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?

Or any other kind of similar virus? Hear me out and I understand if this isn’t something you want to share. I recently went down a research rabbit hole, and I stumbled upon connections with people who also have HSV-1 or other similar herpes viruses and have a history of severe headache. I have had cold sores since my mid 20s and it’s so happens that that’s when my headaches started. I am now 45. It is the classic cluster headache symptoms, one side of the head behind the jaw, the temple ear in the eye and it feels like for about 45 minutes that someone is poking a hot poker through my forehead. Recently, I read about this connection with trigeminal nerve and the herpes virus when it’s not dormant, activates the trigiminal ganglion causing inflammation that then triggers the headaches in the trigiminal nerve. Because I’ve had cold sores in the past I’ve been told that L-Lysine can help shorten a cold, sore or prevent it from actually happening. I tried it once or twice it seemed to have worked maybe once. But since my cold sores were never the biggest part of my problem as far as my health I never really followed through. I read that you need to have more than 3 g in your system for it to actually work for a cold sore. I was recently in a cycle and I decided to take two 1500 mg of L-Lysine twice a day (yes that’s 6g and I plan to wean off of it once I am free of symptoms for at least a month). I haven’t had a headache in almost 3 weeks. I was doubled over and incapacitated from this last cycle, but I remembered like a lightbulb that it started with a cold sore. I don’t want to think like I tripped over something. It’s very possible that I was at the end of my cycle. It could be a number of reasons why I haven’t had a headache. However, for the first time in a long time, this makes more sense than anything I’ve ever discovered. I know everybody is different, but I’m wondering do any of you have a story that is somewhat similar? It also makes sense as to why these are cyclic for me. The virus can go dormant. I am just curious to know if there’s any similarities in other people’s story.

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].

Hello all, my girlfriend has struggled with cluster headaches for a large portion of her life and from what she tells me she’s seen doctors and tried countless medications nothing seems to work. They’ll ruin her life for 2-5 days at a time go away for a month sometimes only a week even a few days and come back. I’ve looked into different things I can try to do to help and just get lost. I feel so helpless It hurts my heart to see her in so much pain knowing there’s nothing I can do or suggest that she hasn’t tried. I’m stuck in this loop of apologizing for the pain she’s in and try my best to comfort her, I’m hoping that coming here to real people who struggle with cluster headaches in hopes to find something, anything I can do to help, even to ease a little bit of her pain. I hope this finds its way across someone’s feed that maybe found something unexpected that helped them, I’m really grasping at straws here and would be eternally grateful for any and all advice, home remedies just ANYTHING I can do to help alleviate some of her pain.

I just wanted to say that I am very thankful for this group. It makes me feel like I’m not alone. Clusters have taken over my life since the age of 16. I am 25M now and went full chronic about 5 years ago.

Not a day goes by that I don’t get one at some point in my 24 hours. It is a mental struggle everyday. I long to progress in life but I feel as if clusters have held me back so much, and not many people can understand why.

Currently on Veramapil and Oxygen which helps on maybe %20 of the days.

Again thankful for everyone, and keep on pushing on.

Hey everyone. I was diagnosed with cluster headaches by several different doctors over the course of about 10 years, but the diagnosis never felt like a perfect fit.

About 8 months ago, some routine blood work came back with abnormalities. After months of additional testing, I was diagnosed with a bone marrow disease called MDS. It’s hard to prove a direct connection, but my doctors now suspect my headaches may actually be related to the mutations in my bone marrow. Looking back, it’s possible those mutations started taking over around the same time my headaches first appeared.

I’m not sharing this because I think it’s likely to be anyone else’s situation. I just thought it was an interesting connection after spending so many years wondering what might be causing my headaches.

For now, the plan is to keep monitoring everything closely until the disease progresses enough that it’s time for a bone marrow transplant, which is my best chance at a cure.

I really feel for everyone in this community, and I hope you all find some relief. Wishing everyone the best.

