Search the Community

What if someone really found the cause of and a cure for cluster headaches? What would happen? How would they get the word out? Might they be suppressed? So often the answer to these questions just comes down to the money involved in treating, rather than CURING many debilitating "diseases". I have no idea how much money has gone into CH research, but I do know the COST of treatment. About 18 years ago, I began suffering from intense headaches around my left eye, which were first diagnosed as sinus headaches and treated with typical antibiotics, to no avail. Then it was diagnosed as something like "sphenopalatine neuralgia". The first treatment they gave me for that was an epilepsy drug called Neurontin. But they didn't tell me that this drug might permanently wipe out much of my long term memory and also most of my short term memory. After 7 days on this drug I began having great difficulty putting a sentence together. I would start to speak what I was thinking and after several words, the next word just would not come into my mind so I could speak it. It was almost as if I had had a stroke, and had lost my memory of many of the words I knew all of my life. It was almost a full year before I was able to "re-learn" many of the words I had been using my whole life, to a point that I could again carry on an intelligent conversation. Much of my long term memory is now gone forever. I used to know all of the words to hundreds of songs that I grew up with in the 60's, and now no matter how many times I hear them again, I can't sing along with them without having the lyrics displayed on YouTube. This is part of the "cost" of treatment that I referred to earlier. I immediately trashed the rest of the very expensive bottle of about 300 pills they had put me on.. So now, without further boring my audience, I will get to the reason why I chose the name DragonKiller. I have gone through so many large (H) bottles of oxygen that I can't count them. I own my own O2 bottles for welding, and I also went through 2 Oxygen regulators for those bottles over the years. I can now offer a large Oxygen bottle for sale along with the regulator to anybody in need of it. I think that to purchase the bottle today from a welding gas supply company would cost around $400. By the way, these are the very same ALL GREEN large Oxygen bottles that I have seen being delivered to the "basement" of hospitals, by the very same company that I had refill my bottle whenever it ran empty. They hook them up to manifolds in the basement of the hospital, where they then pipe Oxygen to all the places in the hospital where they might need it. So if anybody is interested, it is for sale very reasonably. It costs around $30 to fill it, and it is currently full, but I no longer need it. For over 16 years I have had what started as episodic headaches, and within 4 years became chronic headaches. For the last ten years I had as many as 4 separate headaches per night, each lasting for 45 minutes to one hour. I survived each one by breathing nothing but pure oxygen for the duration of the headache. As soon as I felt a CH coming on, before the pain got really bad, I would go to my "treatment area" and "hook up" to my O2. This did not STOP the headache, but it kept the pain to a level no greater than it was at the time I started the oxygen. As of today, I have not had a single headache for 1 year, 8 months and about 20 days. Through a very interesting series of events, my headaches were completely cured in one night. Something strange happened that one night, and when I woke up that next morning I absolutely KNEW that I had finally Killed the Dragon. My headaches were CURED, and I now knew that my long time theory about the cause was correct, at least for me. So what now? How would I be able to get this theory proven by "medically accepted" testing and trials. I am not a doctor, so what do I do? When I told my Neurologist who had been treating me for the last 4 years what had happened, and what I thought might be the cause, he just said; "Oh that's impossible." "We know exactly what causes them. It is some kind of irritation of the nerve that comes out of the back of the head and runs to the face, and there are all kinds of treatments for it, but there is no cure." That was nearly one and a half years ago, and he has now retired, taking the knowledge of a possible cure with him into his retirement, without ever having offered any of his other CH patients the opportunity to try what I had given him. So what to do? Can anybody out there help me? What happens if there IS a cure? All the research money goes away. Many thousands of people might be able to lead normal lives again, but many doctors and researchers and drug companies, and maybe even this website would no longer be making money off of this horrible malady called CLUSTER HEADACHE, and also appropriately known as THE BEAST. I called it "The Dragon". And I finally drove the spear through its heart and killed it.

Hey everyone -- I am just getting into a bad cycle, and unfortunately, have work travel to New Orleans from this Friday to next Thursday (Aug 9 - 16). Oxygen is my lifesaver, and I'm a little panicked trying to find an oxygen supply while I'm there. I'm hoping there is someone in the New Orleans area who could spare one M and one E tank for a week? Happy to pay, and I have my own regulator/masks/etc. I really just need an M tank for my hotel room and an E tank for on the go (so I have some nearby meetings if I start to get shadows). I don't want to put anyone out of oxygen that they need, but if someone has a spare I'd be eternally grateful. Thanks for reading, I'm really sort of desperate at this point.

