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Hi everyone, I’m new here and just wanted to say how grateful I am to have found this forum. Like so many of you, I’ve been navigating the challenges of cluster headaches and all the confusion, frustration, and pain that comes with them. I’ve tried a few things, some that helped a little, some that didn’t—but I know I have a lot to learn. More than anything, I’m here to connect with others who get it. Sometimes it’s just good to know you’re not alone in this fight. Looking forward to reading through your stories, learning from your experiences, and hopefully finding some new ideas or inspiration along the way. Wishing relief and strength to everyone out there.

Hi everyone, just wanted to say hello. I've been reading this forum for a long time, as has my sister, and figured I'd pop in. CH has unfortunately been a staple in my family. My mother had them, my two older sisters, and myself, I just turned 40. One sister has gotten past the CH after her 2nd child, and my other sister had success with Botox. These things have flat out ruined life for me up to this point. Between dr hopping and multiple scans and medical bills, it has been tough. Nasal sprays and injections were the only way out for years. Oxygen helped a little. I've seen every neurologist around me and never had much success. A few years ago, I started using prednisone to get breaks when I was at my breaking point. But that stuff rips you apart after a while. I've lost friends, hopeful relationships, and countless years of my life because of these things. I was also diagnosed with trigeminal neuralgia which just added more confusion. I've always poked into this page for a little bit of hope when I thought I couldn't take it anymore, and it always helped me out seeing success stories. I'm now dating someone who understands what we go through and has been an absolute rock for me. I'm fortunate. Last week the dr prescribed verapamil at 240MG day, which I tried years ago, and it didn't work, and finally, I got some relief. I didn't expect it to work, but it worked immediately which I thought was odd. But I'll take it.. I've looked over this page for years, tried every medicine there is, and was really losing hope, but I just wanted to say thank you. There are a lot of people out there who read but don't chime in but benefit greatly from the topics discussed here. Sometimes I think just reading about other people in the same boat as you can be tremendously helpful. but currently I'm on day 4 without a headache, which is INCREDIBLE for me. I feel like this page is full of unsung heroes. Thank you so much everyone.

I did pretty good through this period but the cycle has been ramping down for a while now.

Scientists Flip Two Atoms in LSD – And Unlock a Game-Changing Mental Health Treatment praying that this doesn't share the same fate like BOL-148 did, which has super promising results for ch but is not being really pushed forward.

Hi @dehabel, Sorry to hear of the extended cycle you're going through. Unfortunately it's not uncommon in the "clusterverse". Tons of variables could be the culprit for this happening. Not sure where you are located but here in CA it's high allergy season which can be a trigger of sorts. My last cycle that was extended from 4 to 6/7 months occured during a terrible fire that chocked out clean air for most California's. Im not sure what you're injecting when you say sometimes you take a shot but im assuming some sort of triptans? If that is the case you may want to research how to split the dose as triptans can also extend a cycle. You did not mention what you are doing to prevent cycles so I feel it necessary to mention the D3 regimen as well as busting which you can read about more on this site if it interests you.

Hey everyone. Been awhile since i’ve been on here. I hope everyone is well and in good health. The last time i was on here, I made some pretty anxious and depression-ridden topics about how i thought my life was over.. boy was i wrong. I’m posting this to further support the tools and methods that have been written about on these forums.. and to possibly give hope to those that feel lost, as I once did. The last 4 years have been some of the most eye-opening years of my life. I’ve made drastic health conscious decisions that aided in my relatively pain-free years. I’ve tried “busting” and diet changes. Both with great success. I listened to my body and found that a combination of Vitamin D3, magnesium glycinate and omega 3 supplements help keep my headaches at low pain levels or at bay. An (almost) gluten free, no msg or additive, low histamine, anti-inflammatory diet helps maintain that low inflammation in my body. Sleeping with my head slightly elevated and neck supported also helps me keep the blood pressure from building. I also found that getting sick with a cold/flu will immediately bring a cycle on. I assume because of the sudden onset of inflammation in the body. Especially in the face/sinuses. Taking valuable information given by Pete Batcheller, (don’t know his @ at the moment, sorry!) the cycles have been very minimal in times where they should have been grave and unforgiving. I’ve learned to accept the fact that I may have clusters for the rest of my life. I’m 24 years old, and for the first time in the 16 years i’ve had clusters, I’m finally OK with it. Where there’s a will, there’s a way. But it’s important to keep in mind that pain free responses will not happen over night. Not every piece of information helped me. Some worked, some didn’t. Having a strong support system of people helped immensely. I can partially attribute my positive attitude to one of the “busting” methods that we know about. These headaches made me appreciate the little things in life, which in turn, makes life much more beautiful. Music sounds heavenly, sights are awe inspiring, love for those around me increase. I can live my life knowing I have the tools and resources to stop a cycle, should it come back. I also learned that hardships and trying times await each and every one of us, but will never make life not worth living to the absolute best of our abilities. The human spirit is truly indomitable. I extend my love and thoughts to everyone here! I’ll be sure to keep everyone updated as I grow older

