MoxieGirl

Does pot help with migraines? May have to look into that. Also, I think (or maybe presume) a lot of their recommendations are inspired by big pharma's, and like mentioned, peer-reviewed papers. Doesn't mean they are at all in touch with the real world. I strongly feel like I've exceeded the combined knowledge of my GP AND Neuro when it comes to clusters. Yes, my GP has a close friend with clusters which gives her a better understanding than most, and yes my Neuro is a migraine sufferer, so he 'get's it' better than most as well. But after following their advice and prescriptions for 5 years, I only made significant progress with the condition when I came to this site. I now find I update my GP with new information each time I see her, which is once or twice a year. I haven't seen my neuro in 3 or 4 years. He just no longer because helpful, so why waste my time? MG

Very well said. And I like how they are worded because show really good examples. When I was learning to be a writer, we were taught to always SHOW, never TELL. That is how you get an idea across to people. So, I could say 'cluster headaches are the worst pain I've ever experienced.' (telling) Or, I could say, 'I once had a kidney stone and it was so painful I couldn't stand up straight. I had my partner drive me to the hospital, bent over double the whole way crying out in agony. Once there I was giving a shot of demerol, which didn't even touch the pain, so they gave me a second shot. After 48 hours in the hospital the stone finally passed - felt like peeing a glass shard. If I put that on my 1-10 cluster pain scale, it scores a 5. My worst ever cluster headache was a 14.' (showing) MG

I think, may be wrong, but I think what tangerinearmy is saying that if the pain from a cluster were 24/7 for days/weeks, it would be unbearable. So, I once had a headache that lasted 7 months. I was quite literally in pain 24/7 for 7 months. If that were a cluster, no, I wouldn't survive it. When I have a bad migraine that lasts 4-5 days, in some ways that is as bad or worse than a cluster because it is non-stop for days. Whereas tangerinearmy rightly says, clusters are normally measured in hours. And I think this is one thing that makes them survivable, and at the same time makes them Hell. Clusters wear you down after awhile, not just the pain, but the frequency of them, not knowing when the next attack is going to be. Am I going to have a pain free day today, or get struck down 5 times and not be able to do any of the things I have planned? All of these things combined make clusters a debilitating condition - not just the pain aspect. And is the core of my frustration, yes the pain is worse than 99% of the other stuff out there in the world, but the condition is even worse than that! On a side note, and a possible digression of the topic:Â Have you ever gone to a doctor due to an injury, and in trying to find out how much it hurts they as, 'On a pain scale of 1-10 where 10 is the worst pain you can imagine, how much does it hurt?'Â And you look back at him and say, 'Dude, you have no concept of real pain, none at all. Yes, I've just broken my arm and the bone is sticking out, but on my 1-10 pain scale, it's about a 0.5.' MG

I have an issue with that statement, and it has been bugging me for awhile. Many cluster heads, myself included, tout that statement about to gain sympathy from a public that does not understand us. It's as if that statement is meant to encapsulate the seriousness of our condition. We often lack other words to describe (or perhaps describe in one sentence) the Hell that is Cluster Headaches. And I get that. Like I said, I've used it myself. I saw a post recently that said.. "... Some doctors and scientists have described the pain resulting from cluster headaches as the most intense pain a human can endure - worse than burns, broken bones or child birth." WHAT!! I appreciate their well meaning intensions, but, WHAT! First off, scientists? Really, do we have scientists involved in the study of cluster headaches? But that's actually a trivial point. The real thing there for me are the statements 'most intense pain a human can endure' and 'worse than burns, broken bones and child birth'. OK, clusters are painful, very painful. The only other medical condition I know off the top of my head that comes close is Trigeminal Neuralgia, which I would say is about a 9.5 on the pain scale if clusters are a 10. They are a Hell in and onto themselves. But there are other things out there that cause phenomenal pain. I know of a kid who has a very rare chronic pain condition in his stomach that easily rivals clusters. I wish I could remember what it is called, but there are probably only 10 people in the world that have it. I also wonder about things like the Australian Box Jellyfish sting, or the fire ant. Get stung by enough of these jellyfish and you're dead! That sounds pretty intense. The fire ant is said to be like being shot by a gun! And yet, everyone compares clusters to child birth. I know they are trying to relate it back to a pain that everyone can understand, or at least 1/2 the population can. But I know people who had a really easy birthing experience, and others really bad. I've never had a broken bone, so can't say how clusters compare. The thing is, the pain of a cluster headache (in my very humble opinion) is just one part of the whole picture of the condition. What about the frequency, the sleepless nights, the sheer terror of not knowing when the next one will come, or perhaps worse, knowing that going to sleep will bring one on. Remember the film Nightmare on Elm Street? Remember how the kids were terrified of going to sleep? That's what it's like for a cluster head who gets attacks at night. The list goes on, and my rant could go on, but I'll stop here. I feel that we, as a cluster suffering community need to find an effective way to communicate the absolute Hell that having clusters is to people who are unable to experience them themselves. We must find the words to describe the condition in a way everyone (not just those who've given birth) can relate to. Rant over. MG

