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ClusterBusters

MoxieGirl

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Everything posted by MoxieGirl

  1. MoxieGirl

    Do you know they're coming?

    Some people, I think, call these sensations 'shadows'. I think a lot of people associate them with pain, like a normal headache. Mine tend to just feel like a dark, smoky figure hanging out in my mind, waiting to attack. A sense of dread and foreboding. Mox
  2. MoxieGirl

    Looking for advice

    Hi smithrp3, Welcome to the forum, sorry you have to be here. Cluster headaches are normally associated with the Hypothalamus part of the brain, as the source, and are linked to the Trigeminal Nerve, which goes up behind the eye, which is why that's the location of most attacks. Think brain-freeze headache on steroids. But, I've had clusters at other parts of the head - temple & forehead mostly, but they are always one sided. But as yours are linked to an injury, that's slightly different. Also, eye watering and runny nose on the side of the head with the cluster is common. Can you describe the pain in more detail? My clusters are like a flaming red poker being shoved into my eye, or an ice cold nail, with someone trying to dig my eye out with it. In regards to the level of pain, I usually describe them as a muscle cramp, like you'd get in your calf. But double the level of pain, and double it again, then shrink it down and put it in your eyeball, and you get the idea. Clusters, like muscle cramps, can come on without warning and consume your thoughts and energy until it leaves. Also, a lot of people suffer with post traumatic stress attack afterwards, which can last 20-30 minutes or more. Clusters also tend to happen at the same time of day, same day of week for a lot of people. Alcohol and/or relaxation is a trigger for most people. Does any of that correlate with your headaches? Mox
  3. MoxieGirl

    Just a question

    Same as FunTimes. Relaxation is a fairly common trigger. I try to always keep busy, even if it's just reading or playing on my iPad or something. Keep focused, keep a to-do list. Take breaks sure, but don't totally relax or think 'everything is done now, I can relax'. Mox
  4. MoxieGirl

    Cluster Headache Poem

    Thanks, glad you liked it.
  5. MoxieGirl

    Cluster Headache Poem

    No Escape Today is like any other, Yesterday, today & tomorrow, all blur together. Day in and day out, everyday the same, I wish I could escape this game. The Beast visits most when least expected, My face drains of colour, and I feel quite infected. Into one eyeball, always just the one, the Beast comes, Blinding and piercing like I’ve been poked hard, with a thumb. My eye seems to freeze as if turned to ice, And the pressure builds as if placed in a vice. My nose starts to run and my eye begins to tear, As my body is gripped with fear. Red hot nails, they pierce and twist in my eye, The burning is such that I wish to die. Sharp blades cut and rip through my skull, As I pace the room and bang my head on the wall. I can feel my cranium crack, As all my world turns to black. For one hour or maybe two, How long it really lasts, I dare not tell you. For all that time, I pace and I walk, Sat on my bed, back and forth I rock. I suck on oxygen and drink caffeine, I can be quite snappy and downright mean. But eventually the nails are removed, as are the blades, And the pain within, all but fades. I am drained, I am spent, My energy is at zero percent. I need water, I need food, But instead, I lay here unable to move. I take one deep breath, and maybe two, Before the next symptoms ensue. Then the crying truly begins, As my body shakes from my bones to my skin. I am racked with hot convulsions in wave upon wave, To this terror I am now but a slave. Eventually, even this fades to a whimper, As my body begins to shiver. Wrapped in a blanket I raise myself up, Sloshing some water into a cup. Today was like any other, Yesterday, today & tomorrow, they all blur together. Day in and day out, everyday the same, Oh, how I wish I could escape this pain.
  6. MoxieGirl

