r/ClusterHeadaches

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 😣

I have diagnosed cluster headache, and I use oxygen and sumatriptan as rescue treatment. This time around the attacks haven’t been coming as frequently, so I haven’t needed much sumatriptan. Yesterday an attack went away completely after combining oxygen + sumatriptan + an NSAID + a Red Bull with sugar, and it worked really well. I’ve also noticed Red Bull seems to help with the “shadow” pain between full attacks, not just the attacks themselves. I’d never used Red Bull for this before and now I’m a little worried about overdoing it.

How much caffeine/Red Bull do you all use, and how often, without it becoming a problem on its own? I’m on verapamil 80mg every 12h as a preventive.

Hi Cluster Headache community. I'm from San Francisco California, coming to reddit because both my providers and myself have been faced with limited options that not brought more than 24 hours of relief.

Context:

As of today, July 4th, is day 235 of cluster headaches, migraines, and atypical facial pain that resembles trigeminal and occipital neuralgia. The pain I have been dealing with is debilitating and incapacitating, with sensations of hot searing and stabbing eye pain that radiates throughout the left side of my face and entire left 1/2 of head, feeling like hot oil is burning my skin. I have been to UCSF and Stanford ER with both practically saying there is nothing more they can outside of steroids. I'm trying to research a better care team at UCSF that can best advocate for my well being as my current has facilitated poor health management and comprehension of the severity despite my elaborations.

Oxygen therapy can be helpful, but Stanford will not prescribe it to me because I don't qualify in their parameters because my respiratory system is not compromised. My pain management team at UCSF is struggling to find a solution to bring this pain to a tolerable level, and I'm at a loss on where to turn looking for a more diligent team. Pain Management's advice was pain reprocessing therapy, which has been only officially studied for low back pain.

So far I've tried Triptans, Lyrica, Nortriptyline, Botox, Aimovig, Botox, Celebrex, Tylenol, Verapamil, GLP-1's, acupuncture, massage. Unfortunately, all have not brought substantial relief.

The ask:

1. If you're local do you know of any providers, primarily in SF, that are experienced with complex care/ chronic pain conditions and takes San Francisco Health Plan/ Medi- Cal? I'm willing to go outside for SF as well but wanted to start close.

2. Any wisdom on how to handle this mentally and how to advocate. Whether it's personal experience, advocacy groups or orgs for the disabled/chronically ill (local preferred).

Thank you all for your time to read this.

-Naomi

Hi! Reddit has been the best support in dealing with my cluster headaches. I have had CH for about 15 years (F31), and even though it’s episodic the cycles keep getting longer… I’m at about 5-7 attacks per day, 4 weeks in and probably 10 more weeks to go…

I have tried vitamin d3 and it actually does help a bit which is amazing! But I still have a few attacks per day and a lot of shadow pain.

I got my hands on some 0.33g of psilocybin, and I can’t wait to try it out to stop the hecking beast… at least try. My concern is that my attacks are so so severe that there’s is no way in hell I can go without taking a sumatriptan when I have the actual attack.

So my question is if anyone here have experienced having tripanes in your system but still taken psilocybin with success? Or if anyone here knows about potential risks if taken with tripanes in the system?

Review on Amazon: This may be my Holy Grail :)))) https://a.co/0iZlpHmP

Hey y'all, I normally don't post on Reddit, I usually just scroll a bit then hop off, but I'm looking to receive advice from those of you who struggle with cluster headaches. My boyfriend has been struggling with cluster headaches for a good part of his life. These are daily and nonstop. I feel so helpless, I don't want him to suffer from it anymore. He's been seeing doctors and has tried some different medications, but nothing is a "perfect" fix, there's always some downsides or side effects that create their own problems. I feel like he tries to play it down around me, but I know how debilitating these headaches can be. I just want to hear input from others who are going through the same experience, I want to know if there's anything I could do to support him and comfort him. Any advice helps, I appreciate it.

Hi everyone, I’ll try to make this brief. About 2 months ago I started having only pain behind my left eye, extreme stabbing, burning, excruciating screaming uncontrollably pain. My eye becomes blood shot, hurts to touch, constantly tearing and drooping. After 3 ER visits I went to neurology and they confirmed clusters. I was given verapamil 40mg & sumatriptan nasal sprays. The verapamil is not enough on its own, but I have to wait until my EKG to up it. Nasal spray is ineffective and makes it worse. I noticed a week ago, my headache moved to my right eye and completely freaked me out. I’m waiting to get an emgality injection in 6 days. In the meantime, I was put on methyl prednisone steroids and it took the headache away, but as I’ve completed the pack, BOOM 4am my eye is tearing waking me up out of my sleep and pain is coming back. I feel bad constantly bothering my neuro, but knowing I have another week and can’t keep taking steroids/etc is completely terrifying. I can’t live with the fear of getting these headaches especially while I’m working in 90+ degree heat outside. It seems nothing can truly touch these headaches. I’m just wondering if anybody had luck with emgality? I’ve heard good things. Has anybody else also struggled with these waking you up like clockwork at 4am? That’s my worst symptom is knowing I won’t sleep through the night ever. This is all new to me as I’ve never even had a migraine before. I’m desperate for long term relief and solutions. Any thoughts or advice is highly appreciated. I feel like though, I’m at a roadblock and tried everything possible until an injection. This is just the hardest medical/ mental thing I’ve dealt with recently, I don’t understand why at 26 it just popped up. I was a smoker and heard that contributes but I’m at such a loss as to help myself when I have to function and work. I feel for anyone who is diagnosed, this is hell on earth for us all.

