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Everything posted by MoxieGirl

  1. MoxieGirl

    No Predictability to the attack?

    MoxieGirl's golden rule: No two clusterheads are the same, and as soon as you figure your's out, it changes. Mox
  2. 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
  3. MoxieGirl

    Just to put it in perspective

    I've always thought Trigeminal Neuralgia was right next to clusters, surprised to see it so far down the list. Both attack the trigeminal nerve. Kidney stones were the worst pain I ever experienced, till clusters. I now rank it as a 5 on my 1-10 scale, my worst clusters have scored a 14. Mox
  4. MoxieGirl

    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
  5. MoxieGirl

    RIP Marie...

  6. MoxieGirl


    Hate it when you find something that works, then your body adapts and it stops working. What are the side effects of Emgality? Mox
  7. MoxieGirl


    What is Emgality? I've never heard of it. If it works, awesome! Are we still living in the dark ages when people can't get O2 for clusters? *rolls eyes* Mox
  8. MoxieGirl

    What if there WAS a CURE?

    Every time I read the word 'parasite' in this thread, I think of the 1994 film The Puppet Masters. Awesome film, well worth the watch if you can find it. Here's the tag line from IMDB: The Earth is invaded by stingray-shaped alien "slugs" that ride on people's backs and control their minds. Ok, the parasites were larger and attached themselves to people's backs with a probe that stuck into their neck, so not quite the same. Mox
  9. MoxieGirl

    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
  10. MoxieGirl


    I have missed you my friend, and so glad to see you are back, and with a plan. Peace and love my friend, may you have pain free days soon. xx Mox
  11. Hi Karen, and Spike, and Spike's friend The good news is, you're in the right place. There are solutions out there and ways to reduce this horrid condition, so don't lose hope. I went from 2-5 hits a day to virtually none because of what I learned on this forum and thanks to the wonderful people here. I always love it with friends, family and loved ones reach out to help. I often think it's almost harder on the people we love, as they can only stand by and watch. One of the things my best friend used to do, that really helped, was to bring me a couple glasses of cold water as my attacks came to an end. I would always be desperately thirsty but with little energy left to get a drink. During the attack, she was smart enough to just leave me alone in my room and let me get on with it. I didn't need an audience and she didn't need to watch. But she'd check in on me, and then bring me water and a blank when needed. I was on Topiramate for about 18 months, and my clusters went from a few times a week to 2-5 a day, every 2-3 days. I've spoken to others as well where Topiramate made their clusters worse, so I'm not a fan of it. But, that's just my personal experience. I used to worry about attacks at work too, but eventually figured out that my attacks were very low-stress driven. When my stress levels dropped is when I'd get attacked, and many people report the same. So in the evening when I sat down to watch a film, or on the weekends when I was chilling out or gaming, that's when I'd get hit. Going to work raised my stress just a little, just enough, to keep the bad attacks away. I'd get a few minor ones from time to time, but nothing bad. On the drive home, though, I'd sometimes get hit and would have to pull over. Just to give your partner a bit of hope. The day I signed up to this site was the day I also penciled in a date in my calendar to commit suicide. LITERALLY! I had my calendar open, and decided to give myself one year to find a solution or I'd exit planet Earth. As soon as I picked a date to do the deed, I remembered someone once told me about this group that used alternative meds to stop clusters. At the time I'd told myself I'd only go there as a last resort, so when I was planning my own death, I figured that meant I was ready. So I put my calendar down and created my profile. That on 30 Nov 2011, and I'm still here. The things you find on this forum ACTUALLY WORK. In 2011 I had 257 cluster attacks - and those were the full-blown, 1-3 hour attacks that made me cry like a baby. This year, so far, I've had 26. 26 attacks so mild and inconsequential I barely notice them. Each attack might last 1-5 minutes, with 2 or 3 a year lasting 15-30 minutes. But the pain is mild. It's enough that I'll stop what I'm doing, breath deeply and hold my forehead. Then it stops and I go back to what I was doing. Mox
  12. MoxieGirl

    Does anyone else experience this?

    My clusters can sometimes come in waves, although I wouldn't say they die down to almost nothing, but might fluctuate between 3 and 9 on the KIP scale. But, other times it can just be raw, unrelenting pain. Mox
  13. MoxieGirl

    Happy 10th Birthday to our forum!!

    Wow! That means the board was just 2 years and a month old when I joined. I thought it was much older than that. Just a sign of a good and active community. This board saved my life, and the people here are amazing. Happy Anniversary everyone. Mox
  14. MoxieGirl

    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
  15. MoxieGirl

    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
  16. MoxieGirl

    Thank you

    Hi Newbie13, Welcome to the forum, really sorry you have to be here. But there are some amazing and truly fantastic people here, as you're already learning, as well as bucket loads of hope and advice. Do you drink alcohol? For a lot of people it triggers a cluster attack (not everyone though). But, I do know some people who'll have a drink a week or so after they think their cycle is ended to test it. Also a good way to know if it's starting. I have chronic daily headaches, migraines and chronic clusters (although my clusters are pretty trivial lately). I recently found out I'm allergic to cats, so sent my cat to live with my son. My headaches and migraines had since dropped by 75%. I went from having 12 a week to 3. And yes, making it through the night and waking up without a migraine is strange, but refreshingly so. I always say, life is what happens between the pain. In regards to the pain level in a cluster vs migraine, I think that if a headache were the Moon, then the pain of a migraine would be the Earth and a Cluster the Sun. I mean, none of them are fun by any standard, but a cluster will always dwarf the others. Mox
  17. MoxieGirl

    Prayers work. I am praying for all of us.

