r/clusterheads

I am a 40 year old male and have suffered from episodic Cluster headache since I was 24 years old. My cycles happen generallyonce every 2 years, beginning almost always in February and lasting until about April or May. This year has been different. It is now June, and I am still getting attacks. I have taken several rounds of prednisone and every time the dose decreases or I run out they come back. Sumatriptan is helpful and will generally successfully abort an attack, but you can only use so much of it and only so often. My last 6 doses of nasal suma lasted me about 10 or 12 days. I don't use it consecutively because it wears me out the next morning if I do and I don't want to make things worse with rebound headaches although I think that might be happening anyway. Thi gs have progressed from having one cluster headache attack a night and then getting to go back to sleep once I suffer through it to now literally every time I lay down to sleep an hour later I will wake up with an aura that progresses into a full blown attack and then when I lay down after that it happens AGAIN. And again.

I saw my GP yesterday to schedule an appointment with a neurologist and get an MRI and he wrote me a prescription for Nurtec which is a migraine medicine and isn't going to do shit for me. I wrote him a couple of messages describing in greater detail what is actually happening to me and the mechanism behind it and haven't heard back yet but I am not hopeful. Normally these fucking things will have gone away by now but this time they haven't and I there is no way in hell I am going to be able to just suffer through this repeatedly every night, with zero sleep, for weeks or even months waiting on an overbooked neurologist to see me. I am at work right now after having attacks all night last night and am feeling extremely, terribly desperate. It is getting to the point where I am afraid it will begin to debilitate me. The sleep deprivation alone is making me feel fuzzy, unstable, and crazy to say nothing of the excruciating pain and stress. I just don't know what the hell to do, but I absolutely had to clarify to the GP what was going on because frankly I don't have the capacity to fuck around with a god damned migraine medicine when what I probably need is a nerve block or oxygen, both of which I asked for specifically. I would never go through with it, but this cycle being especially brutal has me thinking the otherwise unthinkable at times. God damn I just want them to go away....

Does anyone know of a reliable place in or around Westchester County NY the supplies Oxygen?

I was finally able to get an appointment with a neurologist. Who confirmed I am suffering from cluster headaches and the first thing he mentioned was using oxygen as a treatment. But he doesn't want to give me the prescription until I know it is an effective treatment for me. He suggests going to the ER or an urgent care during an episode and tell the Dr. I am suffering from a cluster headache and need pure oxygen. - Which brings up a couple problems - Theres no way I could get myself into a vehicle to get there. And if I did, I'm almost sure by the time I was admitted, the cluster would be gone. I discussed this with him but was still reluctant to prescribe.

Anyone have any ideas for a work around for this?

Hi all, I’m happy to find this subreddit and appreciate the support here. I’ve been officially diagnosed with cluster headaches and am on short-term disability from work. My last cycle started about two weeks ago and was severely affecting my ability to focus at a high-demand job.

I’ve seen doctors and tried steroids, Nurtec, vitamin D3, and Emgality, but I’m still in a cycle. Five years ago I thought it was sinus-related and had turbinate reduction surgery with an ENT. Now, with a new specialist and ENT, they think it may have been a coincidence that my last cycle ended around that surgery.

I’m looking for any suggestions or experiences that helped others get through a current cycle. What has worked for you, and what should I try next?

Just had a random thought that maybe there's a connection between cluster headache sufferers and people who never experience "brain freeze". I've had clusters for years and can fairly confidentially say I've never had brain freeze. When people talk about it after having a slushie or something I have no idea what that feels like.

https://www.vice.com/en/article/why-dont-some-people-get-brain-freeze/

I mentioned this elsewhere, but thought it deserved a post of its own. At the link is a summary report on all of the research to date on the circadian and seasonal rhythms of clusters. https://pmc.ncbi.nlm.nih.gov/articles/PMC12960194/

Mark Burish, the lead author, is a medical advisor to clusterbusters.org

I don't claim to understand all of the statistical presentations, but the authors do a fairly good job of explaining them.

