Hi Everyone, I've been suffering from Cluster Headaches (seasonal) since more than 5 years now and I've finally understood what really causes it or aggravates it apart from the usual season change.

In my case, it's the trapped gas/air inside the body which somehow could not escape through either farts or burps, it travels straight to the head somehow (i don't know why exactly in scientific terms) but the trapped gas is the main culprit in my case. Smoking or eating foods that cause acidity makes it worse. I've found several ways to deal with it and now finally I can abort it using various methods. Even if it doesn't completely go away, the pain scale dropped from a major 9 to a hardly 3-4.

Hit me up if you want to know more about how I prevent/treat them NATURALLY.

NO MEDICINES REQUIRED.

I just had a 10/10 deep headache and had to avoid using my sumatriptan shots because tomorrow I want to try shrooms.

3 years ago, I tried shrooms during my cluster last summer, broke my cycle entirely in 3-4 days, and I haven’t had headaches since until this year. (Too much time in the sun and a few alcoholic drinks brought them back)

Anybody else have experience with shrooms for treatment/prevention? I’m honestly just posting cause misery loves company and need community to relate to right now as I suffer.

So for the past week or so, I’ve been having an on and off headache that’s only taking place on the left side of my head. It’s mostly a dull tightness/soreness, definitely uncomfortable and it can definitely be worse or better at times. It almost makes my eye feel heavy? And tends to develop later in the day. I have had an off sleep schedule and I’ve been taking my low-dose SSRI meds at inconsistent times occasionally, but this is out of the blue for me and I’m wondering why this could be. Could it be tension or possibly a cluster headache? on a scale from 1 to 10 I’d give the overall pain a 5. Definitely more uncomfortable than excruciating. Any responses or advice much appreciated and needed.

18 y/o, yesterday night i logged my symptoms, something i should’ve been doing as soon as i’ve been having these headaches nearly every day with seemingly no cause besides “bad posture, lack of sleep”. last time i went to my PCP (im on an hmo plan) i incorrectly assumed maybe i have migraines and he seemed to have gotten upset with me and kept interrupting when i was trying to explain my symptoms. he kept dismissing everything as me not getting enough sleep and simply tension headaches, even though i told him i get a stabbing pain in my eye and temples, one sided always. in his defense though, i don’t think i keep good enough track of my symptoms, he advised i keep a diary.

i’m wondering if i should try to go back to him again with the more complete note i wrote seeking a neurologist referral, but part of me feels like i’m being dramatic and i shouldn’t try and just wait it out, and i feel afraid he’s going to dismiss me again. but the pain is really excruciating, and i think i answered him incorrectly last time when i said “i think tylenol works kinda?”, at which he got upset bc of my wishy washy answer.

anyway, here is my “log”, its kinda word vomit sorry:

jul 16 3:50ish - fell asleep around 2, woke back up around 3:30 with a stabbing headache
woke up to a bad headache in the rifht side of my head - right eye, right temple, runny nose. feels like the right side of my face is drooping. i felt hot/woke up in a sweat so i went to go turn on the ac.

i want to rely less on tylenol bc it feels too slow acting and only seems to make me able to think properly rather than fully mitigate the pain. its also just not working, close to an hour in there is no improvement.

ive been having them in a pace that seem to be like cluster cycles, near daily at least once a day, but i was fine a couple days before so i thought it had gone away. ive had these kind of headaches in the past before, but i dont think ive had the “cycle” last for so long before.

i also just started wearing my nightguard again.

possibly triggered by the wildfire smoke today? i think i have episodic cluster headaches, i also have had lifelong exposure to second hand smoke.

whenever i get these kind of headaches its usually an hour or so after ive fallen asleep or right when i wake up. the pain is causing me to lose sleep, i want a referral to the neurologist to see if it is cluster, since its considered rare but seems to have a correlation with adhd since it affects the same part of the brain and is triggered by the bodys internal clock.

i hardly get tension headaches and when i do i just relieve them by eating or drinking or exercising/stretching. i have not really taken my concerta in a while/not regularly, on drug holiday, so i doubt it is being caused by it.

35M and been suffering from clusters for ~10 years. I generally go through the summer cycle, 1-2 attacks/day, and average 18months in between cycles. This community has been very helpful as I've experimented with various remedies over the years. Alcohol, intense workouts and saunas are guaranteed triggers and the middle of night attacks are quite common. I've tried all sorts of things to abort: ice packs on head, neck massage, chugging Red Bulls, chugging ice water...all have variable success rates.