    Writes rant about religion being like a penis. Deletes said post. Bites tongue. Whatever. Mox P.S. Please don't pray for me. No, I'm serious. Just don't.
  18. I'm a masochist in the BDSM lifestyle, and I tend to play pretty hard. Well, hard in respects to other people in the lifestyle, still pretty tame compared to a cluster attack. I think I've had a sadist top out at around 4 on my cluster pain scale. And that was pretty serious play. After, and during such play, the endorphins take us to a place we call 'subspace', which is similar to deep mediation. You become detached from the body and the mind can flow freely. Of course there is also often (not always) a sexual element at well, and orgasms can be pretty mind blowing. I find it very interesting to play with extreme pain in a good way, while also hating extreme bad pain such as migraines and clusters. I truly have a love/hate relationship with pain. But when I can control it, it's pretty amazing. Mox
  19. MoxieGirl

    Chronic Cluster a Year OR Longer?

    Hi Elrik138, Sorry to say, but they normally last much longer. Usually, once you get clusters you have them for life. Now, are you episodic or chronic, that's a different question. I think the official diagnosis is that if you have them for a year with gaps between attacks not lasting more than a month, then you are technically chronic. People do go from episodic to chronic and, I believe, chronic to episodic. I've been chronic since mine started in Jan 2007. So coming up on 13 years now. But, the treatments we talk about on this site are so effective that my attacks are really mild. I have 2-3 a month, but barely notice them. Mox
  20. MoxieGirl

    Migraine vs Cluster headaches?

    Hi, Re cat allergy. I've always been allergic to Penicillin and most antibiotics, with some pretty severe reactions. And, I occasionally have a bit of hay fever, especially if I move to a new area as it seems to take a year before my body adjusts. The last few years, however, my hay fever has gotten more pronounced, and I noticed that when I moved into my current home in Dec 2018, that opening my bedroom window would cause me to sneeze all day. That, I thought, was the extent of my allergies. Let's jump back in time to the start of 2016, when a couple friends and I moved into a new house and my cat started spending more time in my bedroom than anywhere else in the house. Now, there were a lot of other things going on in my life at the time, e.g. my best friend and house mate being diagnosed with a terminal disease that killed her in Nov 2018. It was during this time that my headaches and migraines got really bad. We are talking 20+ a month plus 2-3 cluster headaches a month. But, I put it all down to the stress of what was happening in my life. I expected my migraines to settle down this year, as I'm now living on my own and 90% of my stress is gone. Life is pretty chilled out at the moment, so stress shouldn't be triggering migraines. But, my headaches and migraines, if anything, got worse. In July of this year I had a bad reaction to something. I'm pretty sure it was something I ate, but can't say for sure. A few weeks later, same thing, but it came on faster and was much worse. So much so I drove to the hospital where I got adrenaline and a high dose of antihistamine. A few weeks later, it happened again, and again, much faster and stronger. I barely made it to the hospital before I was on the brink of passing out. Strong indications were that I had a nut allergy of some sort. That prompted a trip to the allergy clinic and the standard pokes-on-the-arm allergy test, and that's when I found out I was allergic to cats (and peanuts, walnuts, almonds, hazelnuts, brazil nuts, house dust, trees, shrubs & grass). I was never allergic to these nuts or peanuts before. In fact, they were a regular part of my diet. So, no idea what happened that I suddenly became allergic to all this, and I don't know if I became allergic to cats just this year, along with the nuts, or if the cat allergy had been around for a couple years and was the route cause of 3 years of extreme headaches and migraines. But since the cat moved out, I'm in a lot less pain. And no, cats don't make me sneeze or give me a runny nose, and I don't itch or break out in hives around them. Just get headaches and migraines. Btw, I'm in my 50s. Mox
  21. MoxieGirl

    Migraine vs Cluster headaches?

    HI eldoradoboosters, Welcome to the group. Interesting set of symptoms there. I'm not a doctor, but just someone who has daily chronic headaches, migraines and chronic cluster headaches. I can easily have 300+ headaches a year, in a good year. My nutshell analogy of the different types of headaches goes like this: If you equate the pain of a headache to the Moon, then a migraine would be the Earth and a cluster headache the Sun. That said, I sometimes struggle telling a headache from a migraine until it's past or I figure out what meds were effective. Paracetamol works well on headaches, but I need a triptan for migraines (usually). I have tinnitus, and yes, triptans (Zomiltriptan, Eletriptan) and other things make it worse (cannabis, psychedelics, etc.). So that's normal. Sinus headaches can look a lot like migraines, and can respond to Ibuprofen. If you think about it, a sinus headache is triggered by swollen sinuses and Ibuprofen reduces swelling. Might be worth looking into, and might explain why you get them at night, when you're lying down. I have a friend with bad sinus headaches, and if she simply bends over and stands back up, that's enough to trigger a migraine. The pain normally associated with a cluster headache is phenomenal. A migraine will often drive people to a dark, quiet room where they don't have to move much, smell anything or be hurt by noise. Cluster Headaches tend to force people to pace, to literally pound their head on the wall, cry, moan, go running, etc.. They are very much opposite responses. Clusters are also associated with droopy eye and a runny eye and nose, but only on the side of the face with the cluster. I recently found out I am allergic to cats, so gave my cat to my son a few weeks ago. Since then, my headaches and migraines dropped by 75% (down from 12 a week to 3 a week). Like you, I had ruled out food triggers and thus thought I had covered all the basis. But apparently not. Sinus issues may explain a lot of things for you, and it might be from an allergy you're unaware of. If I open my bedroom window, which overlooks my neighbour's garden, I'll be sneezing all day and have a runny nose because there is something in her garden that my body really, really doesn't like. Hope that helps. Mox
  22. 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
  23. 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
  24. 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
  25. MoxieGirl

    Cluster Headache Poem

    Thanks, glad you liked it.