MoxieGirl

DD, I thought that might be the case. I'll see about fleshing my initial idea out a bit more and then ask for more people to contribute.

Thanks for the feedback Jandrews. I think a lot of people are like that, especially if they aren't familiar with online forums. I'm an IT Consultant, and use forums all the time, so didn't struggle. But if you don't it can be daunting. A post like this might also help reduce the newbie repeat questions. We are always happy to answer such questions, they aren't a bad thing. But a bit of knowledge when you come to the site would be a good thing for everyone, me thinks. At the very least, it'll provide an idea of where to start and what to ask. MG

Hi wonderful people. I was wondering if we should have a pinned post in the General Board section called something like 'Start Here'. This post wouldn't replace the posts in ClusterBuster Files, but be a light introduction, with links to those posts, and others, with more detail. Here's a draft of what I have in mind. First off, don't lose hope. Cluster Headaches are not unstoppable. It takes patience, some trial and error, and research. But it is possible. The wonderful people on this site are here to help. Combined, we have years upon years of experience and knowledge. Feel free to tell us your story and ask questions, and we will do our best to help. To start with, we recommend you scan through this post, follow the links when you are able, and then introduce yourself to the community and ask anything you need to know. What can I do to reduce my Cluster Attacks? - Use oxygen, energy drinks, coffee (etc.) to abort an attack as it's happening. (with a link to more details) - Start on the Anti-inflammatory Regimen to reduce and prevent attacks. (link to more details) - Start a headache diary, and record when you have headaches, how painful they are, etc. - Use the headache diary to try and identify possible triggers (alcohol is a popular one affecting about 50% of cluster sufferers). Avoid triggers at all cost. Next steps - Information on commonly prescribed medicines, how effective they are, side affects, etc. - Other options. You know, that sort of thing. What do you think? MG

Hey tpos, I'm chronic, so not sure if something like a change in sleep patterns could trigger an episodic attack period or not, but if I mess up my sleep to much, then I'm sure to get an attack. I've learned I can have 1, maybe 2 late nights in a week and be OK, but no more. Batch - re the survey. I found a copy of the survey results here: https://ouchuk.org/sites/default/files/downloads/cluster_headache_survey.pdf I wish the report gave more details, as it's quite vague. And wished there were a more up to date version of the survey. For example, "Average time to correct diagnosis was usually less than one 1 year (25%) or 10 years plus (22%)". But 22 + 25 = 47%. I presume the 3rd option was 1 year - 10 years, in which case that would be 53%, which is (the last time I checked) greater than 47%. So it feels like there are details missing. But there are also some really interesting things - like only 50% said alcohol was a trigger. I was always lead to believe it was much higher than that, like 90%. MG

Thank you Mit. Here is the best description I've come up with for my cluster headaches, that usually gets, at least a partial, image across to non-headache sufferers. Most people have experienced a muscle cramp, which often occurs in their calf muscle. So I ask them to think back and remember what their last muscle cramp was like. I ask them to remember how sharp and fast it came on, suddenly, out of the blue. I remind them of the level of pain, that was so all consuming they were unable to think about anything else, even to come up with a solution to make it better. That level of pain consumes and focuses the whole body and mind for the 30 seconds or few minutes that it lasts. Then, I ask them to imagine what it would be like if the pain were doubled. And then, to double that pain again, so now it is 4 times as painful. Then, I ask them to relocate that pain to the inner corner of the eye ball, right where you would get hit by an ice cream headache. And lastly, instead of lasting 30 seconds, imagine it lasting 1 - 3 hours, and there is nothing you can do to stop it, predict it or lessen the pain. I then say that what they are imagining, is just a shadow of what a real cluster attack is like. And there was a time when I could have 4 or 5 such attacks in a single day. MG

Thanks Rose and CHS for your kind words. I've been at my new job a full week now, and it is slowly eating away at my soul. The people I work with are lovely, absolutely fantastic. And the work is not difficult, in fact I'm teaching them as much or more than they are teaching me. It pays OK, and is a job. So, really, honestly, I have nothing to complain about. OK, it doesn't excite me, and fills me with dread. I sometimes find it difficult to explain to people that I find repetitive, non-challenging work EXTREMELY boring. And I find boring, repetitive work to be extremely stressful. I must have challenges, I must have things that force me to think and work out problems. I have been feeling sick to my stomach lately, with no appetite and constantly on the verge of tears. For me to have no appetite, that is truly saying something. My housemate fixed a lovely chicken kiev with delicious mash potatoes for dinner, and it is sitting here beside me and I just want to be sick. The thought of trying to eat turns my stomach. Something has to turn around soon. Life has to start getting better. MG

