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ClusterBusters

MoxieGirl

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MoxieGirl last won the day on April 9

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About MoxieGirl

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  1. MoxieGirl

    Describing CH to non-believers

    J, Thanks for the real world descriptions of this pesky little thing called pain. There is an element about clusters that I find makes them unique, and separates them from ALL other forms of pain. Be it broken bone, nerve pain, kidney stone, whatever... all these pains come from outside the brain and travel to it. Even headaches and migraines are on the surface of the head sending the pain inwards. But when I experience a cluster, it feels like it is being generated at the very source, in the brain, in the pain centre. Now, obviously I haven't experienced every pain in the world, and this is (again) my perception of the pain. But it is what I think makes Clusters uniquely extreme. Mox
  2. MoxieGirl

    The Run

    I wrote this today while Busting my migraines. Part 2 may have to wait for the next bust, but I already have ideas for it. I'm finding it interesting what it is saying to people (have shared it with friends) and thought I would post it here. Mox the run, part 1 by moxiegirl it only takes a moment, and in a flash you decide the run is worth it. so you set your sights forward, never back, and start running feet pounding the pavement, you round the bend, your heart racing the path turns, climbs hills and goes over obstacles. but you don’t care you keep your eye on your goal. and run it’s a worthy goal after all. no one else can do it. so you keep running. the hill turns into a mountain, so upward you run the path cuts through forests and over rivers. still, you run. forsaking friends and family you run possessions, jobs, career you run all the harder your life savings, all you worked for is long gone still, you run, ever prouder all that you are, is the run. and still, you run. ever onward, ever upward. you run. the sun is hot now, you’re breaking through the clouds. still, you run. the edge of the cliff is before you, it’s getting closer still, onward you run. there is an arm, an out cropping of rock you see it and run it juts out beyond the cliff so on that…, you run the arm becomes a hand.., a finger… and just as it turns to dust, you jump. you reach out with all your might, stretching every fibre of your being to grasp….. nothing. nothing is there. just air. a wisp of smoke, a false hope and a tear left on the breeze by an eagle as you twist in mid-air to look behind, you notice the crowd families with children standing along the edge fathers wearing shorts and sandals with socks. all standing at the edge of the cliff watching you. some are even taking pictures with their phones beyond them is a car park, filled with cars and busses scooters and bikes are dotted about the edge a man is selling ice cream out of a van, and another selling burgers between the families and the cliff’s edge, a rope barrier keeps everyone safe as gravity begins to tug on the tattered fabric of your clothes and the realisation of your situation implodes in upon you, you find yourself wondering, ‘why am I just now noticing the barrier?’
  3. MoxieGirl

    Why can't not being in pain be a good thing?

    B, Hugs. Mox
  4. MoxieGirl

    Why can't not being in pain be a good thing?

    Big hugs Devonrex, I wonder if people in an abusive relationship have similar feelings. Ok, sure, maybe you're partner gets drunk and slaps you around twice a week, but maybe that becomes a security blanket, and leaving the relationship and that pattern is more scary than staying in it. I started to write out the following in my previous post, then decided not to. But think I will. I Dec 2016, my best friend and housemate, the person I cared more about in this world next to my children, received a suspected diagnosis of MND (ALS/Lou Gehrig's Disease). She went through a battery of tests, and the diagnosis was confirmed in Feb 2017. Between Feb 2017 and 19 Nov 2019, when she slipped into a coma and died with me holding her hand (a week after her 47th birthday), it seemed like there was a critical event happening in our lives every 2-3 weeks. Our landlord kicking us out, trips to the hospital, her mum getting diagnosed with terminal lung cancer, debts piling up, I gave up my career and shut down my company, returned my new car and bought a junker.... The list of things we went through in those 2 years is insane. We easily ticked off the 20 top most stressful events in life, and then some. Something would happen, or threaten us, and we'd look at each other and wonder how we would ever get through it. Then, 2 or 3 weeks later, something so much worse would happen that the previous event would seem trivial. After my friend died, things got worse for a time. I had just 3 weeks to return 2 rooms of medical equipment, sort through all her stuff (which her family did most of, thankfully), sort through and pack all my stuff and downsize from a 2-bed house to a 1-bed house. We had already downsized from a large 4-bed to a very small 2-bed, so I'd been selling and binning things for nearly a year by that point. I moved into a house with no flooring and required a serious repainting of the walls. The kitchen didn't have stove, still doesn't, and only partial cupboards. Then, Christmas hit like a freight train coming out of the fog. This sensation you've been experiencing, the feeling of impending doom, I've been living in it from Nov 2018 till just a few weeks ago. I was constantly waiting for debt collectors to knock on my door, or for my GP to phone and say I had cancer or for the police to show up at my door. My body was so geared up for a disaster every 2-3 weeks, I didn't know how to handle life without one. I didn't know what normal was. I was constantly on edge. When we are in an extreme situation for a long period of time, our bodies and minds adjust, and we start calling that normal. Coming down out of that is difficult. It then becomes a double-edged sword. You don't want the pain (returning to clusters), will do anything to get rid of the pain; but then freak when the pain is gone. I hope you are able to find a PF Normal. Or, perhaps, a less-pain normal. xx Mox
  5. MoxieGirl

    Why can't not being in pain be a good thing?

    In a way, it's like having the flu or food poisoning. You dread having to kneel at the toilet and empty the contents of your stomach, but at least once you've done it, you know it'll be over with and you'll feel better for a few hours. I've been chronic 12 years now. Wow! Shocks me it's been that long sometimes. When they were bad, they were really bad, similar to the OP. I would come online and hear people chat about their cycle starting over again, and I would wonder how could anyone survive having months off, then being slammed again. At least, as a chronic, I knew a cluster was NEVER far away. I didn't have to worry that I might forget I have them and attempt to live life again. I wouldn't slip into that false sense of security to be shocked when the beast returned. PTSD sucks big time. Hang in there. Mox
  6. MoxieGirl

    Cluster headaches & bucket lists?

