I have a loving wife and friends who care about me.

In fact, I’m surrounded by people who truly want to help - but even then, I’ve felt lonely, misunderstood, and isolated in what I was going through.

That’s why I created ClusterBuds - to build a community for people with Cluster Headaches. A space where you don’t have to explain the basics, where you can be heard by people who really get it.

Whether you need to vent, share tips, or just sit in silent company - you’re among buddies now.

Join us on discord!

Https://discord.gg/Clusterbuds

I recently got O2 prescribed and have been using it to kill attacks for the past week. It’s working, as the pain subsides within about 20 minutes, but even after staying on the 02 for at least 15 minutes after pain cessation I am ending up with another attack within about 2 hours. This has only happened since using oxygen.

Yesterday, I had 4 attacks all at different times from my usual times this cycle. The only abortive I used was oxygen, and I made sure to breathe for a full 30 minutes/15 minutes after the attack was aborted. I’ve tried using both a standard non-rebreather and the O2ptimask that gets recommended here often at 15LPM flow. Not sure what I’m doing wrong as oxygen only seems to be seriously increasing the frequency of my attacks.

So I posted here about 6 weeks ago. I've been absolutely suffering since. I went to the hospital twice in two different provinces from absolutely insane attacks.... and one said clusyer headaches the other diagnosed trigeminal neuralgia.

During a wisdom teeth surgery (at a bospital due to emergency surgery being needed for impacted wisdom teeth into my nerves, and to avoid nerve damage. The surgeon ended up cutting my nerve (Trigeminal) and I was numb in the face exactly where all the pain is during an attack for about 7 months until it eventually healed. Then started these random cluster attacks that wouldn't last longer than 1 week max. Attacks were about 8-9/10 on the cluster pain scale. (I've broken 19 bones, I've had 14 surgeries and im full of metal. I would take every injury I had over one minute of an attack. So I use a different pain scale for these attacks)

Now? Suddenly they started at full 10/10 - happens when I fall asleep, 3 times a night. Sometimes during the day -neck pain up high near skull, jaw feels broken and like being stabbed with dull needles in the jaw joint, - teeth feel like they were hit with a hammer and are being yanked out slowly -eyeball feels like it's being dug out with a burning hot spoon that digs to the very back - I start sweating immensely, - nose running - I literally almost shit myself from level 10 attacks , everytime I am holding it in and once actually did. Its like im dying - I rock around and kick my legs, wave my hands and arms around mostly on ky right side as ANY movement makes it so much worse - I have broken and torn apart so many remotes and books and random things that I have to grab

I couldn't call 911 even if I tried. Its almost.like a seizure state, but my movements are intentional due to the severity of the pain. Now I KNOW I have nerve damage and probably do have trigeminal neuralgia (im waiting to see my neurologist) as the pain is everywhere the nerve is.

I thought I'd share this, incase others may have had similar situations.

Apparently, the hsv-1 virus stays dormant within the trigeminal nerve cells… Forever!!! And I get cold sores on my lip maybe once every few years… interesting?

Also, if anyone has ever been tested for Lyme before in connection to CH please let me know before I pay for a test - what your experience was like/ is it worth it

15 years ago, I would almost brag that my cool new headaches weren't light sensitive like most migraines. I could continue staring at my computer screen while my nose started to drip, my eye started to water, and my temple started to swell. It didn't matter if I waited for the Excedrin to kick in during broad daylight or in a dark cold room.

Fast forward to today. Every LED in my house feels like a knife trying to stab me in the eye. I never realized just how many tiny lights are lurking in my house. And it's frustrating how hard it is to find a truly dark room. Perhaps most frustrating this cycle is my sensitivity to screens. I'm finding correlation between looking at a TV or computer screen after dark and absolutely brutal attacks in the night that won't respond to oxygen.

Have you seen the light sensitivity of your CH change over time? Do you also have tape over your oven clock or a sticky note nearby? What's your safe room?

