MoxieGirl

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

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

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

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

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

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

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

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

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

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

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

Heartbreaking.

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

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

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

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

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

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

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

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

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

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

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

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.

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