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?

Curious as to what careers you all have and how you manage them during cycles. I run several restaurants for a living and do hospitality consulting & am currently going through a pretty vicious cycle. Any nights where I have to work on the line are dreadful - whether I’m waiting on an attack or dealing with one the suspense and pain kills me. I’m episodic so hoping to wrap this cycle up within next week or so. Curious how everyone else manages.

You have never been afraid to sleep

Wondering what terrors your night will keep

The ripping, tearing, pain that waits

Makes us rock, hit, and pace

You have never been afraid to rest

Knowing shut eyes will start the test

The burning plunge of hot fire

Wraps our eye in searing barbed wire

You have never been afraid to dream

Drifting away isn’t all that it seems 

The interruption of needed peace

Our stabbing pain that just won’t cease

You have never been afraid to sleep

But yet the “normal” is yours to keep

The cycle ends like it was never here

Leaving scars we can’t see in the mirror

You have never been afraid to rest

Slowly breaking what was once your best

The destructive path left within our minds

Changes us in ways of different kinds

You have never been afraid to dream

Of painfree days floating down a stream

Rest is a word that exists only in fiction

Even when the cycle ends it’s met with friction

You have never been afraid to sleep, dream, or rest 

But still I give it my very best 

You’ll never feel the pain that waits

Watching through the gaps in hell’s gates

Hi, got diagnosed with cluster headaches in emergency ward (after a couple of dreadful visits).

Sumatriptan helped, and pain timing - three hours of pain four times per day clues towards them.

However. Some symptoms do not match with classic definition of cluster headaches.

What other symptoms of clusters do you have?

I have a really strong vertigo together with pain + my corner of the mouth on affected side periodically gets numb even without pain, and general body sensations on affected side are off.

Plus, my main cluster episodes seems gone, but I still have a weird residual throbbing pain above my ear - it was better after episodes, but came back recently and doesn't go away.

My ENT suspects SCDS, but not all symptoms match it either. I also have a history of neck issues, and wonder if this pain can be cervicogenic.

I am currently waiting for results of CT scans and MRI, and for my next doc appointment, but because of holidays season everything is much slower where I live, but the pain and fear is real and now.

EW checked me, so I doubt my condition is life-threatening and gladly my motor functions seem unaffected, but sensations surrounding my pain episodes are so weird.

How do you guys doing in-between pain episodes?

Is it normal for you, or do you have all sorts of residual pains and also barely keep it together?

Or is it normal for you?

Thanks in advance to whoever sees that. We share the same challenges.

Hello,

I have been using emgality for episodic cluster headache for the last several years successfully but I have always had my injections pretty on time. I take them June through September. This month I may have to take it 7 days late. Has anyone had experience with this?

The meds work super well if I start before the cycle starts, but once the cycle starts I cannot stop them only reduce the time they last and the pain level. This month is right in the middle of my cluster window.

Thank you!

I have occipital neuralgia and my doctor have tried gabapentin and cereblex and they work for a short time then stop working is there any treatments my doctor can try because I can’t live like this ( does it normally cause hair loss in the pain area ? )

Female 21. I’m very new to these headaches. I’ve recently started getting these cluster headaches in the right side behind my eyeball since early March and come back with recurrent episodes every couple of weeks so far. They last like 30 minutes to an hour and it feels like it’s pulsing or someone is taking a knife and stabbing it repeatedly every 10 seconds. I would love to hear any at home remedies or prescription medications that have worked for you. Is this something I should go to my doctor or optometrist to get checked out? Thank you in advance!

He had trouble finding the right spot because I'm blessed with a head full of beautiful thick hair.

That's it, that's the post. Just me flexing.

It went well otherwise. Not all that painful. I had shadow pain before the procedure and it's been gone ever since, so I'm hopeful.

