MoxieGirl

How old is too old for clusters? Dead..? But possibly not even then. Wouldn't be surprised if the demon attacked even after death.

Many congratulations Brew! xx MG

Need a LIKE button. LOL

I agree. But I also think it needs to be the right kind of stress. Like CHS was saying, the wrong kind of stress is not good either. I think keeping busy, doing what you enjoy but always being focused is good. I also rarely get attacked if I'm at someone else's house. Driving, sure, quite often. Home alone, all the time. I have to be somewhere where I feel safe and secure it seems, to get hit with the really bad ones that is. Stress good, relaxation bad.

Hi, I've noticed that when I'm at work, I rarely have a bad cluster. But when I'm home in the evenings or weekends, I get hit quite often. I always assumed that clusters don't like stress, and when I'm relaxed, they hit. This has been supported by other people making similar comments and I think there is some value in it. But also, when I'm at work, I'm constantly drinking. I have either coffee or water in my hand most of the time. But at home, I don't drink as often. This has been driven home to me the last few times my best friend and I were out shopping. After walking around stores for a couple of hours, I found myself very thirsty and dehydrated. As a result I started getting a headache and had real problems thinking straight and no motivation. I often got a cluster attack a little later too. So, just wondering if anyone else has noticed something similar. MG

Thankfully, I don't have an addictive personality. Couldn't even get addicted to smoking regular cigarettes. I find it very easy to walk away from things with no burning desire to go back. So not worried about the addictive properties at all. Also, I know I wouldn't be a daily user. Only when needed. However, I have seen several friends who do smoke regularly loose some of their mental ability. You can watch it go over the years of very frequent use. I have one friend who has a bad back, and none of the doctor prescribed meds help much. But pot does alleviate the pain. But at a cost. Her memory is largely shot. Also, I had a brother who was a dealer many years ago. He did 2 years in jail once for it. I know first hand the risks and long term affects. I have NO desire to get hooked on anything, marijuana or shrooms. Am ultra careful with what I take, how much and how often. The best approach me thinks.

Hi, There is an idea I've heard about. Put a large glass jar in your kitchen with a small pad of paper next to it. Every time something good happens in your life, write it down and place it in the jar. At the end of the year, read all the notes and remind yourself of how good of a year it's been. I often say that life is what happens between cluster attacks. But there is more to it than that. Yes, I have a really bad, rare, painful condition that impacts my daily life. But yet, there are many things I am thankful for. I was talking to my best friend the other day who's mother had trigeminal neuralgia. She hated how that very painful infliction turned her mum into a bad person. Made her grumpy and angry ALL the time. It severely impacted their relationship in a very bad way. She told me how grateful she is that even though I have clusters, it hasn't turned me into an evil bitch. I still laugh and love life despite the pain. I'm grateful that my clusters aren't SO bad that I'm not able to work. In fact, I've been blessed with a good living. I'm thankful that I have some truly awesome friends. Friends that I'd take a bullet for, or give a kidney to, and I know they'd do the same for me. I'm grateful for my 2 wonderful children, and although I don't see them as often as I'd like, our relationships are getting better. I'm grateful I'm no longer trapped in the wrong body. OK, yes, it was probably the cause of my clusters, but having clusters isn't nearly as bad as having the wrong body. It was a fair trade. My list could go on, but I'd like to hear about the good things in your life. I don't know about you, but I find if I spend too much time reading about clusters, that in itself is a trigger for a cluster. So let's fill a thread with some very positive vibes. It's not a glass jar in the kitchen, but we can still come back to it and read the positives when times are tough. MG

WOW! Fantastic information, thanks. 85% of my clusters are short. We are talking 1-15 minutes. I sometimes get ones that last 20-30 minutes, and less often 30-60 minutes. So I don't find trying to take anything, even having oxygen around, as an abortive much point. The pain has usually subsided by the time I would apply it. Te same would be true for marijuana. Wouldn't be able to get it quickly enough most of the time. But, if it helped with the post-headaches, my daily chronic headaches or migraines, that would be cool. Shall explore more. MG