J & Spiny, Thank you both. You have become good friends, and are good people. As is everyone I've met here. I would be long dead if it wasn't for this forum, and I think you for your thoughts and support now. What's frustrating, is I can see several solutions to my finances, all just around the corner. I have a sci-fi book ready to be published, and a book on the lottery (the one mentioned above). I also have an invention I'm working on with the aid of a local business support organisation. This invention has the potential to make Billions! It is a product that could be sold world wide, and something everyone would love to have in their homes. I often feel like I'm standing on top a gold mine, but with no shovel to dig it up. But, I'm slowly moving these projects forward, bit by bit. What I need is an investor to really launch them. Love you all, MG

Thank you Batch. One day, I'd love to perform it (or get a good actor to perform it) on stage. I think it would be very powerful. I might have to approach the local amateur dramatics people and see if I can find someone interested. MG

No Escape Today is like any other, Yesterday, today & tomorrow, all blur together. Day in and day out, everyday the same, I wish I could escape this game. The Beast visits most when least expected, My face drains of colour, and I feel quite infected. Into one eyeball, always just the one, the Beast comes, Blinding and piercing like I’ve been poked hard, with a thumb. My eye seems to freeze as if turned to ice, And the pressure builds as if placed in a vice. My nose starts to run and my eye begins to tear, As my body is gripped with fear. Red hot nails, they pierce and twist in my eye, The burning is such that I wish to die. Sharp blades cut and rip through my skull, As I pace the room and bang my head on the wall. I can feel my cranium crack, As all my world turns to black. For one hour or maybe two, How long it really lasts, I dare not tell you. For all that time, I pace and I walk, Sat on my bed, back and forth I rock. I suck on oxygen and drink caffeine, I can be quite snappy and downright mean. But eventually the nails are removed, as are the blades, And the pain within, all but fades. I am drained, I am spent, My energy is at zero percent. I need water, I need food, But instead, I lay here unable to move. I take one deep breath, and maybe two, Before the next symptoms ensue. Then the crying truly begins, As my body shakes from my bones to my skin. I am racked with hot convulsions in wave upon wave, To this terror I am now but a slave. Eventually, even this fades to a whimper, As my body begins to shiver. Wrapped in a blanket I raise myself up, Sloshing some water into a cup. Today was like any other, Yesterday, today & tomorrow, they all blur together. Day in and day out, everyday the same, Oh, how I wish I could escape this pain.

Thanks guys, Rose - I have used Indomethacin before, when I was getting rebound headaches from taking to much Anadin, it was an alternative that helped with the headaches. But, all it does now is make me sick to the stomach. My migraines run in the family, and I've had them off an on forever. Some years I'll have as few as 3, other years 100+. Sometimes they last up to 7 days, most of the time I can get rid of them under 2 hours. I also have chronic daily headaches, and it can be tough telling a headache apart from a migraine, so I often just throw a handful of anadin and triptans (eletriptan or zomiltriptan) at it and hope for the best. If that doesn't work, sometimes migraleve does (a combo of paracetamol and codeine), and if that doesn't work, by day 3 or 4, I turn to the vodka. 8-10 Shots of vodka, and I'm right as rain the next day, no matter how bad the migraine was. Mushrooms help the migraines as much as they do cluster headaches, but all of my last batch of shrooms went to my best friend to help with her depression and muscle spasms associated with MND. Her needs are more than mine at the moment. But I should have a fresh crop soon, and plan a couple good busting sessions that I hope will put an end to the migraines for awhile. Clusters are coming back again this year. I normally have one or two a month, but they are so mild and short (less than 5 minutes) that I barely notice them. The last few weeks though I've been having worse ones. Oh, and I did some research on the company that wants to publish my book this morning, and they are rubbish. A vanity publisher only interested in taking my money up front. So, back to square one. Just when I think this year can't get any worse, it does so in a spectacular and unexpected way. MG

