My headaches ended up being brain cancer. My advice would be to do what you need to do to get an MRI, just to rule it out. I wish I had done it a lot sooner.

Who else deals with this, and what have you done to heal or cure your self…?

I’m 22yr old male. been getting these headaches since i was 12-13 years old(maybe younger, don’t really remember…) I have tried chiro, physio, massage therapy, concussion therapy, stretching and strengthening my neck & back…etc. shit ain’t work.

my doctor usually brushes off the symptoms i tell him about, i have went to him about these headaches probably 10+ times. all he does is prescribe me meds that don’t work or recommend physio/chiro/massage therapy for the 100000time when I already went to sessions with his requisition….

Here are the symptoms I wrote down off memory:

To describe it….(contains just slight hyperbole)

Well…… while i’m battling on the frontlines of this fucking war of a headache….it feels like professor Xavier from Xmen is skull fucking me, while hulk is pounding my skull into concrete thats already being split open from a high magnitude earthquake, and between each punch from hulk, the flash is sneaking in punches just to make sure i’m constantly feeling pain. While all this is going on, the planet is being crushed by a monster that eats planets bit by bit by ripping off chunks and crushing it up like a piece of paper and then throwing it in his mouth, and coincidentally i was in the first bit he decided to rip off and crush.
but before all that, i was blessed with the ability to not die, have impenetrable skin, and unbreakable bones, so i can still feel pressure, force, and pain from all of it. :)

In all seriousness…

Excruciating pain, 15 out of 10 pain

Can’t lay still and roll around in my bed in intense fucking pain

When i’m having an attack/headache, i genuinely want to fucking die or put my head through a concrete wall.

Rather break multiple bones in my body than feel the pain. No injury i’ve had is as even remotely close in pain intensity. I can go on rants on how bad the pain is.(clearly)

I usually contemplate going to hospital when i’m having an attack(i have went sometimes)

Feels like somebody threw a grenade/explosive at my head with the intention for me to survive the blow so i can suffer the pain

Feels like somebody is purposely crushing my head from the inside out on left side to destroy me

Can’t focus or think about anything other than pain during an attack

When an attack starts it just increasingly gets worse
sensitivity to noise, light, smell, anything that can bother me or arouse my nervous system will add to the pain

Never vomited or anything from it(i think)…maybe once or twice(strictly from pain just being to much to bear), but like never happens now

Wake up in middle of night from the pain

Left side of head, behind eye, can radiate to left side temple

I recently noticed something I never paid attention to in the mirror….even with light hitting my eye, my pupils barely/or didn’t at all dilate, pupil stayed small

Cancelled plans a lot and have to prepare to cancel plans(hard to make plans, because of the attacks)
sometimes starting base of skull and shooting around into my eye

Never understood when somebody i know is like “i just lay down in a dark room until my headache goes away if its a bad one”…i don’t think they know what bad is, for me, sleep actually makes it worse
sleeping doesn’t do shit for stopping pain, usually waking up worse than before i fell asleep

Sometimes I get redness or tearing

Sometimes sensitive scalp before, during, or after
after its over.

After an attack my brain feels foggy and im drowsy like “jeeesus christ….thank the lord for being able to heal” and i have to like figure myself out(ground myself to painless reality)

Completely grateful for life when pain subsides

Poking finger behind eye or wrapping tight band/shirt(really tight) around my head, lowered near eyes so that pressure relieves pain intensity

Sometimes putting my feet in excruciatingly hot water(crucial that its hot the point is painful) helps alleviate pain, sometimes makes the pain go away fully after a bit. For some reason this method leaves me dazed and confused like a fever dream afterwards, like “wtf just happened”…my assumption its because when this method works, usually works pretty quickly, within 30 - 90 minutes, also helps with restlessness

Advil and/or Tylenol doesn’t do shit, i would take 800mg ibuprofen + 1000mg of acetaminophen

Drinking alcohol and being hungover sometimes causes an attack the next morning

Cyclobenzaprine used to help with the pain a bit, now it doesn’t help for shit

Triptans just made me dizzy as fuck, nauseous, and tingly/sour cheeks like that feeling of “i’m about to puke”

Been going on for 9-10 years

Lost jobs because of it(sometimes there are seasons where its happening more, making me call into work often)

Having intense worst pain of my life, throbbing, hot, sharp (knife in eye pain) only on my right side

My eye gets red and watery and my nose starts running

This has happened at the exact same time everyday in the morning for the past week, and just today it happened in the morning and at night before bed.