Just curious - anyone taking a GLP-1 and noticed any affect on their head?

I'm taking part in a clinical trial for a new medication combining GLP-1 and GIP, and since I started I have had 1 x very low key headache. Other than that its been a pain free month - which as a chronic sufferer I can't remember the last time that happened.
Not sure if its just coincidence or others have experienced similar.

For those of us who've been following developments in psychedelic treatments for cluster headache, this is worth noting. Dr. Emmanuelle Schindler at Yale - who has been leading psilocybin research for our condition - has published an interim analysis in Neurology examining DMT use specifically in cluster headache patients.

Key findings from 100 confirmed cluster headache patients:

- 67.5% reported DMT completely eliminates pain during attacks

- 81.5% reported it worked every or almost every single time

- Over half reported it worked in under 30 seconds

- 100% of participants reported either no change or improvement in overall health with DMT use

- Most users (75%) are using a vape pen

Some important context:

This is an interim analysis of an ongoing survey - not a controlled clinical trial. The sample size is relatively small (100 confirmed CH patients), and the study authors acknowledge that more in-depth analysis is still needed. That said, the findings are consistent with what many of us in our community have been reporting anecdotally for years.

The significance here is that this research is being taken seriously enough to be published in one of the most respected neurology journals, and the authors are explicitly considering a formal clinical trial based on these findings.

Worth keeping an eye on as data collection continues.

Link: https://www.neurology.org/doi/10.1212/WNL.0000000000215894

So I (F23) have been dealing with headaches that have a specific pattern to them for years now. They happen on the left side around the eye, mild-moderate in terms of severity, they last 15 minutes-3 hours approximately, happen around 3 times a day at the same times, for weeks-months at a time then they will go away for a few months.

The severity of the headaches I experience is pretty mild sounding compared to how cluster headaches are typically described, they still have a negative effect on my life but it’s not excruciating. They have been bad enough to wake me from sleep on occasion. No sensitivity to sound or light. No eyelid drooping or facial sweating, occasionally some nasal congestion.

Of course I’ve had migraines ruled out, I’ve had eye tests, a head MRI and even suspected IIH ruled out. The last specialist I saw was a neuro-ophthalmologist who told me I do not have IIH and that my symptoms align with cluster headaches so I should see a headache specialist. I am in the UK so NHS waitlists are very long and referrals often get lost so I am just seeking some clarity. Does anyone else have a similar experience/similar symptoms to me with a diagnosis of CH? Any advice appreciated, thank you :)

Before starting, i want to highlight an important thing: i was diagnosed with OCD and generalized anxiety disorder and since i was young i was always concerned about my health and get paranoid with even the slightest symptom even if it wasn’t important. Maybe this made the whole experience worse but i just don’t want to say “oh my OCD is causing me a headache” and throw it off.
I will describe the pattern and frequency of the headaches that i am having but the time line since it first started may not be so accurate.

2-3 years ago i had a first time bilateral frontal headache (not as a band, two points) which was very weird because it is not exactly a headache but it was a weird sensation and it felt like there is something sharp on both sides of my head like a nail or a screw that is squeezing on both sides and it tend to get worse with bending forward. But it happened maybe just one time in the whole year. After that, i had it one more time and it became more frequent but still not so frequent at all. Last year, the frequency of this type of headache increased and I started to experience another types of headache. One which was on one side mainly on the side of my head/forehead and was associated with photophobia and it was severe that i couldn’t look at my phone or study or anything i used just to sit in a dark room and it gradually decreases in severity. Another type of headache that i also had is headache at the back of my head which is usually on both sides and is squeezing/pressure in character. I had all of those the last year but still they didn’t seem to happen so often.

Side note: Sometimes the headache is worsened when my head touches something like a pillow or even if i touch my headache it increases the pain.
Also, most of headache episodes lasted for couple of days and resolved spontaneously without medication.

This year, i am noticing that the frequency of all these types of headaches is increasing. The last attack was on may 2026 and it approximately continued for one month with a pain-free intervals in between, it wasn’t severe but it was there .. now i am having finals exam and i tend to have short episodes of headache which is mainly pressure headache with burning sensation sometimes.
I don’t know if this is alarming or not.. i went to a neurologist and he rushed me, i couldn’t tell all those details but he still ordered a CT venography to rule out cerebral venous thrombosis.
But i am so scared, anyone experienced the same thing?

I have a very severe health anxiety, even on the days in which i didn’t have headache.. the first thing i used to do once i wakeup is thinking “will i have a headache today?” And it is so tiring to always think about it, i feel like sometimes i am manifesting it but as i said i don’t to throw it off like that i just don’t know if it’s an organic problem or if my anxiety causing it.