Hi gang, I remember reading a post of two saying how pot is normally bad for clusters. There was comments along the lines that it does the opposite thing to the blood vessels than we want it to (shrinks them when we want them expanded, or vice versa). I wanted to explain this to a friend, but explain it correctly. Can someone elaborate? I've also heard about one or two clusterheads who do find pot helps, would love to hear from you too. I'm a rare one in that alcohol doesn't trigger an attack, and it even aborts migraines (when all else fails). So I wouldn't be surprised to hear that pot is typically bad for clusters, but not for 100% of everyone. Cheers, MoxieGirl

Hi Donnie, My clusters started just over 6 years ago, and I've been chronic ever since. My first year was the worst. I had a 7 month long headache (no joke and no exaggeration), frequent BAD migraines, and at least 1 cluster a week, sometimes as many as 4-5 a week. I call 2007 my 'year of hell'. After that, things started to settle into a pattern, I'd have 2-3, occasionally 4 weeks cluster free. Then I'd get a small one, and they would build to a crescendo over about 2 weeks. Then another 2-3 week chance to breathe. The year before I started busting, it had gotten much worse again. 1-5 clusters every 2-3 days for an entire year. And I had exceeded the recommended dosage on the strongest stuff my neuro could give me. Everything had simply stopped working and I was putting a date in my calendar to exit planet Earth if I didn't find a solution before said date. And that's when I turned to busting. I've busted with seeds and mushrooms, and they have very simply saved my life (along with the amazing people on this board). I'm still technically chronic, but I can achieve cluster free gaps of up to 23 days and the clusters are much more mild. But the biggest, and most immediate, effect I discovered was the post traumatic stress attacks I used to get stopped. They just completely went away, along with about 80% of the anxiety I got about having an attack. Most of the time, about 90% of my attacks, just hit then go away. I may pause what I'm doing, I may go into my room and curl up on the bed for a really bad one. But then it stops, and I just get up and return to what I was doing. They aren't the devastating event they used to be that ruined my whole day and messed up my head for hours. Granted, the other day I did have 4 attacks, and the last one was the worst I've had in a very long time. I ended up with my head in the lap of my best friend crying in pain, and had a headache for a few hours after. The next morning, my eyeball still felt like someone had beat it up. But I have hope. This site and the methods explained here have given me hope. Sorry, have prattled on a bit. I've come to believe life is what we do between attacks. This demon in my head is part of me. Yes, I hope to one day put it to sleep and never have it wake up again, but I don't worry about that. I focus on today. Right now, this moment, I am pain free. And I am going to make the absolute most out of this moment that I can. When I get an attack, I do my best to brush it off and go back to living. Also, I'm a VERY busy person. I own my own business as an IT consultant, which keeps me quite busy. On top of that I have an active social life and lots of friends. My best friend and I are also in training to be massage therapists, and I'm elbow deep in studying the human body. Also, I'm a writer, and on the verge of publishing my first novel. If that wasn't enough, my 9 year old daughter has recently come back into my life after a 5 year gap of no visitation. I don't stop. People around me often comment on how I never stop. I'm always doing something. That's because I found doing something is also a preventative. Relaxing, chilling, doing nothing, is a trigger for me. My advice, find your triggers and avoid them. Hang in there MG

Fantastic! Am showing the first article to my doctor today.

Migraines. Getting hungry used to be a migraine trigger for me, but haven't noticed it with clusters.

Just one of the many reasons I moved out of America.

During 2010 my clusters followed a pretty distinct pattern. Don't think I could be classed at episodic at that point, but I knew after I had a really bad one, I'd have a 1-3 weeks cluster free until they started again. This is the closest I've ever been to episodic.

Well, I didn't bust the other week as planned. Time just got away from me. So by the time I bust Thursday or Friday night, it'll be 2 weeks. I plan on doubling my normal dose of 1.2 grams. Will also start on the D3 Regimen this weekend. MG

Those are called 'floaters', and are pretty normal. Can (in rare occasions) be a sign of problems, as with eye flashes, but also both can be quite normal.

I had an eye test this past week, and I talked it over with my optometrist, and she said it could either be migraine related or the jelly bit at the back of they eye pulling/contracting. if it happens in one eye, then it is most likely the jelly pulling, if both eyes, most likely migraine related. But, I haven't had migraines for a long time, which like you, makes me wonder if other Clusterheads get them.

Correct, I could have worded that better. People's abuse of alcohol and disregard for safety is a cause of many deaths. Yes? But, alcohol does fuel violence. I know perfectly wonderful, clam people who turn into short tempered aggressive people when they drink. It does frustrate me that such a culture is legal and encouraged when a life saving remedy like shrooms are illegal.