Wow! I didn't know, when I was writing this at 5am this morning, I was going to strike such a chord with everyone. I just wanted to let off some steam after being woken at 4 am with a pounding headache 4 days in a row. Spiny, I have 10 pounds here you can have, and you too NightCrawler. I have more than enough to share. When I'm stressed or depressed, I turn to food, not away from it. Tangerinearmy, ironically, alcohol isn't a trigger for me. In fact, I use to abort really stubborn migraines when the triptans don't work. CHS - Yep, seen your blog. People are stupid, and don't waste your time on stupid people. Also, slightly ironically, I was several times more suicidal as a man that I have ever been with clusters. I had a tough year with clusters that had me thinking pretty dark thoughts, but compare that to 40 years in the wrong body. Clusters are a cake walk. Tony Only - Dude, Yoga, ick. But not all of Yoga, it is really just the downward dog that does my head in, literally. The inverted position makes my head throb and gives me a headache, which turns into a migraine before exploding out into a cluster. Sham that about 70% of Yoga is downward dog. Pilates, now that's MUCH better. No damn downward dog. Better yet, Tai Chi. Pete, this is a great sight only because it is full of great people. It's one of the criteria for joining. You gotta be awesome. You're here, so guess that means you are. In 2007 I had a headache that lasted 7 months and was frequently punctuated with migraines and clusters. I call it my Year of Hell. 2010 comes in at a close second. I was getting 2-5 vicious attacks every 2-3 days for almost an entire year. The longest pain free period I had was about 6 days that year. I can safely say there was a time when headaches ruled my life. I backed out of visiting friends SO many times I stopped accepting invitations. Then I started busting and I got my life back. Life is still what happens between headaches, but most of time Life is measured in weeks instead of hours. I have a dream. I have committed this dream to a goal, and it is now my 8-10 year plan (still working out the minor details). Basically, I'm going to start learning to sail and eventually buy a sail boat. Most likely a 50' catamaran, and then I'm going to move onto the boat and out into the waters and go, as they say, off the grid. In between now and then I'm going to finish a couple books I'm working on and get published, in addition to a couple other money making projects I'm working on. My dream ends with me docked along the coast of a island surrounded by blue water and I spend my days writing. That is what is waiting for me on the other side of this wall. Anyone got a sledge hammer?

I have a picture in my mind of me standing in front of a brick wall. The wall runs on for miles to my left and right, and is a mile high. This side of the wall, where I'm standing, is a baron waste land, on the other side is life. The bricks of the wall are made from headaches, migraines and clusters. Actually, my life isn't all that doom and gloom, calling it a baron waste land is a bit of an exaggeration. But sometimes it feels that way. If feels like no matter how hard you try to go forward, this wall is there, stopping you. I shouldn't complain, I do have a successful IT company, am learning Sports massage, am a writer, ... life is generally pretty good. But then there are the headaches that grind everything to a halt from time to time. The one specific area that angers me the most is in physical exercise. I'm overweight. Although I've accepted my body the way it is, I would like to be slimmer. I would like to fit into clothes I used to wear. But physical activity is a major trigger for head pain of one sort or another for me. Last year I went to a Yoga class with my best friend, and I spent an hour afterwards in bed, curled up in a ball crying my eyes out from the migraine/cluster attack I got from it. I mean, YOGA! You should see what happens when I do real exercise. I haven't been back to the gym since. As soon as the weather gets a little warmer I'm going to start walking. I want to get into the habit of taking long walks, maybe venture out for a few hours on the weekends. Walking often seems like the only activity I can do that doesn't trigger a headache, and swimming. I like swimming and will be starting that up again soon too. Guess my life isn't quite the baron waste land. How about you? Do clusters affect your body shape/size? I know someone of you lose weight when you are getting attacked. MG

Hugs right back at 'ya Didgens. I find that when I've been fairly cluster free for awhile, I either drift away from the board or read, but don't write much. Then the Demon returns with his friends, and I take more of an interest in the board. Although I've had a good month or so where clusters are concerned, I'm making an effort to stay connected this time. Also, the board has been a bit quiet this year. Not dead by any means, but quieter than other times. Good to know you're still around. xx MG

