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4 years?! That is fantastique - congrats to you @Alvaro! I would guess there's a good chance here that the recreational sort of busting during these 4 years could be playing a major role in your remission.

Today marks four years since my first (and, so far, only) CH cycle. It lasted about seven weeks, with two daily headaches at 10 a.m. and 7:30 p.m., like clockwork. I had no idea what to expect and had basically been told to prepare for them to come back at least once a year. But here I am, four years later, still waiting for The Beast to show up again—and hoping it never does. My first episode was triggered during a flight descent while I had a mild sinus infection. I was pretty nervous the next time I got on a plane, but nothing happened. I was also on edge when the first anniversary rolled around, expecting it might make a comeback, but... nothing I’ve never flown with a sinus infection again—not on purpose, it just hasn’t happened—but I still think that had something to do with triggering that first episode. It’s one of those things I’ll probably never know for sure. This anniversary got me reflecting, though. I’m so grateful for finding ClusterBusters back when everything felt so grim after my diagnosis. It made me wonder—are there others out there who’ve only had one cluster, or who’ve gone years between episodes? As for “busting,” I’ve done it recreationally about once a year—sometimes just a little dose at a party, other times a bigger dose while chillaxing with my wife or friends. I do wonder if it’s kept The Beast away, but honestly, I was busting occasionally even before CH, so who knows if there’s a connection. Cluster headaches are such an unpredictable, personal experience. I hope I never have to learn more about mine firsthand. I feel so lucky to have had nearly four years without them, but I still think about them probably five times a week. My heart goes out to those who don’t get this kind of break and have to deal with The Beast regularly. You’re stronger than most people will ever know.

Hi everyone my name is Sade and I’ve been troubled with cluster headaches for the past 17 years and I just found a remedy that has been working for me. So ok I linked the histimine release that happens and they say contributes to our headaches so i decided to take PEPCID ✨ So I take 2 20 mg tablets of Pepcid and it’s been working wonders. Then I started using Tiger Balm, it attaches to the nerves and I guess confuses them and stops the pain ITS AMAZING so as soon as I feel the clusters coming on I run TIGER BALM on all areas effected and that usually allows me to get ahold of if… Oh and I turn my neck to the side and that gives ALOT of relief on the C2 and C3 on my neck. Now I do both and it knocks down my episodes down to almost none a day! I know it’s crazy but it’s working! I hope this helps someone! Please try Tiger Balm and Pepcid and let me know if it helps anyone!

I don't know if this can help Mike but I hope so. I was desperately trying to find a preventative that would work for me. I tried Emgality for 7 months and it just was not effective at all for me. I don't have anything bad to say but sadly it didn't help me. I had thought verapamil didn't work when I had stopped it at 360 earlier in my journey. I later read a medical paper that the therapeutic dose for chronic started at 480-600. I than started verapamil again and found 480 did help a small amount and was over overjoyed. I am on 720 (240 every 8 hours) currently and have nights now that I sleep. I still have attacks mostly at night but not every night. Perhaps a higher dose of verapamil may help you. Your doctor may find this is appropriate to try ? Good luck Mike

Second Dr. Birlea. I am in Fort Collins and our local Neurologist was terrible. Last name Schaffer. He left FOCO, so avoid if you see him elsewhere.

I’m totally late to this conversation. I’m suffering from the exact same problem. I’ve suffered from cluster headaches for 15 years. I’ve taken verapamil and prednisone a lot. Verapamil doesn’t really do anything, but I’m on a pretty low dose. I’ve been taking prednisone on and off for several years now. I was prescribed when my insurance would cover it and I thought I could finally rid myself prednisone use. But I’m wondering if Emgality isn’t causing problem I’m having. Ever since I started taking it three months ago, I went through a 30 day cycle with two headaches a day, which was unusual for me. I just took my fourth month of 300 mL of Emgality after not having a headache for a couple weeks. Now I’ve had two days in a row with headaches. What’s the point of this medicine if it makes our headaches come back? Admittedly, they’re not as bad or as painful as they have been in the past, but they’re still quite painful and inhibit my life. I don’t know what to do, does anyone know an alternative medicine I could recommend my doctor look into and prescribe me and move on from this one? Does anyone have any advice? Please help -Mike

Can you take this with Anticoagulants .I am desperate and in the UK.cannot take Indocid.thwnk you.

If the BBQ pork was Chinese, I feel sure it's MSG that was the trigger. Even if it wasn't Chinese, there's a decent chance there was MSG in the sauce. Be sure he knows this about reducing the Trex dosage: Getting partial doses from sumatriptan injectors (Imitrex, Imigran, etc.) - ClusterBuster Files - ClusterBusters What you say about the Trex suggests that he doesn't have oxygen. It's something that could make a big difference for him!!

We just had BBQ pork and before my husband even put his plate down he was asking for a shot of immitrex! That’s how I got to this thread. Almost every allergic kind of reaction happens within 20 minutes, so this has got to mean something. Surely if this was a CH trigger I would find it here. Little did I know I would see other triggers that I’m recognizing in his patterns. Thank you, as always, for the guidance and help.