I had the pleasure of meeting Sammie during Headache on the Hill in March as she was part of our Texas delegation. https://www.theguardian.com/science/ng-interactive/2025/apr/23/cluster-headaches-magic-mushrooms-psilocybin?CMP=oth_b-aplnews_d-5

That is a very nice article!!!!!! My only wish, small in the context of how good the article is, is that RC seeds could get a mention in these kinds of stories. A discussion of them being generally legal to purchase and possess, highly effective, and generally tripless, would be very valuable for those folks who think MM would be too much for them, or too risky for them.

So strange to wake up and read this after having bad dreams all night about being in a house infested with big ugly yellow spiders (by product of all the time I've spent in the greenhouse latley i think). In my dream I was trying to vacuum them up, in hindsight I guess I should have been getting my snack on....

This is unrelated, except that taurine is involved. I post it here only because I just read it tonight, and thought it was fascinating, and taurine gives me the excuse. From What It's Like to be a Bird (great book!): "Chickadees mostly bring caterpillars to their newly hatched nestlings (they can collect over a thousand in a day), but for the first week or so after hatching the adults make special efforts to seek out spiders to feed their young. Spiders provide the nutrient taurine, which is essential for brain development and other functions."

...personal experience for me was 1500 mg taurine minimum to be effective (as energy drink ingredient...never tried as a supplement) best jon

No change in my clusters so far this week at all due to earth wind or fire. See you on the dark side of the moon!

You know to tell the dentist not to use epinephrine, I hope. It's a big trigger for many people. (As I understand it, it's added to Xylocaine because the epi reduces bleeding, so the actual anesthetic to avoid is Xylocaine+epinephrine.) This is from a post somewhere else: "Anesthetics containing epinephrine (such as Xylocaine) and nitrous oxide have been identified by some people as triggers. Ask your dentist to use something else: Prilocaine seems not to cause bad effects. Another person has mentioned carbocaine as an anesthetic that didn't trigger his CH."

Cycles extending longer than anticipated seems common, and that would include versions where the attacks are milder and fewer/farther between in the extended weeks. There has also been a minor flurry of reports as of late of CH'ers ending a cycle, only to have it then start right back up again for them. Weird that that one has struck a cluster of clusterheads all in a row, but as I more carefully read your report, it sounds like this fortunately will not be the case for you.

Hi, This is great news. I am so happy for you. I also went through the phase of hopelessness quite to the extreme. However, I found the answers within this wonderful group of souls and I so far have had 6 wonderful pain free years away from this curse. The only adjustment I made to my lifestyle aside from starting the D3 Regimen 6 years ago, was just stopping alcohol completely. I mean I was a social drinker but just stopped it. Now I can't even stand the thought of it. I still smoke since 1995. I haven't made any changes to my diet much, beside eating alot of apples and drinking alot of water. O2 has my back always just incase. So that is a must have readily available always. So goodluck going forward and keep to what works for you. Pain free wishes

Gonna be my go to snack when busting know!!!!!!

I'm with you bej, spiders for breakfast dinner and tea from know on!!!!!!

I guess I've just personally been clueless and totally missing out - gonna head straight to the garage and rummage behind boxes and stuff in hopes of making up for lost time.

Here's someone talking about a dose of 2000mg taurine to abort attacks. Taurine to stop onset of Cluster Headache - General Board - ClusterBusters It's hard to tell how much taurine is in a 5-Hour Energy shot, but one place lists it as roughly 480mg. An 8-ounce Red Bull is said to have 1000mg of taurine. This is another discussion of taurine: Taurine Supplements - General Board - ClusterBusters If you put taurine into the search bar at the top right of any page, you'll see quite a few entries, of which some might be helpful, although most don't mention specific dosages.

