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ClusterBusters

MoxieGirl

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MoxieGirl last won the day on August 26

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About MoxieGirl

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    Norfolk, England

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  1. Thanks Bob, much appreciated.
  2. Are there anymore details about the conference yet? Like, who is speaking when, time table, software that is going to be used.. (zoom??) I live in the UK and would love to attend. I've been to the website linked in the other posts, but many of the links to photos are broken (in Safari at least) and there aren't a lot of details (doesn't instil confidence). According to the page, the conference is starting at 5pm CST on Thursday and running non-stop till 10AM on Sunday. Surely not? (Yes, I just) Is the conference going to be recorded so those of us in other time zones around the world can at least see the speakers? Or am I missing a link or something? Thanks, Mox
  3. MoxieGirl

    Cluster Headache Poem

    Wanted to bump this to the top, if you don't mind.
  4. MoxieGirl

    My sister, I"m helpless

    PS. I often think these headaches are equally difficult on those that care about us. My best friend used to get so frustrated watching me in pain and unable to help. We eventually agreed that when the cluster started, she'd just leave me alone and get one with it. But, as it ended, I would always want 2-3 glasses of cold water and a blanket or bathrobe, and she'd always have these ready. Mox
  5. MoxieGirl

    My sister, I"m helpless

    HI Rios, I had clusters for about 4 years before I signed up here. Like your sister, I had tried everything doctors could give me. The last doctor med I was on made them worse (Topiramate, nasty stuff). At the time I came here, I was having 2-5 attacks every 2-3 days for nearly a year. I was actually, and quite literally, picking a date in my calendar to exit planet Earth. I'd decided to give myself 1 more year to find a solution, and that's when I remembered once being told about this site. I spent the following 6 weeks doing two things: 1, weened myself off Topiramate, and 2, read everything I could on this site. I think I read the key files in the Files section 4 or 5 times. I asked questions and made friends. It took some work, and wasn't an overnight fix. After my first bust the post traumatic stress attacks stopped. They just completely went away. The year prior to using these methods I had had 257 cluster attacks. The following year that dropped to 169. That's still a big number, but was much, much better. Last year, I had a whopping 37 attacks, all but three of those lasted less than five minutes. There is hope. There are solutions. You have to be your own doctor, researcher and test patient, but you can make these better. The Vitamin D3 regimen is a good place to start, along with a deep dive into the File section. We are here to help. Mox
  6. MoxieGirl

    Post Attack Symptoms

    This morning I had a cluster attack that lasted 15-20 minutes. And, it was maybe a KIP 4 or 5, nothing horrific. Bad enough that I curled up on the sofa for a bit. But, I felt totally drained for 2 hours afterwards and was in a brain fog for 4 hours. I couldn't concentrate or even look at a computer screen for more than a few minutes. Then, it just went away at the 4 hour mark, and I felt fine. Is there anything people do to help them get through these after affects? I find chocolate and caffeine helps a little. Here's my FaceBook post from this morning, might make 'ya chuckle. Random thought of the day. If you had a choice between going to Hell to be personally tortured by the Devil himself for 1,000 years, or having one really bad cluster headache... What would you say to the Devil after you spit in his face? I'd probably say something like, 'well, get on with it you weak arse loser who thinks you understand pain.' Yes, it's been that sort of a morning. Had a fifteen minute cluster headache at 9 this morning. 3 Hours later and my brain is still scrambled and I have no energy, my body temp is fucked and I'm not always confident which way is up. Mox
  7. MoxieGirl

    Post Attack Symptoms

    Hi gang, I'm curious what sort of things other people experience after the cluster headache has gone away. What fun little things linger after the raw pain is gone? Here's my list: Prior to busting, I would have 20-30 minutes PTSD experience where my whole body would shake and I'd cry uncontrollably after every attack. But that essentially went away after I started busting. My body temp normally swings from very cold to very hot, and I spend an hour or so adding and removing clothes or blankets to regulate my temperature. Extreme energy drain that lasts for hours, even from a short, 15 minute cluster. It tends to wipe me out for ages. Sometimes I get left with a headache or a migraine. Foggy brain and it's difficult to concentrate or focus on anything for hours. Holding a conversation can sometimes be difficult. My body's balance can sometimes be off kilter. For all of these things, it doesn't seem to matter if it's a 10 minute attack or 3 hours. As long as it reaches a KIP 4 or 5, then I get all or some of those. Mox
  8. MoxieGirl

    They’re back after 5 years

    Hi memememe (nice nick) Here's how I explain the pain to people, might help clarify things with your partner. Have him think back to when he had a muscle cramp in his calf muscle, most people have had at least one in their life. Then, ask him to double that amount of pain, and have him think about how when a muscle cramp starts, it starts out of the blue with no warning. And then, for the 30 seconds or a minute that it lasts, it is all you can think about. It is an all consuming pain, nothing else exists but the muscle cramp. Then, have him double the pain level again. Then, shrink it down to where the pain would fit in his palm, but maintain that same intensity. Now, ask him to imagine that in his eye and lasting for 3 hours. Mox
  9. MoxieGirl

