MoxieGirl

How's Fab? Anyone heard from her lately? MG

Thanks CHF, excellent feedback. It's not a poetry competition, but a 'which touches you most' question - and for that you have fantastic experience. MG

I will just add, that personally I'm not a fan of poetry. That is to say, reading other people's work tends to bore me, unless it is quite short. So if you aren't a big fan of my rhyming poem, I get it. I wouldn't be either if someone else wrote it. But I love it, granted, probably only because I wrote it. That said, I enjoy writing poems because it sharpens my pencil, as it were, for writing my more serious work, my prose. Poems are a bit of fun word play. They force you to conform to a style and in the fewest words possible. Excellent skills to have for a novelist. So, like I say, feedback is very welcome but you are unlikely to offend me. It is the work in question, not me the author. I'm confident in my writing abilities and I know I'm not a poet. The above poem (or should I say poems) are for you, the cluster community, if you want them. MG

I've had a bit of private feedback, and it seems my first draft is liked as well. Now that you can view them together, what do you think? 1st draft: A Normal Day ItÂ’s a normal day, just like any other Yesterday, today and tomorrow - they are all the same IÂ’m going about my business, as normal Doing nothing special ThatÂ’s when I feel it. Like someone has sucked the life out of my eyeball Just the one Replacing the warm flowing blood with ice water A chill of foreboding races through my body My nose starts to run, but only in one nostril My eye starts to tear up, but only the one eye My heart begins to pound, I know what is coming The sensation rapidly grows and spreads Like an orchestra reaching its crescendo The cold quickly turns to burning A red hot nail is being driven into my eye through the temple Then another The nails are being twisted, pulled and pushed My eye is swelling under the heat, being ripped from its socket As the bone of my skull begins to crack open One by one, the nerves of my face are plucked out One hour passes, maybe two I have no sense of time or place There is only the screams echoing inside my head I try and tell myself it isnÂ’t really happening My eye, skull and face are still intact Yet I know, if this destructive energy ever escaped my head It would tear apart my home like a tornado Eventually it stops as quickly as it came I collapse onto my bed in exhaustion I need water, I need food, I need to move But I donÂ’t even have the energy to raise my arm Then the tears come. In great wave after wave they shake my body And rattle my bones with convulsions Terror absolute, anger and despair climb into my broken body But eventually, even that fades to a whimper I reach down deep Deeper than I knew possible And find the strength to move I get a gulp of water and wash the tears away And wonder when the next attack will come It is, after all, a normal day, just like any other. Yesterday, today and tomorrow - they are all the same

So.... what do you guys think? It's been read lots, but no comments. Is it that bad? Was hoping I'd come pretty close to the mark with the poem. No? MG

Good luck, and please let us know what they say. If it is clusters, it is pretty routine (at least in the UK) to get a CAT scan. MG

My heart goes out to you Amphs. Striking like clockwork is another Cluster indicator. Clusters are controlled by the hypothalamus, which controls body temperature and the body's clock. So people who get them, tend, to get them same time of day, same time of year, etc. Not always, but it is pretty common. When mine started, it was every Tuesday evening at 7pm or 7:20. If it was 7:30 and I hadn't had an attack, I knew I was pretty safe for a week. The issues with the heart are really only a concern if you overdose. The problem is, because our pain is so bad and so frequent, it's easy to overdose. But if you take it as prescribed, shouldn't be a problem. Your doctor will know better. Personally, I never got on well with any of the doctor prescribed meds. Always had side affects or were a waste of time - but that isn't to say it isn't worth pursuing. Until you have a clear diagnosis from a neurologist that it is clusters, busting with shrooms may also be an equal waste of time. On the flip side, if you have access to them and have the experience to use it safely, it's not going to hurt anything. There are often 'slapbacks' after the first few busts. These can be quite intense, so if things feel like they are getting worse, that's a good sign. But they only last a few days. 1.2 gram of cracker dry shrooms is a good starting dose, and effective on clusters. You don't need a massive trip or anything. If you feel like you've had a couple of beers on an empty stomach, that is about the right amount of tripping required. Have you had any head trauma in the last year? MG

