Leaderboard

"Hey everyone, I wanted to share my recent experience in case it helps anyone else, especially the ladies here. I’m 37, and I’ve been a chronic episodic sufferer for 22 years. My cycles usually hit once a year (sometimes every 1.5 years) in the spring or fall and last about a month to six weeks. Up until now, I never really saw a connection between my clusters and my hormones. That changed on February 20th. My cycle started right as I began taking phytoestrogens to manage low estrogen levels. It was absolute hell. My daily attack count at least doubled, and the intensity jumped straight to an 8–10 on every single hit. I started reacting to a bunch of new external triggers, including food, which I never had issues with before. At the peak, I was hitting 5–7 attacks a day (my usual is max 3). On March 27th, I honestly thought I was dying—3 back-to-back attacks, 30 mins each, 10/10 pain, plus severe vomiting. I immediately went cold turkey on the phytoestrogens and added 9mg of Melatonin to my routine. It was a total game-changer. Within 48 hours, I dropped to one attack a day, and the intensity leveled out at a 5–6. Then it went down to a 3–4, and as of today, April 2nd, I’m finally PF (pain-free) and heading into remission. It’s honestly frustrating how little research there is on the hormonal link to clusters. We really need more focus on this, specifically for women. Stay strong, everyone!"

This last season was harsh and violent. Things changed pretty dramatically worse than they already were. I didnt think they could get worse but this is atleast the third season I've said that. This time I changed things juuuust a bit. Instead of drinking water I started exclusively drinking body armor hydration drinks strawberry in particular. I also started getting melatonin in my system. I slept when ever I could. I exercised as much as I could. I noticed I kept gasping for air before and during the attacks so I stsrted practicing deep breathing through out the day. Within 3 days it started to fade and within 5 days it was GONE. Im getting very very light shadows this week from the persistent overcast but its a whole nothing burger. The body armor drinks are full of : magnesium B12 Potassium Vitamins A C E NIACIN B6 and zinc I think flooding mysystem with those was what made the change. I have a hard time getting myself to drink water during cycle and the coconut water in these drinks seemed to not only get me hydrated but KEPT me hydrated. Something in this has probably already been mentioned multiple times already but I wanted to share incase it hasn't. I also recognized that my attacks really start up around noon and again with much more intensity between 5pm-3am. This gave me more time to prepare knowing those times in the day were going to be "no go times"

I have come across the same issues in the past. I am not sure what country you are in, Here in the US I keep on calling and climbing the latter going from one level a=of management to the next until I find someone who understands that money is money and it does not matter who is paying as long as they are getting paid for the services they are trying to provide. I also pay out of pocket and it is actually cheaper for me. I pay a monthly fee for the home delivery service and I pay that regardless if I get oxygen. That covers 4 M60 tanks. I can order more and pay a different rate depending on the size tank I order above the 4 M60's. Smaller Mom and Pop type shops I find get the same tanks from the larger distributers and usually only get one order a week so they don't like Clusterheads cleaning them out every week so go direct to the larger supply house and deal with them direct. Be extra nice to the delivery person bringing the tanks and you will be able to get extra tanks from them on occasion if they have them on the truck. Stock up on as many extra tanks as you can store for when something goes sideways. Don't accept the "we don't serve cluster headache people" What do they care what it is used for, they are selling it and we are paying for it. The Market down the street does not care how much milk you buy why would the oxygen people care how much O2 your getting as long as you pay the price they are asking. This makes me nuts how they think they can just say no because we use more oxygen at times than others. Your other option would be to get welding oxygen and use that, but do not tell that supplier you will be breathing it. We can help you get set up with that equipment if you do decide to give it a try.

...that would be a double YUP!

It's great that you got that relief, Mike. Do not let it lull you into letting up on getting oxygen! For a lot of people, the effectiveness of energy beverages tends to decline with multiple uses. (Incidentally, the smaller "energy shots," such as 5-Hour Energy, are easier to get down fast and have as much of the CH-fighting ingredients as the larger drinks (more of those ingredients, actually). Also, at least one person here has had success with V-8 energy drinks, which might be a touch healthier.) Many people would be surprised that your triptan pill helps at all (it is reasoned that they take too long to get into the bloodstream). If your attacks are predictable, some people will take the pill before the attack hits. There are a lot of other things I think you might benefit from knowing. The D3 regimen, for exampIe, and busting. I think you might benefit from reading this: Basic non-busting information - ClusterBuster Files - ClusterBusters