    I think it's official

    Thanks everyone for your support. The clusters have seemed to ease off. I've only had one or two minor attacks since I started this thread. Very weird. My migraines are easing a bit too (knocks on wood). My daughter is down for a visit this week, so I've taken some time off work. That might be helping things. Hoping to bust soon, once she goes home and I have a week clear of triptans. Which may now be possible. Hoping to get 3-4 busts done in fairly quick succession. Hope everyone is enjoying the summer. Mox
  10. MoxieGirl

    I think it's official

    The Beast is back. Have had 5 clusters in a week now, and they have been proper strong ones too, not my normal KIP 2-3. These have been in the 5-6 range, and lasting much longer than normal, e.g. 15 minutes instead of 1-5 minutes, but still! Was woken up in the middle of the night this past week, and that's extremely rare for me, even when in the full depths of Hell. So, just tracking things for now. Trying to get clear enough away from triptans so I can power up a fresh busting routine. Think I have enough meds on hand for 6-7 busts, at least. Time to dig my farming gloves out. Stay safe everyone. Mox
  11. MoxieGirl

    Vitamin d regime - side effects?

    Hey Rudolph, I'm also in the UK. Welcome to the forum, sorry you have to be here. You can still get RC Seeds in the UK from eBay and sometimes Amazon. But it's getting harder to find. We need more law makers, or any law makers, with cluster headaches if you ask me. The only side affect I've ever had from the VitD Regimen is that it turns my urine to acid when I pee, which isn't at all fun. But my body can be quite sensitive to high doses of vitamin D. I'm just weird that way. I would be surprised that calcium would have that sort of an impact on an adult. How long has the knuckle been swollen for? Mox
  12. MoxieGirl

    50 yr old Newbie

    Hey Dr J, Welcome to the forum, so sorry you have to be here. Looks like you've already received some good advice. I'd also recommend you do as much research as you can, as mentioned above, most doctors (even specialist neurologists) are pretty clueless when it comes to CH. They just don't know what to do or their data is out of date. Ouchuk.org is a good sight for background information on the different types of primary headaches, and explains them well along with some standard treatment options. Some things work really well for some types of headaches (e.g. triptans for migraines and indomethacin for SUNCT). Triptans don't normally do anything for clusters, in my experience. Although I think some injectable forms of triptans can be beneficial. Caffeine is also helpful to abort an attack. Strong coffee or an energy drink will sometimes shorten attacks. Mox
  13. MoxieGirl

    Indomethacin and dizziness?

    Yep, nasty stuff Indomethacin. Effective, but not fun. Best advice, eat food before or with it, I found that always stopped the dizziness. And, feeling like you're seriously drunk is a good description. But, food makes a HUGE difference. Seriously huge difference. Can't stress it enough. Mox
  14. MoxieGirl

    BOF

    Hey wonderful. Sounds like you're having a tough time atm. I'm not coming to the forum much at the moment, other projects taking up my time. But you're in my thoughts a lot, and I hope you have a speedy recovery. Stay strong, and it's Ok to cry. xx Mox
  15. MoxieGirl

    A Cluster Headache Is

    A cluster headache is ... Like being hit in the eye by your own brain at random times of the day and night. Of course, your brain is wielding a baseball bat. With nails hammered through the business end, sticking out menacingly at acute angles. Nails, which have been heated in a fireplace for hours until they are glowing red. Sure, the first time the bat makes contact, you only wince in pain for a moment and try to brush it off. After fifteen minutes, it starts to take its toll on your pain threshold. Thirty minutes in, and you want to pluck what is left of your eyeball out and soak it in ice cold water, you know, just for a refreshing break. But of course you can't. There's not enough of your eye left to pluck out. The migraine you had has long fled in terror. An hour in, and your sanity is as shredded as your face feels. Two hours in, and you're a blubbering mess. You have real bruises now from hitting your own face and from that dent in the wall, in an effort to distract yourself from the real pain. Your eye is bloodshot, your nose has been running non stop and your face looks like it is melting. Eventually though, the beating stops. You're hungry and thirsty, the attack has taken a lot out of you, but you also have no energy or desire to move. If someone would only bring you some chocolate, a coffee and a tall glass of cold water. Quietly, a voice from the depths of your mind whispers, 'post-traumatic stress attack starting in 20 seconds... 19... 18.. 17.' You have enough time for a deep breath. Maybe two. Then absolute terror grabs your soul by the throat. It shakes the very core of who you are back and forth like a rag doll, and then throws it into the far corner of the room. Rocking back and forth, body shaking from your bones to your skin, you huddle in the corner in utter terror. Every muscle cries out in fear. Tears seem to escape through the very pores in your skin and flows from your eyes like a river. You don't know when the bat will return to continue its work, but you know it will. It always does. It always will. Note: Today, I only had a brief attack, measured in seconds. It was my third, and shortest cluster attack this week. But, it managed to bring back this flashback from when they were bad. Or, perhaps a flash-forward to when they'll be bad again, for surely they will. That is their nature. Not one word above is an exaggeration, if anything, it undersells the experience. Mox
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