r/clusterheads

My cluster headache journey — almost 40 years of trying to understand this disease

I’ve been dealing with cluster headaches for a very long time, and I thought I’d share how this all started for me.

My first one was back in the 1980s. I was driving from Washington State to Arizona in the summer and we were going through miles of blooming Scotch broom along the highway.

Out of nowhere I got a headache unlike anything I had ever experienced.

It was unbelievably painful, but it didn’t last very long. Then it happened again. And again. I think I had 3 or 4 attacks over the next few days.

I had no idea what a cluster headache was. I was convinced it had something to do with the pollen from all that Scotch broom.

Then nothing For about 5 years.

Fast forward to the fall, about 5 years later. I remember we had just turned the clocks back. I got another headache that felt very similar to those headaches I had experienced years earlier. Except this time it didn’t go away.

This was my first real cycle.

At first, the attacks were spread out. Maybe one every other day. Then they started increasing. One a day. Then two. Then three. Then five.

Eventually I was getting as many as eight attacks a day.

It took weeks for the cycle to build to that point. The pain and frequency seemed to keep getting worse and worse. Then, eventually, the attacks started tapering off. The whole thing lasted around 4 months. I had absolutely no idea what was happening to me. At one point I honestly wondered if I had a brain tumor. When the cycle finally stopped, I thought whatever strange thing had happened to me was over.

Then the next fall, almost on the exact same date, it started again.

This time the progression happened much faster. One headache a day quickly became two, then five a day. And they just kept coming.
A lot of them hit while I was sleeping or during the night. Others came in the early morning or late afternoon.

I started seeing doctors, trying to figure out what was wrong. Unfortunately, my experience was that they were often treated as if they were just ordinary headaches. They weren’t.

I don’t think there are many ways to explain cluster headache pain to someone who hasn’t experienced it. It’s not just the intensity of the pain. It’s knowing another attack is coming. It’s being afraid to go to sleep. It’s having your life revolve around when the next attack might happen.

This went on for years. Eventually I found information about oxygen therapy.
Oxygen became my best friend. At first I was using a nasal cannula and only 5 LPM. It would abort maybe half of my attacks. The key for me was getting on the oxygen almost immediately, within the first minute or so of recognizing what was happening. If I caught it early, sometimes I could stop it. If I didn’t, I was usually in for an hour or two of hell.

Over the years I kept going to doctors and trying different things, but eventually I realized I was going to have to become my own advocate. I started researching everything I could find about cluster headaches.

After about a decade of this, I eventually became willing to look at treatments outside of what I had already tried, including psilocybin.

I was honestly amazed by my experience with it. I used it as a preventive and ended up having a remission of almost two years.For someone who had spent years having his life dictated by cluster cycles, that was an incredible amount of freedom.

My cycles have generally seemed to come in the fall, and sometimes in the spring. Even after all these years, I still find myself trying to understand why they happen when they do.

Accessing alternative treatments wasn’t easy either. I didn’t exactly have a social circle where this was readily available, so that became another challenge.

I’m not posting this because I think I have all the answers. I definitely don’t.

I’m posting it because I know there are people here who are somewhere earlier in their journey than I am, and maybe someone will recognize part of their own story in mine.

It’s taken me decades to understand what was happening to me. I still have a lot of questions.
But I also have a lot more hope than I did when I was lying awake at night wondering if I had a brain tumor.

Thanks for letting me share my story. THANK YOU for having this forum available as an added resource to the Cluster Attack Survivors.

For those on a low dose 10 - 20mg of amitriptyline, does it still work?

I'm hearing various answers on this, wondering anyone who has direct experience. Old literature say's TCA's increase the effects but that hasn't been my experience.

Anyone else get very tired after an attack?
And how do you deal with it while at work?

Anyone interested in sharing their experience? Things that have worked, things that haven’t, how you got diagnosed etc.

Just gauging interest. Not sure if this is already a thing or not.

Im back in a cluster period and just thinking about all the other weird stuff that comes along with it.

If I go through a headache or even when I abort one with sumatriptan I regularly go into a blackout sleep. Like almost immediately, no dreams, no moving, no nothing. I basically teleport 8-12 hours. Its like my brain full windows resets and shuts off.

The weirdest one was on a flight from South America to Europe, 11 hours. I felt one coming on just as we boarded. Luckily, I threw up, which for whatever reason always aborts an attack when it happens. I then sat in that shitty economy seat for 11 hours, basically passed out and didn't move until I got woken up on landing. My partner told me after I didn't so much as twitch.

Does anybody else get that deep, weird sleep?

Currently going through my worst season and I want to try mushrooms (I haven't ever tried them before). I know the guidance is to wait 5 days after the last dose of sumtriptan but I can barely go one day without it. How bad is it to just take the mushrooms without waiting the 5 days?