This year's cycle started beginning of July and I decided to really lock-in on all measures. 480mg Mag Glycinate, 10,000 iu VitD (with Vit K), 12-15mg Melatonin at night. I also did 2 doses of mushroom microdoses, 5 days apart. Looking back at my historical logs, this cycle does seem to be more mild compared to previous attacks but I can't say forsure if it's due to the supplements or because I am more aware of my triggers this time around (complete abstinence from alcohol, nicotine, thc, intense workouts, intense heat).

After having one night of a 9/10 attack, I decided to see a headache specialist referred by my neurologist. Yesterday, I received nerve blocker shots for my occipital and trigeminal and today I am starting a prednisone steroid course. I will try and give updates to see if this treatment materially improves the attacks or hopefully stops them head-on. I've learned a lot from this community so just wanted to share my data points as well.

Genuine question for the community. I've been going down a rabbit hole on what might tie our attacks together. I built a big database of the CH literature and ran what's basically adversarial research with Claude Code — instead of asking the AI to agree with me I had it create multiple virtual researchers that try to disprove and debate every idea and demand a real source for each claim. What kept surviving was the same three-way intersection: low oxygen (hypoxia via hif-1a and h1f-2a), the body's internal clock, and the brain's support cells (astrocytes) — which, it turns out, actually help drive the master clock in the hypothalamus.

The rough idea: a genetic or (epigenetic) vulnerability allows repeated  oxygen dips (sleep/apnea, smoking, altitude) nudge the clock out of rhythm which sets the timing aspect of the attacks (why bouts, why fixed-hour attacks), while low-grade inflammation (Astroglial, trigeminal/CGRP side, mast cells, microglia and systemic cytokines) opens the door for the actual hit (the trigeminal mechanism). It even seems to fit episodic vs chronic (clock resets vs. stays stuck). I finally think feel the atrocytes are really helping install the neurological "bout" by reorganising brain connexions due to this inflammation / hypoxia / clock disturbance answer. 

I'm just a patient connecting published dots with a lot of help from AI — not a doctor, not claiming anything. Mostly I want to know: has anyone else read into this direction, or seen researchers chasing it? Any papers, contradictions, or "nah, here's why that doesn't work" are very welcome. 🙏

How does cluster headache progress with age? Does it get better or worse over time? I've been dealing with this nightmare since I was 20, and now I'm 34 with no sign of reduced frequency or intensity. I've had two cycles this year, and it's exhausting. Doesn't cluster headache get better with age?

What is the best treatment anyone has tried? I know everyone is different but I hear a lot about DMT vapes and mushrooms. I’m desperate for some information on where to get some of these treatments and or micro dose capsules of mushrooms.

Curious if this would be helpful for our condition.

Has anyone studied how these time shifts affect Cluster Heacaches? Or do do you have an opinion based on experience?

My most recent cycle was in March, right after the time change this year...

https://www.youtube.com/watch?v=i52Nfae0eHc

I am in the middle of this years worst cluster (yet,) i am exhausted from being in pain this much and i cant stand it. My sleep pattern is all messed up as usual: I am either woken up by the pain, wake up with the pain before work or sometimes even get attacks before bed. In that case I obviously can’t sleep until the pain subsides, not only because I will otherwise wake up in pain, but also because it’s way too painful to sleep lol I usually just pass out in a daze… Night attacks are usually more rare to me but they are perfect day ruinera.

Right now I’m pain free and I really really wish I could take a nap! But I know that there is a 90% chance I’ll wake up and get an attack… And I can’t afford that today after not sleeping yesterday! However there is also a chance that tonight’s sleep will get messed up so maybe I could use those 10 minutes… (CH really messes with you psychologically)

I’m full of caffeine ofc, but also of triptans, which doesnt help. Writing this has helped keep me awake!

I have a visit this week, but in the meantime I really could get some tips on how to stay awake during the day… and not nap in those few and very, very precious pain free moments… help…
(If you have tips on how to take short naps without waking up screaming, I’d also take that)

For the past three weeks I’ve (42F) been suffering daily chronic painful headaches that are new to me. I’ve had migraines for the past 25 years but these are not migraines. I finally dragged myself to the doctor yesterday and she is baffled by some of my symptoms/triggers but she thinks they’re a bit clustery. She is going to do an e-consult with a neurologist to build a treatment plan and ordered me a CT scan to rule out scary stuff (my dad passed away from brain cancer). But in the mean time I have no additional treatment other than the 600mg ibuprofen I’m popping like candy that does absolutely nothing.

I’m just waiting for answers and official diagnosis but man these are truly the most painful awful headaches I have ever experienced. Is there any OTC treatments I can try?