How you doin. I’m a guy who’s been dealing with these shit headaches for 5 years now and just recently went to the doctor for it. I didn’t go before cause I felt like a bitch and my philosophy is “if I don’t know what’s wrong, then there’s nothing wrong.” I had thought I had finally gotten used to the pain before the worst attack of my career had hit on a random work night. I genuinely thought that night was the night my eye was finally gonna explode out of my skull and be replaced with a burning rod. It was also my longest attack to date. From around 10 pm to 1 am. I’m fortunate enough to have a wife who consistently aids in trying to minimize my headaches, even if I feel like a bitch about it and her not really understanding (I imagine everyone understands how emasculating it feels to complain about headaches of all things) but I’m currently on a long work trip and my only help was medical. So I bit the bullet and walked my happy ass over, however strange I may have seemed to others. Ice wasn’t working, Tylenol never fucking helps but I took a bunch anyway so all I could do was wait. I can’t describe how painful this one was. They’ve been getting worse and worse over the years but I thought I could continue to “thug it out” for lack of a better term. Hell no. I can’t do it anymore. I really can’t. This condition feels like a curse.

The only good thing I have to say about these headaches is the euphoria and relief I feel when they go away is better than any drug I’ve ever taken. It’s the most amazing feeling. But anyway after the conversations were had and the appointments were made I finally get officially diagnosed with chronic cluster headaches.

A name that I feel is fairly minimizing the pain of it all tho. These headaches are a different beast and I find it extremely hard to portray this to my wife and peers appropriately. The only recognition I’ve ever received in the all the years I’ve been dealing with this is when the doctor I saw called around to all the headache specialists he knew, received their words, and then proceeded to tell me he would rather unalive himself off this plane of existence rather than deal with these for as long as I have.

It oddly felt nice to hear that.

Anywho I suppose my question after such a long winded rant is: how do I continue forward with these when there is apparently no end in sight?

TLDR; I’ve apparently been dealing with clusters for 4 years and don’t know how to continue forward after finally finding out was has been plaguing me. They’re terrifying, and have finally caught up to me.

Hi! I’ve been having shifting headaches for a while now. It hurts a lot when I touch my head, and also when I rest my head against anything. Does anyone else experience this? Thanks.

It is time to turn pain, sleep deprivation, oxygen hoses, questionable coping mechanisms, and pure chaos into memes.

🗓The contest will run quarterly, with the first edition starting now: June 2026.

🗳Submissions will be open for 12 weeks, followed by one week of voting.

🏆The winner/title handover will take place during the monthly meeting.

❓️Where can I join the contest?:
Post your best memes in the #meme-contest channel, in the Clusterbuds Discord server!

Anything goes: original images, edited templates, meme generators, screenshots, drawings, handcrafted stick-men with rake-hands, or whatever other nonsense your cluster-fried brain can produce.

https://preview.redd.it/laz0ns3ovu9h1.jpeg?width=500&format=pjpg&auto=webp&s=9f43d73b5be2fe3da1d8cd9fc3d77c7ee526190b

Out of curiosity, would this community be supportive of a movement to formally change the name of Cluster Headaches to something more applicable, and quite honestly moving away from the name "Headache"?

I find it frustrating to describe my episodes to family, friends, coworkers, and most importantly medical professionals, and once the name is applied it instantly minimizes the severity.

In recent years, Manic Depression was shifted to Bipolar Disorder, and Chronic Fatigue Syndrome to ME/CFS (Myalgic Encephalomyelitis). This gave it some clinical weight, and removed, and reduced the stigma based solely on associated words with the name.

If so, is there a way we can begin to merge names, such as "Cluster Headaches/Clyclical Cranial Neuralgia (CNC?)" Or something similar? Even a small step here in this subreddit with the Mods making a note or update, and intention on use could spark some change. It's a very very small step, and some entity like the IHS and WHO would need to adopt it to formally make the medical community begin to apply it, but a grassroots effort may be a start.

Maybe I'm just rambling, but to me it's an important detail where rather than leading to confusion and apathy, it brings care and concern. Just a thought.

CH sufferer since I was 12. Only diagnosed 5 years ago. I’m 33 years old now and Pregnancy changed my frequency and I’m now experiencing triptan overuse symptoms. Neurologist is attempting to get me oxygen at home but I’ve had a bad run from February and it’s still going. I used to suffer between October- December. Now I don’t know when it’s going to end and I’m anxious and in pain just all the time. I’m tired!

Episodic for 30 years, with some chronic years, but with current meds been episodic for 4 years (also chronic migraine w aura for 30+yrs). Came here and learned about ginger shots. Cycle seemed to be coming to a close, so I thought, "oh, i'll try the ginger instead of harsher abortives." TBH, the ginger isn't helping as much as I hoped but glad it helps so many others. but now they seem to be getting stronger again and they usually end first day of summer. Can it be the ginger? Or the weird weather most likely culprit? started meds again, but trying not to panic that the episodic was temporary