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ClusterBusters

MoxieGirl

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About MoxieGirl

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    Suffolk, England

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  1. MoxieGirl

    Cluster rules

    Making these up as I go along, just having a bit of fun. You're welcome to add some of your own. First rule of clusters: No two cluster sufferers have the exact same symptoms. Second rule of clusters: Just as soon as you figure yours out, it changes. Third rule of clusters: Try everything. What works for you may not work for others and vice versa. Forth rule of clusters: My triggers are not your triggers, and your triggers are not mine, but they might overlap. MG
  2. MoxieGirl

    yoga

    I have to agree with Siegfried on this one. I've tried yoga a handful of times, most ending in a migraine or a cluster headache shouting at me from within a migraine. The last time I went to such a class, it was billed as a Yoga/Tai Chi/Pilates mix. I love Tai Chi, and am Ok with Pilates. There was about 3 minutes of Tai Chi, 5 minutes of Pilates and then an hour of Yoga. When it was over, the migraine had already started building. By the time I got home, it maxed out and turned into a cluster attack. I spent the next hour in tears. Especially the Downward Dog. Yes, let's just put our head on the ground and stick our butts in the air so all the pressure and blood goes to our heads. Yeah, like that's an idea. Am pretty impressed I wrote all that without swearing, even once. I hate yoga. MG
  3. MoxieGirl

    Tinnitus

    As a migraine sufferer (as well as clusters) my nervous system is normally very sensitive. Much of what you mention can easily, and often, trigger a migraine. I read once that frequent headache/migraine sufferers tend to be more sensitive like that. MG
  4. MoxieGirl

    Migraine Cluster Ping Pong

    *swear word* Hell. 2 hour long migraine just after noon today. Pain killers eventually worked. Migraine 2 started building about a 1/2 hour ago, so thought I should take some pain killers before bed so I could sleep. Just took pills with juice, and SLAM! Cluster headache hits me in the right eye like I'd been poked with a hot spike. It didn't last long, a few minutes, but then reverberated from the right to left side of my head. Then just bounced around awhile. Migraine is now resting on the top of my head. And this wasn't even my worst day this year. So tired of this *swear word*. MG
  5. MoxieGirl

    Copying/pasting question

    When I just paste a link into the body of my text, I normally get an error message saying something has gone wrong. Here's the best way to do, quickly, easily and without fault. Go to the website and copy the link to the clipboard. Type a few words into the text box regarding the link, such as, 'Click here for more information', or something along those lines. The, highlight that text. Return to your forum post, and click on the chain link picture in the toolbox at the top of the text window. It is just between the strike through icon and the double quotes icon. This will open a box with two text fields. Past the link into the top text field. The text you have highlighted should appear on the bottom text field, this will be link people need to click on. You could, in theory, past the link into both boxes, but this doesn't look as professional or cool. Click the Insert button, job done. Give this a go, and see if it solves the problem. MG
  6. MoxieGirl

    Suna syndrome or cluster headaches?

    Hi Katrina, OuchUk.org has some fantastic background information on Clusters and the other types of headaches. The site actually used to be laid out a easier, not sure I like the new structure. In brief, when you are talking severe headaches or head pain, you are talking TACs - Trigeminal Autonomic Cephalgia. The Trigeminal nerve, as you may already know, runs throughout the face, and is associated with Trigeminal Neuralgia, Clusters, SUNCT, etc. SUNCT headaches are very similar to Clusters, but last 15-120 seconds on average and up to 30 an hour. The pain is very intense, and I wouldn't be surprised if you black out occasionally. SUNCT Headache Info Clusters, on the other hand, typically last 1-3 hours. It's important to get a good diagnosis. There are some good neurologists in London that SHOULD know the difference. I know how frustrating it is to have a little known condition and search to find someone else who understands. I hope we are able to help more, and it would be interesting to see if the remedies we apply here would also help you, even if your condition is slightly different than CH. One last thought. For just about every rule I've heard about that defines what a cluster headache is, I've also met at least one person for whom the rule doesn't apply. For most people, alcohol triggers a cluster, but not for everyone. For some, cannabis does, or sleep, or stress or lack of stress. When my clusters started, they were lasting from 45 minutes to 3 hours, as the textbook says they should. But since I've been 'busting', the methods we talk about in this forum, most of my clusters now last 30 seconds to a few minutes. A 30 minute cluster is a long one these days. So, my clusters act more like a SUNCT in that regard, but I only get about 2-3 a month. So, not like SUNCT. MoxieGirls first rule of cluster headaches: No two sufferers are the same, and just as soon as you figure yours out, it changes. MG
  7. MoxieGirl