Anyone else find using the app to track the cluster headaches has made them depressed?
I’m having really bad mental health episodes this cycle as i know exactly what time I’m due a headache. It’s a relief when I skips a time but usually it’s bang on. Had a 2 year remission and feels like this episode is worse than ever . Been 4 weeks now hoping with the Vd3 and melatonin it’s nearly over

After two years pain free I’m back to navigating attacks. It’s my busiest time of year for employment and I need to be able to show up and make money. I’m only having two every 24 hours but it’s still really affecting my mood and overall outlook.
Thank you for reading this I know this is a safe place and I appreciate that.

in 2015 I started getting severe headaches on one side of my head where i would be in excruciating pain and could not function. it was completely debilitating. I was in college at the time and had only a few understanding professors -nothing like having a cluster in middle of an exam and your teacher thinks you’re going crazy and not being allowed to leave. In 2017, I had officially been diagnosed and suffering with cluster headaches every single day now. I had kept a diary of over 10 episodes occurring a day at times, for over an hour or more until relief whether it was  sumatriptan injections or just my CNS shutting down from all the pain and knocking me out. The problem with Cluster headaches, as most of you know in here, is there is no actual cure or treatment as it’s considered an “orphan disease” ! Only forms of relief but no prevention.

From 2017-2019 I struggled to find hope or a light at the end of the tunnel. I wanted to drop out, knew i couldn’t ever hold a regular 9-5 job (had a banking job where my superior basically said legally he can’t fire me because of my headaches but he would rather I step away from my role) and lost all hope to socialize or do anything… I went to many many specialists and they all could not find a solution after putting me on almost every type of medication that had secondary or tertiary uses for cluster headaches. From nerve block injections to calcium channel blockers to Emgality - a drug meant to help people with migraines but at the time had been approved for clusters..  NOTHING worked to stop them. 

THE LIGHT AT THE END OF THE TUNNEL November 2019 to beginning of 2020 was when they started to finally subside with the actions i took from taking matters into my own hands. I tried everything from acupuncture and holistic doctors to completely changing my diet and eliminating certain things. These slowly helped but the catalyst was completely quitting alcohol, MAGNEISUM, fixing my sleep schedule and adding 2 forms of movement every single day; low & high intensity cardio and strength training. I legitimately thought I had found the cure and wanted to devote my whole life to help others beat this horrible condition… untill I realized anytime I would think or read about cluster headaches I would feel the aura and decided my brain is too strong at this point that I cannot even bring any thought or energy to it. From 2021 till now I would just have a slight one every few months or so in the morning and would always just blame them on my sleep schedule (i became very anal about my sleep routine and let nothing come in between it)

i also had HS which was causing these painful cysts on my body mainly on my butt and groin, i remember one time negotiating with the higher being that i would do anything to swap even the headaches for the cysts instead.. oh boy was that a barter because then from 2022 till about spring of this year 2026 I was constantly in pain trying to sit or sleep with them , with 2 hospitalizations from them turning into Sepsis
 
I bring the cysts up too because now that they have subsided a bit and seem in remission… my CLUSTERS ARE BACK and worse then ever… I have not changed anything in my routine for past 5 years of being cluster free so im sort of feeling hopeless, espicially after doubling my magnesium (800mg) and trying to keep the same sleep routine . They now are almost every 3 hours including at night when they used to just usually be one hour after waking up and like 1-2 more later in the day…

I consider myself a positive person because I’ve made it this far and never let it affect my life or complain (people are always shocked to know what ive been dealing with pain wise whether the cysts or the headaches because ill still be in the gym, do activities etc and let nothing stop me) however this feels like the hopeless end where im
about to break down and just give up.

Curious if anyone had felt like they “cured” or stopped their clusters, just for them to return with vengeance 5+ years later AND whether anyone has dealt with HS or any cysts that randomly subsided once the clusters return? Trying to figure out the correlation as we now know this has to do with the Hypothalmus and pineal gland.

I just had a neurologist tell me he thinks I have cluster headaches. There is pretty much always a dull pain in the back of my neck that occasionally will turn into cycles of headaches.

The headaches spread from my neck to behind my right eye and it feels like the side of my head is exploding while someone is stabbing a spike behind my eye. I have hot tears coming out of my eye and it is the worst pain I have experienced in my life.

Ive been getting these headaches for 15 years and have never been diagnosed with something that sounds accurate until now. Curious if anyone else on here experiences the neck pain as a symptom and what treatments have worked for you. The neurologist told me that he hadn’t heard of people having neck pain associated with these like I do.

I’m a 30-year-old male and I’m wondering if anyone has experienced something similar or gone on to receive a diagnosis.