I would like to a acknowledge everyone who is suffering in pain, I pray that my Son or anyone else here will not go through the hell I went through just to write about it. I'll tell you it's going to be about a pity party like no other. However, at the end I found my cure and I hope you find yours. I was 22 when I was hit with a headache that didn't want to leave. Thank God, I had great insurance. I saw at least 3 ENT's - Ear, Nose and Throat Specialists, a Couple of Neurosurgeons, a couple of Chiropractors, an acupuncturist, some gentleman who put a hot iron on my head... believe me when I had displaced pain it helped at times, long story short, I was finally diagnosed with what is referred to as Cluster Headaches, for which I was told that there was no cure. By this time, I had knocked my self- out, used a towel with a hot iron on my forehead several times, using a towel not to burn the skin to much. These headaches have a Nic name, there called Suicide Headaches. I can believe why, one day I went to the beach to try to burn out my left eye with the Sun... I told you this was about a pity party. I can go on and on about this pain, but I wish not to bore you. I recently watched Kung Fu Hustle, I strongly recommended it. What I got out of it, is sometimes we're put in an extremely bad situations to learn life's lesson, my opinion of course. I danced with the Devil for close to 8 years. My redemption came with a young lady named Ani, she knew of my headaches and had me listen to a meditation tape. OK, please stay with me. When your in God awful pain you'll try anything. I listened to this tape and to put it simply, it opened another door, I knew, no one on the outside was going to help me, so I figured I'll cure myself.. Here forward, please keep an open mind, it worked for me and I'm just sharing my experience. I'm terrified for anyone who experienced this kind of pain and agony. So, I regress. My cure was heaven sent for sure. Although, I cursed a lot I kept the faith, sometimes it was less then a grain of rice, but it was there. How I cured my self with God's help. I started meditating every hour I could, and what I mean by meditation may differ from others definition on meditation. For me, I would spend almost every moment of everyday concentrating on my hand and fingers, after a while I could feel the blood flow being pushed into my hands and fingers. I actually got a security job so I definitely had time to do so. After a while, I realized I could control my blood flow to each of my fingers at will, this took some time, but believe me, well for me it was like winning the lottery 1000 fold. I woke up one morning with one of the worst migraines of my long line of episodes. I was done, I told God I was done. Then something phenomenal happened. I had my hand near my head and I felt what can only be explained or felt a small spark. I thought to myself, could this be it. I pushed the blood to my hand, held it over my forehead. On my way to work that morning I felt what I can only explain as a vein vibrating or a small popping sensation down the left side of my nose. The Beast had left the building. I'm 54 now, still Cluster free. Thank you GOD

I have been suffering from CH off and on for the past 7 years. I am currently in a phase where I get hit every single night between 7-9 pm, and again at some point during the night(typically around 3 am). They have gotten progressively worse, to the point where I’ll have a slight headache probably 85% of the day. I just started the D3 regimen today, but am looking for anything at this point. I’m becoming desperate, as I have felt my entire mood change throughout the day. I struggle to enjoy time with my kids and wife, because the only thing I think about is when my next CH will hit. Luckily I have been blessed with a wife that is sympathetic and understanding, but it is putting unnecessary stress on her everyday life as well. This is the first time I’ve come across this site, and am hopeful I can find some solutions in this online community. I am absolutely open to any and all suggestions, and if you have any particular questions for me, don’t hesitate to ask. Thanks

Hi my name is Brian and I am new here and have a quick question! I am 28 I have been having cluster headaches since my early 20s and as you all know the pain is unreal. My question though is about the nature of my cycles as I seem to have 2-4 cycles a year lasting only from a single day or two up to 10 days (longest it’s ever been). Is this abnormal as everything I read about cluster headaches suggests cycles are much longer than just a few days, I have all the normal symptoms of the headaches, the triggers associated with the headaches as well but my cycles don’t seem to fall at the exact same time each year maybe once a season or so. If anyone else could shed some light on whether very short cycles are common? also my average cycle is about 5-7 days

Hi guys! I've read through some of the posts but I'm having a hard time understanding where we should start. Some background.... my boyfriend gets really bad cluster headaches. Today he got three, one of them lasting 2+ hours. It seems to me he usually gets them during season changes. Regardless, I want to start getting him some treatment to see if anything works. Where do we start? Do I get him to ask his doctor to prescribe oxygen? Should he go straight to medicine? If so, which ones? I can't tell which medicines are the most effective and have the highest likelihood of helping him. Thank you for your support and help and let me know if you need any additional information.