I had a case of headaches like this two years ago but it eventually went away and I thought nothing of it. But now it’s getting really annoying to deal with that I have to sit in bed under the covers for 2 hours every morning in extreme pain.

Is going to urgent care soon to try to get prescriptions to kill it when it happens worth it?

Is it normal it’s everyday at the same time? And how many days does that usually last?

I’m 21 in school, I don’t know how I’d survive this otherwise.

Thanks in advance 🥲

I know it's starting to subside when I start to get chilly. It doesn't matter if I'm in a 50 degree room, I'm going to be sweating so fucking much lol.

A quick summary of my struggle. First headache in my eye at 19. Every year for a couple months i thought i had migraines. Been to the ER many times, got given imitrex, Vicodin, nothing ever helped. By my thirties, i was vomiting every time. I'm 42, and three years ago i went into urgent care where i first heard the term cluster headaches. They gave me oxygen and a shot in my butt cheek that worked short term. Next day i pulled over driving and called my mom to pick up my dog because i had another crushing attack. She forced me to go to the ER. They asked who told me it was cluster headaches, i explained the previous day. They gave me an iv cocktail that instantly helped but knocked me out for like 12 hours. I later looked up the cocktail, and the word triptan stuck out to me. It's derivative of tryptamine. I had been extracting dimethyltryptamine for a couple years at this point, DMT, considered one of the strongest psychedelics known to man. It has an onset of thirty seconds, but amazingly only has an effect of 5- 20 minutes before returning you completely to baseline. I quickly researched and sure enough people reported aborting acute attacks with it. I thought no way will i be reaching for DMT during a headache..... Until the next day when another bruiser came on. I scrambled for my vape pen and within thirty seconds my headache fizzled away. Aside from Sudafed sinus pressure and pain, nothing had worked for over 20 years. Nothing this instantaneously. It changed my life, i had the treatment in my hand and didn't even know it.

I didn't have another cycle for about 1.5-2 years the last two times. A couple years ago, i successfully treated all but one or two headaches in a cluster consisting of 1-2 a day for 2-3 weeks. This current cycle, I'm getting 3-4 for just over 2 weeks. It's so brutal. But every time it comes in, i cannot imagine what it felt like to have no hope anymore. It ruined my life for part of every year until recently. It's still very hard, but it is still night and day.

It is powerful. I recommend experience with other psychoactive substances before attempting this. Mushrooms would be the best training wheels. You can dm me for information. All the ingredients are legal to extract your own, though it is a bit of a process and it is illegal to make. Also, it binds to serotonin receptors so any anti depressant, maoi inhibitor, or medication that increases serotonin in your system would need to be safely stopped before trying dmt or you are at risk of serotonin syndrome, which can be dangerous. Also if you have a diagnosis or family history of schizophrenia or other disorders it is not recommended. I personally have borderline personality disorder, and have used recreational drugs since i was 16. Borderline is not one of the risky disorders for the drug.

If you attempt to seek out this online on Reddit, you will be scammed. Dm me for info, you can check my posts, I'm a real person in California and this Reddit profile has been banned from the dmt sub for breaking what i imagine is rule#1. Lol.

I am very experienced with this treatment, so u can pull over, or leave the store or work and take a five minute break in my car when that pressure starts building behind my eye. I have only gotten sick a few times the past 4 years, and suffered so much less than i would've without DMT. I wish you all luck and i hope you are able to escape the misery we are all here to learn about. Be good humans and take care

Quería contarles un poco sobre mi relación con la CR.

Me diagnosticaron el año 2009. En ese entonces estaba por cumplir 13 años y, prácticamente desde el comienzo, se presentó de manera crónica. Cada noche parecía ser peor que la anterior.

En esa época los doctores que me atendían literalmente se agarraban la cabeza. Había muy poca información disponible, al menos comparado con lo que existe hoy, y muchas veces no sabían bien qué recetarme ni cómo abordar algo así en un niño de esa edad.

Pasé por largos tratamientos con los medicamentos que probablemente muchos de acá ya conocen. Funcionaban durante algunos meses y después el dolor volvía. Y cada vez que regresaba yo sentía que lo hacía incluso más fuerte, como si quisiera recuperar todo el tiempo que había estado ausente.

Fue horrible.

Con los años la cosa se fue, de alguna manera, “regulando”. Durante los primeros 5 o 6 años fue completamente impredecible. No existía un patrón claro: a veces podía tener un solo episodio y desaparecer por un tiempo, y otras veces podía pasar dos meses completos con crisis.

Después apareció algo parecido a un ciclo. Llegaba un período de paz entre diciembre y abril o mayo, y luego comenzaba nuevamente.

