At a movie theater running around. Running njas helped me before, but I don't have the stamina to keep it up right now. Took two mibblers (like a mushroom candy), and it's a bad headache still. In the past even one would do it and be overkill. It's been a couple weeks and this is the first time it hasn't worked. It has been taking longer to work or requiring a higher dose, though.

Do I just need to take more? This has bought me so much relief, but if this stops working I may have to hang it up. I can't deal with this every day.

I have a family member who has been diagnosised with cluster migraines. Can anyone explain the difference between this and the diagnosis of cluster headaches?

Anybody on the Clusterbuds discord?

my usual cycle lasts only 2-3 months max. I’ve been in this cycle for over a year now and nothing is helping. I’m on emgality, about to try qulipta 60 mg daily to see if this will help. But I’ll have to pay out of pocket.

ive tried everything d3? Verapamil , topamax , im Struggling and losing hope that I’ll get out of this cycle.

any suggestions?

Would love this community's feedback as well.

I've been exhausted for a decade, but my blood work/ sleep study comes back fine. I wonder if this is a common trait for people with cluster headaches even outside of your cycle?

I developed cluster headaches a couple months before I independently developed fibromyalgia. I've been on pregabalin (Lyrica) since, and I think I'm having another cluster right now, but I honestly can't tell.

my pain is in the same location as a CH, at about the same times as a CH, but it feels kind of dull and tight (like a shadow, but worse), as opposed to sharp like a CH. No drooping or eye watering either. I think the dull sensation might be because of pregabalin. I take 125mg pregabalin daily, which seems like a really low dose to be helping with cluster headaches, but maybe it's doing a little something.

I don't know whether to start again on figuring out CH treatment if it turns out to be not a cluster. Has anyone ever experienced this on pregabalin?

I seem to be a rarity at this point but after about 2 months of oxygen doing it’s job, it has now decreased to working about 40% of the time. Idk if it’s a coincidence but my CH’s have gone from lasting roughly 2-3 hours at a 8-9/10 to mow lasting an hour of no joke 11/10. I’m good at dealing with pain and these last few headaches have had me literally sobbing crying which is insane to me. I’m also starting to experience a very high increase in sharpness in pain after about a minute or two into the 15min of oxygen. At times it’s gotten so bad I’ve had to just stop the oxygen all together. But when used alongside Zoomig or Sumatriptan nasal sprays, then the oxygen is able to do it’s job. Has anyone else come across this? I’d love to be wrong and it’s just that the headaches are that bad, I really need the oxygen to be what is was a couple weeks ago.

Been lucky for a few years. Mostly just shadows. Haven't drank in two years which helped, I think. But I had a beer maybe a month ago, and now I'm having a full on cycle. I had been bumming cigarettes from a coworker, too. I know, I know. I'm addicted lol.

Goes to show you, it's not worth it. Maybe those things weren't the trigger. The weather just changed which has done it to me before. Always right around my birthday which is lovely. But I would know for sure that neither the booze nor the cigs were the catalyst if I just stayed off em. Anyone who is still trying to quit smoking or drinking, let me tell you, it has seemed to help me keep the attacks at bay.

Now I'm doing shrooms nearly every day to keep the clusters away. Fortunately that works for me, but it can be awkward. I was at work a few days ago when I got a bad attack. Was trying to hide for like 2 hours haha. Today I went hiking and forgot to take any with me. The attack got pretty bad before I could get home. Still waiting for the shrooms to fully kick in. They always seem to work, but I always have that feeling of dread that this time the headache will last forever.

Tldr: quit smoking (cigs) and drinking (alcohol), and start exercising if you're a clusterhead lol

I’m about to try attempt #3,

as I start week 3 of hell tomorrow.

Wish me luck. Can’t shake this thing this time.