I am very curious to look at your work, but because my daughter has CH, I try to avoid the more vivid reminders of what it's like. I wish you the best.

Sorry, but you definitely won't find any sadness from myself over the butchers demise.....and his clinic closed after he was arrested for the murder of one of his patients and his license was revoked!!

Hey everyone. Thought I’d let everybody know the sad news that Dr Shevel, the South African specialist who has been able to offer permanent relief to his CH patients has permanently closed his clinic following the death of one of his patients.

I think venting when things go badly (in your case, really really badly ) is a good thing to be able to do here. It may be a bit much to hope for, but sometimes, some of us have been known to get a one-off rogue attack, with no new cycle starting up. I'm hoping against hope that this is what could have occurred with you today.

@CHfather Thank you! I'll look into it! And I'll share my work as I go along. In the meantime I'll just share this purely artistic rendition I did after my last major cycle. I know it doesn't have the signature droopy eye but I wanted to convey how much pain I get behind my eye. https://www.instagram.com/p/C1tI2uBN7R4/

Horrible, horrible, horrible. I am very sorry, and that interviewer should be fired, the bastard. I think it's obvious to us that even looking for work in your current situation is practically heroic. Gotta ask: Are you doing the D3 regimen -- that really makes a big, big difference for most people -- and have you managed to get oxygen? And is this common for you -- a remission period of maybe a couple of weeks and then the attacks come back? It's not clear to me what you mean when you say "The 5 day rule failed me." I remember that at one time you were taking relatively small doses. Am I right that you kept dosing during this remission time? If you want to say more about what you have done, maybe it'll help.

I suppose "satisfactory" is the key word in what you wrote. Certainly there have been possible explanations offered, particularly with regard to REM sleep (Exploring the Connection Between Sleep and Cluster Headache: A Narrative Review - PMC). According to one study (attached here), 2am is the most common time for attacks, but midnight, 1, and 3 are right up there. (Rather than a specific time, it's probably more accurate to say ~90 minutes after falling asleep.) (At least as far as I can tell, the attached study actually tells us almost nothing, since of course people get multiple attacks and they all are counted here.) However, as many as 25 percent of people with CH don't get nighttime attacks, and the number of reported attacks (in the study) at 2pm and 3pm (outside the time range of your theory) isn't all that much lower than the number at midnight or 1am. Well, but why would it want people to be awake and experiencing excruciating pain, or use excruciating pain to wake them? And why, if maybe we all, or most of us, have a biphasic instinct wired into our brains, are so few people afflicted with CH (or just generally, why do so few people wake up, with or without pain, at those early-morning hours, or ~90 minutes after falling asleep)? And why does a daytime nap so often bring on an attack? These questions are not to dismiss your idea, which I think could be part of the puzzle, but to say that there are surely more complex things going on and to agree with you that it would be nice if there were "a neurologist specialising in both sleep and cluster headaches out there who latches on to this." Of course, there are whole cultures that have a biphasic sleep pattern, though not exactly the kind you have been referring to. A siesta in the afternoon along with some nighttime sleep (usually less than 8 hours) is pretty common in many Latin American and European countries. I guess someone could look at CH incidence among those populations. Rozen - Cluster_Headache_in_USA-2.pdf

I really just need to vent tonight Like a cruel joke i relapsed after 10 totally symptom free days. All the way from k0 to k7 in a matter of minutes mid interview. The 5 day rule failed me. Maybe my dose wasn't as dialed in as I thought maybe I need to dose sooner either way i relapsed into another cluster. I'm really sad. I was doing so well, so full of hope. Today was a series of insane issues on so many fronts that I can't even list them all. It was a miserable day. I think the cruelty of this disorder isn't in the intensity of how incomprehensibly painful it can get but just how broad the contrast of it all is.... Without any warning mid sentence it was like the devil himself was punching me in the face to collect my lunch money. . I guess I just needed to bitch and moan. Vent. Scream into the void. I just need a damn job... This last interviewer today told me "you're not 16 anymore, this part time job isn't going to support your family. I have half a mind to tell them not to hire you because I feel that this wouldn't be in your best interest to let you have the position. I would recommend you apply for the distribution centers" and honestly it pissed me off .how is that NOT discrimination? What does my age have to do with anything ? Why can an interviewer tell me what I should and should not be allowed to take pay wise or Take the only opportunity for gainful employment i've had in months and tell me i'm better off essentially unemployed and still searching while they possibly hire someone younger with less financial needs or tell me that I SHOULD be able to get better pay so I shouldn't be allowed to have lesser pay... At this point i'm getting desperate and it feels like the only way i'm going to stay a float or get ahead is doing something sketchy like mowing lawns off the books or something stupid and I really don't need the headache. At this point i've stopped openly throwing a fit. It doesn't do me any good. If anything I just end up hurting myself and damaging things. Tonight I tried distracting myself working on my computer and possibly caused even more damage in the process which is really saddening because I was really happy with how it was Today I locked myself in a dark room and just cried because I don't see any end in sight. Not to the pain, not to my balance and hearing issues, and not to my lack of employment. I feel worthless, useless, and broken beyond repair. I've tried playing good baptist but at this point i'm even questioning my already waivering faith. I'm sure SOMETHING good will come but at what cost and when? The house we're in is literally falling apart, we can't keep up with the bills, can barely keep food in the fridge. It's all a mess... And now I have to be reminded that Equal Opportunity is a true crock of shit and I feel foolish for even trying anymore.