    Life is what happens between headaches. Doesn't mean it stops, just has a scheduling conflict. My best friend & housemate was diagnosed with Motor Neurone Disease (MND/ALS/Lou Gehrig's disease) just over 2 years ago. We tried to do some of the things on her list, but her disease progressed very quickly, and she was already struggling with mobility before she was diagnosed. A year after diagnoses, and she was bed bound. She managed to see her daughter get married, and turned 47 before her final day come a week later last November. I'm now trying to pick up the pieces of my life, my lost career, my lack of income and loss of self after being a full-time carer for 2 years. My bucket list has new meaning to me. A new level of urgency and importance. I need to get my current spat of migraines under control, and see some of the projects I'm working on start producing an income, then watch out world. Here I come. Mox
  7. MoxieGirl

    Scuba Diving

    Interesting. When stress, i.e. pressure, decreases and I'm relaxing, that's when I get hit. Maybe it isn't just metaphorical pressure like stress, but physical pressure as well, like atmospheric pressure that can be a trigger. Mox
  8. MoxieGirl

    Describing CH to non-believers

    I agree, only in the BDSM world is your ability to take higher levels of pain a bragging right. The descriptions I write aren't meant to show how tough I am or how bad my clusters are, or even to scare people into believing they are worse than they are. Yes, everyone experiences pain differently, what one person finds excruciating, the next person will brush off with little thought. Do we need to convince people who don't have clusters how bad they are? Yes, I think we really, really do. Have I gone over the top with that, clearly some people think so. I had a job awhile back where my manager bragged to me how he had only ever had one headache his entire life. Not even a migraine, just one headache. And this was at a time where I was getting signed off work for up to 7 days with a single migraine. He just didn't get it. He didn't understand how it was a problem and why it was affecting my work. So much so, that the company paid for me to see a headache specialist and get a proper diagnosis. Once I had that, he backed off. But he still didn't get it. And that is one example of discrimination I received BEFORE I had clusters. I've often said, that if I could have a super power, it would be the ability to touch someone and give them a 5 minute cluster headache. Now, you might think that is harsh, but it is the only way people will understand it. Short of that super power, I put my pain into words. Here is a description of one of my worst ever clusters. There is no exaggeration in this, this is how it felt, and is taken from my diary written at the time. The part about where I was standing outside my body, looking down on me, is called Depersonalisation, and sometimes happens when someone is in an extreme situation. And lastly, I would say, if you don't like my descriptions, that's fine. Don't use them. But you can't say that isn't how I perceive clusters just because it isn't how you perceive clusters and think it's over the top. My clusters are not your clusters. Mox
  9. MoxieGirl

    Describing CH to non-believers

    I did a pain survey of members of this forum, and our sister forum, a few years ago. I asked people to score a number of things based on their 1-10 cluster headache pain scale. I then pulled in all the results and averaged them, and the results are listed below. But like BoF said, pain is subjective. A couple examples: Kidney Stones ranged from 5 to 9, with 7 being the average. Personally, I'd the kidney stones I once had at a 5 compared to a cluster attack. Broken bone ranged from 1 to 9, with 5 being the average.
  10. MoxieGirl

    Describing CH to non-believers

    Hi John, Yes, I do agree, it is a more extreme example. And yes, you're probably right about how one's body would react to such an amputation. Sort of. There is a museum here in London where they demonstrate how legs were amputated in the early 1800s, and it's really fascinating. And no, they didn't use pain killers, and the amputation itself didn't actually kill a lot of people. You are more likely to die from the post-surgery infection you got because the surgeons didn't was their hands or instruments. But, what I like about this analogy, is the utter terror it implies. You never know when 'the men' are going to turn up, and when they do, it's going to be extremely painful.
  11. MoxieGirl

    Describing CH to non-believers

    Yeah. I used to call anyone that less than 10 migraines a year an amateur.
  12. MoxieGirl

    Cluster Headache Poem

    Probably not this year. I'd love to come to one though. But probably won't make it back to the States for awhile. Sadly Mox
  13. MoxieGirl

    Describing CH to non-believers

    I've come across a few posts recently where people have said that those around them don't believe, or understand, the level of pain created by a cluster attack. That they think it's just a migraine. I thought I'd start a post on how to adequately describe the pain of a cluster attack. Feel free to jump in with your own examples. Also, I've made it a habit to call them 'cluster attacks', not 'cluster headaches'. I personally feel the word headache undermines the severity of what we go through. In my mind (and in my descriptions below) I view them as an attack. No one gets PTSD from a headache, but you can get PTSD from an attack, and that's what these things are. At least, that's how I see them. Here's my favourite one that I've used that seems to get the point across. Here's another one I like, slightly more graphic. And a third description. I could go on, but I'm probably grossing you out now. The first one is a really good one though. Mox
  14. I wish he'd be more public about it, would be nice to have someone in the public eye promote clusters. Frank Capra (It's a Wonderful Life director) had them, and wrote about them. Mox
  15. MoxieGirl

    Cluster Headache Poem

    Devonrex, A good descriptor of cluster pain that I've used before, that you just reminded me of... Think back to the last time you had a really bad muscle cramp, which most people will have gotten in their calf muscle. Remember how the pain came on suddenly, how it crippled you and how it drew in 100% of the focus of your mind. All you could think about was the pain in your leg and how to stop it. Now, double that level of pain. Then, double it again. Then, relocate it to your eye and have it run at that level for 3 hours. Mox
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