    Just joined.. long time follower

    Hi David, Welcome, and sorry you have to be here. I rarely get clusters when I sleep, 95% or so happen during the day, even when they were really bad. My trigger was more about relaxing. When I got home from work, or even during the drive home, or often when I sat down and just put a film on to chill out, especially on weekends. That's when I would get hit, and it's fairly well documented that a drop in stress will trigger (or allow) an attack. I always worried about getting an attack at work, in the office or while teaching a class (used to be a software trainer). But I think that slightly heightened stress of worrying about it, kept the beast at bay until I got home and de-stressed, then BAM! So maybe this is what is happening with your mourning gym routine. You go to a public place and are on a slightly heightened state of alert as you don't want an attack while lifting weights, which keeps it away while lifting weights. But once you get home, have a shower and mentally finish that morning task, the beast comes. I've never found cannabis helps clusters, but it does help me sleep and 99% of the time shuts down my insomnia. For me, lack of sleep is a headache/migraine trigger, so having spliff before bed reduces my overall headache count. If it helps you sleep better, I'd say go for it, even if it doesn't directly work on reducing clusters. An attack, any time of day or night, takes a lot out of a person. Getting good sleep during a cycle is important. Mox
  7. When my clusters first started, I would normally get them on a Tuesday evening between 7pm and 7:30pm. Sometimes at 7pm, then another at 7:30pm. Once 7:40pm rolled around, I could actually feel myself relax as I knew I wasn't going to get one that night. I'd also get hit sometimes on a Wednesday or Thursday evening too, and the weekends of course. But Tuesday was like clockwork. It's actually a defining factor of clusters. They are linked with your hypothalamus, which controls your body clock. Mox
  8. I wish I were able to attend, I'd offer to read my poem. If someone else would like to read it, I'd be happy for that to happen. Mox
  9. Thanks devonrex, that's very helpful. Love first hand reports. Everything I've read about Botox says they only work for people who have migraines with auras, and I don't have auras with my migraines. And I tried to explain this to the doctor, plus, have you seen people who have had a lot of botox? They look like aliens. LOL I'm going to have some Lucy this week, and I think I have enough for one more dose after that. Then, fingers crossed, should have some shrooms in the ground and will be working through those for a few months. I bet I'll get better results without some doctor putting drugs in my veins and turning off nerves. If my remedies don't work, then I'll talk to the docs again. x Mox
  10. Hi gang, Just got back from seeing a "headache specialist" at my local neurology department. Her thick accent and my bad hearing probably didn't aid the appointment, but she could have really been a better listener. I'm going to rapid fire questions at you and only give you time for a yes or no answer, with no chance to explain, because we are on a tight 10 minute schedule and I don't care that you've had migraines all your life, cluster headaches for 12 years and once had a headache last 7 months - I have other patients to give 10 minutes too, so chop chop!!! Well, that's how it felt anyway. Of course, I've not seen a doctor at THIS hospital before, so was smart enough to bring in all the letters I had from my previous neurologists, 'cause I knew she wouldn't have a clue about my history. The main option she gave me was for a Greater Occipital Nerve Block, or Botox. Or, at least I'm pretty sure she was on about Botox, really couldn't understand her thick accent. And, of course, my best friend wasn't there with me to translate because she's dead now. So I was pretty screwed. Anyway. Has anyone had one of them there nerve blocks for clusters or migraines? Any thoughts on the procedure? I'm not keen on turning off nerves. Something tells me they are there for a reason, and I'd really like to solve the problem of migraines instead of just stopping my ability to feel them. I hate doctors. Apart from 1 or 2, ok, 3. But all other doctors are morons. I didn't even get a chance to ask the questions I wanted to ask, but I did get a strong vibe that this woman was not going to prescribe me cannabis, even though I know it helps. Oh, she did give me a single sheet of paper on which she wants me to keep a headache diary on. This is despite the fact that I took in 9 SHEETS of paper that I printed from the headache database I have been meticulously keeping for 9-1/2 years! These were graphs and summaries of every headache, migraine and cluster headache I've had since 2010. I can also print out a list of every triptan, pain killer and preventative I've taken. But, let's just ignore all that and fill in this stupid sheet of paper. Dumb ass. *Sigh* Mox
  11. MoxieGirl

    Simple Technique to Abort Headaches Right at Onset!

    Here is my last comment on this thread, and the subject of thread titles. Probably. When I was considering buying an Audi TT, I joined a local TT forum that had regular meet-ups and such, to talk to others and get their perspective on the car. At some point I started a thread with an enticing title. I don't remember the words I used exactly, but it was designed to get people to open the thread. It wasn't misleading, but was very much an OH MY GOSH type phrase. I got a lot of backlash from the community because a few months before I joined, one of their well known members had died and my title brought back memories of the thread used to announce that person's death. It upset a lot of people, and I promptly changed the title and dialled it down. I learned a couple things from that. One, a forum isn't a newspaper and we don't need to entice readership with over the top post titles like newspapers use to get people to buy the paper. Two, you never know what is going to upset someone else. Every title and post I write I suspect will piss someone off, but I try not to. Sometimes, when I've got a migraine or am just in one of those moods, I have less patience with people than is required, and that comes through in my writing. For that, I'm sorry but am also human. The comment about keeping on topic is a good one. If Freud wants to know more, I'm sure he can PM me. Mox
  12. MoxieGirl

    Simple Technique to Abort Headaches Right at Onset!

    Not a problem @manishkpratap.
  13. MoxieGirl

    Simple Technique to Abort Headaches Right at Onset!