Have noticed my seasonal CHs coincided with ragweed season. Started taking Zyrtec and it has definitely cut down on my CHs and also on shadow headaches. My Accupuncturist said that people who have a lot of histamine issues also have a lot of gut issues. This is true for me. He's going to look into some herbal recommendations. I also started on homeopathic Histaminum Hydrochloricum 30C

This cycle has been lasting about a month so far and no sign of diminishing intensity or frequency so I've decided to bust out the MM for an attempt. My cycles are usually winding down approaching 4 weeks so I'm getting pretty irritated and loosing lots of sleep due to nighttime attacks.

I only took 0.75g yesterday to feel out this batch for the first time. I most definitely felt the effects and it was not very subtle but nowhere near full blown recreational experience either which sounds like a good dosage based on what I've read. Decent body high like roller coaster stomach which I don't mind lol, some minor visual waves and breathing.

While on this dose I felt strange sensations going on in the exact area where my pain usually is. It was kinda shadow feeling but different, like there was some reworking going on, not really painful at all. I took this to be a good thing? I haven't really had a proper experience busting before as my previous attempt a couple years ago was with some product I had lying around and lost it's potency so that was a bust, pun intended.

Just curious if anyone has experienced that sensation before and if it could be taken as a good sign. I do have a very mild shadow this morning as well. Slept through the night with no attacks. I'm feeling hopeful but also hesitant.

So just a little about my experience with cluster headaches first. I got my first cycle in 2014 and my second cycle was 4 years late, ever since then I get a cycle roughly about 1 1/2 years apart give or take a few months. My cycle then last 2-3 weeks where I get one everyday. I take Sumatriptan and it works, although not as fast as I would like, and my question is, is Emgality a viable option for me to try? My fear is, I don't want to take something that might disrupt and make the time between my cycles shorter or last longer. I know everybody's experience is different I just want to know how Emgality works for those who have tried it.

Hi all,

Well, that's my question basically. I have chronic cluster headaches with daily attacks, mostly at night.

And where I say 'I have' it should actually be 'we have' as I am, or rather we are, also diagnosed with DID, dissociative identity disorder.

I don't want to go into real detail here, mostly because I guess the combination of the two is probably very rare and therefore unknown or not interesting to most or maybe all of you.

But as I guess that our DID frustrates or at least impacts our cluster headaches different from 'normal' integrated, or whole, people, it would be really nice to share experiences with someone like us.

Thank you

In this episode of Cluster Chronicles, we sit down with fellow cluster head Craig Stewart for an honest and personal conversation about his journey living with cluster headaches.

Craig shares his experiences with the condition, the impact it has had on his life, and the things he has explored along the way—from Vitamin D and microbiome health to inflammation, psychedelics, oxygen access, advocacy, and the importance of community.

This conversation isn't just about treatments and research. It's also about the personal and psychological struggles that can come with living with cluster headaches, personal growth, learning to give yourself grace, and finding people who truly understand what you're going through.

I wanted to share my successes with eliminating attacks by inciting brain freezes as I think it is very compelling and has drastically improved my quality of life while in a cycle.

Around two years ago I was in a very long and intense cycle. I was having an attack and was looking for any sense of relief as many of us do. I have a home made cold plunge so I decided to get in while having an attack. To get some relief, I submerged my entire body and head under water for as long as I could hold it under water. It gave me an intense brain freeze. Within minutes the attack was completely gone.

I wasn’t sure if that was a coincidence, so I began doing that for every attack I had at home and over the past two years, I have been able to eliminate almost every attack I have had at home with a nearly 100% success rate. This works for both shadows and full onset attacks.

I was researching the science behind this a couple days ago and came across a testimonial of someone who has had similar success with inciting a brain freeze by getting a large glass of ice water and drinking it as fast as he could to get a brain freeze. I tested that with an attack and it also eliminated it IMMEDIATELY.

This is the only thing in almost 8 years of dealing with cluster headaches that has given me confidence with being in control and having something to combat an attack.

Please try this for yourselves and share this with as many people as possible. If you try it and it works, leave a comment in here and let me know.

This could help so many of us!

P.s. if anyone is interested in the cold plunge build I have, I would be happy to share links to all the components. It was very inexpensive compared to prebuilt options and has been a heaven sent for me dealing with clusters.

Good luck everyone!

Title. I (25F) went to the ER last night after waking up with severe right eye pain and pressure with nausea. (pain rated 7/10). I was restless and panicked and found it hard to focus, which was very abnormal. Disappeared rapidly after about 30 minutes awake with it, went to the ER anyway worried about losing my eye. Scans done, nothing going on in my skull. Doctors called me a "textbook cluster headache case" which is odd because I've had exactly one, but I put at least a bit of trust in medical professionals. I wasn't that worried, they didn't make it sound terrible, and I was just glad I wasn't going to lose my vision, but everything I've learned about cluster headaches since is extremely anxiety inducing.

