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"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!"

...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

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

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.

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.

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!

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.

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.

I’ve just started taking this 2 days ago. I know it’s anecdotal at this point but I’ve been in a cycle for nearly 10 months now. Nothing is helping d3 , mushrooms everything. my doctor here in Canada gave me a 30 day trial and so far it’s really helping. I’ll update soon

Yes, this is also a pet theory of mine. My husband has ECH and had a litany of trauma growing up from alcoholism and drug addiction in his parents, physical abuse, homelessness after leaving his home early, death of friends and close family as a young man. I just finished The Mindbody Prescription book, which is primarily about repressed rage and grief, and how it will present as pain in the body as a way of distracting the mind from its subconscious feelings. But what's more, it is absolutely possible for the limbic system to form neural pathways to the hypothalamus and cause autonomic dysregulation.

@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

Thought I'd watched them all but somehow I missed this clusterbusters YouTube video.....until just a few minutes ago!! I've had the pleasure of meeting and getting to know almost everyone featured several times over the past 13 years! Be forewarned, grab a hanky or some tissues before watching as this video may result in eye leakage...

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.

My mom can't learn anything cuz she already knows it all.