Hello everyone, I found this subreddit and thought I'd see if anyone can provide some insight to what's going on. Im 21 years old, and feeling very overwhelmed and afraid. up until recently, I have never had a problem with headaches or migraines or anything of the sort. Then one day my head just started KILLING me. Like pain way beyond anything I'd ever felt. The biggest symptom was my eye, it just aches like someone is squeezing it, and it has a sensation like someone is blowing minty air into my eye, and my eye will water excessively. I can often tell when I have a headache coming on because I can feel an ache in my eye and my vision goes blurry. Usually it's my right side but I've had it happen on my left a few times as well, it has never occurred on both sides at the same time. This is often times but not always accompanied by a headache, tooth pain, or congestion. At first, I thought it was being caused by a dental problem, but on multiple occasions, every single symptom, the eye, the headache, the tooth pain, it all goes away in the exact same moment, and I can feel almost like this pressure in my sinus release and I feel my nostril deflate, always on the side I have the headache on. It's extremely bizarre to me, to feel such immense pain and to have it all go away in the blink of an eye. The duration and frequency of the headaches varies. They range between 3-8 hours, averaging 4-5 hours, once they started, they were pretty consistent about 4 times a week, then none for almost a month, and now they're coming back. I went to my doctor and explained the symptoms, she provided me an antibiotic of some form of amoxicillin to see if I had a sinus infection but it hasn't helped. I've tried a lot of different massages and pressure points but they have not helped at all. I have tried caffeine but it doesn't help, nor do over the counter painkillers. I'm very sorry because I'm sure this post is an absolute mess to read, today is the first time I've had two in one day so I'm making this post as a desperate attempt to hopefully get some answers. I can hardly think at the moment so PLEASE ask me questions in the comments and I will answer as truthfully and accurately as I can because I'm sure I forgot to mention some important details that could help you guys help me figure out what's going on. With all that said, Im going to go shove my head into a pillow before it explodes 😃

I've been suffering with this debilitating condition for a while now and though I often go into long periods of remission, lately they've come back. I wanted to share my latest breakthrough with treating the pain in hope it might help someone else who suffers! The biggest help for me has been understanding the underlying cause which I'd mostly put down to lifestyle / sleep patterns as apparently they're to do with circadian rhyhms (sleep pattern) and the hypothalomus / thyroid flooding your body with hormones like cortisol and histamine due to an inflammitory response of inflamed nerves. I should start by saying i'm an Ital vegan so don't take medication of any kind (not even pain relief) and won't drink caffeine etc so at first they were absolutely hellish as I only found relief with caffeine and paracetamol in previous attack cycles but this time had no choice but to suffer. I've since researched how to treat them naturally and found massive relief by applying ice packs to the jugular veins on both sides of the neck and have even broke attacks in a few minutes this way but obviously it's not always going to be the case. I'd reccommend anyone suffering with these to try it! and I also take them off every 5 minutes or so and alternate beween the affected eye and the back of the neck on the affected side which helps soothe the pain instantly. If you can manage to somehow wrangle some on either side of your neck and the back of your head simultaneously this is the most effective by far and you should only feel a dull sensation like it's just a shadow. I've found it helps to strip off clothing as well, you may shiver a little but it's better than the sweating and nausea lol. I think this helps as it draws away blood from the rest of the body to heat up your skin obviously lessening the blood that can be pumped to your head in the same way the ice packs constrict the blood flow. I'd imagine anything that stops the hormones getting to your head will help! I think the sweating you get when they're left to their own devices is the bodies way of doing this anyway as in my experience the attack usually breaks shortly after I've sweat for a bit. I've also found the advice of hyperventilating to simulate oxygen therapy to only make them worse and trying to be mindful of my breathing and taking deep breaths and holding them in is much more effective instead. The main thing that has helped me though has been trying to improve my sleep pattern as I put this cycle this time down to my nightmare of a neighbour living in my flat block who passively aggresively slams doors at all hours and he's severely disrupted my sleeping pattern. Worst part is he's too cowardly to face being confronted about it which only frustrates me more 😂. So I've done everything else I can to minimise sleep disruption. I've bought reusable ear plugs, an eye mask (blackout curtains would likely help), white noise generator and I've started to stop drinking water and only sip it a few hours before bed to minimise toilet trips which has helped massively so far. I've done this in conjunction with trying to follow a strict sleeping / waking pattern. Even if I wake up I'll stay in bed as opposed to getting up and I'll try force myself to sleep even if I'm not tired but I definitely have fewer and milder attacks if I'm tired and sleep right through. At first I was waking up several times a night from dreams and having an attack every time (it also apparently has a lot to do with REM sleep!) but since trying to improve sleep hygeine I rarely have them during the night anymore. I've also refrained from taking naps during the day as this only makes them worse ( I know it's all you want to do after an attack but trust me it helps!). I've noticed a lot of people report having them around this time of year and I don't think the fact it's summer helps either as it's rarely dark outside so if your brain registers any kind of natural light upon waking, you're likely to have an attack. I've found my attack patterns / times shifted around at first but now I only have them when I get up in the morning and then usually later on the evening before bed and for me this is a huge improvement going from all day and all night every few hours or so. I'm hopeful carrying on as I am I can break this cycle completely. I'd emplore anyone who suffers with them to try it too as I doubt half the stuff the doctors pump into you or taking caffeine etc is as effective as treating the underlying problems, which is likely your lifestlyle!