Hi all. 33yo Male, chronic migraines 21 years, cluster headaches 5 years. i know I'm going to be repeating common questions because I've seen some already, but the forums are very long and there's so much info I can't possibly take it all in. Apologies. im on day 8 of a cluster, this marks the first time a cluster has exceeded a week for me. The non episodic period is typically been 1-2 years between clusters, and then during a cycle I'm at pain every 12hrs typically like clockwork. This cycle is new, there have been 24hr periods between in some cases, and as few as 4 hours between cases this cycle. Im a chronic transformative migraine sufferer with chronic daily headache. Wake up with a lvl2 or 3 headache that I carry around, 12-15 days a month those will transform into lvl7-8 migraines. I used to think the migraines were 10s on the pain scale until the CHs started. Those are flat 10s every time. They are definitely suicide headaches, I lock the guns up when a cycle starts - last night I was begging my wife from the shower at 2am to just bring me a gun and let me go. They're so bad. this cycle also marks the first time I've nearly ran out of medicine. New Rx coverage is terrible. I need 18treximet a month but can only have 9, for my regular migraines, now with this longer (relative) CH cycle I've exhausted those, I've also obtained a 6 pack of sumavel injectors (the stinging nectar of the gods) and exhausted those, and now I'm on an "out of pocket paid" 9pk of 100mg imitrex that I'm grinding up into a powder and dosing in combination with naproxen for fastest chemical delivery and to simulate treximet. I have 5 left, not sure what I'll do if this cycle extends past the next 3 days... ok, history complete, on to the ask: im reading a lot on the site about LSA, but not seeing as much about it on the forums. I'm not interested in halucinagens for their recreational properties, let's get that out of the way. Am usually a recreational marijuana user but not during migraines or CH cycles because it exacerbates my symptoms, but I've got seedy connections but unfortunately no connections for LSA/LSD etc. has there been any success among you CH veterans with breaking a cycle by micro-dosing using the "legally available to purchase but not consume" seeds and plants mentioned here on the site? Im willing to eat the raw end of a ******'s *** if it will stop or even slow a cycle. I do have an opiod Rx (quantity 30, typically lasts me 3-4 months, used as a prophylactic when a headache is about to turn into a migraine, and used sparingly) but I avoid altogether for CH because it likewise often makes matters worse. Im in dire need of any advice ya'll have learned on your journeys, because the end of my rope is fast approaching and I can't afford the $900 out of pocket on treximet or the $2,400 out of pocket on sumavel even once, and tolerating a migraine without medicine is bad enough, a CH for me unmedicated is unfathomable. much love, and appreciation, ahead of any replies, -D