I see Dr Marius Birlea at UC Health at Anschutz. I have been seeing him for 10 years, very good listener.

Hello, Megan. I hope this works out for you! The only existing graphical things I can think of are the things you can find with a straightforward Google image search. There are several large surveys of people with CH, one done around 2011 by Todd Rozen and others, and another from fiveish (??) years ago by Larry Schor and others. I think you'll be able to find these by googling. They have some graphics, but I'm thinking might be a lot of information in there that could be converted to the kinds of graphic formats you mention. ClusterBusters has led a recent large-scale study that I don't think has been published yet. I'm not sure how much that study is focused on the use of psychedelics to treat CH; the Rozen and Schor ones were most about demographics and how people experience CH. I'm sure you're also aware that there are several books at Amazon about understanding and treating CH. I don't know how much they use graphics (I feel pretty sure that they will have the usual ones -- a brain map showing the hypothalamus; a chart of differences between CH and migraine; some kind of symptom list), or how much you might find there that you could treat graphically. Finally, there is some amazing artwork illustrating the experience of having a CH attack or being a person with CH. I have seen that in various places, but can't say where you might find it (maybe it will also come up from a Google image search).

Hi All, Hope you're all doing well! I'm looking to compile as many visual aids, charts, infographics, instructions with images, or any other graphics related to cluster headaches. I'm a senior art director who's been working in medical advertising for over 10 years now and I'd like to start transitioning into a more medical illustration role. Advertising has been wearing me down for quite some time now and I'd like to shift more towards academia and advocacy. So I want to start by redesigning existing material and getting feedback for a subject that I'm all too familiar with. I'll be doing some gathering on my own but any links you can share would be much appreciated! -Megan

It's the 1am-ish part that niggles at me. As far as I'm aware ( please correct me if i'm wrong) there has been no satisfactory explanation for the 1am phenomenon which, in my opinion, is probably one of the most common symptoms of all CH sufferers. My wife is often still awake at that sort of time and is astounded when I'm in a deep, snoring sleep and go from complete stillness to suddenly sitting up at 12:58am clutching my head. This biphasic theory suggests there is a part of our circadian rhythm that wants us awake circa 1am. Surely there's a connection to be made; I hope there is a neurologist specialising in both sleep and cluster headaches out there who latches on to this. Ideally - and this is obviously a very unlikely scenario - we need to find a CH sufferer who is desperate enough and flexible enough to switch to a bi-phasic sleep pattern for a minimum of 2 years to see if it helps. Any takers?

...i find it def sleep related...but kinda opposite here....which tells me same ballpark! ungoverned would sleep 16-20 hrs straight....always a fight not to exceed 10-12 (especially escaping pain) now. CH was a literal nightmare screwing endlessly with sleep. wonky hypothalamus fer sure.... ...thank you...i second "Fascinating"!

Fascinating

Came across an interesting fact that I've never seen mentioned in relation to cluster headaches - our apparent natural "biphasic" sleep pattern which was common up until the industrial revolution. It varied across populations but in this particular article is referred to as: "between 9 and 10pm, slept for 3 to 3 ½ hours during their “first sleep,” awakened after midnight for an hour or so, during which individuals did practically anything and everything imaginable before taking a “second sleep,” roughly until dawn." https://www.news-medical.net/news/20170517/History-of-sleep-what-was-normal.aspx This just so happens to coincide with the 1am wake cycle most CH suffers experience. When at the peak of my worst cycles I also commonly get 9-10pm and 6-7am attacks, which slot in nicely to the start and end of the bi-phasic sleep period. It appears through a study in the 1990s that this may be the most natural sleep/wake cycle for our brains (see https://en.wikipedia.org/wiki/Thomas_Wehr) I find it hard to believe that this is just a coincidence. Has anyone else come across this aspect of sleep behaviour in relation to CH? It may be a piece of the puzzle as it is very much governed by melatonin from what I've read so far.

...if you are subject to drug testing it is wise to be EXTREMELY careful with CBD in any form. it is NOT FDA regulated and packaging labelling is notoriously incorrect in this area. ...not to say ineffective...i know not....just go in eyes wide open. even strictly regulated N/A beer has 0.5% alcohol in it...i would be surprised if many/most CBD products don't contain some amount of THC...