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I am what I thought was the end of my cycle. I thought it would be over about two weeks ago, but I keep getting headaches every couple of days that are kind of minor. If you will, they don’t make me scream at the top of my lungs and I can sometimes talk myself out of them without taking a shot. Has this happened to anybody else? I don’t understand. I don’t remember this happening before. I just am starting a new round of steroids three days of that one that starts with a D Dexy something.

Okay do I have had a really long spell, which I thought was ending two weeks ago. It stops then I get pretty mild ones in the evening/middle if night. Then nothing for a day or two. The mild in middle of night. When I say mold, I mean I am not screaming. Sometimes I take a shot, sometimes I talk myself off the ledge. What the heck??? I am taking another round of steroids to see if they leave. Has this happened to anyone?

I fish as much as I can, At the ocean and inland at local streams and lakes. I have not found any connection with fishing and clusters.

Are you speaking for Clusterbusters?

Good day, I hope you all are doing great. One of my many hobbies are surf fishing. However, and considering my ceramic hips, I haven't been fishing in years. I would love to go back to it, however I was at the beach up the south coast a few weeks ago. Spent about a full day there, and I noticed that a cycle began a day afterwards. So not sure if that does have something to do with being at the beach. Was a full moon as well towards that evening. I love fishing alot. I do know the lunar activity does obviously have an impact on the ocean and tides. Basically anywhere there is water.... Including I side our heads. Anyone think that this would spark a season or not or interfere with my D3 Regimen? I remember reading years ago about the moon, ocean and how it could start a cycle but nothing was really concrete. Just want to make sure and don't want to deprive myself of my hobby. I find it relaxing otherwise and atleast I can get out the house for change despite all the horrible challenges I have endured over the years. Thanks for all the advice in advance Snowflake

Totally get it—I’m not saying kilts are a cure, but if they bring a bit of comfort and even slight relief, I’m all for it. If anyone’s curious, I’ve been using The Utility Kilt—super comfy and surprisingly practical!

I wish it was that easy!!!!!!, really don't think wearing a kilt will cure us, but glad your getting some relief

i wear a toga and since have been cured

Hi everyone, I’ve been part of this community for a while, and I’ve noticed something that might be a bit odd, but hear me out. I’ve been dealing with cluster headaches for some time now, and recently, I started wearing kilts more often (I know, a bit random). What’s interesting is that during the periods when I wear a kilt, I’ve noticed my attacks seem to be slightly less frequent or intense. I’m not suggesting there’s a direct scientific link (yet!), but I thought I’d bring it up to see if anyone else has had a similar experience. Could it be the change in posture or the breathability of the fabric? Or is this just a coincidence? Would love to hear from anyone who has noticed any patterns or has thoughts on whether something as quirky as wearing a kilt could have an impact, even indirectly. Looking forward to hearing your thoughts!

Hey Clusterbusters, If you’ve ever felt the frustration of being misunderstood, misdiagnosed, or just ignored because of your cluster headaches, you're not alone—and it's time to change that. We’re working on a coordinated advocacy push this year, and we need passionate voices like yours. Whether you want to write your local rep, share your story publicly, or support our awareness campaigns, there’s a way to get involved. Ideas we're working on: A 2025 virtual awareness week Advocacy training webinars Congressional outreach efforts Patient testimonial collections Drop a comment if you’re interested in joining the effort or have ideas of your own. Together, we’re louder—and stronger.

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These days everything is some poly plastic stuff. Do yourself a favor and find something 100% cotton. It's the worst when all sweaty and being surrounded by plastic materials. One of my favorite items is a cotton beach towel and they are softer for when the face is full flare.

Thanks! Glad to hear I’m not the only one who notices that temperature shifts and clothing make a difference. The blanket idea is smart — I might try that since I also get those weird hot/cold swings during an attack. It’s wild how even small changes in comfort can help take the edge off. Appreciate you sharing!

Yeah, I go from dripping in sweat to a cold chill pretty fast after the pain breaks.

This is great. When I get an attack, as long as I'm at home, I immediately lose the pants and keep a blanket nearby as my body temperature fluctuates frequently during a CH.

Hello fellow CHers. Currently in an attack and eating a low histamine diet. I was curious if anyone knows about long it takes for a CH to set in after eating a potentially triggering food. Could it be in minutes, or does the food need to metabolize first?

Hey everyone, I’ve been battling cluster headaches for a while and recently started wearing a utility kilt to stay cooler and more comfortable during attacks. Believe it or not, ditching tight pants and staying ventilated actually seems to help a bit with managing the heat and tension I get before a cycle. Anyone else find certain clothing or gear helps ease symptoms? Figured I’d share in case it helps someone. Open to hearing your experiences too.

I do hot soaks in the tub but it only works about 50% of the time. GL with that bust! TY Eric, you as well! I'm hoping that if a bust can't stop this that maybe it will end early since it's so weird. I usually go 12 weeks and just starting week 7 now.

Man, that sounds brutal — like your cycle put on a full battle kilt in week 2 and came charging in, only to ease off just enough to keep you guessing. Even with fewer attacks, those “dripping in sweat” bangers sound like they’re taking a serious toll. It’s especially tough when your usual aborts and busting methods aren’t working. I’ve had cycles like that too — unpredictable and stubborn, like a kilt-wearing warrior who refuses to retreat. Hang in there. Sometimes even the toughest cycles shift when you least expect it. Wishing you strength and relief — and maybe a cycle that decides to throw in the towel (or the kilt) soon.

Hi all, If you meet this criteria and would be willing to travel to PA to speak, reach out to me and I'll get you connected for an interview to see if you might be a good candidate. These are the qualifications: Cluster Headache Patient Male Aged 20-40 Diagnosed with episodic cluster headache (cannot be chronic), preferably by a headache specialist (we have seen patients frequently misdiagnosed as cluster) Currently prescribed more than 1 prescription medication option, multiple routes of administration (uses injectables or has past experience with injectables – no needle-phobia) Past experience with DHE in a hospital/clinic setting would be ideal, but not mandatory i. If he has had experience with DHE in those settings, hopefully it achieved relief

Over here as well. 6 attacks per day but I am just two weeks in this cluster usually the buildup is much slower. O2 isn’t helping much. Maybe once in 4 tries o2 worked als most every time until this cycle. I have to sit them out.in the hot shower again. and the L I took last Saturday was too old ? Friday is. My next busterday. I hope for the best. For all of us

Yes, this is a bad one and a weird one. It ramped up to week 8 action within the first two weeks then it shifted downwards and is easier right now than a normal week 6 of the cycle. Easier as in less attacks per day but the one or two per day I am getting are real bangers that have me dripping in sweat from the pain. This cycle also seems resistant to my abort methods and busting has not worked either.

Is it just me, or have cycles been hitting harder for some of us recently? Mine’s been more intense and unpredictable than usual. Just wondering if others are going through something similar, and if you've found anything lately that’s helped even a little. Hang in there, everyone.

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