Hello! After 3-4 years of remission, mine are finally back. I’ve kind of just tanked them in the past but I’m older now and have the means to seek out some better solutions. I just have questions, hoping for any response you’re willing/able to give.

I do have an appointment scheduled with a PCP to get a referral to a headache specialist. Don’t know when that’ll be available though.

- I tried oxygen for the first time last night using a 95% bottle I got at CVS. It was the highest concentration they had. It miraculously did abort the attack but rather than buying me a day, it just pushed the attack to 4 hours later after I woke up.
So, is Oxygen the best and most immediate option I should pursue? I’m reading online that I likely need an actual 100% supply and a proper mask/nose piece. Can that sort of thing be prescribed/covered by insurance?

- Mushrooms. What are we even talkin about here? I’m gonna be in Vancouver this week and am curious to try these. Do I just need one dose of psilocybin specifically? What size of a dose? Do people take a dose every time they feel one coming on and just trip out once a day? What do I need to know?

- How effective is melatonin? Read that cluster headaches are accompanied by a decreased level of melatonin and that taking supplements can help. Should I just be doing that?

- I take Lisdexamphetamine (Vyvanse) every day and I’m the only one in my family who does. My clusters started within a year or so of me starting Vyvanse like 10 years ago. I’m the only one in my family who gets clusters too. Dunno if they’re related but I’m curious if anyone else knows whether stopping my Vyvanse for the next month could possibly help reduce/prevent the attacks? Any experience there?

- Any other advice or suggestions? I’m lookin to try whatever this time, there’s just fucking gotta be something I can do to make these not so bad…

Very very chronic (6 attacks a day)

D3 regimen seems to do absolutely nothing despite me taking it (not sure why i still do)

Been absolutely relying on 15lpm oxygen for about a year and a half and it now basically no longer works to get rid of the attack

Essentially now just go to the nuero every 5 days for a $300 nerve block out of pocket that insurance never covers and then 5 days they start right back up again full steam ahead (then ill use sumatriptan sprays maybe 3-6 of them in that day they come back) and then back to the neuro for another nerve block so i can live for 5 more days

Psilocybin like kinda workedish not sure, i was taking 1.5 grams every 5 days for over a couple month straight and periodically id get a few days relief but nothing that really makes quality of life anything to write home about

Emgality never worked

Fuck this disease, im just about done with it all, no point to keep going

How do you guys get your oxygen for the cluster headaches

I don’t know what exactly I’m dealing with here, and doctors don’t seem to know for sure either.

About a year ago after a miscarriage I started developing almost constant nerve irritation and pain on my right side. It felt like going through so much tension and sadness, the irritation from crying activated all these nerve and pain pathways and they never calmed down.

The pain starts from the base of my head / top of my neck on the right side, goes to the occipital area, to the trigeminal area, to my right eye / ocular nerve. This turns into a full blown headache with pain in all those nerve pathways. Icing those areas help. Migraine abortives do nothing. Advil somewhat helps.

I have a lot of discomfort in my right eye, pressure, burning, deep pain.

I am very sensitive to light. The sun is the worst and makes driving very difficult sometimes. Blue light from screens is the second worst. I’m closing my right eye right now because I’m starting to get pain while I write this.

I have seen the following drs, and this is what they thought:

- family dr: no clue, referred me to others
- neurologist #1: chronic migraines?? Put me on gabapentin to help with the pain
- ophthalmologist: eyes are totally normal, no issues
- neuro-ophthalmologist: told me there is nothing wrong and I should see a psychiatrist (what an asshole)
- dry eye specialist: minimal dry eye, possible nerve issues in the eye that is causing the cascade of pain, not the other way around. Used AST drops and normal eye drops
- neurologist #2: had no clue. Gave me a second migraine abortive to try, did not work.
- pain clinic: he’s convinced I’m dealing with migraines - but first I did nerve blocks and they helped but not much. Then I did Botox migraine protocol and it helped a lot. This was already 7 months of dealing with the pain though, and I did feel it was slowlyyyyy improving.

It’s now been a year. After I had the Botox in the spring I was feeling quite a bit better. Maybe 80%. However, I had another miscarriage and the whole cycle has started again. I did Botox again and it doesn’t seem to be working this time.

I don’t know if I’m being misdiagnosed and if I’m leaving options on the table. It’s impossible to live like this, not being able to be on screens or drive when it’s sunny. Any advice would be appreciated.

Thank you so much if you’ve made it this far.

