MoxieGirl

Thank you both, I'd be delighted to have it at the conference. Was hoping I'd be able to attend this year, but just not in the cards I'm afraid. Bob, please kindly add: by Renée Elizabeth Mineart. MG

I had posted this back in April and it didn't get a lot of comment. Not that I'm craving your adoration or anything like that. But am curious what people think. Should I not give up my day job? MG Longing to 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 Demon 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 Knives 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 terror 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 sensations ensue This is when the true crying 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 Finally 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.

Click on the name of the person you want to message. I clicked on 'Brew', and there you'll find a button in the top right 'send me a message'. Or... Once logged in, click on your name in the far top right and go to Personal Messenger. MG

Might try taking it earlier in the evening. I was on a medicine a few years ago that left me feeling groggy in the morning, and doc said to take it around 8pm instead of just before bed, and that way the effects completely wore off before I woke up. In regards to the interaction with blood pressure meds - I'd Goggle it. MG

Happymeal, I have a saying. No two cluster heads are the same, and just as soon as you figure your beast out, it changes. The beast doesn't like it when we predict how he's going to behave, so as soon as we do, he changes the game. I'd bet that anything could be a trigger. Some people might find looking at a cow sideways on a rainy day is a trigger. What are the odds, pretty slim I'd expect. If I take to many Anadin, I'll start getting rebound headaches, which force me to take more Anadin. Rebound clusters.. not sure. MG

Hi aneurysmalex, Welcome. You raise a good point or two. I've heard of many causes for clusters over the years, many involving head trauma. Mine are a result of altering my hormones, which in turn screwed with my hypothalamus which in turn triggered my clusters. My longest running, non-stop headache lasted 7 months and was punctuated with frequent, and extreme, clusters and migraines. You won't find a single person here who is a stranger to pain, either directly or from supporting a loved one. I think it is important that all of us understand our condition as best as we can, and not just fall in line with the current, popular cure. Yes, there are common threads that all, or most, cluster heads experience, but everyone is different too, and different things work for different people. Keeping an open mind and trying things is key to pain free days. Thanks for your post. MG

Hey CHS, Loved the blog. It confirms what I thought and explains it well. Like you, I've never found a medical definition of a cluster migraine. Probably some clueless doctor trying to sound like they know more than they do. I was once in the throws of a 5 day migraine, and had a really bad cluster in the middle of it. At first, it added to the pain. The worst part is that the cluster drove me to move, to get up, to pace, to bang my head, while the migraine was screaming at me to not move an inch or even open my eyes! But then, the cluster completely overwhelmed the migraine. About 45 minutes later, the cluster faded away and so did the migraine. Well, for about 2 hours anyway. It seemed like the cluster scared the migraine away, and I enjoyed 2 hours of blissful pain-freeness in the middle of a bad migraine. Weird, huh. MG

Yeah, me too. But wanted to double check. I have a meeting with her next week, and will learn more.

Hey gang, This term 'Cluster Migraine', when people use it, do they really mean cluster headache? Or... are they referring to migraines that come in clusters? I've seen it used a few times, and today my book keeper mentioned that she and her son have cluster migraines. Google was uncharacteristically unhelpful. Thanks MG

Hi, I usually bust with about 55 seeds. Here's how I prep mine: https://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1357378289 I would say bust with the same amount as a maintenance as you would to bust a cycle. I get mine in the UK, could probably track down my source if needed. MG

Hi, As many of you know, although I suffer with clusters, I don't use O2. My attacks are just too short to warrant it. At least, most of the time. But, I wonder if O2 helps migraines and/or normal headaches as well? I heard somewhere that they might, and I'm wondering if anyone has any first hand experience. Sure would like to find an alternative to all the pain killers I take. MG

Thanks for the info. And good ones CHfather, will add them to the list. It's starting to look pretty good.

CHFather, what are TMJ Treatments?

Awesome list guys! And wow, some of you need a really big hug for surviving this far. I'll start on my project next week. MG

The Jeebs Jibulator - now that's a new one that might require some explaining. Sounds interesting. I'll let you into why I've asked for this information. CHFather recently posted some very cool - honest - greeting cards aimed for people with cancer. I like those cards a lot, and they got me thinking. What if we had a card we could give to people when they find out we have CH and are stirred with that desire to help by suggesting we try this and that. The most recent suggestions I've received are for meditation and healing crystals. I'm running with the theory that if something doesn't work for most people with CH, it simply doesn't work on CH. I haven't tried acupuncture, and I don't intend to because I know several other CHers who have and it didn't help. So I figure the odds are very slim it'll work for me. I'm picturing a greeting card with a brief description of what CH is, a list of all the things that have been tried to cure it and then some helpful tips on what the receiver of the card can do that will actually help. These basically being to be understanding, appreciate that CH can frequently interrupt any plans we had together and to not take it personally, and if you're ever with me when I have an attack, bring me water. That sort of thing. The card is really a 'stop talking and get me a glass of water card', but said more politely. MG

Nah, I think I'll leave busting agents out of this list, for now.

