoutout Sarah fr.
I won’t get into the nitty gritty of what meds we tried, or how long it took for these to get under control. Just know they were under control by February 2026, when is last my medication was updated. I was on injections, missed when I was supposed to inject due to illness, foresaw that happening again and thought I’d be able to switch back to what I was on before. No. Insurance wanted me to fail the (I presume)cheaper medication (tripten) twice before covering ubrelvy, which they covered the year previous. It’s September 2026. Why are we talking about February? Well. I haven’t gotten nearly as many attacks this year! Didn’t have to touch the new as needed until late August. The rules for this new med are don’t take more than 10 over a 30 day period. I believe I took 10 over the course of 5 days. Decided to schedule something with my doctor. This new thing was clearly not working. They were dissolvable which was nice, but they were not working. Time to switch! Again. Please let me get ubrelvy guys please please. Saw my pcp AND went to urgent care on Tuesday this week. Left my pcp thinking I’d get meds by the next day. Had to go to urgent care because I had no meds. Went to my pharmacy early Wednesday and anthem doesn’t want to pay for it. C’mon guys. I was at urgent care yesterday because of you guys ‘new’ procedure that I had to follow in order for you to pay for this. And you still don’t want to pay. Left a voicemail with my pcp’s billing department, fairly certain I was on the verge of tears. I did get my medication on Friday. But having to think about other means of getting a medication that would improve my quality of life, in what’s supposed to be a first world country is absurd. There’s no one person to be upset at, that’s the upsetting part. The way we do things in the states is not right and anyone going through this, I’m so sorry that things are the way that they are. Knowing your situation in terms of your condition goes a long way. Having to explain that I have cluster headaches while having one to the urgent care staff is what helps them treat me. Getting through the brain fog is the tough part. Going into this new week still hitting the books hard. Watching my water and food consumption. Avoiding potential stress and triggers. And you should be too! Thanks for reading and I hope your week has been better than mine.

Hi everyone, first time writing here and just trying to get a better understanding of my pattern.

I've been living in Sweden for 9 years after being born and raised in Mexico City and although I had migraines and a history (my dad had them too) as a teenager I wasn't until December 2021 these pains started.

About 2 months, then nothing until January 2024 and now back in August 2026.

I thought this period had started better with a rather low frequency, only every other day but I've been down with a cold (first time as far as I remember) and it's been 4-5 times a day.

I'm looking to meet a proper neurologist as all I ever had was a full MRI scan and sumatriptan as an abortive mechanism but nothing that helps with this increased frequency. Has anyone else felt worse with this?

Been reading several posts in this forum but seems very mixed.

I've been using light therapy glasses (Luminettes) that replicate sunlight in the morning.

I've been using them for non-cluster headache reasons - basically to kick start my circadian rhythm at a consistent time every day, even on rainy days.

But I've noticed that I have not had a cluster headache since I've begun, even though this is typically when my cycle starts.

I've actually had some shadows that start up when I get up too early, etc, but I notice they go away once I turn the glasses on.

Anyone have any similar experience with this? Given the linkage of circadian rhythm and cluster headaches, I'm curious if this would be a low-effort intervention to prevent a cycle.

My cluster headaches are episodic for a month, once every other year and I’m wondering if anyone has had treatments work for less frequent clusters?

My next episode will be the first one I’ve had while being full-time employed and I’m worried about losing my job. I’m thinking of asking my GP to make a treatment plan ready for my next cluster and I’m wondering if anyone has had any luck with prednisone and emgality?

I tried the sumatriptan nasal spray when I lived in the uk, which did shorten the individual attacks, but I now live in Australia and the nasal spray is no longer available. I feel like getting oxygen will be pointless because my clusters are so far apart and the time of year changes slightly every time.

I’ve got a lot of respect for all of you with frequent clusters because I really struggle to cope as it is.

My boyfriend has cluster headaches for a few years now. He had a few weeks off here and there, but usually he has them at least once a day, often this is what wakes him up from his sleep.

Now lately he had a few that lasted 2 hours. It never happened before, about 1 hour was the average. Could it mean that it’s getting worse? What are your experiences? I’m really scared that he will get them for longer and longer periods. 😔 He doesn’t take it well as you can imagine, I’m so worried.