I see what you're saying Brew.... But.... Alcohol is responsible for 1,000s of deaths a year, especially when mixed with driving. Same could be said for other drugs, especially when mixed with driving. But, in countries where pot is legal, there is a lot less drunk fueled violence. I think it is pretty accepted that alcohol stirs many people into violence, where as pot is a very calming type buzz. No, I'm not an expert on he subject, just my eperiences? The thing is, society makes laws tat aren't always in he best interest of society or individuals. IMHO

Hey H, shame you are in South Africa, I need a good dentist.

Very well said Jessica. Couldn't agree more.

I often say that if I had a super power, it would be the ability to touch someone and have them experience my worst pain for 5 minutes. That would settle the argument. I like the term 'cluster attack', and I usually refer to them that way. Takes the lame word 'headache' out of the equation. I use a few methods to describe them to the uneducated. One, I will draw a short line on a piece of paper, say an inch long. I'll explain that this is a 1-10 scale for headaches, and the worst headache you ever had is a 10 on this scale. My worst headache lasted 7 months, to just put the scale in perspective. Next to this I draw a second line, about twice as long and starting at about the middle of the first line (so where 5 is on the first scale). This is my migraine scale, and again it goes from 1 to 10, but is much longer because the 10 of a migraine is MUCH MUCH worse than a 10 of the headache. Many people can relate to one or both of these scales, and I also explain that my bad migraines last 5-7 days. I then draw a third line. This line starts at about the 8 on the migraine scale, and goes to the edge of the paper, and longer if I can. This line is 10 times, 20 times longer than the migraine line. This is my cluster 1-10 scale. For most people, the light bulb starts to come on at this point. I point them to the Wiki page that says clusters are the worst pain known to man. I tell them that a cluster sufferer friend of mine once dislocated his knee, and didn't know it for 3 days because the pain was so minor compared to what a cluster is. I tell them that giving birth ranks about a 3 on the cluster scale, that having kidney stones is maybe a 5. Then I tell them my worst cluster attack ranks about a 14 or 15 on my cluster scale. That it felt like someone had shoved an ice cold steel bar into my eye socket, forcing my eye ball out of the way. And it felt like they were using this bar to pry the top of my skull off, and I could feel the bones cracking across my forehead. The pressure would increase and the crack would form, then the pressure would ease and the crack in the skull would heal, then the pressure would be applied again. Over and over this went for 30 minutes. Then it just stopped. I explain that it took me over 2 hours to gather myself up after this attack. Trying to get somoene to grasp what a cluster attack is like, is like trying to explain the colour red to someone who was born 100% blind and only perceives black. As the worst pain known to man, if you haven't experienced it, you have no hope of understanding it. So one has to break it down into descriptions they can understand, and then say it is MUCH worse than that, but you get the idea. If they still don't understand, hit them in the eye with a baseball bat. Then say it feels sort of like that, but 1000 times worse. Every day. 2-3 times a day. And at night. For the rest of my life. And if they STILL don't get it, stop being their friend. They aren't the sort of friend you need. IMHO MG

Ok guys, I'll try the D3 again. I really should you know, and yes, I do have a few of those daily-pill box things. So will sort it out this weekend. Hugs MG

I have tried the D3, and was talking to Batch?? about it quite a bit about 2 years ago. The problem was, I was also on a high dose of Topiramate at the time, and the combination of vitamin D3 and T turned my wee into fire. Well, felt like I was peeing a stream of fire anyway. When I came off the T, I was so glad to not be taking pills everyday I wasn't inclined to try it again. I travel A LOT, and is just one more thing to try and pack every week. Poor excuse I know, and am sure if I got organised it wouldn't be a problem. My other excuse is that I hate fish. Taking Omega 3 gave me fish flavoured burbs. Ick beyond words. That said, the short time I tried it, there was some indication of it working. I suppose, if I could reduce the number of pills taken so I don't have to pack another bag JUST for pills, and could find a solution to the fish-burps, it would be wotrth another go.

Well Ricardo, as it works out, I'm not having much of a choice but to take 3 weeks off. Timing just didn't work out this weekend that I was able to bust. My daughter is down next weekend, so can't bust then. So is going to be 2-1/2 to 3 weeks between busts, so will see if that helps. Thanks everyone for your input. Moxie