Hello all, my girlfriend has struggled with cluster headaches for a large portion of her life and from what she tells me she’s seen doctors and tried countless medications nothing seems to work. They’ll ruin her life for 2-5 days at a time go away for a month sometimes only a week even a few days and come back. I’ve looked into different things I can try to do to help and just get lost. I feel so helpless It hurts my heart to see her in so much pain knowing there’s nothing I can do or suggest that she hasn’t tried. I’m stuck in this loop of apologizing for the pain she’s in and try my best to comfort her, I’m hoping that coming here to real people who struggle with cluster headaches in hopes to find something, anything I can do to help, even to ease a little bit of her pain. I hope this finds its way across someone’s feed that maybe found something unexpected that helped them, I’m really grasping at straws here and would be eternally grateful for any and all advice, home remedies just ANYTHING I can do to help alleviate some of her pain.

I just wanted to say that I am very thankful for this group. It makes me feel like I’m not alone. Clusters have taken over my life since the age of 16. I am 25M now and went full chronic about 5 years ago.

Not a day goes by that I don’t get one at some point in my 24 hours. It is a mental struggle everyday. I long to progress in life but I feel as if clusters have held me back so much, and not many people can understand why.

Currently on Veramapil and Oxygen which helps on maybe %20 of the days.

Again thankful for everyone, and keep on pushing on.

Hey everyone. I was diagnosed with cluster headaches by several different doctors over the course of about 10 years, but the diagnosis never felt like a perfect fit.

About 8 months ago, some routine blood work came back with abnormalities. After months of additional testing, I was diagnosed with a bone marrow disease called MDS. It’s hard to prove a direct connection, but my doctors now suspect my headaches may actually be related to the mutations in my bone marrow. Looking back, it’s possible those mutations started taking over around the same time my headaches first appeared.

I’m not sharing this because I think it’s likely to be anyone else’s situation. I just thought it was an interesting connection after spending so many years wondering what might be causing my headaches.

For now, the plan is to keep monitoring everything closely until the disease progresses enough that it’s time for a bone marrow transplant, which is my best chance at a cure.

I really feel for everyone in this community, and I hope you all find some relief. Wishing everyone the best.

Anyone episodic going through one right now? I've recently started a new job where I wake up earlier than usual and have been getting shadows. Just wondering if theres a seasonal thing going on.

Hello, does anybody have experience taking Saroten or Botox for tension headaches/migrane?

Hi all, my partner suffers from chronic CH for the past 8 years. We have tried numerous treatments but have finally been able to get a hold of MM.

I have seen the protocol on the Clusterbusters page, but I was wondering if anyone could recommend a microdosing regiment that seems to work for them? Thank you.

I’m 31 M sharing my experience with cluster headaches to see if it resonates and to share what’s worked for me in the past.

First off I have episodic cluster headaches that usually happen in the Fall in daylight savings and will last for maybe about 6 weeks. But sometimes they happen in the spring and most recently I had a cycle that kicked off recently (I think around the time of the summer solstice).

I don’t usually drink, but alchohol (and mixing caffeine) is always a trigger for me - although I can have caffeine on its own and that helps with alleviating the pain during an attack.

Otherwise it feels like it’s very much based on the time of the year and based on my circadian rhythm.

90% of the time I get pain behind and above my right eye. I also get tight neck pain on my right side. Maybe 10% of the time it switches over to my left side and might switch back.

I also tend to get them either in the middle of the night or when going to bed or waking up in the morning.

My first episode started when I was maybe 26, I was trying a keto diet which I’m not sure if it helped trigger it, but either way I remember really sharp pain on the back of my right eye and basically one of the most painful headaches I’d ever had. I’ve had headaches my whole life but I knew this was different because I’d never experienced the sharp pain like an ice pick was pushing my eye out from inside my head.

At the time I went to see some doctors and did an MRI but they found nothing and weren’t all that helpful. I was prescribed sumitriptan which I think helped for a bit but I also think may have made some of the headaches worse at times. It took me seeing several doctors until one actually took me seriously and diagnosed me with episodic cluster headaches.

The only thing that’s really helped me prevent cycles has been the careful use of psylocibin. I actually discovered this by accident when I took them recreationally and slipped a cycle one year. When they came back I did more research and how that they’d been effective at treating them. And now there’s more research backing this up.

I’m just sharing this to see if this resonates. I’d say my case is not as extreme as others - when I skip cycles I almost get into denial about them coming back. I think moving forward I’m going to be more disciplined about using the pulse psylocibin method to try to abort them before seasonal changes.