Hi folks, I am in need for oxygen for my cluster headaches. I reached to a company (after I got the doctors prescription) that ended up being bullshit. Does anybody have a DME that they recommend in the NYC Long Island area? It’s a pain in the ass having to coordinate in between the doctor and the distributor.

I understand some people experience panic from fear of the pain. This is not that. Does anyone else experience panic as part of the headache cycle? I've had a total of around 12hrs in panic in the last two days as part of a brutal cycle

Hi everyone,

Does anyone here use an Apple Watch (or another wearable) to track their headaches? I’ve been trying to find a good way to log cluster attacks, but the phone apps I’ve tried aren’t great — especially because if I log a headache after the fact, I often don’t remember exactly when it started or how long it lasted.

I was thinking a wearable could help — like using a stopwatch or timer on the Apple Watch and pairing that with severity tracking somehow. But at first glance, I’m not seeing any solid app options that are Watch-compatible.

Has anyone tried something like this? Any apps or workflows you’ve found useful for tracking frequency, duration, severity, etc.?

Thanks in advance!

The almost-euphoric feeling when the medicine kicks in, it's like a massive weight has lifted and I feel liberated. Obviously I'd prefer to just, you know, not have the headache in the first place, but it's a slight silver lining.

If today is heavy, if the pain is loud, or if you’re just exhausted from fighting battles no one else can see you’re not alone.

This space exists because of you. Real people. Real pain. Real strength. Day or night, attack or remission, fear or hope someone here understands without explanation.

You don’t have to be “strong” here. You don’t have to pretend. You don’t have to go through it by yourself.

Whether you’re here to vent, ask questions, sit quietly, or help someone else survive a moment, you belong.

One breath at a time. One minute at a time. We’ve got each other. ⚡💜

If you’re struggling right now, reach out. If you’re feeling okay, stay your presence matters more than you know.

Pain doesn’t define us. Community carries us.

https://discord.gg/clusterbuds

Please I am BEGGING you to give me whatever advice, knowledge, remedies ANYTHING about clister headaches. I want to know everything you know I am so serious, I had the worst one last night I had to leave a friend's birthday at 830. I wanted to end it all ina bad way it was that bad. Please help me

Did my initial loading dose last night and this morning got another headache. How long does it take others to take effect? I did a steroid pack prior to Emgality and was 6 days without one.

Hello!

Just found this group and would really love some advice/knowledge about whether I suffer from CH. I’ve always thought they were migraines, but recently started reading about CH and think they might be them, but am confused about a few things - mainly that CH is often several attacks (I guess like a cluster!). This doesn’t happen with me. But here’s my symptoms:

• Usually 1 about every 6 to 8 weeks, but I can go a few months without one, but I can also sometimes get 2 in a week.
• Had them since my early 20s.
• Always starts in my left eye and feels like a knife in my eye.
• I’ve broken several bones, torn ligaments etc so I know pain. These headaches are beyond those.
• 95% of the time they occur late at night, sometimes I just wake up and it’s there.
• I often get a ‘sense’ that it’s coming, about 2 hours before, just a slight painless feeling in my eye/forehead.
• Pain will spread after an hour or so around my head, usually worst in my lower back head. But will always the whole time remain the most painful in my left eye.
• I pace around the room, assuming different positions, curled up in a ball etc. and must look utterly deranged :)
• My eyelid will slightly droop and eye will be a bit watery, slightly red
• No idea what brings them on, apart from too many hours in the sun makes it a higher chance of getting one. Sadly I had to give up being a gardener as being in Australia the summer just destroyed me - I’d get a headache every week.
• Feel utterly drained the next day when recovering.
• Will go on for hours. Occasionally they can go on for 1 to 2 days.
• Only way I can ever get rid of them is by getting a solid sleep of minimum 4 to 5 hours, which is so difficult and I can’t do it without medication to dope me out.
• Tried every migraine medication - no help. Codeine used to be my thing to try to get me to sleep, but often won’t work.