Have you done any research into Trigeminal Neuralgia? That tends to occur more in the jaw/face than eye. Trigeminal Neuralgia is the only other condition I know of that I'd say comes close to clusters. But TN and CH act on the Trigeminal nerve, just in different places. You need to be talking to a doctor, ASAP. MG

Big, Giant, Gentle Hugs to you Fab. So glad you are improving, and an important lesson to everyone. Hope you are allowed more internet time as you improve, we miss having you here. And sorry if we made you cry (crying is one of my triggers, so don't like it much). LOL xx MG

Hi Again, Technically, I can't say for sure I had coital cephalgia. I rarely get headaches in the back of my head, nearly all of mine are in the forehead, eyes and sometimes the top of my head. Physical exertion can be a pretty major headache trigger for me. Migraines run in my family. My migraines are felt in both my eyes, like they are being squeezed by a vice. I am ultra sensitive to light, sound, movement, smells, temperatures, touch.. pretty much every sensation is amplified to an unbearable level. My migraines can last hours to 7 days. I also have daily chronic headaches, which in reality means I get a headache about 5 days out of any 7. These are nearly always in the forehead, although can be anyplace in the head. They are sharp and annoying. A 10 on my headache scale is about a 3 on my migraine scale. My longest ever headache lasted 7 months, non-stop. Then, there are the clusters. They are like an explosion in the eye, just one eye. Well, normally. One of the diagnostic criteria is that clusters are always one sided, but don't believe everything you read. I have had 2 clusters that spanned both sides of my face. Or, perhaps, I had clusters at the same time on either side of the face. Guess that's possible. Sometimes clusters can come on suddenly, like being hit with a baseball bat in the eye. Sometimes they come on slowly and build quickly. Sometimes I can have a headache that lasts 1-2 hours before the cluster. The pain itself are often hot, like red hot nails being plunged into the eye and twisted. Sometimes it is like my skull is being cracked open with an ax. My clusters ping pong from one side of my face to the other, but some people ALWAYS have them on the same side. Apart from the extreme pain, there are additional signs it's a cluster. Your nose will run on the same side of the face as the cluster. The eye will water, like you're crying on one side of your face. The eye, and sometimes that whole side of the face, will droop. Often, my eye is very bloodshot after the attack. After the attack, I used to always have a post-traumatic stress attack. This involved 20-30 minutes of whole body shaking and crying in absolute terror. Also, my body temperature would go from hot to cold to hot, and I'd be extremely thirsty. I once likened it to being a child whose father would occasionally come home drunk and beat the child senseless. That kind of fear is how I felt after a cluster attack. I say felt, because I hardly get them now since taking mushrooms. A 10 on my migraine scale is about a 3 on my cluster scale. So, how I tell them apart is partly by the pain, but also how long they last and where they strike. Mushrooms help with my clusters and my migraines, they don't touch my daily chronic headaches. Will they help with sex headaches? No idea, haven't heard it mentioned before, but they are a very uncommon headache. MG