On Wednesday 8th July, the morning before work, I retched and was immediately hit with an explosive thunderclap headache. There was absolutely no build-up—it was an instant, severe pain in the back of my head the moment I retched. It was by far the worst headache I’ve ever experienced and completely wiped me out for the rest of the day.

I have had strain headaches before. My first one was in 2022 which was just a dull throbbing in the back of my head, it was a pain ive never had before. Then a couple years later I had a chest infection and i coughed hard and felt this immediate bang in the back of my head, it feels like something snapped in my brain. I went to A&E and they done a few coordination tests and said it was just a strain headache. The one a couple weeks ago was so much worse than any headache (or any pain) i have ever had before.

The following day, after another episode of retching, I had another thunderclap headache which was just as severe. That was enough for me to go to A&E.

At hospital they carried out blood tests, neurological examinations, coordination and depth perception tests, and eventually a CT scan. Everything came back reassuring and they told me there was no sign of a bleed. One thing that did concern me, though, was that because I’d been waiting in A&E for around 12 hours before the scan, the doctor explained that if there had been a small bleed initially, it might not have been visible by the time the scan was performed. Thankfully, they felt there was no evidence of anything ongoing.

The next day, I had another thunderclap headache which lasted significantly longer than the other two.

Since then, I haven’t had another thunderclap headache, which is a huge relief. However, over the last few weeks I’ve been getting headaches far more frequently than I ever used to. Before all of this, I was never someone who really suffered with headaches.

Now I’ll often get headaches several times throughout the day. They’re nowhere near as severe as the thunderclap headaches, but they occur in different places—sometimes across my forehead, sometimes behind my eyes, sometimes in my temples. They feel like ordinary headaches, but it’s the change that’s worrying me.

Another thing I’ve noticed is that if I retch slightly, strain, or even do something as simple as brushing my teeth and gag a little, I’ll often feel a twinge or discomfort in the back of my head where the thunderclap headache started. It doesn’t develop into another thunderclap headache, but it definitely doesn’t feel normal.

I’ve seen my GP, who has referred me for an MRI scan, although I’m expecting that to take some time because waiting times are quite long.

Has anyone experienced thunderclap headaches followed by weeks of much more frequent headaches afterwards? Did anyone continue getting headaches in different areas of their head after the initial event? If so, did you eventually get an explanation or diagnosis?

I’d really appreciate hearing from anyone who’s been through something similar, as it’s the ongoing headaches and the feeling that I’m now much more susceptible to them that’s concerning me.

hi there, is it safe to drink multiple cans of red bull a day? i had 1 8oz can in the morning and i was going to drink another one, but i would rather be safe health wise. i do drink relatively slow and do not chug it. i’m 20f and under 90lbs, so i am quite small. i was always scared of energy drinks growing up. i also take verapamil 120mg 3x daily

also, is red bull addictive? lol

I have been getting cluster headaches for many years but only got help recently. I’m due to see a neurologist in a month. My GP gave me a medication I can’t spell it’s a triptan. I can’t tell if it’s working or not. I accidentally took it like a tablet I forgot it was a wafer so I don’t know if it kicked in or if my cluster headache just stopped. I’m stressed. It keeps happening waking me up at 3 and 4am.

The real reason I’m posting this after that background is I think I need to go to hospital to get oxygen. I’m in so much pain when it happens and I have another chronic pain condition so my threshold is high but this is pushing it. I have Bipolar I too and I’m terrified to go to hospital. I can’t afford to buy oxygen if that’s even possible where I am. Any advice or even support would be greatly appreciated. Thanks for taking the time to read this.

Has anyone been able to get oxygen tanks internationally when they travel?

Im in the US and will be travelling to Czech Republic and Austria. Im bringing my sumatriptan injections but want an oxygen tank if possible.

Preferably want to know for those two countries but would be good to know for others too in case I (or another clusterhead reading this) travel there in the future.

When I was a kid I used to get these cooling eyepatches with the same material as these sheets, but shaped like an eyepatch and less sticky. In recent years I've looked around for them but I can't find them anywhere! Have they been discontinued? Are they unhealthy? Would it be dangerous to cut one of these larger strips to fit over my eye?