I found more hope. This one might be hit and miss for others LAIRD brand coffee, particularly their "performance" line. It has lions mane, chaga, and other fungi. Caffeine is onenof those tricky things for ch heads. I respond to it pretty well. If it doesnt work them the worst thing I get is increased restlessness and let's be honest I wasn't gonna sit still anyways. To my surprise after a few sips the clusters backed off and I fell asleep with the thermos on the recliner. I finished the thermos after I woke up and was pain free all night. This morning the shadows started slowly rolling in as the barometric pressure started to climb up to 30. This particular brand seems to be more effective than the other coffee products we've tried this year. It might be worth noting that I get clusters and migraines usually ontop of eachother or back and forth between the two so this could explain why I feel relief while other ch patients are freaking out about how thats a cardinal sin. Ita also worth nothing ive had repetitive concussions, heat illnesses, and dehydration events so my eggs have been scrambled beyond just ch. Hopefully this helps. This is the second time I've noticed immediate and persistent relief from Laird brand coffee out of colorado. The one I use is "performance" and its red on blue labeling. About $15lb/bag. They also have organic powdered creamer that is pretty much powdered coconut. I think the mct oil in that can help some too. This is all just speculation of course. Correlation is not causation but thisbis what im experiencing this week. We were going to add in "p" but it was unnecessary each time with this brand for some reason. I also drink it black no sweetener

I want to thank you folks for not alienating me for this post. I can't express just how important that is for the uninitiated / less involved to actually talk about CH and our experiences. I also want to note that just because I have CH and am a recovering addict doesn't mean I allow myself or others to treat me as anything "less than" I was recently accepted onto the community CERT team(community emergency response), have the approval of the associated Search and Rescue team. I'm also working on another opportunity working with the state in a volunteer capacity involved in natural disaster /defense roles There is hope for a man/woman who will do anything necessary to achieve their goals. Just because I have CH doesn't mean I cant be a valuable asset to my community in some regard. On the contrary, I believe it means I can be extraordinary in these roles. The substance abuse was from a lack of purpose and meaning in life. I think i finally got my way into the purpose that those drugs slowly robbed me of. Ch is the stone that sharpens me. Theres this belief that language is power. How we use words is what gives things power. It changes how we see things. I've learned to stop giving ch power over me and to weaponize it to make myself stronger. If I can survive something that I know feels worse than getting shot (personal experience) then I can work through damn near anything. The first step is convincing myself I can. Never surrender.

Hi everyone, I'm a long time lurker here. I'm 55 and have been suffering from Cluster Headaches for almost 20 years. I typically enter a new cycle every two years or so and they tend to last for 6 to 10 weeks. I am currently in my third week of a new cycle. I usually use Sumatriptan (100 MGs) to deal with category 10 attacks and just got my new prescription yesterday but am a little hesitant to use it because during my last cycle I think I may have overused it and made my cycle even worse and longer. I have never used oxygen but I am trying to get that now. In the meantime, like the rest of you, I would be willing to try anything to end an attack. In recent years, I have seen that some people have had success with Red Bull but I never tried it. I have never even had one before as energy drinks just aren't my thing, but last night I bought a few of the small/standard size cans at a gas station thinking I had nothing to lose. When I got up today, I had a shadow pain in my left sinus but it wasn't that bad. I figured it would pass within 10 minutes. I was wrong. In the span of about five minutes it escalated to a full-on attack. Pain level 10. I grabbed the Sumatriptan I just got and was going to take one but something in the back of my mind said - Try the Red Bull first. I opened a can and drank it all down in three gulps. About ten minutes later - ZERO PAIN. I am absolutely amazed. It was as effective as Sumatriptan and worked more than twice as fast. I wish I had tried this years ago. I realize that not everyone has the same success with each method, but I wanted to post this to let others know in case they want to try Red Bull as an alternative. I am positively stunned at how effective it was for me. Wishing you all a pain-free future. All the best. - Mike

WEBINAR Pain, Not Personality: Why Behavioral Medicine Matters in Cluster Headache Care Wednesday, April 8 from 7:00-8:00pm Eastern Time In collaboration with Clusterbusters, the Jefferson Headache Center invites you to join an upcoming educational webinar for patients living with cluster headache and those who support them. The session will be presented by Susan McCrea, Licensed Psychologist, who will discuss psychological and coping strategies that may help patients manage the challenges of living with cluster headache. Bob Wold and Joseph McKay from Clusterbusters will share their perspective as patient advocates and share insights from the patient community. Physicians Dr. Young, Dr. Marmura, and Dr. Nahas from the Jefferson Headache Center will also join the discussion. Date: Wednesday, April 8 Time: 7:00–8:00 PM (Eastern Time) How to Register: Click the registration link below: https://events.teams.microsoft.com/event/24bb6ffd-b82d-42cc-b970-b1b57c59a880@55a89906-c710-436b-bc44-4c590cb67c4a/registration After registering, you will receive an email with instructions on how to join the webinar. If the link does not open, copy and paste the link into your web browser (such as Chrome, Safari, or Edge).

