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ClusterBusters

MoxieGirl

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MoxieGirl last won the day on July 23

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About MoxieGirl

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    Norfolk, England

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  1. MoxieGirl

    Do you know they're coming?

    Some people, I think, call these sensations 'shadows'. I think a lot of people associate them with pain, like a normal headache. Mine tend to just feel like a dark, smoky figure hanging out in my mind, waiting to attack. A sense of dread and foreboding. Mox
  2. MoxieGirl

    Looking for advice

    Hi smithrp3, Welcome to the forum, sorry you have to be here. Cluster headaches are normally associated with the Hypothalamus part of the brain, as the source, and are linked to the Trigeminal Nerve, which goes up behind the eye, which is why that's the location of most attacks. Think brain-freeze headache on steroids. But, I've had clusters at other parts of the head - temple & forehead mostly, but they are always one sided. But as yours are linked to an injury, that's slightly different. Also, eye watering and runny nose on the side of the head with the cluster is common. Can you describe the pain in more detail? My clusters are like a flaming red poker being shoved into my eye, or an ice cold nail, with someone trying to dig my eye out with it. In regards to the level of pain, I usually describe them as a muscle cramp, like you'd get in your calf. But double the level of pain, and double it again, then shrink it down and put it in your eyeball, and you get the idea. Clusters, like muscle cramps, can come on without warning and consume your thoughts and energy until it leaves. Also, a lot of people suffer with post traumatic stress attack afterwards, which can last 20-30 minutes or more. Clusters also tend to happen at the same time of day, same day of week for a lot of people. Alcohol and/or relaxation is a trigger for most people. Does any of that correlate with your headaches? Mox
  3. MoxieGirl

    Just a question

    Same as FunTimes. Relaxation is a fairly common trigger. I try to always keep busy, even if it's just reading or playing on my iPad or something. Keep focused, keep a to-do list. Take breaks sure, but don't totally relax or think 'everything is done now, I can relax'. Mox
  4. MoxieGirl

    Cluster Headache Poem

    Thanks, glad you liked it.
  5. MoxieGirl

    Just joined.. long time follower

    Hi David, Welcome, and sorry you have to be here. I rarely get clusters when I sleep, 95% or so happen during the day, even when they were really bad. My trigger was more about relaxing. When I got home from work, or even during the drive home, or often when I sat down and just put a film on to chill out, especially on weekends. That's when I would get hit, and it's fairly well documented that a drop in stress will trigger (or allow) an attack. I always worried about getting an attack at work, in the office or while teaching a class (used to be a software trainer). But I think that slightly heightened stress of worrying about it, kept the beast at bay until I got home and de-stressed, then BAM! So maybe this is what is happening with your mourning gym routine. You go to a public place and are on a slightly heightened state of alert as you don't want an attack while lifting weights, which keeps it away while lifting weights. But once you get home, have a shower and mentally finish that morning task, the beast comes. I've never found cannabis helps clusters, but it does help me sleep and 99% of the time shuts down my insomnia. For me, lack of sleep is a headache/migraine trigger, so having spliff before bed reduces my overall headache count. If it helps you sleep better, I'd say go for it, even if it doesn't directly work on reducing clusters. An attack, any time of day or night, takes a lot out of a person. Getting good sleep during a cycle is important. Mox
  6. When my clusters first started, I would normally get them on a Tuesday evening between 7pm and 7:30pm. Sometimes at 7pm, then another at 7:30pm. Once 7:40pm rolled around, I could actually feel myself relax as I knew I wasn't going to get one that night. I'd also get hit sometimes on a Wednesday or Thursday evening too, and the weekends of course. But Tuesday was like clockwork. It's actually a defining factor of clusters. They are linked with your hypothalamus, which controls your body clock. Mox
  7. I wish I were able to attend, I'd offer to read my poem. If someone else would like to read it, I'd be happy for that to happen. Mox
  8. Thanks devonrex, that's very helpful. Love first hand reports. Everything I've read about Botox says they only work for people who have migraines with auras, and I don't have auras with my migraines. And I tried to explain this to the doctor, plus, have you seen people who have had a lot of botox? They look like aliens. LOL I'm going to have some Lucy this week, and I think I have enough for one more dose after that. Then, fingers crossed, should have some shrooms in the ground and will be working through those for a few months. I bet I'll get better results without some doctor putting drugs in my veins and turning off nerves. If my remedies don't work, then I'll talk to the docs again. x Mox
  9. MoxieGirl

    Simple Technique to Abort Headaches Right at Onset!

    Here is my last comment on this thread, and the subject of thread titles. Probably. When I was considering buying an Audi TT, I joined a local TT forum that had regular meet-ups and such, to talk to others and get their perspective on the car. At some point I started a thread with an enticing title. I don't remember the words I used exactly, but it was designed to get people to open the thread. It wasn't misleading, but was very much an OH MY GOSH type phrase. I got a lot of backlash from the community because a few months before I joined, one of their well known members had died and my title brought back memories of the thread used to announce that person's death. It upset a lot of people, and I promptly changed the title and dialled it down. I learned a couple things from that. One, a forum isn't a newspaper and we don't need to entice readership with over the top post titles like newspapers use to get people to buy the paper. Two, you never know what is going to upset someone else. Every title and post I write I suspect will piss someone off, but I try not to. Sometimes, when I've got a migraine or am just in one of those moods, I have less patience with people than is required, and that comes through in my writing. For that, I'm sorry but am also human. The comment about keeping on topic is a good one. If Freud wants to know more, I'm sure he can PM me. Mox
  10. MoxieGirl

    Simple Technique to Abort Headaches Right at Onset!