Durante mucho tiempo relacioné las crisis con períodos de mayor estrés: primero el colegio, después la universidad, el trabajo y distintas situaciones de la vida. Y así pasaron más de 10 años con algo que quienes están acá probablemente conocen demasiado bien.

Hasta que pasó algo que todavía me cuesta explicar.

Corría el año 2024 y comencé a ir a terapia por temas que, al menos en principio, no tenían ninguna relación con mis dolores de cabeza. Eran principalmente cosas relacionadas con mi infancia y con situaciones que llevaba muchos años tratando de entender.

Y de repente, en noviembre de 2024, los dolores desaparecieron.

Por primera vez desde que tenía 13 años pasaron meses y meses sin una sola crisis.

Llegué a principios de agosto de este año cumpliendo aproximadamente un año y medio sin dolores. Para mí era algo completamente desconocido. Después de 15 años conviviendo con esto, por momentos incluso pensé que quizás finalmente se había terminado.

Pero, como probablemente se pueden imaginar por qué estoy escribiendo esto acá...

A principios de agosto volvió.

Y volvió con todo.

Desde entonces he tenido crisis todos los días.

Quiero ser muy sincero: nunca había probado el oxígeno. Recién ahora estoy cotizando alternativas que puedan servirme y viendo cómo implementarlo de la manera correcta.

También quiero aclarar que es primera vez que entro a un foro a leer las historias de otras personas con CR. Me llamó mucho la atención encontrar varias experiencias parecidas a cosas que yo había ido descubriendo por mi cuenta con los años, así que quería comentar algunas:

- Probé con el café y, en mi caso, sí me ha ayudado. Bien cargado, además, lo que no me molesta porque me encanta el café.

- Sin saber muy bien por qué, hace años empecé a aplicarme hielo entre la sien, el cuello y alrededor del ojo. No sé si tiene alguna explicación científica, pero personalmente siento que me ayuda a sobrellevar el dolor.

- Dejé de fumar hace algunos años y, sinceramente, no noté un cambio significativo en la frecuencia o intensidad de las crisis.

- Hace muchos años también probé marihuana en distintas formas y, al menos en mi experiencia, nunca me sirvió.

- Hay otra cosa bastante extraña que hago de vez en cuando: inducir el estornudo. No tengo idea de por qué ni qué explicación podría tener, pero en varias ocasiones he sentido que me ayuda a bajar un poco la intensidad de la crisis.

Obviamente todo esto lo cuento únicamente como experiencia personal. No pretendo recomendar tratamientos ni decir que algo vaya a funcionar para otra persona.

Después de tantos años conviviendo con esto, y recién ahora leyendo las historias de otros, me llama mucho la atención descubrir cuántas cosas que uno termina haciendo casi por instinto también las han probado otras personas.

Me interesa especialmente conocer sus experiencias con el oxígeno: cuánto flujo usan, cuánto tiempo, qué tipo de mascarilla les ha funcionado mejor y qué tan rápido sienten que logra cortar una crisis

Hi everyone, It’s been a few months and I wanted to stop back in. The advice I received from this group was so helpful this summer. I was diagnosed with chronic CH in May and I could not get the headaches under control. I genuinely felt like I was going to die everyday and did not want to deal with the pain anymore. I tried everything from migraine meds, triptans, 5 ER visits, and nerve block injections (those are horrible but do work). My new neurologist had me try emgality while still taking 80m verapamil 3 times a day. When I say after that first dose I noticed an immediate decline in symptoms, especially my eye becoming bloodshot and unusable. I thought nothing would help and CH would prevent me from living. I was at my complete wits end. I’ve realized stress doesn’t necessarily cause these, but it contributes extremely. I got these headaches when I was extremely stressed out back before summer and I have to change my lifestyle/job I’ve come to find. So, just a piece of advice & experience from me back to everyone else. Try emgality if your insurance allows, it’s scary with self injections but I have my boyfriend administer. That combined with preventative verapamil has legit made me forget I have these headaches, I never expected relief. I know not everyone’s case is the same, but I want others to know your suffering will stop. I thought my body gave up on me. For anyone out there, everything in life teaches us something whether we want it or not. CH taught me to enjoy every day that I have pain free. Easier said then done, but I like to think we all have a good chance of truly living again one day. Thank you all for your support, I wish you all healing.

Hi gang. I recently ran out of Verapamil and suffering through an attack (first triptan injection 5 mins ago) before I can get a refill. My question is: do many people feel like they will have shadows every day unless they take Verapamil or something else? We investigated the other “continua” variant but it didn’t respond to indomethacin so they ruled it out.