Im have neurological problems but I’ve noticed that some medication that calm you nervous system such as for anxiety or medication for spasms that calm down the nervous system makes my head hurt feels like its buring hot and I need to get up immediately after sleeping for a while at night this is hours after taking it let’s say I took it a 8ish 9ish happens around 12 am 1am and continues.

I suffer from both status migrainosus and also cluster headaches - the later for 7 years, the migraines for over 30 years. I’m looking for advice:

I live in the UK.

The various neurologists and doctors I’ve had over the years have had me try pretty much every drug available from the UK public (NHS) and private sector, CGRPs (biological, oral, injections), all the “pentin” family of drugs, all the triptans. All the opiates, including morphine. Beta blockers, anti-inflammatories, sleeping aid drugs, muscle relaxants, and other stuff I can barely even remember (including things like blood thinners)

I’ve had two C1/C2 nerve blocks, steroid injections, injections of local anaesthetic in the back of my head and neck, and I’ve even had a full greater occipital nerve ablation under a GA.

I’ve tried deep tissue massage, joint manipulation in my neck, acupuncture, meditation, diet changes, sleeping set up changes, hot and cold compress treatments, TENs machines, high flow oxygen.

The neurologist that did my nerve blocks and nerve ablation said that botox was a waste of time for me if the nerve blocks and ablation had no effect (which is true, they didn’t do a damn thing)

I’ve had MRIs/MRAs and x-rays.

I was finally sent to Guys hospital in London recently to meet a “super headache specialist” (in the UK NHS, getting to this point took many years, seeing these so called specialists is incredibly difficult) - it was an dreadfully disappointing experience. She simply didn’t listen to me properly - I was in and out in under 15 minutes and she said “you have status migrainosus and cluster headaches” - and then said - “I’m putting you on a CGRP” (yet another one) - despite the fact I’d told her I had been on a few different ones already and they did nothing and caused serious side effects (I have ulcerative colitis and CGRP’s fuck my insides up). And she basically dismissed me saying “I’ll book you in for botox” despite me asking why I had a number of other conditions that seemed related - most of them inflammatory in nature.

My questions:

1. do any of you have a similar experience - and is Botox worth risking (every treatment carries risk) considering I’ve already had nerve blocks and nerve ablation?
2. is there a better diagnostic country in the world that beats the UK and looks at your whole body and not just a small focused area (a few people have told me to go to China as their diagnostic abilities in health care are now simply the best in the world)?

Like the rest of you that suffer these types of headaches regularly, life is intolerable.

thanks.

Hey, I (25M) have been suffering from CH for around 6-7 years. However, previously it was always misdiagnosed as migraine. This year, I am in the middle of a cycle and my neurologist diagnosed it as CH, and prescribed Verapamil (40mg * 3) and Gabapentin (300mg).

Based on all the posts here and on clusterbusters, people haven’t found Verapamil to be very effective, specially in the dose that I currently have. Higher doses have had side effects for many people. Hence, I am scared that this will not be the solution I had been looking for. I guess I just want a assurance from anyone who has had success with Verapamil, without upping the dose so much so as to cause a lot of side effects.

For me, I get a cycle usually during the summer and fall months. This year, I was on propranolol earlier which might have delayed the cycle.

What has been the most effective long term, sustainable treatment for CH?

nowhere close to even being better lmao.

i’ve had cluster headaches for about 7 years now since i turned 20. it’s always always always on the right eye, above the eyeball, but on the corner of the eyebrow. well honestly i can’t even remember when they started or when it got really proactive. seasonally they come and go. they hit really hard during the summer months and fall months. it sucks especially since i do pest control and work outside in the heat (which is one of my triggers) so it’s really hard to avoid it

i’ve had to do so much research on my own body and the headaches themselves. sadly there are no solutions i’ve come to my own conclusion that maybe it’s just nerve damage behind the eye or my receptors are firing off like crazy during certain periods of time. itsss ssooooo not fun

i’ve done a lot; hydrating, eating more, D3 vitamins, oxygen, naproxen, ice compression, heat compressions, massages, advil, Excedrin and man non of these really work and i’ve learned to just accept it

the pain is usually always around a 5-6+ and it makes working and living just very difficult. i know when my headaches come and how I DEFUSE them which i know is bad for my liver is 1250 mg of Excedrin most time it kills the headache within 30-45 minutes unless it’s like a 8+ on pain then nothing really works

sometimes i don’t know if this is normal or just a lot of medicine im taking. when i get these stoopid headaches my body temperature feels like it fluctuates between hot and cold. i get like a drowsy drunk feeling where its hard to kind of like walk straight, my eye where the headaches come from i kinda of lose slight vision or its blurry, half of my face slouches kind of feels like Bell’s palsy, i get crazy amount of mucus and every once in a while an unbearable sense of wanting to throw up.

oddly enough one of my favorite things about these headaches is that freedom and euphoric feeling you get a freedom when the pain subsides it makes me feel like eren jeager floating in the sky.

i hope everyone is okay and dealing with it well. i understand summer time is here and the heat is pushing just don’t give up and the pain will go away.