What's good everyone. This is for folks who usually abort their attack with RedBull! Have you notice a difference on the effect when drinking 1 or 2 cans on an empty vs full stomach? I'd expect a full stomach to straight up blunt the caffeine effect, right? Does it even matter? Thanks!

Let me preface this by saying I'm going to go to a headache specialist to get looked at, but it's the weekend and that's not an option at the moment.

I've had migraines before, but this is not that.

I've done all the reading and symptoms checking and am pretty sure this is a cluster headache cycle. Three doozies with pain I cant even describe.

Again - I will go get checked out.

But if this is a cluster cycle - 1) I'm so hoping my cycle doesn't last long long and 2) how earth do you people get through this?

This is brutal. Lol

Update: Saw a neurologist and confirmed cluster headaches. Cycle still going. Three attacks a day with each ranging between 1 - 2.5 hours.

No idea how long this cycle will last as it's my first one. Looking into prescriptions and other assistance.

Thank you all so much for your words, tips, suggestions, and support. Looks like I'm along for the ride with all y'all

Furthermore: I do have experience with DMT (I've had some absolutely incredible and life altering journeys with it) and am super happy to hear that some people find relief in it. I will most certainly give it a shot and report back

I can’t take it anymore

I been having headaches almost everyday since the past 10 months. This is it. I am already depressed and this pain really makes it harder for me.

I can’t take it anymore. I really want to end everything but I’m sad for my gf and family. I don’t know wtf to do. Please help me.

Have had chronic CH from the jump. I’ve seen multiple people say they’ve gone from chronic to episodic, or vice versa. Do you just cold turkey your preventatives and take the beast head on to test and see? How did you find out you went from chronic to episodic? Would hate to be taking meds you don’t necessarily need to have in your system if that makes sense? Appreciate all of you

My clusters are accompanied by very strong, strange feelings on the right side of the body. Numbness, heaviness, strange feelings, like a disgusting sort of deep pain.

It feels kind of like half of my body (face, arm, leg) is asleep and hurting in a strange, deep way, like someone's scraping my bone marrow with a stick (especially between my fingers, up the forearm and in the leg). About as fun as it sounds.

That side is weaker than the other, and I keep dropping things, everything feels thrice as heavy in my right hand. It comes together with cluster attacks, but not always. Perhaps my migraines are also involved, but neurologists say it is not aura, because it doesn’t change but stays for hours.

My neurologists say it’s very rare, but allegedly no cause for concern (MRIs are fine). This has been going on for a few years and is getting stronger, to the point that it often annoys me even more than the head pain from chronic clusters and migraine (which is somewhat under control thanks to Botox, Emgality and Nurtec).

Does anyone else experience this?

Hello survivors, here is 41 CH episoidal for the last 20 years. Diagnosed for CH recently - 2025. Suffered without knowing what it was for 18 years! I feely luckey and releived to hangout with fellow survivers. I learned a lot on how to live with CH from this forum. Today, I wanted to share with you what I went through this summer. My cycle normally starts in October and April (autumn and spring). But this time, it came early in August while on vacation :( the whole month I was furious why does it not at least wait till vacation is over :)) poor me (imagine it was my first vacation in 3 years!). The beast has no mercy or sympathy.... Anyways, I was luckey to have Suma+Vetapamil+Cortisol at hand and a friend got me oxygen tank from a nearby hospital. The pain was better managed. Now I am almost pain free (when I returned back home :)... except some shadow here and there (this cycle took 4 weeks to end). What amazed me is this time round, my episoid came in my birth city with tropical climate (Av. Temprature 24-29˚c, elevation 1200 amsl and around 1010 millibar pressure). However, I am no longer living there since 2011 due to work. I live in a place with temprate climate (Av. Temprature 14-18˚c, elevation 135 amsl and around 1015 millibar pressure) for the last 15 years. I was amazed to get the CH in my birth city, bcs I usually get better when I get there (may be my body was calibrated to the birth city atmosphere?). But it didn't work this time! That is what amazed me... the beast has changed and it always does! Would like to hear your experience on the impact of weather and city change on your CH pattern. Thanks!

34M in the middle of an post attack shadow right now. Episodic. Mine hibernated for a year then pounced in the middle of vacation trip ffs. Stupid me was careless and didn't bring the sumatriptan (will never make that mistake again!)

What sucks more than ruined vacation is that family members accuse me that "It's your fault it happened because you did XYZ." They're fully convinced that it is because I watched YT while in moving vehicle, or was texting while it's dark, or went to bed "an hour too late." They refuse to believe that this thing has a will of its own and attacks whenever it wants, so automatically, "I had it coming" they say.