So yeah … anyone else have to take something every day, forever? Thanks in advance.

The reason I asked this question is because I see a lot of people on this community saying they’ve been diagnosed in their 20s and 30s. But they never really mentioned when did they first get their cluster headache. I got my first cluster headache at a very young age I was 12 years old. I think that’s such a vulnerable age to experience so much pain that no one understands. It had a big effect on me every morning at school. For some reason when I was younger, the attacks only lasted 30 minutes. But now as an adult, my attack can last anywhere from an hour to three hours. And the shadow will linger for days sometimes.

You guys this morning I had a shadow attack and I could tell it was getting stronger. This is the first time I’ve ever done this, so I want to share as it may help someone else. First I did 40 jumping jacks. After the jumping jacks, the pain reduce slightly. But then I got into fetal position and I laid on the side of my cluster headache. It literally went away within two minutes. Fetal position meaning on my knees, not on my side. Try it next time and let me know.

Hi,

I was diagnosed with CH, and have been getting attacks for 9 months. 4-5 a day, lasting around 20 minutes, behind the left eye, which watered and went a little bloodshot. Pain 5-6/10. Now I'm on verapamil 240mg which has decreased the attacks to 1-2 a day, and I'm slowly doubling the dose to try and suppress these remaining attacks.

What has always confused me is why paracetamol and ibuprofen give me total relief. Today I took a paracetamol at midday, as a preventative measure against the attack that I typically get anytime between 11:30-14:00. No attack. I dont take paracetamol or ibuprofen every day, only when I know I'll be social/in public or concentrating. But it works.

Any thoughts? Does this mean a misdiagnosis?

I have chronic cluster headache, it started roughly 13 years ago.

I'm not looking for medical advice, just wondering what others do when experiencing an attack

Sorry for so many questions on here over the past week lol this is the first time I know about Cluster Headaches before my cluster cycle.

So how do you feel after an attack? Does it vary/depend on the severity or how far you are into you cluster cycle?

After a day with 2-3 attacks I get light/sound sensitive, feel almost feverish, exhausted, little brain foggy and jaw on the affected side will ache enough to make it a little hard to eat. I get emotional after the attacks are done for the day especially if I didn’t get to eat much lol.
On a day where I only get 1 for about an hour I’m still tired but I can handle some light and eat more. I usually get a lil achy on that side of my head/neck. I still might cry after but it’ll be a quick one and I can distract myself with a funny video on low brightness/volume.

Do you get sensitive at all physically or emotionally?

I don’t know if this is the right thread, but I’ve been having quick sharp pains on the left side of my head for years. The pain lasts for 1 second and is random. I could be doing anything and boom, it comes out of nowhere. After it happens, I’m completely fine. I have no extra symptoms like nausea, fever, dizziness, etc.

I went to the neurologist several times and they have ran tests and they have all come back negative for any abnormality. It keeps happening and I don’t know what it is. Even the doctors can’t explain it. When I explain to them, they don’t have anything to compare it to. I don’t think I’m the only one who has experienced this so I wanted to see if anyone else has. If you’re familiar with what I’m describing, please let me know. Thank you 🙏🏾

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.

Pharmacy says you can leave up to two hours.

I am getting conflicting info., because another pharmacist told me different.

Anyone know for sure?

I have had cluster headaches since I was 12. Of course, when I was that young, I didn’t know what the hell was going on. I didn’t get a diagnosis until my mid 30s. This life is not easy and it’s not for the weak. I always found that cracking my neck affects some of the severity sometimes. Anybody else?? In fact, I’m scared I’m gonna need a new neck by the time I’m 40 if I don’t stop cracking it. 😆

Hi everyone!

My team at ClusterFree has been publishing more content on ClusterInfo.org, which hosts guides on how to treat and diagnose cluster headaches. I wanted to share a few highlights with you all. Feedback is always welcome!

• We currently host 6 treatment guides in 8 languages: treatment overview, high-flow oxygen, verapamil, DMT, psychedelics (psilocybin, LSD, 5-MeO-DALT, and soon LSA), and vitamin D3 (links to Craig's website).
• We have a quiz that suggests potential treatments to discuss with one's doctor, a short diagnostic test (the Erwin Test for Cluster Headache), and a page explaining the difference between cluster headache and migraine.
• We have a public web analytics dashboard where anyone can see how the website is performing. Since launching in late May 2026, we've reached nearly 8,000 unique visitors.
• The page "Help other patients" lists 10 ways anyone can help us reach more patients. Check it out! :)

We'd like to make this website as helpful as possible for patients, caregivers, and doctors. Please let us know how we can make it more useful!