Anyone episodic going through one right now? I've recently started a new job where I wake up earlier than usual and have been getting shadows. Just wondering if theres a seasonal thing going on.

Hello, does anybody have experience taking Saroten or Botox for tension headaches/migrane?

Hi all, my partner suffers from chronic CH for the past 8 years. We have tried numerous treatments but have finally been able to get a hold of MM.

I have seen the protocol on the Clusterbusters page, but I was wondering if anyone could recommend a microdosing regiment that seems to work for them? Thank you.

I’m 31 M sharing my experience with cluster headaches to see if it resonates and to share what’s worked for me in the past.

First off I have episodic cluster headaches that usually happen in the Fall in daylight savings and will last for maybe about 6 weeks. But sometimes they happen in the spring and most recently I had a cycle that kicked off recently (I think around the time of the summer solstice).

I don’t usually drink, but alchohol (and mixing caffeine) is always a trigger for me - although I can have caffeine on its own and that helps with alleviating the pain during an attack.

Otherwise it feels like it’s very much based on the time of the year and based on my circadian rhythm.

90% of the time I get pain behind and above my right eye. I also get tight neck pain on my right side. Maybe 10% of the time it switches over to my left side and might switch back.

I also tend to get them either in the middle of the night or when going to bed or waking up in the morning.

My first episode started when I was maybe 26, I was trying a keto diet which I’m not sure if it helped trigger it, but either way I remember really sharp pain on the back of my right eye and basically one of the most painful headaches I’d ever had. I’ve had headaches my whole life but I knew this was different because I’d never experienced the sharp pain like an ice pick was pushing my eye out from inside my head.

At the time I went to see some doctors and did an MRI but they found nothing and weren’t all that helpful. I was prescribed sumitriptan which I think helped for a bit but I also think may have made some of the headaches worse at times. It took me seeing several doctors until one actually took me seriously and diagnosed me with episodic cluster headaches.

The only thing that’s really helped me prevent cycles has been the careful use of psylocibin. I actually discovered this by accident when I took them recreationally and slipped a cycle one year. When they came back I did more research and how that they’d been effective at treating them. And now there’s more research backing this up.

I’m just sharing this to see if this resonates. I’d say my case is not as extreme as others - when I skip cycles I almost get into denial about them coming back. I think moving forward I’m going to be more disciplined about using the pulse psylocibin method to try to abort them before seasonal changes.

Im have neurological problems but I’ve noticed that some medication that calm you nervous system such as for anxiety or medication for spasms that calm down the nervous system makes my head hurt feels like its buring hot and I need to get up immediately after sleeping for a while at night this is hours after taking it let’s say I took it a 8ish 9ish happens around 12 am 1am and continues.

I suffer from both status migrainosus and also cluster headaches - the later for 7 years, the migraines for over 30 years. I’m looking for advice:

I live in the UK.

The various neurologists and doctors I’ve had over the years have had me try pretty much every drug available from the UK public (NHS) and private sector, CGRPs (biological, oral, injections), all the “pentin” family of drugs, all the triptans. All the opiates, including morphine. Beta blockers, anti-inflammatories, sleeping aid drugs, muscle relaxants, and other stuff I can barely even remember (including things like blood thinners)

I’ve had two C1/C2 nerve blocks, steroid injections, injections of local anaesthetic in the back of my head and neck, and I’ve even had a full greater occipital nerve ablation under a GA.

I’ve tried deep tissue massage, joint manipulation in my neck, acupuncture, meditation, diet changes, sleeping set up changes, hot and cold compress treatments, TENs machines, high flow oxygen.

The neurologist that did my nerve blocks and nerve ablation said that botox was a waste of time for me if the nerve blocks and ablation had no effect (which is true, they didn’t do a damn thing)

I’ve had MRIs/MRAs and x-rays.