Not sure if anyone is checking this thread, but wanted to say Thank You! to everyone who participated and organized the webinar last week. I was diagnosed with clusters in 2009 and had them for about 15 year before that. Failed multiple treatments, some with adverse effects. I didn't pursue any more treatments or engage with communities when I discovered hard cardio worked as an abortive for me. I just closed off and focused on that for years, but about 6 months ago I decided to see if anything changed. I live outside Philly and I'm fortunate to be in the Jefferson system. I've had my first course of Emgality, anxiously waiting for my second. Dr. Mccrea, your description of the pain cycle, or the thought process resonated strongly with my experience. Joe, your story is both heart breaking and inspiring, thanks for sharing it. And, Bob, thanks for creating this space for us. Thank you again,

...i can't speak to the connection of these phantom odors to hits or cycle except to say that for years i experienced similar. mine were burnt toast, manure, electrical fire, and a few others. my cycles were very close apart and it never seemed connected to cycle position or hit prodrome. as i recall these were random and "interesting". is also a symptom of other scary neurological maladies like MS...which i have been tested for multiple times (negative). that its a "tell" is actually a good thing for you... ...rapid change in barometric pressure...like hi to lo pressure weather wave was a guaranteed trigger for me and many others. re "noon", guessing your particular circadian rhythm... ...that there is WAY typical of CH...it would surprise if only occurring during these... .....boy howdy, YES! and mega congrats on off loading the monkey...from contacts and research it seems clusterheads are more prone to addictive behavior than "regular" citizens... best jon

....one bit to consider, if even logistically possible for you, is to p/u and return tanks yourself. the O2 shop i used thought it amusing but appreciated. one phone call and i would have all my tanks in a rack waiting for me on arrival...quick switch out and on my way. this would also allow me to pop my head in the back room and chat/thank the techs. they usually don't see their clients, and i have always believed a face to the name is a game changer...once was handed an m60 regulator, no charge, with "use as long as you need" ...i still have it........

This is a great start! now just like CHfather said, work on getting bigger tanks. M60 and M tanks are good home use tanks and E is the travel size for me. Take care of your delivery driver when you can, bottle of water/cup of coffee. Maybe a snack from time to time? Whatever it takes to have them pulling for you. I have had drivers call me before they leave the building saying they did not have my tank size and adjusted from one M60 tank to 3 e size tanks. Pay your bill on time every time and you should be good to go. Cluster mask will also make a big difference in your abort experience. After the O2 is all in place start stocking up on a few other abort techniques. Mix and match them and your on your way to a happy cluster life!

Thank you both! After talking with the manager and requesting a call the branch manager of AdaptHealth, I received a call yesterday from the manager of the local medical supply company I initially worked with to get my O2 tanks. She said she received the emails from the corporate managers giving me a hard time about insurance not covering it, yada, yada and said she does not care that I pay out of pocket with my HSA! She apologized for the corporate folks and said, “you put my # in your phone and deal with me only!” I was so frigging relieved and joyous in that moment! I now have two E tanks that I can keep swapping out and will eventually get a travel tank and purchase the better mask from clusterheadaches.com Thanks again!

I use the 5hr smaller size to help hold the cluster off until I can get to my oxygen tanks. it will sometimes abort a very mild one if I drink it soon enough in the onset of the cluster. Oxygen is the cleanest and best option for aborting a cluster as long as you get the o2 kit and a regulator that will allow you to maximize your intake.

My 34-Year Battle: How Amlodipine and Lifestyle Finally Ended My Clusters Background: I’ve suffered from cluster headaches since I was 22 years old. I am now 56. The Pattern: My cycles were episodic, hitting almost exactly every five years. The Breakthrough: In 2020–2021, as a new cycle was starting, my doctor prescribed 10mg of Amlodipine (a calcium channel blocker) for both high blood pressure and headache prevention. The Result: Remarkably, it worked almost immediately. It shut down the attack and has kept me 100% pain-free for over four years. Dual Success: I also managed to lose weight (maintaining 160–165 lbs), which brought my blood pressure to a perfect 110/70. The Strategy: Even with perfect blood pressure, I chose to stay on the 10mg dose through 2026 to ensure I bypassed my "five-year" attack window safely. My Message: If you struggle with clusters and also have blood pressure issues, talk to your doctor about Amlodipine. It isn’t the most common choice (like Verapamil), but for me, it was the "off switch" I needed after decades of suffering.

