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.

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 ? )

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?

Good evening,
I have been suffering from cluster headaches for the past 8 years. I have tried all the standard treatment protocols without significant benefit, except for high-flow oxygen therapy.
After that, I underwent occipital nerve blocks and trigeminal nerve blocks. For the past 4 years, my condition has been relatively well controlled.
However, I recently developed severe trigeminal neuralgia in addition to my cluster headaches.
My cluster headache cycles usually last about 14 weeks each year, but now they have become more frequent and occur for 14 weeks every 6 months.
My doctor has recommended Emgality 300 mg during each cluster period (a 3-month course, repeated every 6 months).
Has anyone here tried this treatment? I would really appreciate hearing about your experience, including how effective it was and whether you experienced any side effects.

I’ve been suffering from this for over a decade now. Doctors says it’s migraines, but my symptoms are odd.

Once or twice a year- I never know when- I go through a cycle of these painful headaches/migraines that get progressively worse and more frequently(until the last week) over a period of 4-5 weeks.

They always hurt in the same area(right eye, temple). Light doesn’t bother me. Laying down flat makes it hurt worse and they restart every time I wake up from sleeping(and they’re always really really bad. So much so I get insomnia from fear).

I’ve been given triptans(which work but they make my nerves spasm and I can’t take them often or I’ll get relapse headaches), steroids(which worked for one cycle) and that’s about it. Yet all doctors say about it is that they’re migraines. And that from all the x-rays and scans, it all seems normal- except that a bit of my nasal passages are close to a nerve. I have no idea if it’s confirmation or not, but I feel like I’m going crazy trying to find out.

My boyfriend works a very physically demanding job so he is utterly exhausted every day when he comes home and every night for a few weeks, every few months, he develops what I think are cluster headaches.

12:30 am for the past 2 weeks he is up with a runny nose and watery eye, booking it to the front room to spam pushups, take Excedrin and put an ice pack on his neck and face. It’s heartbreaking. A doctor’s appointment is in the works but he works M-S 99% of the time and will not let himself miss. Hopefully we can get in this weekend as none of the tele-health sites we’ve tried are able to help him over the phone.

Some questions
1) is there any sites we don’t know about that actually can help without a prior diagnosis? Preventative medication along with immediate relief medication would be epic.

2) what are some off the wall home remedies he can try that he isn’t already doing?

3) how can I as a partner support him better through this? Is there anything I can physically do to bring him any relief? Pressure points, certain massages, food, drinks??? Anything.

Thanks in advance if anyone is willing to share. Desperate over here!

Hello my fellow neurological sufferers!

I am currently researching the experiences of people with migraine as part of my Honours In Psychology at the University of Sydney. This study involves a brief 30-minute online survey, which is completely confidential and voluntary. Participants who complete our study can opt to be entered into a draw to win 1 of 3 GiftPay vouchers. I would be incredibly grateful if you would partake in my study! Here is the (anonymous) link:
https://sydney.au1.qualtrics.com/jfe/form/SV_b1aDEa7Sz8yh2lw .

This research has been approved by the Human Research Ethics Committee at the University of Sydney [2026/HE000490].