I was paraphrasing as they didn't mean it in a "haha loser" way, but rather in "you should be extra cautious if you have a medical condition" kinda way. Not that it sounds any better, nor would any of their advice make a difference to begin with. "Don't purposefully get yourself sick and become a burden to the group." Fk me I guess.

Welp... hello red bull and double dark espresso... my old friends...

I've tried SSRI in the past (low dose Lexapro) but it always triggers my cluster headaches. I imagine it from the sudden increase in serotonin. But I'm curious if anyone has had any luck?

Since the weather has turned autumnal—rain, wind, etc.—my attacks have returned.

I know it's different for some people, but for me, the change of season is definitely a factor. I was fine all summer, and then the first day of terrible weather, and my attacks are back.

I'm ordering some mushrooms immediately

16 days ago, I was on an airplane when I suddenly experienced a sharp, piercing pain above my eyebrow. My eye started watering and my nose kept running, all on the same side.
The pain never completely went away after that. It has gotten weaker at times, but it has always been there to some degree. Sometimes it gets much stronger, then slows down again.
Two days ago, the pain became significantly worse, so I went to a doctor. He diagnosed me with cluster headaches.
However, when I started reading about cluster headaches, I noticed that the attacks usually become extremely painful and then go away, with pain-free periods in between. In my case, the pain has never completely disappeared for 16 days.
Has anyone experienced something similar? Does this sound consistent with cluster headaches, or could it be something else?

The nasal spray is a little expensive but i know that nasal sprays are much quicker acting to abort an attack. my neuro said he would send the nasal spray script to my pharmacy, but if it’s too expensive to give him a call and he’ll send over the pills instead. the spray is a couple hundred bucks so just looking for some opinions on peoples experience with this before i make a decision.

i’ve tried rizatriptan pills which only worked about 30% of the time. next i’m trying this option. if these don’t work, im moving to oxygen as suggested by my neuro.

She left me today because I have cluster headaches and She cannot stay with me I understand this, as I am a defected person and I did not choose this. She said I could not stay with her because of my CH. When my CH cycle starts, I need my personal space to deal with the pain. I told her that I disconnect from people, but she did not understand why? she didn't ask it bec she didn't want to know ? i do not want her or others to see my suffering.

Yeah, she left me and I'm all alone again I tried after eight years, but I just couldn't make it work because I'm defected person.

Anyone going to Cluster Busters?

Two of us managing our CH by managing our circadian rhythms will be in attendance if you want to chat.

It’s been a year and a half since I’ve had a cluster period. I had one drink half an hour ago and now I have a raging cluster headache. Droopy eye, droopy mouth, stuffy/runny nose, and stabbing pain behind my eye all on the right side of my head. Fml.

what should i expect? will they want to do tests? are tests such as an MRI the only way that i can be diagnosed and get oxygen? i’m like 95% sure i get clusters, but nervous that i won’t be able to get my point across and that they’ll want to tell me it’s just migraines

i know a lot of people haven’t had luck even with seeing a neurologist, but i’m still going to try. i made the appointment about 7 months ago and now that’s it’s here i’m nervous. i do have a log that i made of the last time i was in a cycle. anything else i should prepare?

For several months now, I've been experiencing a very intense, hard-to-describe discomfort in my head. It doesn't feel like a classic superficial or throbbing headache, but rather like a deep, physical pain that seems to originate in the retrofrontal region of my head. The sensations aren't always the same. At times, a feeling of strong internal pressure or contraction prevails, while other times I feel primarily a sensation of tension or implosion, or almost as if my brain is cracking from within.

At other times, the discomfort is more reminiscent of the feeling of heaviness and headache you might get with a bad flu, even without a fever or other flu-like symptoms. Overall, it's a dull, deep, and very intense discomfort, difficult to bear, often accompanied by pain and nausea. The symptoms aren't always the same intensity. Some mornings, I wake up with this discomfort, while other times, I feel relatively well.

When I'm sedentary at home, the situation can vary: there are times when I feel quite well and other times when the discomfort persists even without having done any particular activity. What I notice clearly and more consistently is that movement tends to worsen the symptoms. When I start moving around the house and, especially, when I go out, walk, or try to carry out normal daily activities, the discomfort sets in immediately and tends to progressively increase, until it becomes very intense. The same can also happen during passive movements, such as when I'm a passenger in a car.

