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ClusterBusters

MoxieGirl

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MoxieGirl last won the day on July 23 2019

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About MoxieGirl

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    Norfolk, England

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  1. Daily Chronic Headaches, Chronic Migraines and Clusters are all Hell. Just different Hells. After awhile, pain is pain and it all makes you cry. Mox
  2. MoxieGirl

    Just to put it in perspective

    I've always thought Trigeminal Neuralgia was right next to clusters, surprised to see it so far down the list. Both attack the trigeminal nerve. Kidney stones were the worst pain I ever experienced, till clusters. I now rank it as a 5 on my 1-10 scale, my worst clusters have scored a 14. Mox
  3. MoxieGirl

    Indomethacin is doing something

    I found that taking it with food helped A LOT. Taking it on an empty stomach, and I had similar results: dizzy and feeling nauseous. But, with food it was fine. Mox
  4. MoxieGirl

    RIP Marie...

    Heartbreaking.
  5. MoxieGirl

    Emgality

    Hate it when you find something that works, then your body adapts and it stops working. What are the side effects of Emgality? Mox
  6. MoxieGirl

    Emgality

    What is Emgality? I've never heard of it. If it works, awesome! Are we still living in the dark ages when people can't get O2 for clusters? *rolls eyes* Mox
  7. MoxieGirl

    What if there WAS a CURE?

    Every time I read the word 'parasite' in this thread, I think of the 1994 film The Puppet Masters. Awesome film, well worth the watch if you can find it. Here's the tag line from IMDB: The Earth is invaded by stingray-shaped alien "slugs" that ride on people's backs and control their minds. Ok, the parasites were larger and attached themselves to people's backs with a probe that stuck into their neck, so not quite the same. Mox
  8. MoxieGirl

    What if there WAS a CURE?

    I tend to think there is a cure. It's not going to be discovered soon, or easily. But one day someone will figure it out. Just not some random dude who blew his nose though. The fact that finding something in his nose cured him (assuming he is cured) makes me suspect he didn't have clusters to begin with, because I'm pretty sure there isn't a parasite in my nose. What frustrated me about this post, and the others claiming cures, is the bating and dancing around the subject. Either it works, or it doesn't. And if it does, just say and let people try it. Mox
  9. MoxieGirl

    Update

    I have missed you my friend, and so glad to see you are back, and with a plan. Peace and love my friend, may you have pain free days soon. xx Mox
  10. Hi Karen, and Spike, and Spike's friend The good news is, you're in the right place. There are solutions out there and ways to reduce this horrid condition, so don't lose hope. I went from 2-5 hits a day to virtually none because of what I learned on this forum and thanks to the wonderful people here. I always love it with friends, family and loved ones reach out to help. I often think it's almost harder on the people we love, as they can only stand by and watch. One of the things my best friend used to do, that really helped, was to bring me a couple glasses of cold water as my attacks came to an end. I would always be desperately thirsty but with little energy left to get a drink. During the attack, she was smart enough to just leave me alone in my room and let me get on with it. I didn't need an audience and she didn't need to watch. But she'd check in on me, and then bring me water and a blank when needed. I was on Topiramate for about 18 months, and my clusters went from a few times a week to 2-5 a day, every 2-3 days. I've spoken to others as well where Topiramate made their clusters worse, so I'm not a fan of it. But, that's just my personal experience. I used to worry about attacks at work too, but eventually figured out that my attacks were very low-stress driven. When my stress levels dropped is when I'd get attacked, and many people report the same. So in the evening when I sat down to watch a film, or on the weekends when I was chilling out or gaming, that's when I'd get hit. Going to work raised my stress just a little, just enough, to keep the bad attacks away. I'd get a few minor ones from time to time, but nothing bad. On the drive home, though, I'd sometimes get hit and would have to pull over. Just to give your partner a bit of hope. The day I signed up to this site was the day I also penciled in a date in my calendar to commit suicide. LITERALLY! I had my calendar open, and decided to give myself one year to find a solution or I'd exit planet Earth. As soon as I picked a date to do the deed, I remembered someone once told me about this group that used alternative meds to stop clusters. At the time I'd told myself I'd only go there as a last resort, so when I was planning my own death, I figured that meant I was ready. So I put my calendar down and created my profile. That on 30 Nov 2011, and I'm still here. The things you find on this forum ACTUALLY WORK. In 2011 I had 257 cluster attacks - and those were the full-blown, 1-3 hour attacks that made me cry like a baby. This year, so far, I've had 26. 26 attacks so mild and inconsequential I barely notice them. Each attack might last 1-5 minutes, with 2 or 3 a year lasting 15-30 minutes. But the pain is mild. It's enough that I'll stop what I'm doing, breath deeply and hold my forehead. Then it stops and I go back to what I was doing. Mox
  11. MoxieGirl

    Does anyone else experience this?

    My clusters can sometimes come in waves, although I wouldn't say they die down to almost nothing, but might fluctuate between 3 and 9 on the KIP scale. But, other times it can just be raw, unrelenting pain. Mox
  12. MoxieGirl

    Happy 10th Birthday to our forum!!

    Wow! That means the board was just 2 years and a month old when I joined. I thought it was much older than that. Just a sign of a good and active community. This board saved my life, and the people here are amazing. Happy Anniversary everyone. Mox
  13. MoxieGirl

    Attacks after Sex

    Hi, That sucks. It might be related to how clusters often strike when our stress levels drop and we move into a more relaxed state. I rarely get bad attacks at work, or out socialising, because (I think) I'm worried about getting an attack then and my stress levels are slightly higher than normal. But when I get home and relax, or sit down to watch a film or chill for the weekend, BAM! attacks come then. Some have said they dread holidays because as soon as they arrive at their hotel and relax, they get slammed. But, I also think hormones have a lot to answer for in cluster attacks, so may be hormone related. Or just a perk of being you. Hope the bust goes well. Mox
  14. MoxieGirl

    Thank you

    Hi, Alcohol isn't a trigger for everyone. Doesn't affect my clusters at all, and 9 or so shots of vodka will abort a migraine. So that's handy for when the pills don't work. This forum very much saved my life when my clusters were at their worst. I was literally putting a date in my calendar for when I was going to exit planet Earth. Then came here, created an account and it turned my life around. There be good people here. xx Mox
  15. MoxieGirl

    Thank you

    Hi Newbie13, Welcome to the forum, really sorry you have to be here. But there are some amazing and truly fantastic people here, as you're already learning, as well as bucket loads of hope and advice. Do you drink alcohol? For a lot of people it triggers a cluster attack (not everyone though). But, I do know some people who'll have a drink a week or so after they think their cycle is ended to test it. Also a good way to know if it's starting. I have chronic daily headaches, migraines and chronic clusters (although my clusters are pretty trivial lately). I recently found out I'm allergic to cats, so sent my cat to live with my son. My headaches and migraines had since dropped by 75%. I went from having 12 a week to 3. And yes, making it through the night and waking up without a migraine is strange, but refreshingly so. I always say, life is what happens between the pain. In regards to the pain level in a cluster vs migraine, I think that if a headache were the Moon, then the pain of a migraine would be the Earth and a Cluster the Sun. I mean, none of them are fun by any standard, but a cluster will always dwarf the others. Mox
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