Here is the abstract:

>Cluster headache attacks display uniquely rhythmic patterns in their manifestations. Multiple international studies have shown circadian and even circannual timing of attacks, although we do not yet fully understand the effects of culture, sleep, chronotype, seasonal changes, temperature or inter-individual changes over time. Multiple cluster headache treatments alter the core circadian oscillator, although they affect the oscillator differently and are not well understood. Multiple small genetic studies have shown core circadian gene variants to be cluster headache susceptibility genes, whereas larger genetic studies have not shown core circadian gene variants but have also not documented the presence or absence of circadian rhythmicity. In this narrative review, we describe the multi-level circadian features of cluster headache and propose future circadian directions, including a clinical definition of circadian attacks, a potential animal model of circadian headache and study design changes to incorporate circadian features into larger genetic studies.

This is embarrassing but does anyone else struggle to control their bladder if they throw up?

I'm a fit and healthy 33 year old man and generally I have good control but if I throw up I'll often have an accident which makes the whole thing more miserable

I made an eyepatch from a sock and a keychain. This helps me actually what the hell. I don’t want to give false hope but can anyone else confirm this? It might not work for anyone else but for me it keeps the pain mild though not taking it away completely. Its like since 50% of my vision is gone so is the pain. No sumatriptan even needed today

Let me know in the comments

I've had episodic cluster headaches for 18 years and I'm currently about 6–7 weeks into a cycle.

My attacks usually start with a strange pain that seems to originate on the right side of my neck and then travel upward toward my eye. As the attack intensifies, the pain eventually becomes completely localized behind my eye. That's when I know I've reached the peak. The pain turns into an intense burning sensation, and both my eye and nose start running heavily.

I typically get between 1 and 4 attacks per night. One thing I've noticed is that my nose often makes a popping sensation just as the attack is beginning to subside.

I've also discovered something interesting. If I drink Turkish coffee about 3–4 hours before going to bed, I often don't get any attacks during the night. If an attack does start, I immediately drink a cup of Turkish coffee, and after a while the attack goes away.

I also use Red Bull, which helps when an attack is already starting, but drinking Red Bull a few hours before bedtime has never prevented attacks for me the way Turkish coffee seems to. Can add that I've test every type of coffee you can think of but the Turkish one seems to be the one to use.

Just want to share my story.

My CH started at the age of 13. I'm 35 at the moment, but I was only officially diagnosed with CH 4 years ago. I respond well to oxygen. Historically, my active CH periods occurred every 6 months and lasted 1-2 months.

I was also diagnosed with autism and ADHD 2 years ago and started taking the medication cocktail mentioned in the title. As a side effect, my CH went into total remission. I haven't had a single headache since then.

Do doctors research the effects of dopamine agonists/stimulants on the hypothalamus? It seems like a valid area of study, since the hypothalamus is rich in dopaminergic receptors and CH is known to involve this part of the brain.

I realize how horrible I sound, but I am here to learn (and correct myself if need be).

I wish I could show you this person's social media. Damn near every second post is of injury and bruises, the mishaps that caused them, illness, mental illness, conditions, pain, suffering and the like. It's almost never serious. It plays more like they enjoy being ill/broken/compromised. In the sort of "look at me! I have a booboo! Look at me! I am sooooooo sick!" way.

Its gone on for years.

Recently they started posting about how they were having active cluster headaches, with filtered and edited "feel sorry for me" selfies to match.

My ex had cluster headaches, and as I understand them, that and some other things aren't adding up.

I suspect she's faking it because:

- Aren't clusters so intense, using phones - let alone posing, taking selfies, editing them, and typing a sob story would be impossible or at the very least extremely unlikely?

- The first time they said they were on day 3 of a headache. But aren't clusters intense, almost rythmic bursts of pain, not consistent and ongoing like migraines?

