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Everything posted by MoxieGirl

  1. 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
  2. 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
  3. 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
  4. 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
  5. 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
  6. 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.
  7. As a non-oxygen using Clusterhead, can someone explain the different tanks? E? M? etc. Thanks
  8. 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
  9. 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
  10. 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
  11. Ok, my apologises for the confusion and perhaps a bad translation. "uni" (small letters) is an abbreviation for a "university", in general. This may just be British slang and is used this way: "I went to uni" instead of "I went to university". If that's the case, if it's just a British thing, my bad. I have been writing for a British audience for so long now I sometimes forget my American. UNI, on the other hand, is short for University of Northern Iowa, which (as you correcntly state) is in Cedar Falls, which I did not attend. I went to university in Ames, if that works better for you. I do appreciate that people often write in shorthand on the forum, and not everyone adheres to high standards of punctuation and capitalisation, so I get the confusion. But, as a professional writer, I tend to write exactly what I mean and I proofread every post at least 2 or 3 times because my migraines often muddle up the words I type. I've proofread this post 5 times now, just to make sure I'm clear and not being offensive. Mox
  12. 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
  13. 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
  14. 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. Ah.. just to clarify. I studied (or at least started studying) Aerospace Engineering at ISU after high school. I quickly figured out I didn't really know how to study and had just skated through high school, and a university of 27,000 students was too much. So I transferred to a small university in Arkansas and studied aviation and drama (got my pilot's license there). After living in Dallas for awhile, then spending far too long in the Air Force, I moved to Cedar Rapids where I lived for a few years before moving back to the England. I have a lot of respect for the University of Iowa, but Ames is where you want to be for Engineering. Mox
  16. Jeff, The only thing I miss about Iowa is harvest season. What passes for watermelon here in the UK is about the size of a good cantaloupe we'd grow on the farm, and cantaloupe are about the size of grapefruit. And it's nearly impossible to buy corn on the cob (which they call sweet corn) that hasn't been shucked and wrapped in plastic. But, I don't miss the heat, or the extreme cold. It's due to get up to a sweltering 75ºF this week. I don't think it's been any hotter than that at all this year, maybe one day. Summers tend to be in the 60's, right where I like it. That said, I really don't like winters over here. Sum comes up about 9:30am, and sets by around 4pm. Which means you are ALWAYS driving in the dark. And for someone with light sensitive migraines, that's not fun. But, summers are fantastic in that it's only absolutely dark for about 4 or 5 hours at night. Mox
  17. 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
  18. Hi Jeff, A fellow Iowan! WooHoo! And welcome. Glad you found us, sorry you have to be here. I'm originally from Fairfield, went to Uni in Ames, and lived in Cedar Rapids for awhile. Spent many of my teenager years in Bloom County (the 100th Iowa county). That said, I live in the UK now. Long story. Feel free to ask any questions, the people here are awesome and saved my life once when things were really bad. It has a very active core group of people, and I pop in from time to time if my head isn't hurting too much. You won't better information, or better people, then on this forum. The ClusterBuster Files section has some good sources of information. The key files (the numbered ones) are probably out of order, but well worth a read if you are considering non-doctor-prescribed options. Mox
  19. 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
  20. 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
  21. 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
  22. 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
  23. 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
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