Hi gang, RazorPP had a nice idea. He asked if I could write a poem from the cluster buster group. The idea is that you provide the inspiration and I'll wrap words around it. So please add to this post any words or phrases that encompass your experience with cluster headaches and/or busting. They can be single words or phrases, ideas, feelings, thoughts, fears, experiences etc. I'll see if I can then bundle them together into a poem of sorts. Once we have a number of replies, I'll start hammering away, and as more come in I'll expand the poem. Might be a fun project. MG

That sounds like a fun challenge. If people send ideas, concepts, images, experiences, feelings etc. I'm sure I could work it into a nice poem. MG

If I remember correctly, Indomethacin helps to identify if you have Clusters or SUNCT. Indomethacin working on SUNCT but not on Clusters. I would be inclined to say that for most people with clusters Indomethacin does not help them. Although, could be wrong. MG

Thank you. It means a lot. If I could choose to go back in time and undo my transition to cure my clusters, I wouldn't do it. As bad as chronic cluster headaches are, being in the wrong gender was immeasurably worse. MG

This is one of my favourites. Can You Not See? Can you not see? There are two woman inside of me. One is brave and strong, To see the other you must look deep and long. The first is the one the world does see. She looks amazingly similar me. She is the author, manager and boss. Her heart is strong and she does not give a toss. She stands tall and her skin is fare. And she has beautiful, silky long hair. She does not hurt or bleed. In the face of adversity, she does not flee. She is the one others call when in need. She is always more than willing to please. It even makes her happy to help when she can. A taxi, a friend, someone to lend you a hand. The other me I do not let many see. Her heart is tender and meek. She longs for another to hold her hand. In adversity, to help her to stand. Her heart easily bleeds. And tears trickle down like beads. Alone in bed she weeps, Lost in a forest, dark and deep, Will you hold her close, or get to know her name? Will you do more than just play the game? WonÂ’t anyone take the time to see? The other women inside of me. ---------------------------------------------- I used to live in an 18th century Hall out in the country. I had a 1/4 mile private drive, it was very secluded, quiet and private. I wrote this one Saturday morning sitting in my 2-bedroom apartment (aka a Flat in the UK). The Flat This morning I sat, next to my window open wide. Listening not to the noise of cars passing by. Instead, many song birds whistled and sang. In my ears their beautiful music rang. I watched as squirrels bounded through the trees. While sipping on my nice cup of tea. In the distance I even glimpsed a deer. This morning, I was reminded why I love living here. ------------------------------------------------- This is one of my oldest poems, and is now a tattoo around my wrist. I live my life in fantasy. At times I gaze upon reality. And in disbelief I ponder, How to people live over yonder? -------------------------------------------------- This last one is from many years ago when I was changing my gender. I like it, but I don't share it often. I've come so far since I wrote this. Dirge of the Damned I am a woman, I am a man, I am one of the damned. Cursed to live between the genders, Blessed with the wisdom that it renders. My spirit is split in two, And few see the world as I do. You thought you knew me, You have yet to meet me. The Ferryman - I have paid, Gold - blood and tears I gave. The fake me is but a memory, And the true me is now set free. I become one that day, Whole and no longer afraid. With joy - I sing the Dirge of the Damned, For I am no longer trapped as a man. MG

Hugs. Wasn't my intention, but I'm glad you connected with it. I did a little tweaking. Have been meaning to for awhile, just a word here and there. If you like, I have a few more half decent poems I'd be happy to post. Not all are doom and gloom and about pain. MG

Congrats on finding a doctor worth his salt. They are like gold dust. Indomethacin, interesting stuff that is. I use it occasionally when I'm worried about getting rebound headaches from all the Anadin I pump through my system. It's not touched my clusters or migraines, and does no more for my daily headaches than Anadin, stops the current one. I'm sure you know this by now, but don't take it on an empty stomach. No fun that. Any cure that works is a great cure if you ask me. MG

*blush* Thank you.