    LOL Freud, Yes, it worked all the time. But, I can't usually do it when the clusters are at their peak, my body is shaking too much and I don't have fine manual motor control. When I'm coming down a little, say KIP 8. Though, to be fair, I used to top out at around KIP14 sometimes. There is almost no pain putting a needle into the skin, but when it comes out the other side, that's when you feel it. If getting a shot were a 1 or 2 on the pain scale, the needle coming out the other side would be a 5 or 6. Not KIP level pain, just a normal pain scale, but it's enough to distract the mind. Google 'Needle Play' and go to the Images tab if you want to see what it's all about. (NSFW) And that'll explain why I have a box of such needles, in a range of sizes and lengths. It's good fun. And when you have someone putting 10, 20, 30 or more needles into you, it's a serious endorphin rush. Which is of course why kinky people like me do it. I don't normally do it in my arm, although I have. It's easier if you can pinch the skin with one hand and insert the needle with the other. The leg or inner thigh works, but I usually go for breast material. Enough flesh to pinch, easy to get to on myself and I'm not going to catch the needles on anything as I might if they were in my arm. I've not done this for years, as an abortive or even for fun. But if the clusters got bad again, sure, I'd use it to cut the life of a cluster short. It pretty much stops a KIP8 cluster in its tracks and floods my mind with endorphins, which I don't get from clusters. It really changes my whole mental state during what would be the last 30 minutes or so of a cluster. And yes, I use a fresh, sterile needle every time. Never use the same needle twice, even on the same body. To be fair, I've done needle play for years, and it's in my catalogue of pain that I can control and manage. There is, at least in my life, a concept of good pain and bad pain, and I have a passionate love for good pain and a hatred of bad pain. I shall stress again: I'm not recommending this to others unless you know what you're doing and have someone with you the first few times. It can be very intense. Mox
  14. I REALLY wish I could attend this year. I used to live in Dallas, have friends there and miss it a bit. I'd love to come and read my cluster poem. Maybe one day. Can you please take lots of pictures of people and post them?? xx Mox
  15. MoxieGirl

    Simple Technique to Abort Headaches Right at Onset!

    As you've probably gathered, we're not keen on BS. Don't pull our strings by saying one thing just to get people to check out your posts. I've actually ignored this post until now specifically because it had the word 'cure' in it. What you're describing is an abortive, please describe things correctly in future posts, it really helps and makes you look less like a jerk. Sorry, I know that's strong and a bit below the belt. But we are dealing with serious issues here, and we don't need misleading posts. Some people already struggle with trying the concepts we discuss here, and we need to be honest about what we tell them, and not misleading. For the record, my nose runs when I have a bad cluster, and does nothing if it's a moderate one. I also have an abortive that I found worked 100% of the time. It never failed me. It involved pinching my skin to create a fold, and then pushing a hypodermic needle through the skin, and out the other side so the needle ends up laying flat against the skin. Would normally only take 3 or 4 needs for a complete abort, although you can put a 5th one just for fun, if you want. The way this works is that the brain can only process one source of pain at a time. So by introducing another intense pain elsewhere, it leaves the cluster to go investigate that new pain. I don't recommend this to people who don't know what they're doing and aren't a bit weird like me. Nor would I ever call it a cure. Mox
  16. MoxieGirl

    This helped me- hopefully will help others

    Moxie Girl's first rule of clusters: No two clusterheads suffer the same, and as soon as you figure yours out, it changes. I certainly agree that our diets have a lot to answer for. The absolute rubbish that goes into some of our foods, the manufacturers should be in jail! Everything is worth a try. Like you say, everyone is different and what works for one person won't for another. But I shy away from the word 'cure' when it comes to clusters. I know people with 4 and 5 year period of remissions, and even longer. Come back to us in 10 years, if you're still pain free all that time, we'll be impressed. Mox
  17. Thank you for the extensive background information. I think I'm going to press on with Lucy and her friend Magic Mike for awhile and see if I can stop them that way. At least then I have control over things and not dependent upon getting an appointment at some random time. But, it's good to know it's an option, and if my solutions don't soon make a clear improvement, then I will give it a try. I like your comment about having a cluster 'scare away' your migraine. I've had this happen a few times, and it is EXACTLY what it feels like. I remember I was once in the middle of a 3 day migraine when I got slammed with a massive cluster. After the cluster, I was utterly pain free for about 2 hours, but could sense the migraine peaking its nose around the corner, checking to see if the cluster had left yet. xx Mox
  18. Thanks my friend, Good info as always. That's part of my concern. How long will the nerve block last for me, and how often will I have to go back in for top up shots? It won't cost me anything, other than parking at the hospital. From what I've read, the drugs in the cocktail are pretty tame, but still, I'm quite sensitive to a lot of things. It doesn't give me any warm and fuzzies. I had some Lucy last week, and got a full week + a few days migraine free! Going to take some more soon. Hoping a few doses will knock them down. Also, may have good news about my lasted gardening attempt next week. Will keep you posted. xx Mox
  19. Yeah, but I wasn't even going in for cluster headaches! I have those under control. It's my migraines (22 a month) and headaches (18 a month) that I need help with. Hate doctors. Mox
  20. 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
  21. 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
  22. 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
  23. 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
  24. 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
  25. 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
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