I have, what may seem, a silly question, but I hope to do something kinda cool with the answers. Would you mind listing all the things you've tried over the years to stop clusters regardless if it worked or not? If someone else has listed it, you don't need to list it again, I appreciate there will be several things on the list we've all tried. I'll start: Verapamil Topirmate (Topomax) Water, water and more water Zomiltriptan Indomethacin Hot cloths Cold cloths Meditation Stress management Vitamin D3 Thanks MG

Those are freaking awesome! MG

HasBaz, Most people find (myself included) that busting is AWESOME for migraines as well as clusters. The year before I started busting, I had 60 migraines, the following year I had 3. To say busting restored my life is an understatement. MG

Hi Alex, I did my initial massage training in London, and could probably recommend a good therapist or two, I know a handful in the city. Love London, great city! I used to work for a company in South Ruislip, which brought me to the city quite often. I live in Suffolk, between Cambridge and Ipswich, and am doing a pretty intense sports massage course in Cambridge. People really underestimate the power of massage. I'm a bit of a gamer, although more geek than gamer. Diablo III is my main haunt. Couldn't get into WOW, and do the occasional console game. I'm generally too busy though as I always have a number of projects on the go. Thinking about it.... it may not be the game that is the trigger. I find that if my stress levels drop to low, if I relax too much, that, in itself, is a trigger. So, if we put stress on a 1-10 scale, 1 is no stress and 10 is max stress. I need to keep my stress level balanced between 4 and 7. To low, and I get a cluster, too high and I get a migraine. I found, when I was getting hit bad, I got hit most on the weekend when I chilled out for a movie or two. So, maybe games are just TOO relaxing for you. Something to think about. MG

Hi Alex, I've heard of the very occasional case where someone will have a tooth removed, or other seemingly unrelated procedure, and their migraines or clusters vanish, but it's rare. Not being an expert, I would guess that if you find Oxygen helps, then you probably have clusters and not cluster-headache like symptoms caused by neck pain. But I could be wrong. Have you seen a chiropractor about your next pain? How about a Sports/Remedial Therapies Massage Therapist? I'm a massage therapist, and it is amazing what massage can do for arthritis (depending on the type of course). I find massage also helps reduce and manage my headaches - pretty good stuff really. To answer your second question, I shall apply MoxieGirl's rule of thumb: No two cluster sufferers are the same, and just as soon as you figure yours out, it changes. Could video games be a trigger. Sure, absolutely. If you play for long hours and find you get a cluster during or afterwords, safe bet it's a trigger. Crying and strong emotions will trigger a cluster attack for me, but alcohol does not, which is rare. Most people get attacks if they drink while in cycle. Everyone is different. The trick is to find out what triggers yours, and how to manage that. If gaming is a trigger, set an alarm and take a break every 20 minutes. Walk around, get some fresh air, something to eat and drink, then see if you can play another 20 minutes without an attack. MG

I found this TED talk this morning and thought some of you might enjoy it. https://www.youtube.com/watch?t=1056&v=XI5frPV58tY MG

Hi Ida, Sorry to hear about your brother. Wonderful of you to come here and help. We love supporters. I suffer with chronic migraines, they run in my family and I've had them near enough all my life. I've had clusters for the last 8 years, also chronic. Yes, I find my pain fluctuates during an attack. Thinking about it, my attacks probably (mostly) fall into two types. Fast and Sharp (like being hit in the eye with a baseball bat, full swing) and Slow and Painful. The F&S attacks come on that quickly, like I've literally been clobbered in the eye. I will often stagger backwards under the suddenness of it. These can last a few minutes to an hour, and the pain is ultra intense, and pretty constant, till it dies out nearly as fast as it came. The S&P attacks are a different beast altogether. I can have a headache for 1-2 hours before the attack, but not always. The pain builds slowly in comparison to the F&S attack, although even this is measured in seconds or minutes. These type probably hang around longer, going from 30 minutes to an hour, I rarely have attacks longer than an hour these days. But during that time, the pain can waver A LOT, even nearly fade completely. Sometimes I think the cluster will have died out, only to have it swing back up to full force. Also, I find I can direct and focus my thoughts some during these long attacks, and sometimes diminish the pain just by letting my mind think about something else. Doesn't always work, but can reduce it some. I guess the pain can be like slow flowing waves at time, and at other times, constant. These guys: https://ouchuk.org have some really good information to help diagnose if they are clusters or not. PH and SUNCT also look a lot like clusters sometimes. The only way to know for sure, is to go to a headache specialist, and then cross your fingers they actually know what clusters are. You'll find not a lot of us have much faith in doctors. There are a few amazing ones out there, but a lot of clueless ones too. MG

MoxieGirl's golden rule. No two cluster suffers are the same, and just as soon as you figure yours out, it changes. Mentioned above that addictive personality can go with CH. I don't have an addictive personality. I've also never smoked. Just saying. MG

Well said.