- the language they use. I don't want to quote them in case they're exposed, but something about the way they talk about them gives me the impression they don't know what they are and are googling as they go. Like, they've gotten things even non-sufferers are well aware of wrong.

- Their solution seems to lie down with hot/cold packs (and take photos). Obviously people handle pain differently, but that seems a bit too comfy.

- They have every special attention diagnosable condition on earth. It's becoming difficult to believe. I can't help but think they recently learned of clusters, and added them to their collection.

- Also isn't June migraine/headache awareness month? Right on time.

Now, I just want to emphasize: I don't mean to sound like an ass. I know every body is different, and there is no blueprint or standard for how we tolerate (or even acquire) pain. I also know clusters aren't the most studied thing on earth, and there is still much to learn and document.

But considering this person is ALWAYS ill, and they're always making a show of it, never to raise awareness, just to be seen having them...

I'd like to know, genuinely, from you guys. Based on this description, does it seem sus to you? Or am I really just being a dick about it?

P.S. I get horrible migraines, but I have never had a cluster headache. My ex is the only person I've seen battle with them.

My doctor said that this would be a good option so i don’t have to take medication anymore. But he also told me that mostly older people do the operation and i am quite young still (m28)

There seems to be growing mechanistic case that GLP-1 drugs (semaglutide, liraglutide, tirzepatide) might help cluster headaches, but I can’t find much real-world cluster experience. And all of it is independent of weight loss.

If you’ve taken a GLP-1 for any reason while also dealing with clusters, I’d love to hear:
1. Did it help your clusters?
2. Did it have no effect?
3. Or did it make them worse?

If you’re willing, please mention which drug, the dose, and whether you’re episodic or chronic. Bonus points for noting whether attack frequency, intensity, or both changed.

The short version of why this might work:
• GLP-1 receptors sit densely in the hypothalamus, which is the region most implicated in generating cluster attacks
• These drugs lower intracranial pressure by reducing how much spinal fluid the brain produces, which may calm the nerves that fire during an attack
• A 2025 pilot study found liraglutide cut monthly migraine days by about 9, and the effect had nothing to do with weight loss. The authors think the drug reduces calcitonin gene-related peptide release upstream, rather than blocking it the way the current cluster preventives do
• A 2023 trial showed exenatide lowered intracranial pressure in patients with idiopathic intracranial hypertension

There are no trials in cluster specifically. Hence the question. Even a handful of data points would be valuable, and if there’s a clear signal I’ll write it up and share back.

Sources:
• Braca et al., Headache 2025: https://headachejournal.onlinelibrary.wiley.com/doi/10.1111/head.14991
• Mitchell et al., Brain 2023: https://pubmed.ncbi.nlm.nih.gov/36907221/
• Krajnc et al., Journal of Headache and Pain 2023: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10353241/
• Botfield et al., Science Translational Medicine 2017: https://www.science.org/doi/10.1126/scitranslmed.aan0972

I'm using mushrooms / dmt vape in an attempt to bust my current cycle, first time I've tried it out properly (not touched zolmig or other potential blockers at all).

First shadows appeared on Wed night and the following morning (stormy night in a heat wave at my typical worst time of the year). I dosed 1g mushroom tea (libs) on Thurs eve and I'm due a second dose today. Shadows and headaches continued but then Saturday was almost entirely clear.. the shadows were back on Sunday and then i had worst CH yet this morning.

I've got a proper dmt vape this time around (0.25g/ml). The efficacy has been staggering - melting away most incoming attacks in seconds! Used it with great success 3 times over the weekend. Then i tried vaping this morning and it didn't have the same effect - similar dose and mild visual/ body high but the pain kept coming on. I didn't want to be in 'the jungle' with a full on CH so i stopped trying that! It then progressed to a bad 6-7 pain but the attack lasted <1 hr which is short for me.

