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ClusterBusters

MoxieGirl

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Everything posted by MoxieGirl

  1. I think they are very close to each other in the level of pain. I've not had Trigeminal Neuralgia, but have spoken to people who have, and what they've gone through to make it stop. If I had to guess, and it might be biassed, I'd say TN maxes at a 9 and CH pings a 10. They are both associated with the trigeminal nerve, just in different places in the face. But, pain isn't the element that makes something horrible. At least with CH, they don't often last longer then 3 hours, TN can last for days, and can be triggered by a smile. There is clearly more than one Hell. Mox
  2. MoxieGirl

    Busting Music Playlists

    Hi, We haven't talked about music for some time, and I'm curious, for those of you that listen to music when you bust, what do you listen to? I like songs that tell a story and have a good beat, or set a particular mood. I've got about 20 songs in my busting play list, always looking for new ideas though. Here's a few I really enjoy when in that headspace. Spirit in the Sky (love the bass!) - Norman Greenbaum Killing me Softly - Fugees You Oughta Know (Alanis Morissette) - the bonus song Can't Get you out of my Head - Kylie Minogue Hotel California - Eagles Matty Groves - Airport Convention Glory Box - Portishead Leave Right Now - Will Young Islands - The xx Bad Moon Rising - Creedence Clearwater Revival Would love to know what you listen to. MG
  3. MoxieGirl

    How does the Beast return?

    Question for my Episodic friends. When the Beast returns after being away for awhile, how does it do it? Does it pounce on you without warning with a full-force cluster attack? Or does it give you some warning, build up over a few days, for example? I've had more clusters this month than normal, and they are getting longer and sharper, with more intense after affects. And, closer together. I've had 3 in the last few days when I normally have 1 a month, maybe two, but very spread out. It feels like the beast is roaming around the outskirts of my village, poking at the boundaries, preparing for a proper attack. Testing my defences. Is that normal? Should I be worried? Mox
  4. MoxieGirl

    WORRIED sick.

    Hi, Big hugs to both you and your wife. Sometimes, it is harder for the loved one than the clusterhead. It's tough to stand by, unable to help. The Beast likes to change things just when you get used to its schedule. Hang in there. D3 is good, well worth trying. Also, worth reading the numbered posts in the Clusterbuster Files section to learn about busting options. But that'll mean coming off topiramate. My experience with Topiramate is that it made them worse, and has a scary list of side affects. I was on it a year, and it took me to the edge of suicide. I'm not a fan of it. Busting and D3 are (in my opinion and experience) the best methods for stopping the beast. Mox
  5. MoxieGirl

    How powerful is the mind??

    Hi MJ, Sorry to hear about your wife and your friend. I do believe that talking or reading about clusters can trigger clusters. Other people on the forum have said the same. I know when I was getting a lot of clusters, spending time on the forums would trigger them. But, it's all very subjective. I've never used O2. Will do if they come back in force. Once your wife goes through all the more traditional methods, we'll still be here. Hope she finds something that works for her. Mox
  6. MoxieGirl

    How does the Beast return?

    Hi Siegfried, I've never known migraines or clusters to go away with age. Of course, everyone is unique, and I'm sure they will for some people, but I don't think it's as common as people claim. Migraines suck, and I hate how a cluster can leave a migraine or headache behind after an attack. Like, insult to injury. Hope the flu goes soon. Mox
  7. MoxieGirl

    How does the Beast return?

    I Zookah, My sleep pattern is a little erratic at the moment, but I'm generally getting enough hours. I used to have a very regular sleep pattern, but life has changed. If I have cannabis in stock, then my sleep pattern is pretty good and I can shut down the insomnia. If not, then it's whatever. Although alcohol isn't a trigger, I'd don't actually drink much. In fact, I've been shying away from alcohol for a month or two, just having the very occasional weak drink. I'm on the verge of cutting it out entirely for no other reason than I can and I want a break from it. Cutting down on a lot of things fattening, actually. So, it's not influencing things one way or the other. I'm not sure that they are coming back, things have settled back down since posting this. I may have just had a spurt of them or something. Mox
  8. MoxieGirl

    From 75 kilograms to 88

    Thanks Dana, But, I'm doing my best this year. Trying to workout when my energy and motivation levels are high, and not beat myself up when I don't. I'm eating better and even bought a bike last month. I'm determined to lose weight this year. Headaches be damned! Mox
  9. MoxieGirl

    Describing CH to non-believers

    Paul, That is a GENIUS idea. Do you mind sharing the links with us that you use? This is a pretty good description, although light on the pain element: OUCH Uk - What is a Cluster Headache Mox
  10. 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
  11. MoxieGirl

    How does the Beast return?

    My problem is I have daily chronic headaches and chronic migraines. I'm getting 25-35 headaches/migraines a month, and have been for a long time now. So that's not an indicator in my case, sadly.
  12. MoxieGirl

    How does the Beast return?