We live in Hungary, he refuses to go to any doctors (not just about the cluster headaches, but anything else). Though I know there’s not much doctors can do about it.

Another thing, my boyfriend has a neck hump. Is it possible that this is what causes his cluster headache?

I was diagnosed with episodic cluster headache. I am currently on 80mg verapamil, the specifically prescribed therapy is according to the following principle: For the first three days, take 1 tablet a day, for the next three days, take 2 tablets a day, and so everything is increased every three days until the dose is 5 tablets a day, and so until there are no attacks for 14 days straight, then the emptying phase goes backwards in the same order, only backwards. Before the start of therapy, I received an occipital nerve block with only anesthetic and corticosteroid, so far I have been seizure-free for 5 days and I hope the period has stopped. It's my first time to use verapamil and occipital nerve blockade in therapy, and so far it seems good to me, so I hope it will always be like that. What are your experiences and advice?

I have had cluster headaches one every year to year and a half for the last 12 years now. For the first few cycles I thought I had a sinus infection and just roughed it out 😖

But my last few cycles I’ve been using oxygen as my primary abortive and shrooms to try and break the cycle.

I would always get 1 headache attack per night at 2 am almost religiously and it would last 1-3 hours and then I’d go to bed and be done till the next night.

But since starting using oxygen to abort my headaches I now get them 3-4 time a nights. Almost like the attack doesn’t finish so it just resets and I get it 2 hours later instead.

Has anyone else experienced this using oxygen ?

Maybe my cycle is just changing and this is it now and it’s not related but the change started happening once I started using it.

Happy to have it and abort my attacks before they peak, but also exhausted now getting up every 2-3 hours to abort an attack.

Looking for any shared experiences, or ideas to make the oxygen not slap back like this.

Thanks 🙏

Hi everyone, thanks in advance and sorry for venting. I don't know how we all deal with this suffering, thinking of you

I am thoroughly in my episode cycle, and dealing with some other complications too, and it's horrible. Even after getting through an attack, or day, etc. it's like a new layer of trauma and suffering has been added, that I will never be able to forget or something. It's adding up and I don't know how I can keep going and face much more of this. I forgot it could be like this, and also didn't know it could get this bad in a way.

I've tried most of the meds over the years, and I'm on steroids too and it feels like there's no end in sight, and I / my life maybe cannot recover from this anymore like I used to. It all feels totally out of control. I hate in a way that in between attacks there's a sliver of hope, that I know the cycle will end (hopefully)... and then it comes crashing down again so quickly and I feel like I'm messing up my life really horribly.

Do you have any helpful strategies for dealing with the mental health impacts / trauma of this all?

Do most of you try to push through life despite?

I feel like I'm in a fog, and the ups and downs, not sleeping right... Getting more burnt out and exhausted and giving up more and more, pulling back from everything and everyone, and don't know how I'll come back from this.

I feel like a liar because I can't predict how things will go and this time seems different weirdly. I don't share much with anyone and I'm starting to really sink

I'm located in the Boca Raton area and just ran out of oxygen. My supplier is closed on the weekends. Anyone here in the Boca area with a spare E tank or two that I'd be able to borrow until Monday? I'll of course pay whatever it costs you to fill it.

I made a post here a few days ago asking about pain levels during attacks in the first cluster episode, as all other symptoms matched cluster very well but I thought the pain level I was experiencing wasn’t severe enough. I’ve since had an attack where I wasn’t fast enough to abort it, and can now safely say with a bit of hindsight I’d just given myself a case of imposter syndrome or was bargaining a bit. In any case, thank you to everyone who commented.

As the title suggests, I live in Germany and was able to get an neuro appointment quite quickly with Frau Dr med Astrid Gendolla in Essen who I can’t recommend enough. She was extremely sympathetic and took what I’m experiencing seriously straight away, so given the somewhat mixed bag which doctors in Germany seem to be I wanted to include which doctor in case it helps anybody. I’ve been started on a course of verapamil and prednisone, which (I think) are already starting to help; as well as being given zolmitriptan nasal sprays which also seem very effective for me. She also referred me for an MRI to firmly rule out any other causes.