I've not used the vape more than once per day - enough to feel it, see colours, geometric patterns, but not feel too spannered. Am i shutting the door by over using the dmt for aborting? Either on the dmt itself, or on the slower action of the psilocybin doses? I found one thread that suggests no, it wont do that - but would love to hear other experiences which may help me understand things better...

I'm sure this method can work for me but i really don't want to fuck it up now. Is what I've seen pretty usual in terms of rebound / slap back headaches - i just need to keep the faith and crack on with it?

Is it normal for dmt to stop some attacks and not others (most people swearing by it seem to find it very reliable). Should i just huff more if it's not working at a lower dose? Anyone know if dmt can shut the door on shrooms / itself?

Cheers 🫠

I have suffered from episodic cluster headaches since I was a teenager, about 35 years now. As with most people with CH I have been to a multitude of doctors and have tried any number of medications to try and treat cluster headaches during my episodes. My favorite quote from the many doctors I saw amd explained that I have CH to was "OH Shit, there isn't really a known treatment for cluster headaches."

In 2022 the beast came back to attack with a vengeance, 8 to 10 attacks a day, waking up nightly, you name it. This also triggered the migraines I am also plagued with. My wife and I kept searching for a solution outside of the normal protocols which were not working, prednisone made them worse BTW.

In a complete coincidence during my online resaerch I ran across some stories talking about psychedelics as a possible treatment. This was right around the time Colorado passed the law for the decriminalization of natural psychedelics which included psilocybin.

At the time I had no idea how to grow the psilocybin containing magic mushrooms but I set to work and taught myself how to do so. After 3 months of repeated attacks I was finally able to finish my very first grow of magic mushrooms in the safety of my own home. The day before I met with one of the top neurologist experts in Colorado I tried my first dose of my homegrown mushrooms. I drank about 2.5g of magic tea. After 30 minutes or so I got the first relief since the CH attacks started occurring 3 months earlier. They came back immediately after the mushrooms wore off, but the 8 hours or so without an attack was a god send.

Fortunately the next day I was prescribed emgality* which worked to put the CH back into the shadow realm but I was at a dose of 3 injections per month which took about a week to kick in and were at a cost of $2,200 per month. This went on for three months until I was able to slowly ween myself off of it by consuming a dose of mushrooms every couple of weeks until the CH attacks finally subsided.

I am now four years into submission which I attribute to my protocol of magic mushrooms. For me, I take a day off from work and dose 3 to 3.5g of mushrooms every 2 to 3 months or if I feel my neck tightening up, which is where my CH usually starts. This has allowed me to keep the CH into remission which is now four years later.

All of this inspired me to start a local educational business with a mission to educate beginner users on the safe use of Magic Mushrooms. Of all the people my company has worked with to educate on safe use, and the people we have been helped with this information, we have only been able work with and help two CH sufferers. I am not sure how to get the word out that we are here as a resource.

I am posting this to let the community know there is hope when it comes to CH and to offer us as a recourse for growing and dosage advice. Since I am located in Colorado I am happy to provide local support to the community of CH suffers. Additionally, for sufferers outside of Colorado we are willing to provide information and advice as well.

Please help to spread the word and feel free to send a chat message with any questions you might have. 🍄 ❤️

Hello everyone.

My next cycle is probably coming in October or earlier and I have gotten myself some cookies that have psilocybin in it. I have no intention of tripping or anything and I don't take any recreational drugs but my last cycle was so bad that I almost thought about ending it all and that is the reason I have thought that this time I will prevent another cycle before it comes because I don't know if I will survive this cycle. There's a lot of stress in my life, and it will probably be like this for another few years.

I feel safe sharing all these here because you guys are genuinely the only one that understands the pain. I have been diagnosed with CH almost 10 years ago and ever since then the remission period kept increasing from a year to 14 months then 16 and the last one was 20 months. The pain also seems to increase than the last cycle. Also, I have never tried oxygen therapy because it's super expensive here in Finland and CH is not seen as a disability as far as I know, so there's no state support for it.