I really hope this helps a lot of you that suffer from the suicide headaches I sure am glad it’s been working so far so good another year and I will know for sure that I am trust free of this torment which caused me to lose my first wife

@NeitherHere I explicitly remember smelling an electrical fire smell or similar to it the whole 8 weeks of my last cycle. It was odd but unmistakable. I haven't really looked too far into it other than it's related to the sinuses swelling which can affect our smell. Congrats on 2 years clean too. I will see what I dig up on the elevated sensory levels.

I heard a similar story from a CHer in Canada last week whom once a year picks up everyone’s fav coffee, tea or whatever (he has it written down) along with some deluxe pastries and donuts and puts on a morning tea for his oxygen hero’s at the store. They appreciate it and I know he appreciates their very efficient assistance. Love it.

Hi to everyone here im new to this site but i have suffered from chronic cluster headaches for the past 6 years.There has not been 1 day in the last 6 years where i have had a single day without having any where between 3 to 8 severe attacks per day.Ive had everything that medical science has had to offer,sumatriptan ,verapamill,botox injections imgality,nerve blockers,you name it and nothing work as most of those treatments were only proven to help people that had episonic clusters but not affective for chronic cluster headaches. It got to a point where i was that depressed that thinking about suicide was my only option to end my suffering and even went as far as paying $14000 dollars to buy a funeral plan before ending my life.Then after watching several videos of people claiming that taking magic mushrooms or lsd gave far better results in very small micro dosages of 0.4 grams every 3 to 4 days had far better results than any medications with no nasty side affects what so ever i started taking shrooms and to my suprise i was getting alot less attacks per day and not as severe.Then i started looking into something that no one really ever talks about and that is ECS short for Endocannabinoid system wich is something that we are all born with our bodies naturally produce endocannabinods however as we are all different so some of us dont produce enough of this compound in our body and funnilly enough i found that people that suffer from chronic migraine and cluster headaches were the ones that were lacking this enzyme.The reason we have cluster attacks as far as i know is due to vessels in our brain become inflammed and cause the vessels in our head to swell up and put pressure on the trigeminal nerve just above our ear and intern sends severe pain signals to the nerves behind your eye your nose your cheek bone and your jaw line and in my case even my neck.So i thought well if this theory is correct then how can i increase endcannabanoids in my system that my body could not do naturally.And thats where my life changed completely.I got onto a company who was liscenced to sell very pure high grade CBD oil which had no thc in it but had the cannabanoids CBD,CBG and CBN also particularly CBG which has a very powerfull inflammitory property bound to it but also helps greatly with dealing with chronic pain, so i thought well if its such a powerfull inflammitory then if it reduces the swelling in blood vessels in my head then it will not put pressure on the trigeminal nerve.Low and behold from the first day i took a very small dosage of 0.2mlg under my tongue twice a day it was instant.For the first time in 6 years i went a full day without a cluster attack it was almost to good to be true ,but 4 weeks have past since ive been taking this particular CBD oil and my clusters have dissapeared completely.Doctors say they just dont have a cure or know why people get cluster headaches well all i can say is they need to start looking into the endo cannabanoid .I urge any one here suffering from this debilitating illness to try it i mean what have you got to loose buy giving it a try .After having chronic clusters for 6 years without have not 1 day without at least 3 to 8 attacks per day to just stop completely from taking this CBD oil cannot be just a coincidence.I feel your pain and only want to give you another possible option that is drug free with absolutely no side affects that comes with traditional medication,and if you would like to talk to me personally about how to go about it im happy to leave a number if you would like to talk to me personally.

@Mordecai Give this place a try https://adapthealth.com/locations/ see if you can get to a guy named Ed Pucket. He is located in Northern Maryland and may be able to get you what you need. Best of luck to ya!

I see what you are saying now. I went and made sure to read the label on my pills, and thankfully the 1 capsule is the full 400mg. Since the regimen has been effective for me so far, I'll keep doing what I'm doing now. I'll consider changes in the future if I see any worsening cycles. I'm hoping to find a PCP who's more receptive to this regimen by then. Anyways, appreciate all the information. And good luck to you, brother. Good luck to us all.