    Noticed I am not shivering

    Hi Leftsider, Welcome to the forum, sorry you have to be here. Re. above comment; clearly you're dead, and this is The Bad Place. I mean, it's obvious. Or you're a vampire. Was it night time? Does the sun burn your skin? On, on a more series note, and to piggy back on Jon's comments. The hypothalamus does a whole list of things, and controls: body temp, thirst, appetite, weight control, emotions, sleep cycles, sex drive, ... and the list goes on. One of the big things it controls is the body clock, which is why they think clusters are so closely associated with it, or triggered by it, as they happen, well, like clockwork. Before I started busting, after every cluster attack I would have massive swings in body temp that would last 20-30 minutes. One moment I'd be freezing, and wrapping up in my bath robe and blankets, and a moment later, I'd be boiling. Back and forth it would go, over and over. So if you'd gone outside right after having an attack, your body might have cracked up your body temp as a result of the cluster, and thus didn't feel the cold, as such. And regarding why hot or cold sensations can sometime elevate attacks, the reason I think this is, is because the body can really only process one source of pain, or strong sensations, at a time. I used to inflict a different sort of pain on myself, a pain I could control, during an attack in order to distract my mind and decrease the pain of the cluster. Stepping into cold snow would certainly trick the brain! These are just my thoughts and experiences mind you, I'm not an expert. Here's an interesting experiment you can do regarding tricking the brain. This works best outside or in a large room, but that isn't critical. Sit quietly for a minute and pick a spot directly in front of you to look at, and no matter what, keep your eyes on that spot. Do not move them, or your head. Now, make yourself aware of an object as far to your right as you can perceive. It's great if something over there is moving to catch your attention, but just try and see as far right as you can WITHOUT moving your eyes - keep them looking forward on that spot. Now, do the same to the left. What can you see without moving your eyes? Next, do the same upward, then after a moment do it downward - all without moving your eyes. Now, the real trick, take in everything as far to your right, as far to your left, as far above you and below you as you can, all while your eyes are looking straight forward at that spot. Several things will happen. 1. You should be pretty amazed at how much you can actually perceive without having to look at it. This is a great technique to use when walking in a crowd, or even driving. This is how Black Belts in martial arts are able to fight several people at once. 2. You should find yourself relax as you focus on the things around you. 3. You may notice your emotions just switch off. And this is the point I am getting too. Your brain only has the bandwidth to process a certain amount of information at any given time. You can process sights, sounds, emotions, smells and touch (among other things). But if any one of those becomes overwhelmed, then something has to give, and be shut off. When you are looking at things with your eyes, you're not actually seeing everything that is there. There is billions of pixels of information in front of you, but we humans use selective vision, and we only see what is important to us. By doing this little trick, you bypass that selective vision and force your brain to process more visual information than normal. In order to make room for all this information, it has to shut something off, and it shuts off emotions. I gave my best friend's eulogy last month using this trick, and didn't cry through it at all. The same applies for pain. Your brain can only process one source of pain at a time. Introduce a new source, a new sensation, and they brain jumps to that. That said, clusters are so very intense, it's not easy as the pain tends to overwhelm everything. MG
  8. MoxieGirl

    Newbie

    Good point, well presented FunTimes. Oxygen is your best friend. And check out the Vitamen D3 regimen. There's plenty of information about it in the Clusterbuster Files section. You can start on that right away and it won't (shouldn't) interfere with anything else you're taking. MG
  9. MoxieGirl