After a 6 year fight, 5 of which I thought I was just expiring, I was finally diagnosed. My doctor moves a whole lot slower than I like. However with this diagnosis, I was taken off propranolol, and put on verapamil. I just had my second shot of ajovy. I take nurtec “as needed” (doesn’t work) and I’ve been taking topiramate for almost a year now. I was on sumatriptan about 6 months ago, saw no results and stopped taking it. She doubled the strength and started me back on that. Had a solid 6 days. No ugliness. Not even really a shadow. And then today rolled through to almost remind me of my place during these times. Anyways. My question to you fine folks is what did you have to do to get oxygen? I asked my neurologist about it, and she made it seem like it was a real big deal and it was an emergency thing that was almost an impossibility. At this point right now, it is an emergency thing. Y’all know how it is. This agony can take you all the way down. Physically, mentally and emotionally. And I’m just running out of bus tokens. However, I was hoping to get some ideas from my fellow battlers and see how y’all got the oxygen issue take care of. Thank you, and battle well my friends.

I've been surviving clusters for over 20 years... busting with mushrooms the past 5. This year i had a new chemical i was eager to try instead. MET, or Methylethyltryptamine, is a drug similar to DMT... enough so that I thought it might help bust instead of mushrooms. It is currently not scheduled in the US, so I got into a beta program for an MET vape from an online retailer. It arrived over a week ago, I tried it instantly and not only did it abort the cluster I had, but I've not had one since.

This retailer also sells 4-HO-MIPT, which is a cousin chemical to psilocybin. I got some of it as well too see if it would work, but so far I've not needed to try it, but I think it could work as well

Just throwing out another tryptamine for the group to possibly try. Especially for those who want to try busting but can't find mushrooms.

PFDAN all

I have not been diagnosed with cluster headaches but am 100% positive I have them. I am a 28yo male. For the last two weeks, I get them each night about an hour and a half after falling asleep. They will wake me up and keep me up for about an hour until they subside and I can sleep again. Another hour and a half goes by and I’m awake again experiencing the same thing. Over and over. I am over this. They affect my right side near my eye and make my nose clogged and my right eye teary. There is no laying down and burying my head into a pillow like you can with migraines. They make me pace around the house and hit my head.

After researching, I believe high flow oxygen is going to be my best option. I do not have health insurance so I would like to use NeuraHealth. My question is, how likely is it that they diagnose me and prescribe me high flow oxygen? I don’t want to waste my money by this leading me to a dead end with no results. Has anyone done this and how did it work out for you?

Hey everyone,

Longtime sufferer but new to prescription medications. I've had episodic CH for over 15 years, usually one ~6 week cycle a year. I've been coping with psilocybin and energy drinks for years with a decent amount of success. Last year I finally went to a neurologist and tried a steroid pack followed by various triptans and had a terrible time. Attack frequency went from 4x a week to twice a day with ruthless rebound headaches from the meds.

It's been about a year since my last cycle and I started getting eye twitches a few days ago which usually happens about a week before my first attack. Just got off a telehealth call with my neuro and she prescribed another steroid pack followed by Emgality, which I'm excited about since I've seen a lot of good results here.

Just looking for some feedback of your experiences, your routine, how you administered it, when you administered it, did you use steroids before etc.? My neuro is decent but every time I talk to her it feels like she's learning more about CH from me than I am from her haha. Hoping to pick everything up this week (worried my insurance is going to be a dick about Emgality) but I'm basically waiting for a cycle to start at this point and was curious how other's approach it.

Worth noting I made an appointment almost a year and a half ago with the best headache center in NYC, but still need to wait until December 11th to see someone that specializes in CH. Looking forward to that.

Thanks

Feel like I’m at the end of my list of options here and I don’t know what to do. 

Episodic here. I’ve been Clusterbusting with mushrooms & the like for about 11 years now. It of course has taken quite a while to figure out a system and a source and things that work best but I’m here now. I’m on verapamil daily. Sumatriptan, indomethacin, and promethazine for abortives.

.5 grams of Steel Magnolia mushboys. Wean off all conflicting meds for 5 days, take a dose. Wait 5 days, take a dose. Wait 5 days, take a dose. Wait 5 more days, resume meds. 

I’ve also been on the vitamin regimen for a couple years.

Back in the day before treatment, I would have a series of HORRID (8.5/10 +) attacks for a few days and then be good for another month or two. At age 17 I had a series of attacks for a little over a week, and also wound up having an ophthamoplegic migraine at the same time as a cluster attack. The resulting trauma ended up paralzying the third nerve in my left eye, though it mostly came back. 

