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Yup jeebster, made this old man's eyes leak as well!! Absolutely wonderful and well written testament @LaurenAla! So very sorry for your loss!! As BeJeeber’s said, our supporters are our hero's......clusters are equally devastating for both the clusterhead and the supporter!! Thank you so much for sharing ya'lls journey with us Lauren...... ....Fair winds and following seas Lukas...

My husband started getting episodic cluster headaches in 2002. They affected his life so terribly he lost jobs, and missed tests at college. He worried about ever being able to hold down a job, or be a functional person in society- if he was taken out for 6 weeks, 2-4 times a year. Imitrex nose spray helped but only delayed the headaches- they always came back, and the rebound was worse than riding them out to begin with as they were often longer headaches than the 60 minute ones he had. I loved this man, to see him in agony was torture in its own right. I resolved that if the cure to cluster headaches was ground up Mona Lisa, then I was off to France with a ski mask in my luggage. My research began, to see what others had discovered, since doctors were damn near no help. In 2008 I found Clusterheadaches.com and it helped. Oxygen brought relief in 20 minutes. I learned how to crack a tank and properly attach hardware and valves and it scared me to do but what of it. But that wasn't enough. He was tied to the tank on the wall or small portable tanks. The search continued. I found clusterbusters.com in 2009. I had never done any drugs but I bought spores in cash, grew two fishtanks worth, dried them, and micro-dosed him. He only had to do it 6 times or so before the cluster headaches were gone forever. He'd feel the shadows come on, microdose, do it again a bit later, and poof- no cycle. They eventually left and just never came back. He spent over 13 years cluster headache free (we had 25 amazing years together) before he passed away in his sleep at 49 years old from complications from sleep apnea. This man, who worried what would become of him, got a double bachelors with honors in History and Cultural Anthropology and then got a Masters with Honors in Secondary Education. He became a History Teacher. He was nominated by his students to be an educator hero in his first year of teaching. We had 3 beautiful daughters. He taught them to fish and camp and cook and laugh. We traveled extensively. He kayaked the Pecos River. We had a glorious life. And I am so thankful that he got out from the shadow of this disease. And he was able to stand in the sun and live unhaunted by it for 13 amazing years. I will always be grateful to Cluster Busters for what it gave to my husband. So, so thankful. From the bottom of my heart- thank you, from me (Lauren) and from him (Lucas) You gave the world back a good man, and we are all better for it.

Not sure what a "Normal" life is anymore. My new normal is to deal with things one day at a time and adjust. I know I am going to get beat down with a massive cluster at any time of any day so I am always ready to fight back with whatever I can. I keep oxygen in the car at all times, I have it in my office at work keep a triptan injection near by as much as I can and a 5hr energy drink in my pocket. I can no longer drink alcohol so my new norm in a social aspect is water and coffee. I am not shy or hiding my clusters so when someone who does not know what I deal with and comments about not drinking or avoiding some sort of smell I tell them how it is. I can no longer burn a candle, my wife can no longer ware perfumes and depending on how my clusters are on any given day I need to avoid other scented things like cooking dinner. This is my normal life, not great but it is what I have so I embrace it and know things could always be worse. The new normal and I still love it.

Migraine buddy includes clusters these days It actually has great functions of adding meds or other ways that gave some relief or not. most ways of aborting are already in the app, so it's really easy to add them in a log. If it's not in there, you can create it yourself it's definitely worth a try. I think it's really helpful to keep track All I have to do is try to remember start/end times so i can put it in when it's over

It's astonishing to me how instantly tears can come to the eyes when reading this (especially the passing away at 49 years of age, but glorious life part). Thank you for posting this, replete with the ski mask, tank cracking etc. color . You are quite the example of an above and beyond cluster hero.

Follow your instincts & wisdom & knowledge of your own body, Jimmy. Adaptation for survival. On Verapimil you wrote on November 21st: "...it makes me feel very "off" and like I'm going to have a heart attack or seizure. And I feel very nervous exercising or exerting myself while (I) take it. " Being active & outdoors on average 2+ hours/day is the game changer that shifted my "new normal" for my Chronic CH. We are all unique physiologically & changing too. Exercise sounded insane to me 16 years ago when I had Episodic CH. When you are able to go 5 days without meds that are blockers (& cause rebounds) it may be possible to try busting again with better results. Have your O2 ready & cold caffeine if a CH hits. Ginger soft gels & CBD/THC help me with nausea. Still busting every 7 days since starting out with every 5 in September after getting hit at the CB Conference & getting rescue O2 & compassionate support & encouragement from our CB family. Grateful. Best wishes.