Hello wonderful people. Life is a bit overwhelming at the moment, as it has been a horrendous year. I thought my year with a 7 month headache + migraines + clusters was a bad year. Then I thought my year of 2-5 clusters every other day, was a bad year. Neither of them stack up to this year, although it is a different kind of terrible. So, I hope you don't mind a little moan. The year started with my best friend & housemate being diagnosed with Motor Neurone Disease (a.k.a. ALS). Her disease is progressing fast, in December she was able to walk on crutches, by February she was in a wheelchair. She now has an electric wheelchair and will soon be getting a computer that will follow her eye movements to select letters and speak. Between you and me, I think this is going to be her last Christmas. And she's only 45. In March, our landlord told us he was going to put our home on the market. If he finds a buyer, we'll have 2 months notice. However, it is nearly impossible to find a place to rent that has wheelchair access, a downstairs bathroom and bedroom AND accepts pets. Where we live in England, that is nearly impossible. Thankfully though, our landlord hasn't sold the place yet, and he has the price to high so that it won't sell, from what we can gather, so that he doesn't have to kick us out. We are hoping that remains the case for a while longer. In April, my IT contract ended with a company I'd been working for, for 3 years. And it paid really well. Because my best friend's condition was degrading so rapidly, I decided to not rush into another contract until we had support lined up for her. We were about out of money 2 months ago, even more so last month, and are on the verge of being broke this month. Rent is late, other bills are late. (But, I started a job this week - more on that later). May - July was all about supporting my friend, and watching one muscle after another stop working. At the end of July we finally had professional carers coming in daily to help provide care. It took a bit to get it all settled down and working smoothly, but it finally allowed me to get a job. Last week I interviewed for 2 jobs. The first job, the one I wanted, paid around £500 A DAY! That would have resolved all our financial problems and I would have been debt free in under a year. The second interview was for a job that paid a whopping £120 a day (1/3 of what I was earring 6 months ago). Also, this job is an IT entry level role, where I was in my carer 20 years ago! Of course, you know which one I got! My first day of work was Monday, on my birthday. It took all my strength to go to work that day. I was hating myself for not getting the other job, hating the huge backwards step in my carer and massive pay cut. Well, I was living on benefits at the time, so I suppose a pay raise, but you know what I mean. Anyway, I'm feeling better about it all now (Friday). I've let the other job go, and started getting in this job this week. It's what I need to do right now to pay the bills. So I do it. And then, there is a list of little things. March was the end of my 3 year contract for my car. A car that I loved more than any other I've owned. But, it was too low for my best friend to get in and out of easily, and the doors were big and to heavy for her. Plus, didn't have much space for a wheelchair. We needed a bigger car. So I went to the dealership and traded in my car and got an SUV. Wheelchair fits fine, and getting my friend in and out was much easier. But now she's progressed so far we rarely go by car. She has an electric wheelchair that can't be easily lifted and put into a car, so we go by bus most of the time. We're looking into one of those vans you can drive a wheelchair into. I'm a little gutted that I gave up my favourite car and increased my loan payment by £100, and now I don't really need the car I got. The thing is, stuff like this isn'y anyone's fault. It's the damn MND. I haven't mentioned my best friend's daughter, who also house shares with us. She's being bullied at work by her boss and not allowed to take time off for doctor appointments for her mum and stuff. It's becoming a bad situation. My migraines have been horrific this year. I've been waking up with a migraine 5 nights out of 7 for the last year. They normally go away in a couple hours after taking triptans, but not a great way to wake up and start your day. Somedays it was all I could do to get a drink and the pills and go to bed with as little head movement possible. Then I'd lay perfectly still for a half hour till the drugs kicked in. Those are the highlights of this year. On the good side, my friend's daughter got engaged. Today I got a letter from a publisher that wants to publish my book - which is AWESOME. Every day I keep thinking that surely, things will turn around soon. But a day, a week, a month goes by and life just gets worse. Really at a loss at the moment on what to do. Not so Moxie, Moxie Girl