    Not a problem @manishkpratap.
  11. MoxieGirl

    Simple Technique to Abort Headaches Right at Onset!

    LOL Freud, Yes, it worked all the time. But, I can't usually do it when the clusters are at their peak, my body is shaking too much and I don't have fine manual motor control. When I'm coming down a little, say KIP 8. Though, to be fair, I used to top out at around KIP14 sometimes. There is almost no pain putting a needle into the skin, but when it comes out the other side, that's when you feel it. If getting a shot were a 1 or 2 on the pain scale, the needle coming out the other side would be a 5 or 6. Not KIP level pain, just a normal pain scale, but it's enough to distract the mind. Google 'Needle Play' and go to the Images tab if you want to see what it's all about. (NSFW) And that'll explain why I have a box of such needles, in a range of sizes and lengths. It's good fun. And when you have someone putting 10, 20, 30 or more needles into you, it's a serious endorphin rush. Which is of course why kinky people like me do it. I don't normally do it in my arm, although I have. It's easier if you can pinch the skin with one hand and insert the needle with the other. The leg or inner thigh works, but I usually go for breast material. Enough flesh to pinch, easy to get to on myself and I'm not going to catch the needles on anything as I might if they were in my arm. I've not done this for years, as an abortive or even for fun. But if the clusters got bad again, sure, I'd use it to cut the life of a cluster short. It pretty much stops a KIP8 cluster in its tracks and floods my mind with endorphins, which I don't get from clusters. It really changes my whole mental state during what would be the last 30 minutes or so of a cluster. And yes, I use a fresh, sterile needle every time. Never use the same needle twice, even on the same body. To be fair, I've done needle play for years, and it's in my catalogue of pain that I can control and manage. There is, at least in my life, a concept of good pain and bad pain, and I have a passionate love for good pain and a hatred of bad pain. I shall stress again: I'm not recommending this to others unless you know what you're doing and have someone with you the first few times. It can be very intense. Mox
  12. I REALLY wish I could attend this year. I used to live in Dallas, have friends there and miss it a bit. I'd love to come and read my cluster poem. Maybe one day. Can you please take lots of pictures of people and post them?? xx Mox
  13. MoxieGirl

    Simple Technique to Abort Headaches Right at Onset!

    As you've probably gathered, we're not keen on BS. Don't pull our strings by saying one thing just to get people to check out your posts. I've actually ignored this post until now specifically because it had the word 'cure' in it. What you're describing is an abortive, please describe things correctly in future posts, it really helps and makes you look less like a jerk. Sorry, I know that's strong and a bit below the belt. But we are dealing with serious issues here, and we don't need misleading posts. Some people already struggle with trying the concepts we discuss here, and we need to be honest about what we tell them, and not misleading. For the record, my nose runs when I have a bad cluster, and does nothing if it's a moderate one. I also have an abortive that I found worked 100% of the time. It never failed me. It involved pinching my skin to create a fold, and then pushing a hypodermic needle through the skin, and out the other side so the needle ends up laying flat against the skin. Would normally only take 3 or 4 needs for a complete abort, although you can put a 5th one just for fun, if you want. The way this works is that the brain can only process one source of pain at a time. So by introducing another intense pain elsewhere, it leaves the cluster to go investigate that new pain. I don't recommend this to people who don't know what they're doing and aren't a bit weird like me. Nor would I ever call it a cure. Mox
  14. MoxieGirl

    This helped me- hopefully will help others

    Moxie Girl's first rule of clusters: No two clusterheads suffer the same, and as soon as you figure yours out, it changes. I certainly agree that our diets have a lot to answer for. The absolute rubbish that goes into some of our foods, the manufacturers should be in jail! Everything is worth a try. Like you say, everyone is different and what works for one person won't for another. But I shy away from the word 'cure' when it comes to clusters. I know people with 4 and 5 year period of remissions, and even longer. Come back to us in 10 years, if you're still pain free all that time, we'll be impressed. Mox
  15. Thank you for the extensive background information. I think I'm going to press on with Lucy and her friend Magic Mike for awhile and see if I can stop them that way. At least then I have control over things and not dependent upon getting an appointment at some random time. But, it's good to know it's an option, and if my solutions don't soon make a clear improvement, then I will give it a try. I like your comment about having a cluster 'scare away' your migraine. I've had this happen a few times, and it is EXACTLY what it feels like. I remember I was once in the middle of a 3 day migraine when I got slammed with a massive cluster. After the cluster, I was utterly pain free for about 2 hours, but could sense the migraine peaking its nose around the corner, checking to see if the cluster had left yet. xx Mox
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