    Thanks for the info. My problem at the moment, is that I'm getting so many migraines, and having to take so many triptans, I can never get 3-5 days clear of a migraine in order to bust. I need to bust, need to stop these migraines and prevent the clusters from coming back. Alcohol isn't one of my triggers, so can't test them with that. My clusters, for the last year or so, last a matter of minutes. But, they are getting longer, 15-20 minutes. Which I know is short, but it's a sign they are changing. Not looking forward to them returning to 45 min+. Mox
  13. MoxieGirl

    From 75 kilograms to 88

    In 2006, I was nearly a gym addict. I was going 5-6 days a week doing 1-2 hours of cardio and light weight-workouts most times. I was losing weight at a comfortable rate and feeling good about myself. Dec 31, 2006 I got a headache that lasted 7 months and was punctuated with migraines (lasting 3-7 days) and cluster headaches. Exercising during or around clusters is fine, but exercise during a headache or migraines makes it worse. Much worse. So, in 2007 I started putting weight on. Over the years, I've tried returning to gyms and setting up a regular workout routine, but I have too many headaches and migraines, just as soon as I get into a routing, I get slammed with head pain. At present, I go to Kung Fu once or twice a week, but that's about it. It sucks big time. Mox
  14. Hello MJEdwards, My heart goes out to your and your wife. My first rule of clusters is; no two clusterheads are the same, and just as soon as you figure yours out, it changes. And I don't believe it is a bad thing planning for the worst. Plan for the worst, hope for the best. Sounds like you already have the key bases covered, and Batch is a wonderful man, very helpful. And yes, busting is awesome for anxiety as well. The nice thing is, you could prepare busting materials, as it can take 2-3 months, then put it in the fridge or freezer and keep it on hand if ever needed. I put mine in capsules, which makes it easy to store and take. Mox
  15. MoxieGirl

    Describing CH to non-believers

    Hi Paul, Welcome to the forum, sorry you have to be here. Looks like you're getting good advice from Freud. He's a good man, and a good friend, with lots of experience on these matters. I've been on CH forums since mine started in 2007, and every so often the conversation of the name 'cluster headaches' comes up, and I don't know of any sufferer who agrees the name is apt. You're right, they aren't on the same scale as a headache, not even in the same universe. And, not everyone (like Freud and myself) have them in clusters. I've been chronic since they started in 2007, although thankfully, shrooms have allowed me to bring them under control and they no longer disrupt my life. Personally, I call them 'cluster attacks', because that's what they are, and attack. I think one of the greatest powers of this forum, and others like it, is to let people know they aren't alone. The pain, fear and frustration you feel is felt by others, and we do get it. And, even more so, there is hope. There are things that work, even if they aren't doctor approved. It is possible to get on top of this beast and get your life back. Not always easy, but possible. Mox
  16. MoxieGirl

    Describing CH to non-believers

    Freud, OMG Dude! You have really put your body through its paces. xx Mox
  17. MoxieGirl

    Chronic Cluster Patient Pain Free for 11 days

    Apology accepted. Sorry if I came off strongly. Mox
  18. MoxieGirl

    Chronic Cluster Patient Pain Free for 11 days

    I'm not complaining about the post or the information it contains. I'm a strong supporter of trying anything and everything. But having multiple threads on the same topic is confusing for people and makes it difficult to get a clear message across, and actually makes it feel more like spam and a scam. If it's genuine, then one post is more than sufficient. I'm offended that you call me lame. I'm not lame, I'm just trying to get good, accurate information out there, and support others doing the same, to the people that need it. Multiple threads confuses the matter. Plus, posting the same post twice isn't 'more people reaching out', it's the same person spamming the forum. And if you were to look at the other post, you would see that I updated it with both a link to Dr Deborah Carver-Hodges YouTube video (which the OP doesn't do) as well as a link to the original study (again, not in the OP). I also sent Dr Carver-Hodges a long email (after tracking down her Credentials and confirming that she is a real doctor, which she is) this morning requesting more information about the Keto/MAD plan, and if she has any recommendations that I can share with the forum for those that want to try it. But you're not going to see that because there are 2 threads about the same topic, and people will get confused and won't be bothered to follow them both. Having been an active member of this forum for over 7 years, I have seen solutions for CH on just about every possible topic. When someone brand new comes onto the forum and in their very first post starts spouting-off they have found a solution, and it is worded in a way as the OP, with a reference to a video but not a real link or a link to the original data, my first response is a very suspicious one. This is why I spent OVER AN HOUR this morning researching this. This is why I found the video and emailed Dr Deb, and why I tracked down the original study. After doing that, I thought, 'there might be something here people will want to know about', and I posted my findings. But then the OP posted it again, turning it into spam, and again, my suspicions are standing on end. And being called lame has rather got my hackles up. I suggest we let people do their own research, and chime in with their own experiences, and perhaps a kind Mod will merge the threads (if they can do that) so that people aren't confused. If not, I will kindly repost my findings from this morning here, and they can delete the other thread. Might I suggest in the future, if you are new to the forum, make a nice introduction and get to know people a little bit, then explain about the wonderful solution that is working for you, and if others would like to try it, where they can go for more information. Lastly, I shall repeat my golden rule on clusters: No two clusterheads are the same, and just as soon as you figure your's out, it changes. Mox
  19. MoxieGirl