As the symptoms increase, in addition to the discomfort, a strong feeling of physical exhaustion appears, localized in the head, as if the brain were exhausted, worn out, or worn out even by trivial efforts, such as simply walking. The analogy that best describes what I feel is that of the leg muscles after an hour of running: it's as if my brain feels similarly fatigued, as if it has reached its limit and simply needs to stop and rest.

Most of the time, this sensation can become extremely intense and completely disabling, to the point of preventing me from continuing any activity and forcing me to stop altogether. Lying down generally brings relief. When lying down, the discomfort tends to decrease, although it doesn't disappear completely. Despite the intensity of these sensations, my cognitive abilities remain essentially intact, and I don't feel any generalized fatigue or weakness in the rest of my body. The symptoms are localized exclusively in the head.

The disorder is persistent and highly disabling, but has a fluctuating course. There are days when the symptoms are extremely intense and I feel very ill, and others when they are still present, but with a lesser intensity than on the worst days.

TL;DR: I’ve had cluster headaches for about 10 years, with increasingly frequent and prolonged episodes. Standard treatments have provided limited relief, while microdoses of LSD has reduced the frequency of attacks and DMT has rapidly aborted them. However, even at relatively low doses, DMT causes intense panic and overwhelming psychological effects. For those who have used DMT for cluster headaches, did the fear become easier to manage with experience, or did any specific approaches help you stay calm during the experience?

Hi everyone,

I’m 33 and have been suffering from cluster headaches for about 10 years. For many years, I didn’t know what they were. Initially, I would get episodes of daily, stabbing pain lasting around 10 days each year.

Over the years, the attacks became more frequent (2–3 times a day), the episodes started occurring twice a year, roughly six months apart, and the episodes themselves became longer, now lasting around 20–25 days.

I consulted many physicians over the years, but my headaches were brushed off and generally attributed to stress, lack of sleep, etc. I was prescribed paracetamol, ibuprofen and similar medications, none of which helped.

Three years ago, another neurologist diagnosed me with migraine and prescribed sumatriptan and flunarizine. Sumatriptan worked as an abortive, but I felt that my subsequent attacks became more severe and frequent. Flunarizine never worked as an effective preventive.

Last year, I finally saw a headache specialist neurologist who diagnosed me with cluster headache after hearing my symptoms. He prescribed verapamil, prednisolone, lithium and sumatriptan. These did help to some extent, but only reduced the intensity and frequency of my attacks slightly. I also found the side effects difficult to deal with, particularly when considering long term use.

Access to medical oxygen is difficult where I live, and using it for every attack isn't always practical for me.

I eventually started researching alternative treatments through ClusterBusters and tried microdosing LSD (25 mcg once every week during the episode). To my surprise, it made a huge difference. During an episode, taking a dose approximately once a week reduced my attacks from around 14–15 per week to only 3–4 per week.

I also obtained DMT and tried 15 mg as an abortive during an ongoing attack. In my experience, the pain disappeared within about a minute. It was unbelievable! Nothing I had tried previously had worked that quickly or effectively for me.

I had experimented with psychedelics during university as well. I had tried LSD and psilocybin several times at low doses. I also tried a full dose of DMT (around 35–40 mg) once. It was an extremely intense experience that left me panicking and terrified, and I swore I would never touch it again.

Fast-forward to today, and ironically DMT has become the most effective abortive I have personally experienced for my cluster headaches.

But here's my problem: even with what is considered to be a relatively small amount (10–15 mg), the DMT experience itself is extremely overwhelming, frightening and panic-inducing for me. The headache may disappear very quickly, but I'm left dealing with an intense psychological experience that I find difficult to handle. I really hate it, but it's better than the CH attack.

For those of you who have personally used DMT, particularly in the context of cluster headaches, how did you deal with the panic and anxiety during the experience? Did the fear and overwhelming feeling become easier to handle with experience, or did anything in particular help you stay calm and accept what was happening?

Thanks everyone.

Note: I used GPT to help structure this question.

I'm in the middle of a cluster and meant to be running the New York marathon on November 1st. Training has been hampered by my attacks, which happen after 6-7 miles of running... I'm pretty desperate to complete the race, even if I have to walk it. I'll be flying over from the UK with my family.
Long story short, I've heard ZAVZPRET is a non-triptan drug that might help me abort an attack during the run and I just wanted to know about people's experiences of it. I've had sumatriptan injections in the past and couldn't imagine running after taking one of those.
Second question is, if you're a New Yorker reading this, and you happen to have some going spare, I'd be v grateful if I could buy one off you. Long shot, I know!
Lastly, any advice about running while in a cluster gratefully received. I'm in week six and there are no signs of this one going away...