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ClusterBusters

MoxieGirl

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MoxieGirl last won the day on March 3

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About MoxieGirl

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    Norfolk, England

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  1. MoxieGirl

    50 yr old Newbie

    Hey Dr J, Welcome to the forum, so sorry you have to be here. Looks like you've already received some good advice. I'd also recommend you do as much research as you can, as mentioned above, most doctors (even specialist neurologists) are pretty clueless when it comes to CH. They just don't know what to do or their data is out of date. Ouchuk.org is a good sight for background information on the different types of primary headaches, and explains them well along with some standard treatment options. Some things work really well for some types of headaches (e.g. triptans for migraines and indomethacin for SUNCT). Triptans don't normally do anything for clusters, in my experience. Although I think some injectable forms of triptans can be beneficial. Caffeine is also helpful to abort an attack. Strong coffee or an energy drink will sometimes shorten attacks. Mox
  2. MoxieGirl

    Indomethacin and dizziness?

    Yep, nasty stuff Indomethacin. Effective, but not fun. Best advice, eat food before or with it, I found that always stopped the dizziness. And, feeling like you're seriously drunk is a good description. But, food makes a HUGE difference. Seriously huge difference. Can't stress it enough. Mox
  3. MoxieGirl

    BOF

    Hey wonderful. Sounds like you're having a tough time atm. I'm not coming to the forum much at the moment, other projects taking up my time. But you're in my thoughts a lot, and I hope you have a speedy recovery. Stay strong, and it's Ok to cry. xx Mox
  4. MoxieGirl

    A Cluster Headache Is

    A cluster headache is ... Like being hit in the eye by your own brain at random times of the day and night. Of course, your brain is wielding a baseball bat. With nails hammered through the business end, sticking out menacingly at acute angles. Nails, which have been heated in a fireplace for hours until they are glowing red. Sure, the first time the bat makes contact, you only wince in pain for a moment and try to brush it off. After fifteen minutes, it starts to take its toll on your pain threshold. Thirty minutes in, and you want to pluck what is left of your eyeball out and soak it in ice cold water, you know, just for a refreshing break. But of course you can't. There's not enough of your eye left to pluck out. The migraine you had has long fled in terror. An hour in, and your sanity is as shredded as your face feels. Two hours in, and you're a blubbering mess. You have real bruises now from hitting your own face and from that dent in the wall, in an effort to distract yourself from the real pain. Your eye is bloodshot, your nose has been running non stop and your face looks like it is melting. Eventually though, the beating stops. You're hungry and thirsty, the attack has taken a lot out of you, but you also have no energy or desire to move. If someone would only bring you some chocolate, a coffee and a tall glass of cold water. Quietly, a voice from the depths of your mind whispers, 'post-traumatic stress attack starting in 20 seconds... 19... 18.. 17.' You have enough time for a deep breath. Maybe two. Then absolute terror grabs your soul by the throat. It shakes the very core of who you are back and forth like a rag doll, and then throws it into the far corner of the room. Rocking back and forth, body shaking from your bones to your skin, you huddle in the corner in utter terror. Every muscle cries out in fear. Tears seem to escape through the very pores in your skin and flows from your eyes like a river. You don't know when the bat will return to continue its work, but you know it will. It always does. It always will. Note: Today, I only had a brief attack, measured in seconds. It was my third, and shortest cluster attack this week. But, it managed to bring back this flashback from when they were bad. Or, perhaps a flash-forward to when they'll be bad again, for surely they will. That is their nature. Not one word above is an exaggeration, if anything, it undersells the experience. Mox
  5. MoxieGirl

    Question about cluster headaches

    No two cluster heads are the same, and just as soon as you figure your's out, it changes. Mine have always switched sided. Left side clusters always hurt worse than right side clusters. I wouldn't read too much into them switching around. Might be connected to a change in meds or hormones or the wind blowing a new direction. I know, not a lot help there. Unless your clusters are caused by the cysts, it all sounds pretty normal. (not being a doctor that is). Mox
  6. MoxieGirl

    Energy drinks

    Aspartame triggers migraines in some people. So worth testing when you're not in pain. Trading a Cluster for a Migraine isn't much of a win. LOL Mox
  7. MoxieGirl