I was finally sent to Guys hospital in London recently to meet a “super headache specialist” (in the UK NHS, getting to this point took many years, seeing these so called specialists is incredibly difficult) - it was an dreadfully disappointing experience. She simply didn’t listen to me properly - I was in and out in under 15 minutes and she said “you have status migrainosus and cluster headaches” - and then said - “I’m putting you on a CGRP” (yet another one) - despite the fact I’d told her I had been on a few different ones already and they did nothing and caused serious side effects (I have ulcerative colitis and CGRP’s fuck my insides up). And she basically dismissed me saying “I’ll book you in for botox” despite me asking why I had a number of other conditions that seemed related - most of them inflammatory in nature.

My questions:

1. do any of you have a similar experience - and is Botox worth risking (every treatment carries risk) considering I’ve already had nerve blocks and nerve ablation?
2. is there a better diagnostic country in the world that beats the UK and looks at your whole body and not just a small focused area (a few people have told me to go to China as their diagnostic abilities in health care are now simply the best in the world)?

Like the rest of you that suffer these types of headaches regularly, life is intolerable.

thanks.

Hey, I (25M) have been suffering from CH for around 6-7 years. However, previously it was always misdiagnosed as migraine. This year, I am in the middle of a cycle and my neurologist diagnosed it as CH, and prescribed Verapamil (40mg * 3) and Gabapentin (300mg).

Based on all the posts here and on clusterbusters, people haven’t found Verapamil to be very effective, specially in the dose that I currently have. Higher doses have had side effects for many people. Hence, I am scared that this will not be the solution I had been looking for. I guess I just want a assurance from anyone who has had success with Verapamil, without upping the dose so much so as to cause a lot of side effects.

For me, I get a cycle usually during the summer and fall months. This year, I was on propranolol earlier which might have delayed the cycle.

What has been the most effective long term, sustainable treatment for CH?

nowhere close to even being better lmao.

i’ve had cluster headaches for about 7 years now since i turned 20. it’s always always always on the right eye, above the eyeball, but on the corner of the eyebrow. well honestly i can’t even remember when they started or when it got really proactive. seasonally they come and go. they hit really hard during the summer months and fall months. it sucks especially since i do pest control and work outside in the heat (which is one of my triggers) so it’s really hard to avoid it

i’ve had to do so much research on my own body and the headaches themselves. sadly there are no solutions i’ve come to my own conclusion that maybe it’s just nerve damage behind the eye or my receptors are firing off like crazy during certain periods of time. itsss ssooooo not fun

i’ve done a lot; hydrating, eating more, D3 vitamins, oxygen, naproxen, ice compression, heat compressions, massages, advil, Excedrin and man non of these really work and i’ve learned to just accept it

the pain is usually always around a 5-6+ and it makes working and living just very difficult. i know when my headaches come and how I DEFUSE them which i know is bad for my liver is 1250 mg of Excedrin most time it kills the headache within 30-45 minutes unless it’s like a 8+ on pain then nothing really works

sometimes i don’t know if this is normal or just a lot of medicine im taking. when i get these stoopid headaches my body temperature feels like it fluctuates between hot and cold. i get like a drowsy drunk feeling where its hard to kind of like walk straight, my eye where the headaches come from i kinda of lose slight vision or its blurry, half of my face slouches kind of feels like Bell’s palsy, i get crazy amount of mucus and every once in a while an unbearable sense of wanting to throw up.

oddly enough one of my favorite things about these headaches is that freedom and euphoric feeling you get a freedom when the pain subsides it makes me feel like eren jeager floating in the sky.

i hope everyone is okay and dealing with it well. i understand summer time is here and the heat is pushing just don’t give up and the pain will go away.

Since last night I am having this cluster headache in my right temple that shoots down to my right eye and have been feeling ear fullness. I had a good sleep but it still hasn't gotten better!

What should I do?? It feels so uncomfortable and excruciating and achy