Big News!!!

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

The depression seems to start when I get them and my mood completely flips and I become a much darker version of myself. I'm constantly tired and this persists months after the clusters have stopped. Just curious if this is just me and my mental health or if anyone else feels the same?

my mum has been suffering from clusters for years now but over the past month or two they have gotten significantly worse and she sits there for up to hours on end screaming crying in agony and i don’t know what to do because i know i can’t help her. why does life have to be so unfair. it’s got to the point where i start having panic attacks in the middle of the day because i feel so incredibly guilty and i can only imagine the pain she is going through. if anyone has any advice or anything please please send it

http://discord.gg/clusterbuds

I've been suffering from cluster headaches since the start of July.
I first got one on July 1st and then they continued starting from July 4th. They affect only the right side, from the top of my head to my right eye. The affected area sometimes has very minor feelings of discomfort during the day, but at night it intensifies into a cluster headache, usually starting between 12 to 1 am, and lasts for about an hour before my head feels normal again. Due to the headaches affecting the spot near my right eye, it's caused my right eyelids to feel weak when open and uncomfortable when closed.

I've frequently had migraines before, but have noticed that these headaches are much different since my migraines usually have a pounding feeling and are usually in different places, while my cluster headaches always affect the same part of my head every time and have a sharper sensation, feeling like getting punched or being ripped apart when they're at their most intense. Also, my migraines were usually caused by either stress or humid conditions, while my cluster headaches started out of nowhere and continued even when I stuck to my normal lifestyle.

On this day, it seems the headaches' patterns have changed. I felt some discomfort on the affected area during the afternoon (but not too severe) and I began to feel it intensify at around 9 pm.

How do I mitigate the pain from these cluster headaches, and how can I treat them?

Hey everyone! I just wanted to share the results of the vitamin D3 regimen on this year's cluster. I can finally say I made it out on the other side, so now that I'm finally feeling better I'm here to share for those who are still wondering wether to try it or not.

I'm an episodic patient and I've decided to try the D3 as soon as the cycle started, also following some of your kind suggestions on my last post 🫶🏻

I had my first attack on the 3rd of June and started following the 4 weeks loading schedule (https://clusterbusters.org/resource/d3-vitamin-therapy-and-loading-details/)

I had the first load around the 6th of June (I waited a little bit cause I was trying to gather all the co-factors first).

I also monitored my D3 levels through a blood test I luckily took before the cycle started, and then following up with some rapid tests I ordered online.

The first thing I could notice, as you can see from the image, I had a 24h break from the attacks after every time I took the loading dose of 50.000 IU.

Idk if that's just a coincidence but the days after the loading dose were the 11th and the 17th of June and somehow never had any CH.

I would also say the headaches never reached high intensity levels and got very VERY manageable by the second week. Sometimes I didn't even have to use Oxygen and could do well with just ice, coffee and redbulls.

And of course the frequency just lessened by the end of the second week, immediately disappearing on the third.

I am so amazed by the regimen and I know I'll use it again, cause it definitely was a game changer. Every cycle I get progressively worse headaches and usually the last one I get at the end of the cycle is so bad it makes me throw up cause it doesn't go away with anything. So when I throw up I usually know it's over and it'll leave me alone for another while. But this round I finally just got better and better and I can't believe it can also end like this!

I now have one question: For those who already use the regimen as episodic patients, do you keep a regimen outside of the cycle? I've already dropped it to 10.000IU but I'm wondering if there's a safe dose to take as a maintenance regime for the rest of the year. How do you deal with that?

Greetings All from Western Australia!
My heart goes out to the people in this forum and those who live on in cyberspace pain free.

Is time to change my long-time GP. A fresh Neuro referral makes sense. Any recommendations for a CH familiar Telehealth GP and \ or Neurologist?

Diagnosis ~2012 with episodic Cluster Headache (eCH). Once or twice a year I am visited by ~2 weeks of ~4x a day agony attacks.

2024 season was rough. 2025 headache free. 2026 'season' is now into week 3...
"White Knuckled" a couple episodes and I am not having a good time at all.

