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ClusterBusters

MoxieGirl

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MoxieGirl last won the day on June 5

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About MoxieGirl

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  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

    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
  3. 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
  4. 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
  5. 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
  6. 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
  7. 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
  8. 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.
  9. 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
  10. 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
  11. 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
  12. 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
  13. 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
  14. MoxieGirl

    Describing CH to non-believers

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

    Chronic Cluster Patient Pain Free for 11 days

    Apology accepted. Sorry if I came off strongly. Mox
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