Now I'm left with a moderate confidence guess from the ER that I just had my first cluster headache and I'm not sure what to do. I'm scared to go back to sleep and the uncertainty is killing me. Is this a typical first experience? 7/10 to start with before moving on to the "real" 10/10s? I'll be seeing my doctor as soon as reasonable. Any advice in the meantime? How does anyone with cluster headaches possibly not have insomnia during their clusters? Anything would be helpful, thanks.

EDIT: Thanks all to the words of advice, had some terrible sleep last night and I've been skeptical of every little bit of head pain I've gotten all day but no further episodes. Some clarification based on comments: I did have autonomic symptoms, significant tearing in the affected eye especially near the end, but nothing nasal. Also want to reassure that I'm working on getting appointments right away, apparently the ER documents did put down a CH diagnosis which does seem a bit early, considering the main characteristic, but it'll be helpful getting everything in order just in case. I'm still really anxious and uncertain but everyone's responses have been helpful, thank you all.

Recently my neurologist prescribed me a dosage of sumitriptan injection. It's 1mg dosage and it seems to giving me absolutely no relief. Is it normal?

What dosage are u guys using?

Day 5 without an episode. Some minor shadows but that’s it. I’m dying for a beer with my dad… If I have a beer and it triggers it, will the cycle begin again?

Hi everyone, first time poster. I’ve had a diagnosis of episodic cluster headaches for the past three years. I’m in my longest bout so far and it’s really starting to get me down. I rarely am able to work, see my boyfriend, do any hobbies. I sleep badly because of anxiety about waking with a cluster (which I do) and feel anxious and guilty the whole day about getting more and letting people in my life down. I’ve been having some really dark thoughts and just wanted to ask if anyone has any advice or tips about keeping mentally well during a bout? Thanks🩵

Hi fam,

Ive had my cluster headaches generally under control for past few years but im having a rough season now. In the time since my last real season of cluster headaches I got into nicotine pouches (Zyn, On!), cold plunges, and sauna sessions.

I’m wondering if any of you have experience with any of those three items during your cluster season? Have you found that any of them make your headaches worse? Have you found that any of them make your headaches better?

Would love to hear the wisdom of the crowd on these.

And for everyone going through it now, godspeed. Im here with you.

I feel so stupid for asking but I’ve seen people on tiktok find their diagnosis from Reddit - so I figured I’d try as doctors have been no help.

Since I was a child, I’ve had headaches everyday. I cant remember one day I haven’t had one. 6/10 times, they’re what I call regular headaches. Your basic pain, just strong enough that Tylenol doesn’t touch it. Usually goes away within a few hours and then I’m met with another a couple hours later. In these headaches, my pain is either near both ears, or full head pain. Not located in too many specific spots.

Now 4/10 times, I have these headaches that will wake me out of my sleep. Crying of course makes it worse but the pain is so bad I can’t help it. The back of my head, close to my neck, and behind my ears will hurt so bad it feels like my head is going to burst. Gravity makes these worse. Leaning over, bending over, or talking too much makes the pain so unbearable I have to close my eyes and stay still to keep from moving and making it worse. I notice that during these, my pupils shrink very small. Almost pin point size of a pen bead. But there’s not much strain in my eyes like I would have if it was a migraine, and light doesn’t seem to make them worse.

Often with my headaches, I get nauseous. But I never throw up. But it makes me so nauseous I can’t eat. I eat like a bird, very small amounts in large amounts of time. Yet I keep gaining weight. Im bloated all the time, and one cracker will make me look 4-5 months pregnant. I cant lose it no matter how much I work out. I try to eat more protein when I can eat, that way im not only preserving junk.

I’ve been tested for Hashimoto’s. My thyroid is fine, all my blood work ALWAYS comes back normal. I’ve had a head and neck CT done that supposedly showed no issues (this was after a wreck I had, but I’ve had these issues since a child).

I stay away from drugs, drink rarely, and have a history of BP drop and fainting. On a couple of occasions, I had sezuires, but doctors don’t believe me. These were witnessed.

This all could be unrelated, but my memory is terrible. I have ADHD and can’t focus much anyway, but my memory is so bad I failed out of school due to not memorizing anything no matter how many hours I studied.

When I’m stressed or nervous, or upset, I have nosebleeds. I’ve had these since a child too. Doctors always say it’s a dry nose and I’m fine.

I want answers, and I can’t seem to find them. Any advice is very helpful

Considering how effective mushrooms are at aborting/ breaking cluster headaches, I wonder if methylene blue could be a legal alternative on how it regulates your serotonin levels through similar mechanisms.

Has anyone experimented with this?