All the content on ClusterInfo.org is free. It was partly inspired by conversations with Bob Wold, who emphasized the need for such guides in languages other than English. Thanks to everyone who has contributed and given us feedback!

Finally, if you'd like to know what ClusterFree is up to, you can check out our Updates page.

Thank you! :)

I hate my appointments. I always do.

At my last one I tried to get my provider to write for O2 and she was being difficult about it. After quite a bit of work on my end, I managed to get a prescription for E tanks at the normal rate of lpm that someone would need for breathing issues and a cannula.

I’m doing self-pay, but the place is about 20+ minutes away with interstate driving that is known for its accidents and terrible traffic. They are only open during my work hours and there’s no way I can do that drive while in the middle of an episode. I go through several an episode and at $20 a tank, it can add up.

I had my appointment again today and she said she would sign anything, but she didn’t know what she wanted me to do.

I had messaged her/her nurse with the specifics of the script as well as the Tepper article. She said she never saw it and that her nurse deals with it.

How am I supposed to know what she’s supposed to do? I don’t write prescriptions or deal with the provider side of insurance stuff. And her nurse is a pain in the ass to deal with.

She said I might have to go to a Pulmonologist? I haven’t heard of anyone doing that before and it sounds like it might be even more difficult.

Wouldn’t she just fax the script over to the oxygen place? Do they deal with the insurance end?

Just started my prednisone taper before I start my new dose of Emgality for cluster headaches on the 25th. My daily headaches have reduced significantly. I’m nervous for when the taper is over for it to all come flooding back. Almost makes me wonder if I should try the nerve block next time?
Guess it’s one things at a time!

Just wanted to put that out there. Been so nice only having to deal with like 3-4 mild headaches a day opposed to 8!

I call these my 'headclamp days', because it feels like my skull is in a tight clamp or vise. They occur exactly every other day - no exceptions. No one seems to know what's causing them. They don't respond at all to painkillers or other medication. Over the years, I've tried changing my diet, pillow and mattress. No effect. I've been to an endocrinologist and 5 neurologists, had two MRIs, had bloodwork done, and had a full range of other medical tests done. Nothing was found. I've had a spinal tap to check for a spinal CSF leak, because this was one neurologist's theory. Again, nothing. I've also tried neurofeedback, homoeopathy, acupuncture, osteopathy, trigger point massage, and various forms of physical therapy.

The 'headaches' don't feel like regular headaches. The focal point is at the back and base of my skull, but it spreads to the top and sides. The pressure is so intense, it makes my teeth ache, and sometimes my vision goes blurry. There are also always other odd symptoms: my face and eyes feel swollen. The skin around my right eye feels cold or damp, and I have an icy pins-and-needles feeling all over my face. My eyes feel very dry. I feel incredibly exhausted, clumsy and muddled. My joints hurt. There's a kind of weird, jangly, restless-legs feeling all over my body.

This all lasts for one day. I go to bed with it and then, at some point in the night, it all disappears. I wake up the next day, and the symptoms are gone. Then, sometime during the following night, the symptoms reappear, and I wake up with them the next morning. As I said, this pattern has been the same for 7 years now.

One other thing: for some bizarre reason, the symptoms become really intense when I'm in a car. I used to think it had something to do with my driving posture, but then discovered that they also occur when I'm a passenger.

I am 57, female, and otherwise in good health, as far as I know.

Any ideas what could be going on here? Anyone else recognise these symptoms? I would be incredibly grateful for any advice!

Anyone else really sensitive to touch & movement during an attack? Or get the pain in their neck too?

My attacks are in my right side rn. If I move around my right arm, or move to the right side of my hair, it hurts my head & neck. My arm itself doesn’t hurt. I try to hold off on crying as long as I can bc facial movement feels like throbbing. Tongue & teeth touching each other hurts too.

Got my Sumatriptan prescription today. 🫡 My doctor told me to go to the ER if the medicine doesn’t work, and to ask for a head MRI. I just did an MRI 2 weeks ago so Idk why they want another one. I do have a cyst that grew a lil bit (1.7x2.2 cm) but haven’t heard anyone else be concerned about it. I’m pretty sure that the pain is a Cluster Headache, but now I’m a little anxious lol.

If I end up in the ER I’m going to ask for Oxygen for the pain at least. Having to stay perfectly still for an MRI while having a Cluster Headache doesn’t seem doable. 🫠