Hello Batch, you wonderful wonderful man. I hope you are well. Clusters have been OK this year, migraines off the charts. Has been the worst year ever, in many ways (but that's for another post I think. Maybe off topic). Thanks for the tip. Even if I try to paste raw text, no links, I get the error. Will try more things this weekend. Hugs Spiny. MG

Hi, Has anyone else had problems trying to paste anything to a post? When I try, be it text I've written in another app or even a link to another post, I get a 403 error, and it won't let me do it. Only if I type everything out in the post will it let me submit it. MG

Oh, good topic. I've found that, most of the time, the worry of having an attack somewhere produces enough stress to fend off an attack. But when I get home, when I can let my guard down and relax, that's when I get hammered. So although I've had attacks at friend's houses or at work, they've never been really horrific ones. But while driving, that's another matter. I can't count the number of times I've pulled over into a layby to wait out an attack.

Hi Greeneyes, Headaches, in general, can be difficult to diagnose at times. I'll explain about my headaches, and see if my descriptions help you at all. First off, migraines run in my family, and I've had them off and on all my life. I typically would get hammered by them during times of stress (marital breakup, etc.) but then go into remission for years. Until 2007. Dec 31, 2006, 10:00 pm I get a headache. Don't think a lot of it, but it is still around the next day (had a quiet New Year's at home that year, didn't drink). A few days later, still have the headache. I get a migraine within a few days. Migraine lasting 3-7 days was not unusual for me, but this one lasted only a couple. Then I get this horrific headache beyond description that lasted an hour or so, then was gone. All the while, I still have the background headache that started on Dec 31st. Eventually I haul myself in to see my GP and am diagnosed with Chronic Daily Headaches and Cluster Headaches (plus the already documented migraines). That one, single headache lasted 7 months! It finally started to break up a bit in July, and more in Aug and September. This whole period was punctuated with nearly weekly migraines, and one or two cluster headaches a week. During this first year, my clusters were like clock work. Every Tuesday at 7:20 pm, and they'd last 1-2 hours of extreme pain. One particular attack felt like someone had hit me, hard, in the forehead with a baseball bat. Then, slammed a heavy crowbar into the crack in my skull and began splitting my skull open. I could feel the crowbar work back and forth, prying the bones apart. All the time, my eye was a ball of fire. Then, after a few minutes, the crowbar would be removed and the crack would begin to painfully heal itself. Then the crowbar would return. This lasted at least 30 minutes, and the pain was off my shockingly high pain threshold. Sometimes my clusters would come on gradually, with a 1-2 hour headache preceding them. But normally, it is like being hit in the face with a baseball bat. The pain is usually a blinding, cold, white light. Sometimes burning hot, sometimes bitter cold. Always in one eye and on one side of the forehead. Although, that said, I have had 2 cluster attacks over the years that were bi-lateral. So either they were odd balls, or I had 2 attacks at the same time. Either way, I don't recommend it. After the attack, I would always have a 20-30 minute post traumatic attack which involved intense crying and rocking back and forth. It is believed the hypothalamus triggers cluster headaches because it controls the body's clock, and is why you can almost set your watch by cluster attacks. They hypothalamus also controls our body temperature, and during these post attacks, my body temp would swing from hot to cold, and back again. A lot of attacks feel like a red hot poker, or spike is being driven into your eye. If you've ever had brain freeze, cluster attacks tend to be in the exact same spot, in that inner part of the eye just at the base of the nose. This is because when you eat something cold, the pain refers up the Trigeminal nerve to this point, and this is where clusters often attack. But a cluster is like brain freeze times 1000 and lasts 1-3 hours. Another way I think of them is like a muscle cramp. Have you ever had your calf muscle sudden cramp up? You're in absolute agony for 1-3 minutes, and the pain consumes your every thought, your every action. That is a cluster headache, just increase that pain 10 fold and put it in your eyeball for 1-3 hours. Another thing a lot of CHers report are Shadows. Some find shadows actually painful, like a normal headache the precedes an attack. They can come before, or after an attack, and hang around for days or weeks. To me, shadows are sense of foreboding, a heaviness in my mind and can actually take the image of a shadow in my thoughts. It's a demon just waiting for you to walk around the corner of the house and then pounce! When a cluster is gone, it's gone. No pain. there might be a lingering headache, but the cluster itself only lasts a few hours. Keeping a diary isn't important. It's vital. It is the most vital thing you can do (in my humble opinion). I've kept one of every headache I've had and every pain killer I've taken since 2010. This diary has helped me identify my triggers (lack of sleep, stress (to much and I get a migraine, to little and I get a cluster), getting to hungry, cold, etc.). The diary shows me that in 2010 I had 63 migraines and 42 in 2011. But after starting on the remedies you'll learn about on this site, in 2012 I had 3. In 2011 I had 257 cluster attacks, and that dropped to 169 in 2012. I can even project things forward, and predict that I'll have 51 cluster attacks this year. Ideas of things to track in your diary: Date/Time of the following events When you have a headache, and the pain level on a scale of 1-10 What you eat and drink What pain killers or other remedies you take for the headaches What preventatives you take Your stress level on a scale of 1-10 Your sleep (hours slept and how well you slept) Hope that helps. MG