Now my question is, I take Escitalopram 5 mg, Bupropion 150 and Ketapinor 25 mg. Will the psilocybin work with all these meds? I have read here in this sub that SSRIs and other physiatric meds block the psilocybin or something. In this case, what would be your suggestion to make the psilocybin work? One of my friends gave me a chocolate bar containing 5 g of shrooms mixed with it. And I did try it but even after having half the bar like 2.5 g of shrooms, I felt absolutely nothing when I saw my other friends tripping like crazy. In this case, will an increased dose help? Just as I have mentioned, I don't want to trip, but I will if it makes me stay away from the beast.

I am sorry guys about the long post and for people that are going through a cycle, you are stronger than this brothers and sisters, you have gone through this numerous times before, and you will get through this mess. But make preparations so that the next cycle never comes or is shortened as much as possible. Please hang on. We can beat this together. You are absolutely NOT alone.

Hi,

I’ve successfully busted my cycle once 2 years ago using mushrooms. I’m not quite sure the strain I used however I never had a visual overwhelming trip.

I entered a new cycle around mid April, I’ve taken 4 doses, the last dose using 1.5g lemon tekked Albino Penis Envy strain. This caused an extremely overwhelming, emotional, visual trip. Very unpleasant.

This huge trip however did in fact help severely weaken my cycle, as I have not had a single full blown attack once since then, however abt once a week I get a slight shadow, today I got a moderate attack abt a 4/10 which signifies I’m still in the cycle.

I have abt 28 gs left of APE (albino penis envy) and I really don’t want to have an unpleasant visual trip again however I believe if I take one more small dose, the cycle has a high chance of being busted.

Is there anyone who has any suggestions on the amount I should take for this next dose? I was thinking .3-.5gs, but I really don’t want to visually trip.

Some other people have suggested to change the strain so I don’t have the potent trip but I spent a good amount on this ounce (specifically for busting and future busting), and I have no other sources to buy.

Anything helps! Thank you guys.

Hello

I experience all the tell tale symptoms of cluster headaches. I get them once a year around spring time for a couple months the same time every day. I feel the headache on the right side of my head every time with the pain focused on around the back of my eye and temple.

However, the one thing I find different than most people is the level of pain I experience. While my cluster attacks are very intense and painful, usually making it so that I can’t focus on anything else, I would not say it is the most painful thing I’ve ever experienced. They hurt like a bitch, but I’ve never felt the need to go to the hospital and I usually keep somewhat of a level head. I wouldn’t consider myself someone with an unusually high level of pain tolerance either.

I’ve heard stories of people bashing their heads against tile to try and knock themselves unconscious to escape the pain, or even people on the brink of suicide because they can’t take it anymore. It’s got me pretty freaked out if I’m being honest; I feel like I’m waiting for the “big one”. It’s also got me wondering if I’m experiencing a different type of headache all together. Have I just been lucky?

Any help? Started a cycle yesterday.... started pretty dull and went away. Just had my first 20 minute ice pick since a 2 yr remission. Any tips to get through this quick?

I’m not sure if my headaches have returned, I was scheduled to go back on verapamil in July because every August they usually come back… but the past week I’ve had really mild one sided headaches that didn’t last long and ibuprofen helped, I thought it was me needing a new prescription. But yesterday at work I randomly got a brain freeze and didn’t think much of it. At 5am this morning I woke up with a bad one sided headache and it just kept getting worse and worse till around 5:45 but I’m not sure if it’s my clusters because the pain was the same, it was one sided, i was hot, and got nausea and shaky. But i didn’t feel the pressure as bad behind my eye and my nose and eye didn’t water. Another thing that was different was the pain built to 5:45 but then till 6ish it would stop for a tiny bit then come right back at the same intensity but the breaks kept getting longer and longer till I fell asleep. Do you think my clusters are back or it might be something else?