I’m in the fifth week of this cluster and last weeks have been hell. if it gets even worse today or tomorrow I will report.(I hope not

I'm in cycle right now and I have had it fairly easy for the last week so if I get some bangers on those days I will let you know.

Instead of debating the issue. Let’s see what happens this Wednesday and Thursday. To anyone in a cycle right now: it would be helpful if you could give us feedback and share here if you’re indeed experiencing a rise in intensity of CH attacks during these days.

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.

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 The injections have been discontinued in South Africa for some time now. I'm in Durban. However, what I found personally is that those injections, whilst it does abort the attack, it brings on a series of follow up attacks. I would suggest that you read through the vitamin D3 Regimen. Since I had been introduced to this magical treatment by fellow sufferers, it has really working so well for me. It does take some time to start working, however, once you are a month or so in it, it works wonders at giving you years of remission. Well that's what I found. You just have to be patient with beginning and once you in the game, you will be rewarded greatly. It is easy to lose hope whilst beginning. I did. But I gave it my all and I am pain free going on 6 years now. Whilst doing this regimen you will still get attacks at first, however, kill those attacks with O2 and maybe some OTC pain meds for the after pain on that side. Look for the D3 Regimen on this site. You won't go wrong. During these past 6 years, yes "he" did appear once, however I was guided to increase the D3 dosage for a few weeks and it phased off. Always keep O2 on hand. Always. Make sure to check your D3 levels regularly. When I started, mine was sitting at 18. Explained my brutal attacks and frequent cycles. I managed to bring it up over 80 with loading doses of D3 along with the rest of the vitamins within a matter of 6 weeks. I am so glad this is working so well for me. Maybe consider or read up on it. Well wishes. Snowflake

Welcome Eric! So glad you found your way here! There are so many people here that are willing to help, give support and advice on how to deal. Welcome!!!!!

Welcome Eric. You are in the right place. Wishing you a well informed read/research and I hope you find a path of management that suits you well to keep the Beast in its cage. Goodluck

Thanks for the welcome! I’ll give that post a read. Looks like it’ll answer a lot of what I’ve been wondering about. I’m sure I’ll have some questions once I dive in!

Wow! Outstanding article. Thank you.

I can make the world alot bigger if you want me to @CHfather

Made the ugly yellow spiders in my bad dream seem cute!!

People! Your worlds are way too small. Cooking Tarantula with Unique Style and Delicious Eating | Cooking Special Insects

Wait . . . You mean everyone doesn't already do that?

Glad you found some relief! Ain't Life Grand!

Welcome to the community and congrats on finding some relief!!

I figured as much DD. I stay as far away from Facebook as much as humanly possible, so my knowledge of goings on there is very limited.

Well there's no denying that you went through some terrible experiences and my heart hurts for you for that. While you can't change your past, you can create your future. With everything you've endured, I would imagine that you are incredibly strong (you are a cluster head afterall)! Keep your chin up and continue putting one foot in front of the other. Our past plays a huge role in who we are today. If you were stripped of your past you wouldent be YOU (not saying that you should have went through what you did) just that your stronger then most will ever understand because of it. Keep being STRONG... You got this!

I go off into the higher realms of consciousness during cycles. It's pretty easy to do when you are exhausted from no sleep and been tripping on stuff for weeks. During the worst attack in my life I heard dancing queen playing in my head note for note like it was really playing. That one was weird!

Also ... 20 Facts brochure 8-24-13.pdf Living with CH - 8.5x11 - 9-15-14[2].pdf

.....i think its the breathing part with or w/o oxygen. while not a panic attack in the true sense my initial reaction to a hit, yrs ago, was panic and thrashing and swearing and working myself into a frenzy. it took a while but i finally figured this over the top reaction was getting me nowhere. all this to say i adopted a verrrry slow deep breathing technique when aborting with O2 that had a remarkably calming, almost meditative effect and actually used an lpm similar to yours. aborts became quicker and calmer! your breathe and hold is another favorite....try this slow/deep....maybe even w/o the O2.

Stress has put me into cycle a couple few times for sure. Sorry for your loss.

Well.. I've never heard of death by D3 overdose but it would be a good idea to go get some labs done just to make sure your calcium levels are ok. I'm sorry your heart hurts and I know reliving the dreadful situation/reality is not exactly enticing or very palatable but it might really help to unload some of your inner turmoil/pain. Sending prayers your way.

So sorry you are going through all of this snowflake! Sending love your way!