My cluster symptoms began after a traumatic brain injury with loss of consciousness However, there were other mitigating factors as well: other concussions, 2 cervical spine surgeries including a fusion (followed by an eventual 3rd surgery and 2nd fusion post-CH as a result of the TBI), sleep apnea, male, etc. But no prior drug use, heavy alcohol use, smoking, or family history of CH So I personally believe there may be a strong connection between brain injury and/or spinal injury and cluster. But the exact mechanism in play may unique to each person.

Hi Chris, I don't know of any specific to CH but I know there have been some posts on here with folks attempting to create one and I think one other that had successfully created one. In the very beginning of my joy ride when being told I had migraine, I used an app called migraine buddy which was good for tracking dates, medications and pain scale but I soon got tired of it and switched to a self created excel log which I also tired of at some point in my journey. I guess I just felt like looking back at all the bangers made me depressed which I was already really good at doing especially when in a cycle which seemed to be the time I was most apt to visit the log. Anyhow, tracking can be a good thing especially if you are trying to gauge your next doomsday and get in front of it.. Lastly you can use the search bar at the top of each forum page and plug in key words like App and a bunch of past discussions will come up for you to review.

Suppose I'm special as all I did was stand up from the darn couch to let my Abby doo inside (best dog in the universe), turned the handle and Shazam! Shocked to my very core, nearly thought I somehow got an electric shock but yeah me.. no such luck. I'm sure there are many reasons one is afflicted with the fluker bunny and I sure would enjoy more methods to rid ones self as apposed to why. At the same time I understand how the why plays into the rid as far as treatments go. That being said, I'm darn sure sending my list to Santa this year and hope he checks the flipin thing twice!! Keep on being the coolest kids in town!! Admiration to all of you CH survivors!

Hi everyone. Some of you may know me from a few posts in the closed section of this Forum earlier this year, and remember that I’ve been doing some amateur research into the circadian and circannual rhythms of clusterheadaches. After months of research, I was able to identify what I think triggers migraine and CH cycles. Considering how to make this information generally available, I decided to write a story about it. (But don’t get it twisted: the story may be fictional, but the science comes from actual research.) Anyway, here it is: THE CYCLES OF THE BEAST Description: During a chance encounter in Lisbon, Will and Laura come to learn of a disease that has been described as “the worst physical pain known to man” - like being stabbed through the eye with an icepick. Patients call it “The Beast” and it attacks its victims in cycles that can last for months, to then mysteriously vanish as sudden as it appeared. When they spot a pattern in the daily and seasonal peaks of the Beast, Will and Laura know there’s a job waiting for them. You can get it through amazon here https://a.co/d/enpEemE

OMG Jeeb!! Lord in Heaven please let my chrispified remains look better than Jeebs in his neon speedo! In your precious name amen!! LOL!!! Thanks to CHF your remains will most certainly have neon green specks of lycra mixed in with your ashes...!!! XO!

I would also say that the effectiveness of this anti-inflammatory suggests that you ought to be doing the anti-inflammatory "vitamin D3" regimen that has helped so many hundreds, or thousands, of people with CH: D3 regimen - ClusterBuster Files - ClusterBusters. In contrast to the anti-inflammatory you're using as an abortive, the d3 regimen is preventive.

This part looks good: Step 6: The body is returned to the family for burial or cremation and related ceremonies. ....because cremation is my one last chance for having a smoking hot body.

Here you go

I asked an A.I. image generator to convey the dark agony of a cluster headache...

Yes, caffeine is a great vasoconstrictor. My clusters also last about 8 weeks. (Almost every year or so for 25 years.) But I don't know what a mild CH feels like -- I'd rather "check out" than face a full-blown cluster without oxygen. I've been able to skip a couple years by doing the following: at the first indication of a shadow, completely cease both alcohol & exercise, and start taking 100 mg of caffeine every four hours.

Hi vanguard Caffeine has been discussed on here quite a bit with mostly positive references. It is know to help quicken the abort time when using O2 (quick shot prior to jumping on the tank) as well as helping with all sorts of things us cluster heads suffer with so my guess is that no, it was not a placebo. It's hard for me to be certain if something definitively caused an abort or if the CH attack just happened to end at the same time but I do remember grasping for straws one hellish attack and having it end with a cup of coffee..

I'm just super grateful that the condition is tamed with less cycles and supportive tools for when in cycle. I consider it a huge win. DMT vape pens are magical abort tools for our condition.

Is it an airplane ride that starts setting off the attacks, or just travel in general? Are your headache issues generally well controlled, or satisfactorily controlled, when you are not traveling? Do you mind saying what meds you are using (in part, I'm curious about what works for both CH and HC, or whether you have to somehow treat each one separately)? Vitamin D regimen comes to mind as something that might help. D3 regimen - ClusterBuster Files - ClusterBusters

@Kevin Broderick In this document (same one I sent you earlier with the O2 information), toward the end, there is a section headed "Treatments without O2." Some of them might help you. https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/

Hi there, In my experience with the D3 reg the magnesium has been the culprit for praying to the porcelain god from the wrong end. You could try taking it at bed time after eating or start out with a lower dose of the mag and work your way up. You can also try switching the type of magnesium you are using (not sure what type you are currently taking) but typically magnesium glycinate is the easiest on the stomach.