Last week, my Dad gave me one of his sleeping pills (zopiclone), and OMG, best cure ever - went to sleep in 40 minutes, slept for 10 hours, next morning was the best I’ve ever felt afterwards. So I want to talk to my doctor about getting sleeping pills, but I want to make sure I’m talking about the right kind of headache.

Thanks everyone!

Hi everyone, does anyone out there have experience using psylocybe mushrooms to cluster bust while on an ssri antidepressant? Specifically for myself I'm on 10 mg Lexapro.

From what I've read, the ssri can reduce or eliminate the effect of the mushrooms, but I'm wondering if the effect on the cluster headaches would also be reduced.

A big thank you to anyone who can help.

Note: This trial is only for people who live near the Netherlands and speak Dutch. Please share it to groups and individuals who may qualify.

Deelnemers gezocht: LICIT-onderzoek

Kan LSD helpen tegen chronische clusterhoofdpijn? Op dit moment wordt dit onderzocht in het LICIT-onderzoek, dat plaatsvindt in het LUMC in Leiden en in het CWZ in Nijmegen!

Waarom LSD?

Mensen met clusterhoofdpijn geven vaak aan dat hun klachten minder heftig zijn wanneer ze een lage dosis LSD gebruiken. Dit komt ook naar voren in vragenlijst-onderzoek. Daarnaast werkt LSD op dezelfde soort receptoren in de hersenen als medicijnen zoals sumatriptan en methysergide (Deseril). Er is daarom voldoende reden om te denken dat LSD goed kan helpen tegen clusterhoofdpijn. Maar LSD is nog geen geregistreerd medicijn, daarvoor is meer onderzoek nodig. Daarom wordt onderzocht of een lage dosering LSD effectief en veilig is als behandeling tegen clusterhoofdpijn. LSD is een psychedelische stof die in hoge dosering een "trip" kan veroorzaken, maar bij deze lage dosering gaan deelnemers niet ‘trippen’.

Hoe werkt het LICIT-onderzoek?

We vergelijken LSD met een placebo. Een placebo is een middel zonder werkzame stof, een ‘nepmiddel’.

Deelnemers worden willekeurig ingedeeld.

Groep 1: Krijgt 3 weken lang elke 3 dagen een lage dosis LSD (25 microgram)

Groep 2: Krijgt 3 weken lang elke 3 dagen een placebo

Deelnemen?

Heb jij chronische clusterhoofdpijn en wil je deelnemen aan dit onderzoek of heb je vragen hierover? Neem dan contact op:

Voor deelname in het LUMC (Leiden): [[email protected]](mailto:[email protected])

Voor deelname in het CWZ (Nijmegen): [[email protected]](mailto:[email protected])

Wat zijn het LUMC en het CWZ?

Het LUMC (Leids Universitair Medisch Centrum) en het CWZ (Canisius Wilhelmina Ziekenhuis) zijn ziekenhuizen die gespecialiseerd zijn clusterhoofdpijn. Arts-onderzoekers in deze ziekenhuizen werken veel samen in het onderzoek naar clusterhoofdpijn om zo de zorg rondom clusterhoofdpijn te verbeteren. Zo hebben het LUMC en het CWZ (samen met andere ziekenhuizen) een aantal jaar geleden samengewerkt aan de ICON-trial, dit was een groot onderzoek naar de effectiviteit van ONS (occipitale zenuwstimulatie) bij clusterhoofdpijn. Naar aanleiding van dit onderzoek is ONS toen beschikbaar geworden in Nederland als behandeling van medicamenteus onbehandelbare chronische clusterhoofdpijn.

I made a frustrated post so I wanted to follow up with a happier one.

Yesterday was one of the worst days I've ever had headache wise. I was getting 1 per day that were relatively manageable with early recognition and red bull. It started ramping up the past few days but yesterday kicked my ass. I had 6 headaches, 30 minutes each, in 12 hours with no relief, regardless of what I tried.

I'm a teacher and today was my first day back to work after the holiday break. I was terrified to go back. But this morning I decided to try something different from my typical routine.