So, I started to get migraine headaches around the age of 12 or 14. My mom took me to the family doctor, who prescribed Vicodin and referred me to a neurologist. I took the Vicodin and immediately fell in love with it. I started to overuse them, running out early, and making excuses as to why they were gone. As I got older, my headaches got worse. In high school I started to buy drugs, and was in full blown heroin addiction by the age of 22. Around this time I got a car for my birthday, and while driving I nodded off and crashed it. I told everyone that I had swerved the car in order to avoid a deer and overcompensated with the wheel. They believed me, but were slowly becoming suspicious of my behavior. Being short a car, I started borrowing my parents' to get to work and school. 8 months later I got into another accident. This time I suffered a severe head injury and was in an induced coma for a week. The doctors did a blood test and disclosed to my parents that I was high out of my mind on heroin. They kicked me out of the house. Next I lost my job. First I started stealing to avoid the dope sickness. I stole from my parents and my best friends. One by one I alienated everyone in my life and ended up homeless. While at the shelter I met a girl thru a friend, who let me stay with her at the university. There I lived with 4 other girls. Soon I got her addicted and her roommates kicked us out. We moved into a small apartment and there we lived in squalor for 2 years. By that time I was supporting my habit writing fake prescriptions, and unbeknownst to me, my girlfriend was sleeping with the drug dealers for bundles in return. I should have known, when visits to pick up the drugs extended late into the night. She was absolutely gorgeous. It was only a matter of time until she would be propositioned. They even had the nerve to ask me first. I made her promise never to do that, and after acting offended for a few hours, giving me the silent treatment, she told me I never had to worry about that. The truth is, I never had to worry while we had money. But never underestimate how far an addict will go to avoid dope-sickness. One day I went to fill a forged prescription and the pharmacist told me that she knew it was bogus. Because I was high, I totally forgot, and one week later, I went back. The same pharmacist was working and she called the cops. I was arrested and went to jail, where I was forced to go into withdrawal. They refused to dose me with methadone. At the time I was taking 120mg of methadone and up to 10 bags of heroin a day. I had also contracted MRSA that same week, which left a hole in my arm. MRSA is incredibly painful. Methadone withdrawal is even worse. Combined, it is a nightmare. To give some perspective, in Orange County Florida, a women died after being denied her dose of 40mgs. I was taking 3xs that amount, on top of my heroin use. My body had stopped producing its natural endorphins, so I had no defense against the pain. During the next two weeks I lost 14 pounds, and went through the worst ordeal of my life. Meanwhile, my girlfriend was without any money, and she finally gave in to the endless propositions. When I was eventually freed 2 weeks later, she confessed. I was heartbroken, I broke up with her and we never spoke again. I got on suboxone and the withdrawals subsided. Next I went into rehab. I wrote a letter begging a certain foundation for help and they offered me a scholarship worth $60,000. I was in rehab for 6 months. At month 5 I was weaned off of suboxone. Again I went into withdrawal. This time it caused me to have a sort of mental breakdown. I started having flashbacks of my time in jail, which left me traumatized. They diagnosed me schizo-affective after I was found wandering around a New Jersey town, babbling on about September 18th, which was in my mind an obsession for some reason. They told me that it went undiagnosed because I was self medicating. I was kicked out of rehab. Not so much kicked out, but I was told there was nothing more they could do for me. They drove me to a psychiatric facility where I stayed for 10 days. I was then flown home and sent to a facility in Charlotte, NC, where I was treated for PTSD and S.A.D. I went back on suboxone but now that I was free from heroin, the headaches returned with a vengeance. I was sooo tempted to use again, but I managed to stay strong. I kept an open mind and went to neurologist after neurologist trying to find relief. I tried all the medications. Maxalt definitely helped as a rescue medication, but I was still suffering. I tried botox, chiropractors, and even flew up to chicago's diamond headache clinic, where I ate nothing but bread and water for a week and slowly introduced new foods into my diet. The idea was to figure out if I had any aversion to certain foods. I discovered that aged foods would trigger my migraines. Cheese, red-wine, left-overs from thanksgiving all contributed to my headaches, so I stopped eating those. My headache frequency slowed. However, I could not seem to rid myself completely of this curse. So here I am, reading about psilocybin, LSD, and other triptamine drugs. I would give anything to be rid of headaches, and I am very interested in the spiritual and mystical aspects of psychedelic drugs. But how do I go about finding them? How do I treat myself with these drugs? I am open to suggestions and would love to talk to anyone who has first hand experience using psychedelic drugs for migraine / cluster headache prevention. I often wonder how my life would have turned out if I never had headaches.

Hi Everyone, I've suffered from all types of headaches for a long time. I'm currently being treated for migraines. However, my headaches often present significant cluster symptoms. My doctors and I are having a hard time diagnosing the type of headaches I'm having and subsequently, how to treat them. I'm already on depakote for my bi-polar II. It doesn't have an effect. I've taken lithium and topiramate for my mental health and those also did not have an effect. I take treximet (sumatriptan and naproxen) as an abortive, and it usually works, but the side effects are miserable. ANY help, feedback, support, questions, or even if you have similar symptoms, would help sooooo much. Also, I don't know if it matters, but I'm a female and 29. These headaches started when I was 19 and have gotten worst since I've aged. I was diagnosed with MDD at 23, and then BPII at 28, but my medications don't seem to affect my headaches. Cluster headache symptoms -Headaches are seasonal and I will typically get 3-5 a week for a 1-2 month period every fall and spring. -During a headache period, headache will occur at the same time every day. Usually in the late afternoon or early morning (4:00 / 5:00 AM). -My left eye (same eye I experience pain) will water to the point that people think I'm crying. -Brutal, excruciating, stabbing pain behind left eye -Nose congestion Migraine symptoms -Headache (stabbing sensation) begins and pain increases over hours. Headaches last for hours until treximet works or I can sleep it off. They last longer than cluster headaches are supposed to (4+ hours) -Sensitivity to light, sounds, and smells -Nausea, diarrhea -Strong desire to lay down ??? Additional random symptoms, triggers, and things that help. -Excessive sweating is a random symptom -Heat and cold help, especially wet washcloths -Sleep and fresh air also help -Alcohol, stuffy rooms, scents, seem to trigger -Muscle tension is also a problem