Hi, My theory is that no two cluster heads are alike, and just as soon as you figure yours out, it'll change. I'm a chronic sufferer, but my clusters are very different from most. Alcohol is not a trigger for me, but KFC's Krushems are so cold they'll trigger an attack, as will sudden, strong smells or changes of temperature, etc. Also, to little stress. I have chronic daily headaches, chronic migraines and chronic cluster headaches. I would say a headache diary is vital to understanding your headaches. Through my diary (which I've kept daily for 7 years now) I learned that I cannot stay up late more than 2 nights in a row unless I want to be body slammed later with migraines and clusters. I used to track what I ate & drank, my exercise, sleep, headaches and all painkillers and preventative meds I took. After a couple years I cut that back, and I now just track all my headaches and the meds I take to stop them. But, tracking this stuff showed me Topiramate was making things worse, and I can show that Magic Mushrooms and RC Seeds drastically improved my clusters. MG

Weirdness to the max. But interesting.

Hi Ken, I have a saying. 'No two cluster heads have the same symptoms, and just as soon as you figure your's out, it changes.' in my most humble opinion and experience, the best experts on clusters are right here on this board. You won't find anyone on the planet who understands the beast better, and knows how to kill it quicker. Or, at least put it in chains for a time. I was very fortunate in that I had a GP who had a friend with CH and knew exactly what I was describing on my first visit about it. She was also willing to let me try what I wanted, and fully supported me. So when I said I was weening myself off Topiramate and was going to take magic mushrooms, she said 'cool'. (or something to that effect, probably 'OK') It also always amazing me how the medical experts don't know the basics - oxygen + energy drink. Simple. The D3 Regimen is great, well worth trying. I micro dose with mushrooms. Usually take about 0.2 grams a day. It can take 5-10 days for enough of it to build up in your system before you notice an effect, so be patient with it and be consistent. Don't miss a dose, and be aware of it not working at all if taking certain medicines, like triptans. I started with the typical weekly busting of shrooms and seeds, and that worked great. But I like how I don't get any trip with the micro dosing. When I'm in the mood for a trip, a larger dose is cool. But mostly I just want to manage the attacks (I'm Chronic btw). I'm sailing to Belgium in August. I live in England and have a 7 day sail booked to cross the channel, go to France and Belgium and back to the UK to get my coastal skipper certificate. Really, really can't wait. MG

Hi FunTimes, Sounds like you're getting some great advice already. The hardest thing about this board is racing other helpful people to be helpful first. Seriously awesome people here! I'd add a comment or two to Spiny's advice about how to help the family, and how to help the family to help. I got into a relationship shortly after my clusters started, and although the "relationship" only lasted a year, we are now (10 years on) the best of friends. We are housemates, and she has MND (aka ALS), and I'm now the one supporting her, but I digress. She always found it difficult to watch me go through the pain and feeling totally helpless, and my heart broke for her. What we figured out was that after the attack, I desperately needed a glass (or 3) of cold water and a blanket. During the attack, I just needed to be left alone. So she soon learned to just leave me be during an attack, and not to worry. To get on with whatever she was doing. But, she'd always have water and blanket ready for me for when the attack finished. I know it feels like your abandoning the person in pain to walk out of the room and close the door, but it honestly helps them relax a bit and not worry about what the person is seeing or feeling. Sometimes, leaving the person to be alone is the best treatment. I have never really figured out who has it worse. The sufferer, or the person that watches them suffer. But know this, talking with people that understand helps. Your family is more than welcome to come on here and join in with the conversations, or start their own. And also know there are ways to make things better, many ways. Doctors don't always know the ways, and we don't always know them all. But you'll struggle to get bad advice here. At my worst, I was having up to 5 attacks a day, every 2-3 days for a more than a year. But I found the answers here, and I barely have any attacks now. Hang in there. MG