I do love the website below, they have some great articles and news stories. This is the first I've heard of this use for psychedelics, but any article that puts them in a good light is a good article in my books. I also like how they point out that effective medical doses are far below what is required to trip. I think it's a good thing to get across that there are other uses for these drugs. It is kind of, at least in my mind, the theory that a glass of red wine is good for you. A bit of something = good, too much of something = not so good (or bad). A bit of magic mushroom = good, too much magic mushroom = better. No, no, scratch that. Not what I meant. You know what I mean. Study Suggests Psychededlic Drug Could be Used to Treat Asthma] http://www.iflscience.com/health-and-medicine/study-suggests-psychedelic-drug-could-be-used-treat-asthma MG

Sweet. Not seem much talk about Ketamine in relation to the beast. If it works. Please keep us posted. MG

Just tried it, is it down or has FB blocked it? MG

All I can speak for is my own experience with Indomethacin. As you know, I have chronic daily headaches. My GP was concerned, a couple years ago, that I was also getting rebound headaches because of all the Anadin I was taking. So she put me on Indomethacin to ween me off the Anadin. It worked surprisingly well, as long as I remembered to eat something before taking the Indomethacin, my stomach really doesn't get on with the stuff. Did it help my migraines, no. Did it help my clusters, nope. Was it more effective than Anadin, no. MG

They're a bitch, of that there is no doubt. MG's rule on clusters: No two cluster-heads are the same, and just as soon as you figure yours out, it changes. Technically, to be chronic you have to go a full year without a period of remission. I've been chronic 8 years, longest break was 23 days. You've got a ways to go, I shouldn't worry if I were you. Sounds like busting is making life bearable. My clusters tend to be quite short, lasting minutes, and are rarely at night. I too count myself very lucky. But I never forget they were once worse, much worse, and can get worse again. So keep up the fight and hang in there. We're here for you, and have been where you are. MG

I rarely get hits when I sleep. I think only about 15% of all my attacks happen during sleep. But, like I always say, no two cluster heads are the same, and just as soon as you figure yours out, it changes. MG

Why do I cry? Is it the pain that makes me cry? No, there are other reasons why. Fear, despair and the chronic-ness of the pain. Read on and I will explain. Waking most mornings with a headache is no fun. The pain rises long before the sun. ItÂ’s not how I would like to start my day. As the pain squashes all my desires to play. When night comes and itÂ’s time for bed, This is when clusters hunt for my head. They pounce like an explosion in my eye. The pain is so consuming, I cannot cry. After the attack my body shudders and shakes, Terror is dragging me to the bottom of a lake. And this is when I can finally cry. I cry and I cry and cannot stop, no matter how hard I try. Migraines like to camp in my optic nerves. They light a fire, for many days it burns. Light, sound and movement cause agonizing pain. It is as if my whole head were aflame. Day in and day out it often seems. Visits by these devils that make me scream. Headaches, Migraines and Clusters, evils three. But I try to not let the pain, define me. I donÂ’t often write about the days IÂ’m pain free. For my attention then turns away from me. Life is, as I think is quite plain, What happens between the pain. I wish there was a solution to this plot. But in my heart I fear there is not. These devils shall be with me till I die, And this, this is the reason why I cry. MG

SPUT! Oh dearie me NO! I cannot stand the taste, smell or sliminess of mushrooms. Put some under my tongue -urgh! (makes retching sound) Thankfully I figured out how to crush them and make capsules, is about the only way I can take my medicine. MG

Hi didgens, If it is this cut and dry, it could explain the seasonal aspect many people experience. Maybe it's not their hypothalamus, but the plants coming into bloom, or the neighbours trimming them, or someone spraying them.... But, I doubt it is that cut and dry, at least for everyone. We all have triggers that others don't have - alcohol is a prime example. A trigger for most people, but not for me. So this may be a trigger for your son, and I hope you find a solution. I do know that strong smells will trigger migraines for me, and sudden cold can trigger a migraine or a cluster. I read an article once (which I can't find now) talking about how migraine sufferers are generally more sensitive to things - smell, light, sound, weather, etc. - and many of these things can be a trigger. I did find this article, https://www.excedrin.com/stories/can-smells-cause-migraines/ which talks specifically about smells that may interest you. As a migraine sufferer, I experience a lot of similarities with migraines and clusters - particularly in regards to my heightened sensitivity. So I don't think I'd be far wrong in thinking if something is true for migraine sufferers, it may easily be true for cluster heads too. You may find more information about smells being a migraine trigger than you will for it being a cluster trigger, but at the same time, you may find some of this information applies to both. Cluster headaches clearly need more scientific research. If you're son starts getting attacks on a nightly basis, could he stay at a friends one night and see if he doesn't get attacked? If you can't effectively block the smell getting to your son in your home, maybe remove your son from the smell? Might provide an interesting test to your theory. MG

I would say RC Seeds will definitely help with migraines, if only based upon my own experience. As I've mentioned many times in my posts, I had 64 migraines the year before I started busting (which was a little higher than normal, but not much) and 3 the year I began busting. Although I did bust some that first year with mushrooms, most of it was with seeds, especially at first. MG