Jump to content
ClusterBusters

MoxieGirl

Advanced Members
  • Content count

    1,704
  • Joined

  • Last visited

  • Days Won

    40

Reputation Activity

  1. Like
    MoxieGirl got a reaction from Rod H in Ever wonder what Cluster sufferer are great full for?   
    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. Like
    MoxieGirl got a reaction from kat_92 in 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
  3. Like
    MoxieGirl got a reaction from jon019 in 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
  4. Haha
    MoxieGirl reacted to dmlonghorn in What if there WAS a CURE?   
    Forward this post to 10 of your friends or the "cure" will disappear forever.
     
  5. Thanks
    MoxieGirl got a reaction from alikhan in 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
  6. Like
    MoxieGirl got a reaction from Newbie13 in 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
  7. Like
    MoxieGirl got a reaction from CHristopher in 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.
     
     
  8. Like
    MoxieGirl reacted to Brain on fire in Humanitarian   
    https://m.facebook.com/photo.php?fbid=425636697647346&id=424897101054639&set=a.425636707647345&source=54&refid=13&ref=page_internal&__tn__=%2B%3D
  9. Like
    MoxieGirl got a reaction from Jeler in Newbie here from Iowa   
    Wow! More expensive than I thought they would be, but that's just me being naive and not thinking it through. Of course they are going to cost that much. That photo did make a lot of sense of the different sizes though. Thanks.
  10. Thanks
    MoxieGirl got a reaction from Jeler in 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
  11. Like
    MoxieGirl reacted to Jeler in Definitely a Wine to avoid!   
    After reading of the Beer to avoid I found this in our wine cellar!
    Here's to a pain free evening to all!
    Jeff

  12. Like
    MoxieGirl got a reaction from Rod H in 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
  13. Like
    MoxieGirl got a reaction from Rod H in 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
  14. Like
    MoxieGirl got a reaction from SHG in 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
  15. Like
    MoxieGirl got a reaction from CHfather in Newbie here from Iowa   
    Oh! Good to know CHF. You can tell how long it's been since I've checked out the files section. hehe
    Jeff - you may find some knee-jerk negatively to doctors in general on this forum. If not from others, certainly from me. I can count on 2 fingers how many doctors have impressed me and earned my trust in relation to headaches. I drove home in tears on Thursday after seeing a 'headache specialist' who failed to listen to what I was saying or respected the fact that I know my body, and my headaches, far better than she ever will. 
    If your doctor is good, that's awesome, and rare. Don't let her go if you get on with her well and what she prescribes works. If you follow the typical path, you will get prescribed one thing after another as each one stops working or the side affects become worse than the clusters. This process might take months, might take years. And I'm not saying it isn't worth doing, some people get considerable success from what doctors prescribe. So you have to be willing to try it. 
    I played that game for 5 years until I literally had my calendar in my hand (well, on my computer screen) and I was picking a date on which to exit planet Earth. Then I remember someone once told me about this forum, and I'd bookmarked at as 'my last resort'. I decided to give myself 1 more year to find a solution to the 5 clusters I was having a day, and spent the next few weeks reading the above mentioned files and asking questions. By the time I had weened myself off Topiramate, I had my own solutions in hand and was ready to try them. 
    That was nearly 8 years ago. I now get about 3 cluster attacks a month, each one lasts 1-5 minutes and barely makes me pause from whatever it is I'm doing. The pain scale is usually a 1 or a 2. A few times a year I'll get a KIP 6 or 7 that'll last 30 minutes or so.
    There are answers out there, and solutions that work. Your mission is to find what works for you.
    Mox
  16. Like
    MoxieGirl got a reaction from CHfather in Newbie here from Iowa   
    Oh! Good to know CHF. You can tell how long it's been since I've checked out the files section. hehe
    Jeff - you may find some knee-jerk negatively to doctors in general on this forum. If not from others, certainly from me. I can count on 2 fingers how many doctors have impressed me and earned my trust in relation to headaches. I drove home in tears on Thursday after seeing a 'headache specialist' who failed to listen to what I was saying or respected the fact that I know my body, and my headaches, far better than she ever will. 
    If your doctor is good, that's awesome, and rare. Don't let her go if you get on with her well and what she prescribes works. If you follow the typical path, you will get prescribed one thing after another as each one stops working or the side affects become worse than the clusters. This process might take months, might take years. And I'm not saying it isn't worth doing, some people get considerable success from what doctors prescribe. So you have to be willing to try it. 
    I played that game for 5 years until I literally had my calendar in my hand (well, on my computer screen) and I was picking a date on which to exit planet Earth. Then I remember someone once told me about this forum, and I'd bookmarked at as 'my last resort'. I decided to give myself 1 more year to find a solution to the 5 clusters I was having a day, and spent the next few weeks reading the above mentioned files and asking questions. By the time I had weened myself off Topiramate, I had my own solutions in hand and was ready to try them. 
    That was nearly 8 years ago. I now get about 3 cluster attacks a month, each one lasts 1-5 minutes and barely makes me pause from whatever it is I'm doing. The pain scale is usually a 1 or a 2. A few times a year I'll get a KIP 6 or 7 that'll last 30 minutes or so.
    There are answers out there, and solutions that work. Your mission is to find what works for you.
    Mox
  17. Like
    MoxieGirl got a reaction from Freud in Do you think trigeminal neuralgia is worse the CH?   
    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
  18. Like
    MoxieGirl got a reaction from Freud in Do you think trigeminal neuralgia is worse the CH?   
    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
  19. Like
    MoxieGirl got a reaction from swiftlaw in Cluster rules   
    I'm a sailor too. Am so very addicted to it. 
  20. Like
    MoxieGirl got a reaction from Joyisnow77 in 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
  21. Thanks
    MoxieGirl got a reaction from Into Light in 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
  22. Like
    MoxieGirl got a reaction from CHfather in 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
  23. Like
    MoxieGirl got a reaction from Paula Lima in 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
  24. Like
    MoxieGirl got a reaction from Paula Lima in 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
  25. Like
    MoxieGirl got a reaction from LazyGrind in Chronic Cluster Patient Pain Free for 11 days   
    Apology accepted. Sorry if I came off strongly.
    Mox
×