Hi Iris Pleased you have found this link with Hormones. I cannot tolerate Oestrogen and my headaches are directly linked to fluctuating levels of hormones. I have been doing quite a lot of research on this recently particularly in the link between hormones and calcium channels (given Verapamil helps a number of people) and Vitamin D. My history: worse during perimenopause cycle lined up with menstruation and hormone fluctuations, every month, starting mid luteal phase and lasting two weeks from age 15 (now 53 and post meno) improvement during pregnancy improvement with progesterone or Depo‑Provera flares with oestrogen spikes What I have found so far: oestrogen increases intracellular calcium progesterone reduces neuronal excitability vitamin D stabilizes calcium regulation the hypothalamus is hormone sensitive TACs are disorders of trigeminal autonomic circuits these circuits are heavily influenced by calcium signalling When hormones fluctuate (perimenopause, cycles, postpartum), TACs often flare. When hormones stabilize (pregnancy, Depo‑Provera, post‑menopause with support), TACs often calm. Even though men don’t have the same oestrogen–progesterone cycles as women, the same biological theory still applies to males with hemicrania continua, cluster headache, or paroxysmal hemicrania. The inputs are different, but the mechanisms are the same. All trigeminal autonomic cephalalgias (TACs), including hemicrania continua, paroxysmal hemicrania and cluster headache involve: trigeminal hyperexcitability hypothalamic dysregulation Men don’t have progesterone cycles, but they do have hormones that affect neuronal excitability and calcium signalling. Testosterone has several effects that parallel progesterone's calming influence: supports GABAergic (calming) pathways reduces inflammation stabilizes calcium‑channel activity Low testosterone, which is extremely common after age 40, can make pain circuits more reactive. This is why some men with cluster headache or hemicrania continua improve dramatically with testosterone replacement. Men also produce oestrogen (via aromatization of testosterone). It’s lower than in women, but still biologically active. Oestradiol in men: modulates calcium channels influences hypothalamic function affects trigeminal sensitivity If testosterone is low, oestradiol can become relatively high, which may increase neuronal excitability. Vitamin D is a major regulator of: calcium movement neuronal firing inflammation hormone synthesis (including testosterone) Low vitamin D in men is strongly linked to: lower testosterone higher inflammation more reactive pain pathways worse TAC symptoms I still have a lot of research to do to confirm this theory, and I am finding it very interesting. My specialist (menopause) is also supporting trials I am doing on myself with various combinations of hormone replacement to find the right balance. She also has trialled me on H1 blockers and whilst these did not help with headaches, my allergy symptoms improved, always a bonus. I am about to start a trial of H2 blockers alongside 200mg daily of progesterone. Hope you remain pain free!

I just made a post today that I've been 33 days attack-free after adding Zyrtec (one time a day) and 1-2 drops of a 2:1 CBD/THC tincture (every few hours). I then started searching the site to see if anyone else had tried this, and came across your posts. I also saw that you posted about the possibility that they might come back if I take the tincture everyday. I will have to look into that. Thanks!

Congrats on this success - pretty impressive.

O2 is the life saver,

Hi,Andrew. I'm from Japan and I’ve also been suffering from chronic cluster headaches for over 10 years. I’ve tried all the medications that were mentioned, and I’ve even undergone nerve blocks and trigeminal nerve surgery. Although I’ve been managing the pain with opioids, they’ve started to lose their effectiveness, and that’s when I came across this. It seems that Humacology’s CBD oil is also available in Japan, and I wanted to check if the following product is the right one. Formula No.3 Broad Spectrum Oil 34% CBD content: 7,500 mg CBN content: 1,800 mg CBC content: 600 mg CBG content: 100 mg Net volume: 30 ml I would really like to give it a try. I’d really appreciate a reply. Miho

Hi everyone. Dr. Haghdoosts presentation from Sunday evening is below. If you had any questions or insights you'd like to share that may assist in their study design, you'd be welcome to place them as a reply below and I could email them once collated. Thankyou.

@Craigo thanks to your recent YouTube video, I think my triggers right now are actually coming from my tooth. It seems the seal of my crown has failed, and sometimes there is pain there (same side as my cluster attack) and could be the trigger for this cluster period. Getting it checked out on Wednesday. Thanks for all the advice guys

https://clusterbusters.org/study/ut-houston-batchs-vitamin-d-regimen/?fbclid=IwAR26zK4jCbwyL2LIkcnVOkkj7__c_raUHVbrq08POiltlRiz148Kfsve5wU

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.