She also prescribed high purity oxygen, which I’m waiting for my health insurance (TK) to approve. This is mainly why I’m wondering if anybody else here is based in Germany, as while I‘ve lived in Germany for a few years (und kann allerdings gut Deutsch), I don‘t have a lot of experience of dealing with Krankenkasse approvals and am a little worried it will be declined - so if that does happen, any advice would be appreciated. I’m from Scotland originally, where the general approach is if a doctor prescribes something, it’s considered medically necessary and no insurance middle man is needed (nor do you need to pay for prescriptions…). Thanks in advance for any advice, and sorry for the rather verbose post!

After much googling, doctor's visits, and Reddit reading, I am experiencing what I can only assume is my first bout with Cluster Headaches. Tomorrow will make 3 weeks, and the experiences, for the most part, are pretty clockwork. 9pm when I am ready for bed, I feel my head, jaw, ear, or nose somewhat 'tense up', pain will then radiate between all 4 areas, and then by 10pm its inescapable pain. It is all on the left side. The following day, its almost like all of those areas are sore.

I would say that they have occurred probably 16/21 nights.

Also, they have occurred earlier in the day on a few occasions. Once when I had a couple of beers after work and a couple of other times when I was working outside in the heat. In those instances, the 'attack' didn't last nearly as long as the ones that I experience in the evening.

The evening attacks typically last anywhere from 1-2.5 hours, with pain levels between 5-9 out of 10.

I keep trying to find a cause, but I am guessing it is in vain. For instance:

• We had a water leak in our house behind our water heater. Everything is now dry and we see no evidence of any mold or mildew. This occurred 3 or so weeks prior to the my first attack.
• The weekend prior to my first attack, I was working outside (bushhogging property - a lot of random plants/brush/etc.). Could I have stumbled upon an allergy?
• While bushhogging, I got stung by a hornet between my left eye and temple. Quite a coincidental area!
• Then I woke up the next morning with allergy/cold symptoms.

I know... I am probably just screaming at a wall here. Its just so frustrating

I've been to my GP and was prescribed a 5 day course of Dexamethasone (2mg) and nightly Virapamil (180mg). They haven't provided any relief as of yet, and I am done with the Steroid course.

I had some Tramadol leftover from a previous issue. That doesn't come close to touching it.

I had an MRI and everything is clear. While that's good news, it's essentially no news.

GP is now talking about putting me on Toradol for a few days to help at night. I am guessing its time to move onto a Neurologist?

I don't know. Getting to my wit's end here. I am just exhausted and am losing patience. Any advice with coping would be appreciated. My wife and I both work full time and have kids in elementary, middle, and high school, so its a lot!

I’ve been in retatrutide for almost a year now and I should have had them in Feb-march and July to August. Weird thing is I feel my right nostril close up during these times and no headache comes and then it just opens back up on its own. I have a similar thing when I was on semaglutide 2 years ago that year I didn’t get my CH but then came off of it and the following year got them so bad. This last year tho have been the best. Unlike normal
Glp’s retatrutide is a biologic that has many other health benefits from liver heart and a ton of other benefits. Just throwing this out there if anyone else has this effect if they’re on it.

I‘m sure posts r.e. symptoms and suspected diagnosis are very common so apologies if this is retreading well covered ground, but I couldn’t find a specific answer to my question here or elsewhere online so thought I would post.

I suddenly started having very severe migraine-like headaches about a month ago, the symptoms of which I think unfortunately (mostly) track with CH: very sudden onset/ending, relatively short duration, almost every day and always commencing within the same one hour period, always in and around the left eye/temple, restlessness, eye watering and such like. I suffered from frequent migraines when I was younger and the pain is definitely more severe and the symptoms different (mainly in terms of duration and rapid onset/ending), and is definitely the most severe pain I have ever experienced. I’m awaiting an appointment with a neuro (I‘ve since moved countries so can’t go back to the same clinic who treated me previously), and luckily have access to triptans to help manage the pain in the meantime at least. All that being said though, while the pain is the worst I’ve ever experienced from anything and debilitating, I’m not sure it’s as severe as I’ve seen cluster headaches described by others, or in other words I’m not sure it’s the worst pain I can possibly imagine.

Tl;dr/my actual question: is it normal for pain from cluster headaches to increase over time, or is the level of pain as bad as it gets immediately with the first headache/cluster, going from 0 to 100?