    CH and Migraines

    Hi, Unfortunately I've not been able to isolate that kind of correlation. But, I do routinely have 300-500 headaches, migraines and clusters a year. Thankfully, busting is good for migraines too, btw. I was once in day 2 of a week long migraine when I got a really bad cluster headache. I think the cluster scared the migraine away, because afterwards I was utterly pain free for about 2 hours. Then the migraine returned. Mox
  8. MoxieGirl

    Alcohol intoxication during cluster

    Hey 4Runner, Let me offer a different perspective. I'm a chronic cluster head and have had them year round since they started in Jan 2007. That said, the last few years they have been incredibly mild, short and rare. 1-2 a month that might reach KIP 2 or 3. This is largely... who am I kidding... this is ENTIRELY down to an aggressive busting regimen that I started back when they were really bad (2-5 attacks a day, every 2-3 days with each attack lasting 1-3 hours, for a year). Thankfully, alcohol isn't a trigger for me because I sometimes - rarely, but sometimes - use it to terminate a migraine as I am also a chronic migraine sufferer. Last year I was getting 25+ a month on a regular basis. Thankfully, most were short and treatable with triptans. But, 2-3 times a year I'll get a migraine that lasts 3+ days and triptans have no effect. When I reach day 3 and nothing has worked to alleviate the pain, I turn to vodka. I am sure to get only the good stuff. Russian Standard is my go to, but Absolut Vodka and Smirnoff are OK too. The better quality of vodka the less likely you are to have a hangover. Don't buy cheap vodka, it's a waste of money. I sit down with a shot glass and a chaser - used to be coke when I drank coke, now will be lemonade, or ice tea or pineapple juice or something. I will proceed to drink 9-12 shots of vodka over the course of an hour or so. The trick to avoid a hangover is to have 1-2 large glasses of water before bed. Hangovers are the result of the body getting dehydrated because of the alcohol, and your blood vessels shrink, and they hurt when they shrink. Once you have a hangover, it's too late. You have to suffer through it. But, if you preempt it by loading your body up with water before you go to bed, then you don't get dehydrated during the night. No hangover. I haven't had a hangover in 12 years. Some people take Anadin, Paracetamol or Asprin with the 2 glasses of water, but I found it wasn't necessary. I'll usually still have the migraine when I go to bed, but will wake up absolutely fine the next morning. On those very rare occasions when I'm out drinking with friends, I always order a pint of water with my last round, and then have another pint of water when I get home. The last time I drank a lot was several years ago in Scotland at a wedding reception for my best friend. I was doing shots of vodka with Vodka & Coke chasers, and I stopped counting somewhere around 12 or 13. There are chunks of the night that I don't remember. But, I had a glass of water with my last round and another when I got to the hotel. I got up about 7:30 the next morning, had breakfast with friends then got my camera and when shooting around the Scottish countryside for a few hours before the drive home. Not bragging, just saying the water thing works. An English Breakfast is a great way to reload the body with nutrients the next day. I typically have Bacon, Eggs, Sausage, hash browns and toast. Not quite a Full English, but it does the trick. Regardless, get plenty of protein in you the next morning. I told both my GP and my Neurologist about this method back when I as routinely having migraines that lasted 2 - 7 days. They both advised that I only use it as a last resort as my body will build up a tolerance, and I'll need more and more alcohol in order to reach pain free status. I took their advice, and only use it when nothing else works. Thankfully, I don't have to do it that often any more, and I rarely drink otherwise. Although, I normally keep a bottle, or 1/2 bottle of vodka in the freezer, just in case I need it. I understand the points the other posters made, and I'm not here to promote alcohol consumption. But, if it works, don't knock it. If it buys you a good night's sleep and a day or two pain free, go for it. Just find the best way to do it, use caution and be smart about it. And, when the pain is gone, leave the alcohol alone. You don't want to build up a tolerance for it. I hope my tips help reduce the hangover. Mox
  9. 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
  10. 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
  11. 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
  12. 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
  13. MoxieGirl

    RIP Marie...

    Heartbreaking.
  14. MoxieGirl

    Emgality

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

    Emgality

    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
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