I grow my own. In fact, I'm suppose to be researching different ways to grow them today, and start a new batch. Guess I best get to that. I bought a capsule making kit and a 1000's capsules from Amazon. You can get them in 3 different capsule sizes, and I thin I picked the medium sized one. I also have a set of electronic scales that goes to the 100th of a gram (0.00), so I can get a pretty accurate measurement of their weight. I like mine around 0.20 grams, but my housemate prefers them between 0.15 and 0.17 grams. It is surprisingly easy to do. Grow the mushrooms (the hard part). I then place them in a large wire sieve lined with paper towels and place over a heater on a low heat. A day or so later, and they are cracker dry. And they need to be CRACKER dry. Then, grind them up in a mortar and pestle. Load up the capsule machine with empty capsules, pour in, tap down, pour in, tap down until you're happy then close up the capsules. Takes a few tries to get the hang of getting the quantity right, but is easy. I used to put the mushrooms in peppermint tea, but could not stand the taste. The worst bit, I used to love peppermint tea, but now I associate the smell with mushrooms, and want to vomit when I smell it. Capsules are SO much easier. One capsule a day for micro-dosing, 6-10 capsules for a full bust. MG

Actually, putting chocolate in with the abortives wasn't the right place. I usually have it after the attack, to help stave off the PTSD and regain some of my energy. Thankfully, it's not a trigger for me, and neither is alcohol. So I count myself lucky in that regard.

Hi D, I feel your pain. I have chronic daily headaches, my longest one lasted 7 months, non-stop. And chronic migraines and chronic cluster headaches. I've always had migraines on and off, they run in the family. The chronic dailies and clusters joined the party in 2007, and I've had them all, all the time, ever since. No periods of escape for me. 2007 was my Year of Hell, when the headache lasted 7 months and was being enhanced by the migraines (which lasted 3-7 days) and twice-weekly cluster attacks. 2010 was also a really bad year when my clusters ramped up to 2-5 a day, every 2-3 days for a year. I've come up with 3 pain scales. My headache pain scale of 1 - 10. On that scale, I start taking pain killers at a 3, leave work at a 7. My migraine pain scale starts at a 7 or 8 on the headache scale, and yes, like you, sometimes headaches turn into migraines if I don't fight back quickly enough. Then, my cluster scale starts at a 7 or 8 on the migraine scale, but the '10' on the cluster scale is way out there. Like 100 on the migraine scale. There really is no comparison, and I've had clusters go off my scale all the way up to 14 or 15. Scary stuff. I haven't broken a cycle with micro-dosing, but do micro-dose regularly. I use about a 0.20 g capsule of mushrooms, which has zero noticeable affect on me. Doesn't even make me drowsy. But, it builds up over time and helps, takes 5-10 days to build up enough in the system to notice an improvement. Next up from that is RC Seeds as CHFather mentions above. I wrote up my recipe for taking them a few years ago and posted in the Files section. Called it MoxieGirl's Seed Recipe or something like that. I don't really trip much from seeds, more like having a couple glasses of wine on an empty stomach, and they easy to get a hold of. Seed and Shrooms are both great for migraines too. The year I started on mushrooms I had had around 60 migraines that year. The very next year, I had 3. I've been busting with shrooms and seeds off an on for about 6 or 7 years now. My clusters are down to 1 or 2 a month, each lasting less than 5 minutes. Most of the time they make me stop what I'm doing and catch my breath for a minute or two, then I press on with whatever it was I was doing. A few times a year I'll get one that lasts 30 minutes or so, but again, really mild. I've had maybe one or two that have exceed a 6 in the last 2 years or so. If I were to make a list of things to have or try, it would probably look like this: Abortives: Oxygen, Energy Drinks, Chocolate, Coffee. Preventatives: D3 Regime (which I can't take), Mushrooms and/or RC Seeds or LSA. Nothing any doctor has given me has ever helped. I do all my own medication, and it's much more effective and less side affects. MG