Hey r/clusterheads

Suffered from daily headaches, and eye related problems for the past few years and mostly built this app to use for my own healing. And now that I am like 90% recovered decided to clean up the UI and share this small sideproject of mine to everyone else too for free and without any ads.

Here's a quick summary:

Desight

An eye strain reduction app based on the 20-20-20 method, to make your daily screen usage time more manageable. Just set the timer to either 20 or 30 minutes and get a reminder to take a pause and let your eyes unfocus for a moment. Leave the screen on and place it on your desk, this allows you to also take time off your tiny screen.

This has been a tremendous help own my own part. I used to get completely blurry and dry eyes by the end of my daily work hours, but a proper posture corrections and the 20-20-20 method cured pretty much all the problems. Still working on getting the posture right, so also added a reminder for that.

Other basic functions for the 1.0 release include

- Dark and Light mode

- Minimal but easily noticeable alarm graphics

- Multiple shapes to customize the look of the app

- A regular (currently once an hour) reminder to correct your pose

- Low battery mode to reduce the battery drain of the app by 60%

Please let me know if you have any ideas on what to include, I would like to make this app as useful as possible, while still keeping the ui and the usage as minimal as possible.

*Currently planning to add:

- Possibly mild haptic patterns for the alarm too

- few more ui tweaks and themes

- reduce the battery drain even more (possibly a new engine to alternate the load on different parts of the app)

-Possibly a relax zen mode without the counter

**DOWNLOAD LINK**

Desight – Google Play

(https://play.google.com/store/apps/details?id=com.repomedia.desight)

EVERYTHING IS FULLY FREE AND DOESNT CONTAIN ANY RESTRICTING ADS

So I have heard that micro dosing mushrooms can help with cluster cycles, is this true? Has anyone tried this or researched into it? I’m about to try researching it myself but thought I would ask here first. I’m not the patient I’m just a man wanting to help his wife.

I get episodic cluster headaches but not seasonally. The only trigger for my cycles seems to be flight travel. Every time I fly, the cycle starts a couple days after I land and gets progressively worse over the next month until it subsides about 2-3 months after the onset. This pattern has been consistent over the past 5 years.

Is this the case for anyone else? If so, have you had any success in preventing the cycle?

Our neurologist suggested I try Clomiphene Citrate 50 mg as a preventative measure. It's actually a fertility hormone that increases testosterone levels. I'm considering it but it's not currently covered by our insurance. Has anyone had success with this treatment?

I know I can't get a real diagnosis here, I have a medical appointment tomorrow but wanted to collect some opinions in the meantime if this describes CH. These are my symptoms:

- it lasts one to one and half month every year

- it originally started in winter (January), but last year it was in March, this year it is happening in June-July

- During this period I feel latent pain in my head, I know anything can trigger a crisis at any time. I have a headache almost every day, or every 2-3 days.

- Outside of this period, the rest of the year, I am absolutely completely fine

- it is only on one side of the head, the right side. It feels from inside the head, in the "brain", to my neck, my right cheek, inside my right ear

- it can hurt in the eye but it is not necessarily very intensively

- It can be extremely painful, it is definitely the worst headaches I have ever experienced, although I am not sure I am in as much pain as other people with CH describe

- I originally thought paracetamol was helpful, but now more and more I feel like it is randomly stopping, not related to medication

- The first headache in the period seems to be triggered by big temperature changes, but when it starts, then everything can make me have a crisis

- It is very very sensitive to alcohol, the other day I had a beer (panache), the next day headache was horrible, it seems to be affected even by tiny quantity of alcohol

Does it look like CH to you? Thanks for your help

Idk if what I have is cluster. It’s always the right side of head by temple, comes and goes, but I need to know, does it make others blood pressure spike high ? My b p was 160/120 couple days ago, head felt so strange and right ear, right hand tingling, effects heart.. started 3 years ago, it’s not so much pain as pressure and confusion, used to happen in winter, but trouble now and it’s summer, mri’s don’t show anything even tho I feel it pretty much all the time but usually not to bad, but then it’ll go real bad fast w pressure on right side and high blood pressure and heart rate.. thinking maybe something else and not cluster ? Neuro and drs don’t know 😣

Anyone tried those oxygen tanks you can get an Amazon? They are called Boost and are aimed at hikers, athletic people, and the elderly. I'm curious if they have enough volume to treat a CH or multiple.

I usually abort with a chewed-up sumatriptan pill but O2 might be a good backup when the pill isnt as effective.

My neurologist gave me a prescription for an O2 generator but the month cost was ridiculous.

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!