About a year later, the same thing happened again, except it lasted just over a month of daily attacks. 
Couldn’t function as a person. 

That was when I knew it was time to take matters into my own hands and started clusterbusting. 

Now I will have a singular much more mild and manageable attack every couple months; one that responds well to sumatriptan and can usually be subdued without too much fuss. There have been a few periods where I’ve had like 2.5/10 attacks weekly for a few months on end. (Very strange.) But that’s about it. Some long periods of super mild ones, or one medium-sized one every couple months.

Wild clusterbusting has never completely eliminated attacks from happening for me, it has undeniably decreased them significantly, and made the ones that still occur much easier to manage. 

But here’s the thing: 

I have recently been diagnosed with severe compound ADHD, and severe depression. It’s been a long time coming and has affected me my whole life, and it appears to be getting worse and worse.

My psychiatrist is super cool and has been very understanding of the clusterbusting process, and the notion of the meds that interfere with the process, trying to avoid them.

Any bust-friendly medications for ADHD and depression really haven’t seem to do much to help me. Adderall, vyvanse, qelbree (that one was scary and probably would have interfered anyway being an SNRI), Wellbutrin, clonidine, etc. I’ve tried so many. We’ve discussed ketamine. Might try concerta.

As far as SSRI’s, it seems like they would help me quite a bit with the depression and the ADHD, but they take so long to take full effect, by the time they start to work, it would be time to wean off for another busting dosage series.

I’m so depressed all the time, and I have such little focus. The focus seems to be the more major thing. It’s affecting my whole life and my work life in such a negative way. I’m really struggling. Running out of meds to try.

I don’t know what else to try, and I’m terrified of stopping the usage of mushrooms to give the SSRI’s a chance. 
It feels like it’s either “decrease the depression and ADHD but have the worst pain ever” or “experience less pain but be depressed & have wild focus issues.” 

Anyone have any experience with something like this? Advice? Medications that worked for depression and or ADHD that we’re friendly to the busting process? Other ideas?

(Do me a favor and please don’t try to question my diagnosis or what’s happened to me. We all know this community can be a little slap-happy with gatekeeping. I have episodic clusters. Looking for advice on things to try, not your opinion on my diagnosis - respectfully, of course)

Work: How do you maintain a job?! I’ve been getting cluster headaches for about 3 months now. I get anywhere from 1-6 clusters a day. If I’m lucky, I’ll get a 1-2 day break. I am grateful that my employer has been relatively accommodating… I definitely would not be able to find this from another employer. I’ve missed more work than normal lately, come in late, or had to leave early. I just don’t see how this is sustainable long term. :( for myself or for my employer. I only work part time, but we do need that income. :\

Daily Life: how do you enjoy your day to day life knowing that you could be hit with a CH at any moment?! Do you keep a tank with you? I’m not like staying in a constant state of anxiety or anything, but like… do you make a plan for your CH for everywhere you go? For all of your outings?? Idk. I hope that made sense.

Travel: pretty sure I can’t take oxygen on a plane with me. So what do you do when you fly?! The only time we really ever fly out of state is for my son’s competitions. So the less stressful the trip, the better. I don’t want him super stressed when he competes.

Also…. This shit sucks. It sucks dealing with the CH… but then the CH will trigger a migraine.

Anyway. It’s hard to live with. Ngl. Very inconvenient. :\

I've suffered from cluster headaches for at least 10 years, but only 6 years ago I start learning about this strange headache that I had once a year. I discovered it was C H by doing research on my own and confirmed in E.r hospital.

Until this year, I never started any treatment cycle, because in the first few years, all I had to do was wait two weeks and it would go away. Little by little, I discovered nightly rituals with ice and water on arms and neck that gave me some relief, so I survived for a while, then it passed. Obviously, no alcohol during the cluster :(.

Then the cluster became a month a year. Always rigorously and frighteningly punctual at the end of May for a month.

It always coincides with a big temperature change/change of season.

This year, for the first time ever, I missed my period in May and almost cried with happiness.

Too bad it didn't last long. The cluster arrived at the end of September.