    Newbie

    Hi Headsufferer, Welcome to the forum, really sorry you have to be here. In 2006/2007 I transitioned from male to female, and the hormones I took altered my hypothalamus, which, among other things, impacts headaches. I've always had periodic migraines, they run in the family. But in Jan 2007, I was diagnosed with daily chronic headaches, chronic migraines and cluster headaches, which turned chronic. From 31 Dec 2006 - July 2007, I had one constant non-stop headache + migraines and clusters. In 2011, I had 257 cluster attacks, 276 daily headaches and 42 migraines (each lasting 3-7 days). Not sure we can solve all your problems, but there is hope. Trust me, there is hope. By Nov 2011, I was getting 2-5 severe cluster attacks every 2-3 days. It was then that I sat down to put a date in my calendar to exit planet Earth, and then I remembered this forum, and logged on. I had given myself one year to find a solution. And hey, I'm still here. You can be too. I weened myself off of topiramate and started busting on 14 Dec 2011. I still have chronic cluster headaches, maybe 2 or 3 a month. They last 30 seconds to a few minutes on average, and although they can be sharp, I wouldn't call them painful. In 2012, after I started busting, I only had 3 migraines. I was seeing a neurologist at Addenbrooke's at the time, btw. He too had thrown his hands in the air as to what to do next. That was one of the reasons I started treating myself. As for restless leg syndrome, I stopped having caffeine after 5pm as my restless leg usually happened at night. No coffee, no soft drinks. I also found having a hot bath or spraying hot water on my legs when they were being restless helped. And, get exercise if you can - although I appreciate that is difficult. As for clusters and migraines, start reading the Clusterbuster Files section. Go through it with a fine toothed comb, especially the bit about playing well well others. You may find some of the meds you're currently on will prevent the methods we talk about here from working. And yes, they do work. Oh, and busting will also help with the depression. As far as epilepsy goes, cannabis I think is good for that. For some people, it makes their clusters worse, so tread carefully. Your daughter sounds absolutely wonderful. I hope we can help so she doesn't have to worry. MG
  10. Well, that is the million dollar question.
  11. MoxieGirl

    Anyone with clusters that wake us get sleep?

    When it comes to medical costs, I'm so very thankful I live in the UK. Granted, the current government is doing all it can to privatise the NHS, so we may eventually be in the same high-priced healthcare the US enjoys. But I hope not. Whenever I read someone's account of their clusters, or think about mine, I'm reminded of a quote from Avatar: "If there is a Hell, you might wanna go there for some R&R after a tour on Pandora." I think, if I were dropped into a lake of burning sulphur, I'd do the backstroke. Couldn't be worse than a cluster attack. MG
  12. MoxieGirl

    cluster period returned too soon

    MG's rule on clusters: No two cluster sufferers are the same, and just as soon as you figure your's out, it changes. Over the years I've seen lots of people mention a change in their cycle for no apparent reason. They tend to have a mind of their own. Have you had a change in circumstances in your life? Stress increase or decrease? Move to a higher or lower altitude? MG
  13. MoxieGirl

    Anyone with clusters that wake us get sleep?

    No matter how bad my clusters got, after reading Spiny's story for the first time, I was always grateful that I slept most nights. Ok, maybe I'd have migraines for a week at a time that would steal my rest, but I'd at least sleep. Spiny's story always breaks my heart. Lack of sleep is a major trigger for me. Clusters, never easy or straight forward. Hugs my friends MG
  14. MoxieGirl

    Anyone with clusters that wake us get sleep?

    I think only about 10% of my clusters happen when I'm asleep. Unfortunately, I only started tracking 'time of day' of my headaches a couple years ago, so I don't have a long history to refer back to and confirm, but it feels like only a small percentage happen at night. Most of mine are in the evenings and weekends. So, I may not be a lot of help.... but... that said.... One of my triggers is a drop in stress. When I used to get hit bad, I'd almost always get hit when I flopped down onto the sofa to watch a film, or when I was relaxing on the weekend. Once the stress of the work week was past, that's when I'd get hit. I also rarely got hit, and never with a really bad one, at work. I'd always go to work worried and stressed that I would get an attack while teaching a class (used to be a software trainer) or in a meeting or something. I think this elevated stress actually worked to keep the clusters at bay. Other people have commented that as soon as they arrived at their holiday destination, they'd get slammed. This idea that the beast likes low-stress times is a fairly common one. Which, has always made me wonder if this is why sleep is such a trigger for people, and maybe it could even be narrowed down to REM sleep. REM happens about every 45 minutes through the night, and many people say they get attacked about 45 minutes after going to sleep. Is that a coincidence, or is there a connection? I often have headaches, migraines and cluster permeate my dreams before waking me up. But, was I also in pain before being in REM sleep and just wasn't aware of it, or was REM the trigger? I don't know how to change any of this. Sleep is designed to be relaxing. But I do wonder if there's a connection. Or I could be totally way off and talking out of my arse. MG
  15. MoxieGirl

    Beast left for 4 days....but returned

    Moxie Girls first rule of Cluster Headaches: No two people's clusters are the same, and just as soon as you figure yours out, it changes. MG
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