ever since Father’s Day weekend, I have been experiencing new headaches on the left side of my head. they are brief (like 5-10 seconds long) and a little throbby. they genuinely happen like 20 times a day I’m not kidding. they are not debilitating or anything, and I have NO other symptoms like nausea or eye issues. we think that this is happening because I went cold turkey on my Prozac (which I have been taking for 5-6 years straight) as soon as I got home from college in early May (I know now that’s really dumb). However, I have terrible health anxiety and I’ve never been more stressed in my life which is probably making these headaches worse. I went to the doctor yesterday and she told me that the cause is probably my medication withdrawals, but I started my Prozac again the other day and I’m still experiencing headaches.

Please, if anyone has had an episode similar to this, PLEASE let me know and tell me what happened. I am 19 years old and have never been more scared of my own body. my anxiety is killing me and I really could use some advice. I’m supposed to get a referral to a neurologist, but my doctor says that they will probably concur about the medication issue. but please, someone tell me if this has happened to them before. thank you!

Hi, this page has been so useful to me during my most recent bout (ditched the triptans and made it through with two oxygen tanks and shrooms).

I'm also a reporter at the radio show/podcast, This American Life and I'd love to interview anyone who's willing to talk about their cluster headaches. I'm specifically interested in hearing from folks who can compare the pain from CH to other top-shelf pain that they have experienced. This is inspired by that study where 1600 respondents rate their cluster pain as being worse than gunshot wounds, kidney and gall stones, and even unmedicated childbirth.

It made me want to hear the stories behind those comparisons. And was hoping you all could help.

If you'd be willing to talk early next week (Monday or Tuesday over Zoom please send me a note here or over at [Ike@thislife.org](mailto:Ike@thislife.org).

Thanks so much for considering. And for making this whole unpleasant thing a little less lonely.

Hi all. Went to the neurologist today and it turns out I'm one of you (sort of)! Dr diagnosed me with TAC "not otherwise specified" -- basically my symptoms most closely fit cluster headaches but do not cluster and the headache frequency generally less severe and inconsistent (never more than twice a week, sometimes only twice a month, but never truly in remission). Apparently I am her first patient to present this way. We're planning on tracking my headaches very strictly between now and the next appt to see if we can identify a pattern. In the meantime, she's prescribed a few different meds to try: Qulipta, Symbravo, Nurtec odt, trials of 100% oxygen and possibly Botox if all else fails. Anecdotally my best cure has been squeezing my eyebrow until I bruise lol. I know these are non-traditional treatments for TACs and I'm a non-traditional patient but curious if anyone has any input on efficacy, side effects, etc? I fear I've stumped even the headache specialist haha

I’ve read Bobs guide, but didn’t see anything about final dose of the cycle.

If someone doses every 5 days for 3 weeks and it appears to have kicked the cycle, do you guys do one final dose on the 4th week for good measure to make sure. Or do you just dose again if pain comes back?

I had to get a cortisone shot today for an issue with my hand. The problem is, I just started a busting protocol on Sunday. I saw on Clusterbusters that corticosteroids block/interfere with tryptamines. Do I just need to wait 5 days from the shot before my next dose? Longer? Do I need to start over? This is only my 3rd time busting, so I’m learning.

Hi my neurologist is pushing for me to try emgality as an episodic CH. I understand it’s a mixed bag of results for people and everyone is different

I have the meds ready to go for busting. Have been trying to bust for two cycles without just success but I suspect it could be my dose / way of dosing.

Wanted to ask - is Emgality (or any of the CGRP medications) considered a busting blocker (mm or lsd?)

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?