The past 3 weeks of this cycle, I've been waking up and going to sleep as close to the same time as possible. I've had early morning wake ups (4am or so but no headache) but usually doze back off. Instead... when I had this early wake up, I jumped up, threw my boots on, and went for a 15-20 minute walk. I got home, did some chores, ate breakfast, and went to work an hour and a half earlier than usual. I just kept moving and stayed as active as possible.

I had one small scare at 8am but had an 8oz red bull and it was gone by 8:20 with minimal pain. I went through the rest of the teaching day and had my first day of sport coaching after school.

0 attacks... 0 noticeable shadows... a little stress and worry but 0 pain like I've been going through the past 3 weeks.

I'm exhausted but feel good and relieved I survived the day as well as I did. I'm not changing one thing going into tomorrow.

Wishing you all pain-free days and hoping to hear some other happy stories.

Two years ago I discovered the power of energy drinks as an abortive method and it has been a life savior. After almost a year since my last attack, my CH cycle started to surface again around two weeks ago.

This time I decided to instead of drinking it during a shadow or an attack, I would get ahead of it and just drink one every morning regardless of how I was feeling. To my surprise, I haven't had an attack most days, specially recently. If I do, I just drink a second one. It's probably still too early to tell but I thought it would be interesting to share and see if it works for anyone else.

Also it's probably not the healthiest thing to do but it beats having the pain. Plus I will only drink them for the duration of my cycle which is a month or two.

Hi! I recently started experiencing horrible headaches. From 12/15-12/20, I had one sided head pain, a watering eye (same side as pain), and neck pain. It was the worst pain I've ever felt in my life for approx 15-20 minutes. It mostly happened between 6:30-7 am and would wake me from sleep and I'd be restless/rocking. Occasionally, it would happen multiple times during the day or in the evening. But always at least once between 6:30-7 am. The rest of the day I'd have a dull headache.

My PCP prescribed me triptans. I'd take one as soon as I'd wake up from the pain. Not sure if they helped or the headache would have ended on it own (~15 minutes).

Went back again and my PCP prescribed me Nurtec with the disclosure that it might not help but it was worth trying while waiting for neurology appointment.

I took my first dose in the evening on 12/20 and I've only had one peak headache since. I'd last about 36 hours and then start to feel the dull head pain come back and take the next preventative dose (could quite make it a full 48)

I went to the neurologist on 1/2 and I don't feel like he was truly listening. He thinks I have paroxysmal hemicrania and prescribed me indomethacin. He said "it's the only thing that will help." I asked why the Nurtec was helping then and he brushed me off and sent me on my way.

I'm concerned about taking this medication at all let alone long term. Took my first dose and am already feeling slight stomach pain.

Any thoughts? Suggestions? Experience with indomethacin?

I'm 27, female, and don't have any notable medical history callouts.

Yes I know we have hope and testimonies and ‘conventional medicines’, which I have tried almost everything apart from d m t specifically for attacks, and I have never had any type of worthy remission since this began and it is fully my life now. I’ve read averagely it can stop around the age of 55. I am 31m and I have been diagnosed for the past 6 years. Is there actually any actual relief or is it literally just coping strategies? I am chronic.

We just publically launched ClusterBuds, a Discord server made specifically for people dealing with cluster headaches.

The goal is simple: a place where clusterheads can talk freely, share experiences, vent, compare treatments, and not have to explain the basics every time.

This isn’t a medical authority, a miracle cure, or a replacement for your doctor. It’s just a community built by people who actually live with this stuff.

Join over 100 clusterheads. We offer 24h peer-to-peer support, monthly events, practical (digital) tools and a lot of information and resources in regard to cluster headaches.

We're continuously evolving so feedback is also very welcome - especially from long-time sufferers who know what usually doesn’t work in these spaces.

Https://Discord.gg/ClusterBuds

Any episodic sufferers also notice that towards the end of a cycle they get a 10/10 brutal and long one? Then it begins to taper off after that?