We should all aspire to have such neon green specs of lycra sprinkled throughout our final resting....um....urn? Right?

Tldr: tried Cambia, felt almost immediate relief I've had episodic cluster headaches for over 20 years, lasting from about 8-12 weeks at a time (usually twice a year). The last few really unbearable cycles that ended me up in the ER, the doctors tried prescribing me prednisone. Aug 2022 First time worked immediately and no cycle for a little over a year, Dec 2023 second time took a few days to start working but cycle did stop, then by the third time, August 2024 the pred did not work at all. I went to urgent care after finishing my last pred taper still having multiple clusters a day, and the doctor I saw prescribed me a combination of meds along with the triptan I'm already prescribed to help prevent any possible rebound headaches I was having - the stand out one being Cambia. This is the only medication I have ever tried that actually aborted a cluster headache in under 5 minutes or less. It's an anti inflammatory in a powder form that you mix with water (like taking a shot). Not my favourite taste but man, worth every drop that stuff is liquid gold when I have a cluster. Triptans can take up to an hour to work for me and honestly by that point, it's hard to say whether the Triptan actually did anything or if the beast just finally ended on its own. But when I take Cambia, the results are almost immediate and it doesn't make me a zombie the rest of the day like triptans can. I'm now nearing the time of year I usually get an episodic cluster cycle and making sure my emergency medicine stash is ready to go! Getting prescribed oxygen to help abort a cluster is an uphill battle for me but for now, Cambia is there to help me out!

Interesting about the "prescription non-steroidal anti-inflammatory drug that contains diclofenac potassium, used to treat migraine attacks in adults" Cambia. As is typical, there can be plenty of potential further discussion points contained within a report like yours - I'll just start by zeroing in on the triptans: By your description of them taking up to an hour, it sounds like you could have been prescribed the relatively slow acting pill form? Sumatriptan injections are of course known to be the most effective and much quicker delivery form, plus many get quick enough relief from triptan nasal sprays, but especially if deal killer GI issues aren't encountered with this particular Cambia NSAID, and if its effectiveness continues, it sounds like a much better abortive option for you - congrats on finding such a breakthrough! Here's hoping there's also an impending breakthrough with your O2 access, since success such as you are finding with a new abortive that is not widely recognized as effective for CH can sometimes be short lived.

Found this site https://www.nia.nih.gov/health/brain-donation/brain-donation-gift-future-generations#:~:text=Step 1: Enroll in a,or cremation and related ceremonies. Might help?

I am one of the people who highly believe the vitamin D theory actually holds more water than any other theory, so I will get in touch and see if they can take me on. The only problem is that my Cluster headaches are so wild and they last 4 months in a 2 year period. Am currently in the cycle but will be done with it hopefully and face it again in 2025. I get them every winter of an odd year. I was so curious to know why I got the 2-year remission, and so far, only the vitamin D theory has provided me with a plausible explanation. Vitamin D3 and Calcium are involved in bone remodeling and it's regulation under the guidance of the PTH. With deficiencies, its very very possible for the side effects to be felt in 2 to 3 year intervals while the body restores the balance. The cluster headache may be the body's way of short-circuiting us into giving it more vitamin D3 and, therefore, calcium for maintaining our bones. In a similar fashion, Verapamil, on top of its effects on the blood vessels, may work by stopping muscular tissue from using up all the calcium in the body and availing it for our skeletal tissue maintenance (Bone remodeling). And that's the only way I can explain the remissions. I think if we all did blood work constantly, we would address a lot of curiosity in this part. Currently, I have an uncle in remission for 15 years. He tells me even if someone offered him a million dollars, he would never want to go through his 20s and 30s again because of cluster headaches. Interestingly, the processes that use up a lot of calcium reduce with age, so maybe he hit the acceptable range of Vitamin D3 and Calcium, and his circuit breakers need not bother him again. So I really hope this study helps. Also, what is our common denominator? There must be some thing about us clusterheads that is common and unless we partake in researches, we won't find out. When the body causes us unexplained pain, the likes of which we get during these episodes, it is trying to communicate something..it is telling us something, and unfortunately, it speaks so many languages that we have failed to understand what it wants.

I'm getting slammed for the second time today and that is unusual. Took a pill and did some very deep breathing. Earlier today did this and it really helped but right now, not working... was talking to a good friend and it started to hit me again....just don't know. My brother is sending me some O2 equipment and just wish it was here right now but just saw your post and decided to ramble on about my problems. Happy holidays and merry freaking Christmas...whatever. No joke take care.