    “Cure”

    In the UK you can buy a product call 4Head, which is in a large lip-balm type tube and your rub it on your forehead if you have a headache. It has a strong smell, almost a Vix Vapour Rub odour type thing. Doesn't do anything for me, but you never want to lift your head very quickly so that it get wafted down into your eyes. That's no fun AT ALL. LOL Mox
  20. MoxieGirl

    “Cure”

    Ok, as we're on the topic... I've never made it a secret that I'm active in the BDSM lifestyle. In this world, we have a coupe of head spaces we call 'subspace' and Domspace'. If you're a submissive, and you are really lost and absorbed in a 'scene' (e.g. sexual type activity) then we say you've gone into 'subspace'. It is sort of like deep meditation and you become unaware of your surroundings. Still in control, just not so connected. If you're a Dom, you can also go into a similar sort of focused head space, but you are ultra aware of your surroundings and everything going on, especially with regard to the person you're playing with. Domspace is how I imagine the Force to be, if the Force were real. It's like you can almost feel what the sub is feeling, and are aware of everything around you at the same time. I have found on many occasions that Domspace will make the pain of a migraine or headache completely and utterly vanish, only for it to come back full-force once the scene is over and normal life resumes. When I had my 7-month long headache, it was the only time I was ever pain free between Jan and July 2007. Unfortunately, subspace never took away the pain, just made it more real. Mox
  21. MoxieGirl

    Chronic Cluster Patient Pain Free for 11 days

    But it's been posted already, in the Theory board. Doesn't need to be spammed. Mox
  22. MoxieGirl

    PROJECT FOR SCHOOL

    Hi grivkels, Huge massive hugs to you my friend for dealing with clusters while going through school. As if high school isn't tough enough already. I'm sure several people will be more than happy to join in with ideas and their experiences. The first 2 things you'll hear about are O2 and Vitamin D3 Regimen. High flow oxygen (O2) is every clusterhead's best friend. It can cut a 3 hour attack down to 10 minutes. You'll need your doctor to prescribe it, or get a tank from a friendly welder and make the modifications yourself. It is our first go-to option for aborting clusters. The Vitamin D3 Regimen is a good method for preventing clusters. Details of it can be found in our Clusterbuster Files section. It is essentially a list of vitamins and Omega 3, a few in fairly high doses. But has something like an 83% success rate for reducing or stopping clusters, is completely legal and (pretty) safe. Worth doing it with your doctor's consent, as there are some blood tests that are worth doing, but that isn't so essential. Hopefully Batch, the inventor of the D3 Regimen will jump in soon with his input. Not sure how many teenagers have tried it, but Batch will know. Energy drinks and coffee are also helpful for aborting or recovering after an attack. Caffeine is our friend. If you want more specific information, or have specific questions, feel free to ask. There are good people on this forum with a lot of knowledge. Oh, stress! Stress is a big trigger for clusterheads, or actually, the lack of it. Most of us find that a sudden drop in stress (or pressure, e.g. air pressure) can trigger a cluster attack. If you find you get hit more in the evenings and weekends rather than when you're at school, it is probably stress to blame. Your stress levels are higher at school, then drop in the evenings/weekends, and BAM! That's when the beast comes for you. Learning to manage and balance your stress levels, so they don't go to high or drop to low too suddenly is a big key (at least for me). Mox
  23. MoxieGirl

    Be a Zombie or a Clusterhead?

    Just watched the new episode of iZombie (awesome show if you haven't seen it). Season 5 just started, and in it, cluster headaches were mentioned. Essentially, zombies and humans are living together in the now quarantined city of Seattle. You can only get in or out of the city by applying for permission, and someone applied to be let in, and made into a zombie because they have clusters, and their only other option is to kill themselves. At least in TV world, being dead or undead are both better than being a clusterhead. Mox
  24. MoxieGirl

    Nebula from avengers

    That's a good example, for sure. I actually liked it when Hector Hammond's, (the bad guy in Green Lantern) head expanded and he was holding it and screaming in pain. I thought that was a pretty good analogy. But, Nebula plays it well too. Mox
  25. MoxieGirl

    “Cure”

    I've had masturbation trigger clusters and migraines before. Fap carefully. Mox
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