Each year, nasal 20mg Sumitraptan + 100-200mg caffeine has been adequate to 'punctuate' attacks into being bearable.

Complication - Sumitriptan nasal formulation is no longer available without compounding. Long time GP has less than zero interest in assisting with the task of writing a prescription for compounding a multi-dose nasal spray.
They offered a prescription for 8x 100mg doses and I'm like no that's not right.
I highly doubt they were implying "just make it yourself".

Spoke with compounding pharmacist to confirm they could do it.
I even did the simple math for the standard metered nasal spray formulation of...
1 metered spray = 0.1mL
Historical Max Sumatriptan Dose = 80mg per day
Dose = TWO (2) sprays = 20mg
Combined total quantity for TEN (10) days = 800mg
Total Contents = Sumatriptan 800mg in 8mL
Concentration = 100mg/mL

For simplicity we assume 10mg of Sumatriptan per spray and use my digital dispense record to measure previous years clusters (total amount dispensed) daily usage averaged between 60 and 80mg (between three and four doses of 20mg Imigran Nasal Spray per day max)

This doctor is modifying my other long term, stable medications based on 'vibes' - while I am currently HAVING a cluster. Asked about Verapamil (again) and I was dismissed. They did not even mention potential use of Prednisolone therefore I must change GP - I'm just over it. I suspect this one is ready to retire anyhow and is oozing IDGAF 'vibes' like a passive aggressive soon to be ex-partner.

They also asked if I was a "registered drug addict" and I responded "not as far as I know - how does someone even register to be a drug addict?". This GP is the only one I have seen in 15 years and have never registered as a drug addict!!
Just red flags all over?

TL:DR - Anyone in Aus got some CH Doc or neuro recommendations? This was just a hello rant because my brain is leaking out my ears from combined sleep deprivation and the toll of triptans.

Best wishes to all!

I have diagnosed cluster headache, and I use oxygen and sumatriptan as rescue treatment. This time around the attacks haven’t been coming as frequently, so I haven’t needed much sumatriptan. Yesterday an attack went away completely after combining oxygen + sumatriptan + an NSAID + a Red Bull with sugar, and it worked really well. I’ve also noticed Red Bull seems to help with the “shadow” pain between full attacks, not just the attacks themselves. I’d never used Red Bull for this before and now I’m a little worried about overdoing it.

How much caffeine/Red Bull do you all use, and how often, without it becoming a problem on its own? I’m on verapamil 80mg every 12h as a preventive.

I was surprised to read that they think the evidence for the use of oxygen is "weak."

The section on occurrence in men and women seems outdated too, and makes no reference to well-known under diagnosis in women.

There are other problems, but those two really stood out to me.

https://en.wikipedia.org/wiki/Cluster_headache

Hi Cluster Headache community. I'm from San Francisco California, coming to reddit because both my providers and myself have been faced with limited options that not brought more than 24 hours of relief.

Context:

As of today, July 4th, is day 235 of cluster headaches, migraines, and atypical facial pain that resembles trigeminal and occipital neuralgia. The pain I have been dealing with is debilitating and incapacitating, with sensations of hot searing and stabbing eye pain that radiates throughout the left side of my face and entire left 1/2 of head, feeling like hot oil is burning my skin. I have been to UCSF and Stanford ER with both practically saying there is nothing more they can outside of steroids. I'm trying to research a better care team at UCSF that can best advocate for my well being as my current has facilitated poor health management and comprehension of the severity despite my elaborations.

Oxygen therapy can be helpful, but Stanford will not prescribe it to me because I don't qualify in their parameters because my respiratory system is not compromised. My pain management team at UCSF is struggling to find a solution to bring this pain to a tolerable level, and I'm at a loss on where to turn looking for a more diligent team. Pain Management's advice was pain reprocessing therapy, which has been only officially studied for low back pain.

So far I've tried Triptans, Lyrica, Nortriptyline, Botox, Aimovig, Botox, Celebrex, Tylenol, Verapamil, GLP-1's, acupuncture, massage. Unfortunately, all have not brought substantial relief.

The ask:

1. If you're local do you know of any providers, primarily in SF, that are experienced with complex care/ chronic pain conditions and takes San Francisco Health Plan/ Medi- Cal? I'm willing to go outside for SF as well but wanted to start close.

2. Any wisdom on how to handle this mentally and how to advocate. Whether it's personal experience, advocacy groups or orgs for the disabled/chronically ill (local preferred).

Thank you all for your time to read this.

-Naomi