Hey all, This is my second post. I've had cluster headaches for about 20 years, but they usually only come at times of high stress. I currently think that the headaches are caused by extreme muscular tension in the neck, and I'd like to know whether or not other sufferers have similar tension? Do you have a knot in the muscles of your neck, hard as a rock, on the side that you get the cluster headaches? It might be so tense that you can't tell the difference between the muscle and bone, and even if you press on it, it doesn't really hurt. Please answer if you do, or if you don't, as either case is useful to know more. If it turns out that cluster headaches are caused by muscular tension, it means there may be a real remedy! Practice at consistent relaxation, massage, exercise, and decrease in stimulants may be enough. Thanks!

Hi All, this is my first post, but I've spent a lot of time on the site reading posts. It's a great community, thanks so much! So here's my hypothesis: I'm convinced that cluster headaches are caused by extreme muscular tension in the neck. If you eliminate the muscular tension, you eliminate the cluster headaches. Here's how we can start to test this hypothesis: I would love if each person who reads this checks themselves. My bet is that every one of you has a knotted muscle in the neck that's so tense it feels like a bone. And it's especially bad on the side where you get the headaches. Probably in the middle of the neck, between the shoulders and the skull. Here's my story: I've had very bad headaches since I was young, and started having cluster headaches when I was 19,in the summer before I started college. Twice a day, 3pm and 8pm,incapacitating pain in the eye-temple. I went to a chiropractor who popped something in my skull,and did a couple other things, and I felt blood flow into those area, and they stopped. I thought it was a one time thing. Then, after college, in the weeks after graduation, I started getting them again. Twice a day, same deal, etc. When I went back home, the old chiropractor had retired and the new guy was a quack. Fortunately, the horrible headaches went away after a few weeks, on their own. I started exercising regularly, especially my shoulders and neck, due to an injury, and I started mediating regularly. No more cluster headaches for about 10 years. But I get married and stop exercising and meditating so much. I'm about to start law school, and they come back again, lasting this time for a couple months. This is when I look the symptoms up online and discover that they are cluster headaches, and that there are other people who get them. No doubt, all the typical symptoms (ice pick in the eye and temple, flush, same times each day, watery eye and stuffed/runny nose on side of headache, etc). I'm relieved not to be alone, but also terrified that sometimes the cycle doesn't stop, it repeats indefinitely. They're going on for months, and I'm getting desperate. But I noticed that I keep getting them at times of extended stress. So I start looking at other things related to stress, and I start to meditate when they begin to come on. I can't meditate through the peak, it's just to much, but I can meditate through all the ascent. What I start to notice is that the pain isn't really coming from the eye-temple. It's coming from a hard muscular knot in my neck, on the same side as the headache. I can actually keep all the spasming-throbing right there in the neck until the peak of the headache when I lose focus and it seems almost like the spasming-throbbing in my neck is mirrored as incredible throbbing sharp pain in the eye-temple. Here's what I do: 1) get a couple deep tissue/trigger point massages. 2) Make a point to relax my neck and shoulders throughout the day. 3) Exercise the neck and shoulders at least twice a week with pullups and rowing-type exercises. 4) reduce my coffee consumption to one cup a day. 5) Also, I grind my teeth in my sleep. So I start making sure that I wear a mouthguard at night. 6) when I feel one coming on, at the very beginning, I try to actively attend to the neck tension and release it. And it seems to work, lessening the intensity after a few days and eliminating the clusters after about 10 days. I get them again when I'm studying for the bar, but now I can handle them and they only last a week or so. And I get them again last month, under pressure with fundraising for the business I'm building with a partner. But this time I start trying to relax, get a massage, reduce coffee, start exercising again, as soon as they start. Somehow they never develop into full-blown, rocking-moaning, stabbing-throbbing pain, except once. So here's my hypothesis again: cluster headaches are caused by muscular tension in the neck. If you eliminate the muscular tension, you eliminate the cluster headaches. And again, I hope you'll help me start to test this hypothesis: I would love if each person who reads this checks themselves. My bet is that every one of you has a knotted muscle in the neck that's so tense it feels like a bone. And it's especially bad on the side where you get the headaches. Excited to hear what you find!