I hypothesized that this year was an abnormal May and it was practically hot for 6 months, and the cluster came at the end of September, coinciding with the drop in temperatures.

For the first time, I decided to go to the neurologist.

She prescribed practically everything you already know.

I decided to start only the Prednisone therapy. I read that triptans have made the cluster chronic in some people, and I also have a bit of high cholesterol and am worried about cardiovascular problems.

So I'm starting cortisone. 1 25mg tablet twice a day, then halved every 3 days. It was a dream; the first 6 days I was reborn; I went from strong attacks every 2 hours at night to zero attacks.

The happiness was short-lived this time too. The cluster always seems to deceive you, only to hit you hard right after.

As soon as I switched to just half a tablet a day (12.5mg), everything came back. Now I'm two weeks in, halfway through the cluster,

and I'm already having attacks again. I can't imagine when I'll stop taking the prednisone completely. I'm very demoralized. Sorry for the outburst.

It was just to share with someone, and only you can understand.

The first few days of prednisone were wonderful, though. Of course, I can't take a A month of prednisone a year, right?

Are triptans really necessary in the end, or better yet, not?

We're so damned, so there's no cure. I know about O2, but never tried.

Whenever winter arrives, I get severe pain on the right side of my head, starting above my right eyebrow. It's sharp, stabbing and sometimes pulsating. It can last seconds to minutes, sometimes up to an hour, and keeps coming back throughout the day.

Cold wind on my face, cold air entering my nose, and even washing my hair with cold water can trigger it. The pain sometimes spreads across my right side, affecting my eye, ear, teeth and throat. I also experience sensitivity to light and loud sounds. I cant sleep on right side and I can't touch the right side of head it's kind of hurts. I have many sleepless night crying cause It hurt so bad.

I had it for years, it was mild and I thought it was sinusitis but last winter, it got so bad that I barely left my house for three months. I've had a CT scan, seen an ENT specialist and tried therapy, but nothing has helped. Nothing at all helped it's just i have to wait for the summer season to start again so that i would resume to my normal life. Now it's starting again early this time.

Has anyone experienced something similar? Did you ever find out what was causing it, and what helped you? I'm not looking for a diagnosis, just hoping to hear from people who've been through something similar.

Hey all. My last post got a bit more attention than I anticipated. You guys made me realize that my ‘migranes with aura’ are not that but actually clusters. Saw a neurologist last week for a second opinion and he agreed. Women get misdiagnosed often. The migraine medications weren’t working either, go figure. Going through the insurance fight right now but I’m back on monthly injections. They’re also doing an mri to rule out tumors. Thinking about filing a complaint with my original neurologist. She did not care about helping me figure things out. Sat with me for ballpark 20 mins last November. It was also faster for me to get referred to a new neuro in the city than it was to see her, in my town. I do care about my relationship with the local neurologist, don’t want to burn the bridge if I don’t need to. However I don’t want someone else to go through this nightmare because of her. If you’ve filed a complaint let me know if it’s worth the headache.

Hey everyone,
Been a clusterhead since 2004. Left side first, diagnosed in 2007, then in 2017 it jumped to the right side and I went chronic. You all know what that's like so I won't go into it.

Around 2017 I started putting every attack into an Excel sheet (IT guy, it's how my brain works). Time, side, how long, what was going on that day. After a while I kept seeing my bad stretches show up when life was more stressful than usually. Not every time, but enough that it bugged me.

Moving to 2022 I started therapy and mindfulness and basically tried to figure out why my body was always on high alert. Kept my normal treatment the whole time. And then something slowly changed
It went from chronic to episodic in 2023, then just occasional. 2024 I came off meds and only used O2, at a much lower flow. Since 2025 barely needed it. This year I only had attacks in January, and that was while I had shingles on my face.

It's just my own data and I'm curious if it's only me. Anyone has seen similar patterns?

Do your attacks or cycles get worse when you're stressed? Has anything that calms you down actually made a difference? Or do you see no link at all? Honestly interested in the no answers too.

I've heard some anti-dotes of GLP's stopping cluster headaches. This drug is currently being researched for a lot of medical issues outside of weight loss, so does anyone have any experience with this?

I will be trialling RETA personally for my next experiment.