Just to add, I don't mean to sound harsh in the above post, or negative. I was sceptical of Magic Mushrooms when I first heard about them, and the D3 Regime. I do believe you have to try absolutely everything you can when you have this condition, but I also believe new miracle cures should well vetted before getting a lot of people's hopes up. Just be careful out there. MG

Interesting thread, indeed. Not impressed with the name, I must say. I mean, if you are trying to make it NOT sound like snake oil, 'Jesus Shot' is not the best choice (in my humble opinion). I know nothing about Doc Mike, but I can easily picture him standing on an upturned milk crate, stem of wheat between his lips, at the county fair offering this stuff to passers by. "Step right up folks and try my magic elixir, which I like to call the Jesus Shot! It will stop your headaches in their tracks and all your problems will melt away. All at the low, low price of $300!" And then, in a low and quiet voice, speaking very rapidly, "side affects may include, muscle weakness, problems with your vision, severe depression, shortness of breath, rapid weight gain, seizures, confusion, acne, sleep problems, loss of hair....." Sorry, that is probably unfair of me, but over the years I've read about so many 'miracle cures for cluster headaches' I've lost count. Like the optician that swears his specially tinted glasses can cure clusters. *rolls eyes* I know what it is to be desperate for a cure, even a temporary cure. As someone whose been chronic for 10 years, I even took Topiramate for a year, and had it totally screw up my mind & vision and put me on the brink of suicide, to try and stop the pain. I get it, I really do. But please, I would encourage everyone to who is thinking of taking this Jesus Shot to do your research first. Start by reading the side affects for the 2 main ingredients: Dexamethasone: https://www.drugs.com/dexamethasone.html Kenalog: https://www.drugs.com/kenalog.html If you're not prepared to deal with these side affects (they should add hair loss to the list) then walk away. Because apart from buying the hope that it'll stop the clusters, you ARE buying at least some of the side affects listed. I'm not trying to be negative, but am encouraging everyone to get all the facts. I would do no less than this if I were buying a new car, let alone having someone put a needle in my arm. Heck, I do at least this much research when buying a new waffle iron! Lastly, it would be nice to see some professionally collected data on the people who've tried this, along side a control group. A double-blind study would be the bees knees! I really liked how razorPP kept us posted of his results after getting the shot, and would like to see more data along these lines instead of 2nd hand reports. Would love to know more about the side affects razor experienced too. If you're going to make this drug more popular, then I would advise doing this: (again, just my opinion here) - rename it to something that sounds legit, e.g. Dexalog 12 - get first hand reports, complete with frequency of clusters before receiving the shot, and time period of pain-freeness - keep a complete list of everyone who has received the shot, and how it affected them and if they are chronic or episodic - If episodic, when in their cycle did they get the shot? - a complete list of the side affects everyone experienced, and for how long. Did they eventually recover from these (e.g. did the hair grow back) - get verification from another doctor and a separate set of patients or carry out a double-blind study I'm sorry to harp on about the name, but to someone who lives in England, where the entire world does not revolve around Jesus, it is REALLY off putting. What if Doc Mike worked in the Middle East, and called it the Muhammad Shot, do you think it would go down well in America? "The great Prophet Muhammad spoke to me in a dream and told me that combining these 3 drugs would cure cluster headaches." Because, you know, that doesn't make this Doc Mike sound like a quack AT ALL. MG

I took Indomethacin for a few months when I was getting rebound headaches from Anadin and needed an alternative pain killer. It did nothing for my cluster headaches, but would stop a headache. Be aware, it will mess up your stomach, so eat something before taking it. You will feel really rough if you take it on an empty stomach. You are now entering what I think of as the 'experimental' stage in your diagnosis. Your neurologist will likely keep trying you on lots of different things over the course of this year, Indomethacin, Amitriptyline, Topiramate (aka Topomax), and others. I forget the long list of stuff I tried before I threw it all away and turned to shrooms and seeds. Not trying to put you off your neurologist, this is just standard procedure. It's just non of it worked for me or the side affects were to much. MG