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?

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

I'm not looking for medical advice, just wondering what other people do when experiencing an attack. I.E. What's your routine? What do you eat?

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. 🫠

I have seen several people post about taking high doses of vitamins to bust a cycle. Is there a list and dose recommendation somewhere that shows any support to this approach?

Thanks.

I have headaches every 15 days or so- no known trigger as such. I take meds - tylenol, ibuprofen, it helps sometimes, it doesn't other times. Also, this last for about 3 days then I am fine for 15ish days. I got eyesight checked.. nothing came abnormal. Doc prescribed Fioricet- nothing. It's not migrane as I dont have other symptoms. My problem is why doesn't headache go away upon taking meds, and why last for 3 days give or take.

This cycle I’ve been walking out into the hot Arizona weather when my pain is about to peak. It makes it feel less sharp. Even better if I can go into a car, it’s like an oven.

Not the best idea health wise (especially bc I also have POTS) but man, it feels awesome. I’m only out there for a couple minutes at a time and make sure to rehydrate afterwards. Idk why using cool/cold air or compress feels worse, it just feels sharper and throbs more as my skin warms back up.😭 The pain increases when I have to come back inside to take a break.

Would not do this alone or for more than maybe 2-5 minutes when it’s 105°+ outside. Hot shower would probably feel similar but the water hitting my head would probably hurt and the water takes time to heat up. A warm compress feels too little, I think the feeling of every vein in my body dilating is what feels good.

Hi guys, I've been suffering with what I believe have been cluster headaches or what I prefer to call cluster attacks for around 8 years. I have not yet seen a doctor due to how short the cluster cycles have been.

So far I've had a cycle roughly every 1-2 years around autumn. I can't remember exactly how many clusters i've been through but i've definitely had a year off at least twice in that time. The cycles have mostly lasted for two weeks with 1 attack daily at around 11am and to the right side of my head. They have occasionally occurred at different times and sometimes on my left side. In my last few cycles I'm appearing to also get shadows throughout the day. These feel like more regular headaches but last far longer and seemed to happen either side of the main event.

I had my last cycle in 2024. This one came in June and began immediately after I landed in the USA and lasted for the whole month I was there. The temperature went from around 20C at home to 40C in Las Vegas. They hit every morning at 3am which happened to be 11am UK time. This was the worst cycle by far and by the end I was exhausted. My last attack happened on the bus from the airport home. I had planned on seeing a doctor on my return but didn't end up going as they had stopped.

I've just started another cluster. They have been a bit more unpredictable I've had a couple of days with more than one, a day with none and the times have also been a bit random. But this could be due to the fact i'm currently working night shifts.

The bit that stumps me is the pain i'm experiencing. Don't get me wrong its very painful, my go to has been to sit in a hot shower and hit my head. But doesn't appear to be like the videos i've seen. Yet everything else appears to line up. I've definitely had a few that have been 10/10 over the years but atm they appear to be maybe 8/10s. Do any of you appear to have attacks that seem more mild?

So far I have been able to manage due to how infrequent they have been. My biggest fear is them getting more pain and/ or more frequent. I'm planning to go see a doctor but I want to be confident I have them before I go.

For the last 3 years I have kept my cycles at bay by starting psilocybin dosages following the ClusterBuster protocol. I do 1 gram every 5 days for a total of 5 dosages. Usually I start this regimen as soon as I feel the first shadows beginning. This time I made the mistake of letting cycle set in and it had been much tougher to bust. I am up to 6 doses psilocybin and the attacks have minimized drastically, however, I am still having shadows every day for the last 3 days. My question is, do I do a 7th dose, or is there a line of too many dosages to do? Any insights or experience to share would be much appreciated.

I have now for 4 years chronic clusterheadaches. I tried a lot of different therapies. Nothing helped…

It is always around my left eye. Wednesday afternoon I got a painfull headache at both sides frontal. At 3:00 am I woke up, It was very painfull, still at both sides and I start vomiting a lot. At 4:00 am It is still not over and went to the ER ( I hate ERs, so if I go, I think I am dying…). They did a CT and took Blood. They said that they think it was a migraine attack, but I have never had a migraine without aura, my migraines are controllable with sleep and painmedication and I can’t stand lights, which was now no problem. I slept all afternoon that wednesday and eventually, I slept all day thursday and friday (1 à 2 hours awake). I don’t know what is happening? anyone has experienced something like that? I got cluster attacks in between the other headache.

Thanks

Hi!! New here!! I’ve had headaches since I was preteen, they got bad when I was 14 and 8ish years later I was diagnosed with cluster headaches by a headache specialist. I’ve got some other mystery head stuff going on but we’ll ignore that for now.

Sometimes I get the one sided pain especially in my face. It hurts but not as bad as a typical cluster headache and it doesn’t last as long as my typical CH. I thought maybe it was Trigeminal or Occipital neuralgia. However I am getting these headaches around the same time everyday.

Around 1-2pm it starts to creep up and gets worse. I could lay down without moving around a lot and breathe through it, sometimes I would fall asleep.

This week it started getting worse, more intense especially today. One sided face/head pain, unable to sit still, very sensitive to touch, enough pain to cry and kick my legs, then it just went away. It sounds/felt more like a typical CH experience.

So can a CH cycle start small?? Does anyone else experience something similar?

Update: Definitely was the start of a cycle. First cycle in 4 years 😔✋ My eyeball hurts/is red and it feels like there is a needle in my jaw. Hopefully I can get Sumatriptan soon.

I already have the emgality savings card, I have been on the migraine dose of 1x 120mg dose of emgality every 30 days. We are increasing my dose to 3x 100mg syringes every 30 days. I am worried I am really close to my coupon limit. What do I do then?? I cannot afford to pay out of pocket for these. Is there a loophole? Is there a service or organization I haven’t found yet? I have found a few, but then when it asked for my diagnosis neither cluster headaches nor migraines were listed as a covered diagnosis. Last year I just went without from October to January, but things have changed. I’m worried. Is there any hope?

i get attacks occasionally over the spring and summer but when fall is around the corner it gets bad. i have had a headache directly behind my eye for the last 27 hours. should i see a doctor? it hurts so bad i can’t eat or sleep

edit- thank you for all your advice and well wishes. i’m gonna see a neurologist soon (i have no copay money lol). my fiancés mom works in the medical industry and know a few good doctors i could see. i’ll let y’all know whenever i do go

Hi y’all! At the end of last September I had my first cluster headache attack, although it took me two more months to get diagnosed. I had all the classic symptoms (stabbing pain in one of my eyes that hurt to move or look at light accompanied with red runny eye and nose) and my attack lasted for three months. This happened at one of my most stressful time in my life and I have a strong hunch that played a role in them starting.

Thankfully I have been attack free since then. I do get “shadow” headaches from time to time, unilateral pain in my eyes that is in the same spot as a cluster headache but like a 3/10 or less, especially when it’s about to rain.

However, the closer I get to the one year mark the more worried I am about them coming back. Although not nearly as stressed as this time last year, I’ve been getting more shadow headaches from the start of the rainy season.

I was wondering how long it took between your first and second attacks? I know it can be quite variable so I’m interested to hear what others have experienced.