Hi Amphs, Welcome to the group, sorry you have to be here. I'm not a doctor, so can't, and won't diagnose you. But from what you describe, you seem to have many of the hallmark signs of clusters. But, there are also SUNCT and PH (Paroxysmal Hermicrania), which are also really bad, one sided and look a lot like Clusters. These three headache types combined are called TACS (Trigeminal Autonomic Cephalgias) - that translates to 'no fun at all'. The OUCH site has some really well put together information on TACS, focusing on Clusters. It's a good resource: https://ouchuk.org/cluster-headaches-overview I've had clusters for 8 years now, all year long. There are 2 types of cluster sufferers, Episodic and Chronic. Episodics tend to get attacks once a year, or once every 2 years, etc. The attacks may last weeks or months before going back into remission for a year or so. They typically get them the same time every year. Chronics, those like me, don't have that period of remission. My longest period between clusters has been 23 days, but normally it's 3 - 10 days between attacks, if I'm lucky. I can have periods when I get them almost daily. As far as intensity goes, it varies A LOT. On a 1 - 10 pain scale, where 10 is the worst cluster, most of mine are 3 - 5, and most last less than 15 minutes, sometimes just a minute or two. But I also occasionally get 10s, a couple of times have even had a 14! And sometimes they last hours. When I have a 1-2, they generally last a few seconds to a minute or two, and will make me pause in my conversation or sit down. A 3-5 lasts longer, 15 minutes give or take, and I'll go to my room and lay down. A 3-5 cluster makes me stop whatever I'm doing. If I'm driving, I have to pull over. Anything greater than 6 will have me in tears and rocking back and forth or pacing the room. Pacing is a common attribute to clusters. It's tough for most people to sit still when attacked, although I tend to curl up on my bed and rock back and forth, unless it's a really bad one. This makes clusters very different from migraines. With a migraine, you want a quiet, dark room and no movement. Light and sound rarely affect cluster sufferers, and movement is usually good. Indomethacin is a pain killer that is VERY effective on SUNCT type headaches, but doesn't touch clusters. It's one way to rule out if you have SUNCT, but it doesn't sound like you do. If you have clusters, get your hands on an O2 tank. It is the best abortive going, and one that I don't use. Most of mine are too short as it takes 5-10 minutes for the O2 to really kick in (someone correct me if I'm wrong). My clusters would be well gone in that time. But, if your's lasts 30 minutes or more GET O2! Someone else here will be able to give you more advice. Other things to use to try and stop an attack: an energy drink - Red Bull, Monster, etc. Coffee, hot shower or cold shower, hot cloth or cold cloth. There is also a vitamin regimen that many find helpful in preventing attacks. We affectionally call it the Vitamin D3 Regimen, although it's creator has officially named it the Anti-Inflammatory Regimen, and if you have time to kill, you can read the whole history of it on our sister site:http://www.clusterheadaches.com/wwwboard2/index.html But you can also find a synopsis here: https://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1314134804 There is also, of course, Rivia Corymbose Seeds (RC Seeds), Magic Mushrooms and LSD (to name a few). I can say, without a doubt, that I'd be dead now if it wasn't for RC Seeds and Shrooms. Sex headaches suck big time! I've had a few, and have had clusters triggered by sex, also not fun. Generally, no other headache comes close to a cluster. I suffer with chronic daily headaches and migraines, and they are peanuts compared to clusters. Do you drink? If so, does alcohol trigger an attack? As a guess, I'd say 90+% of cluster headaches can't touch alcohol while in a cycle. MG's rule of thumb: No two cluster sufferers are the same, and just as soon as you figure yours out, it changes. Hang in there, MG

Don't they say the equinoxes are usually a bad time of year for Episodics? My attacks have actually been VERY mild the last few months (wish I could say the same for my migraines and headaches). I've been hit a few times, about once a week. One or two have been a KIP6/7, but most have been very mild. So am counting my blessings and planning on busting tonight, just to keep the beast away a bit longer if I can, and to help my migraines. MG

My heart goes out to you Bob, and to his family and friends. Sounds like we have lost a champion. But thankfully, he had helped establish a foundation so that now there are 1000s of champions all working towards PF Days. xx MG

Comments welcome. Good, bad, indifferent? When the Beast Visits By MoxieGirl 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 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 Then the true crying begins And 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 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.

Jeebs - you're a genius!

Fab, you are often in my thoughts and I wish you a very speedy recovery. Not the same without you posting on the board. Know that you are missed. All my love MoxieGirl

OK, I'm SERIOUSLY thinking about coming this year. This is the third conference since I've been an active member of cluster busters, and would dearly love to meet you all. Also, I hail from neighbouring Iowa, about a 4 or 5 hour drive from Chicago. Haven't been home in 14 years, going back would be interesting. Will be making a final decision soon. MG

This is what I have so far. It doesn't rhyme yet, my first drafts never do. This is the concept of what I'm trying to write, and will eventually turn into poetry. A Normal Day ItÂ’s a normal day, just like any other Yesterday, today and tomorrow - they are all the same IÂ’m going about my business, as normal Doing nothing special ThatÂ’s when I feel it. Like someone has sucked the life out of my eyeball Just the one Replacing the warm flowing blood with ice water A chill of foreboding races through my body My nose starts to run, but only in one nostril My eye starts to tear up, but only the one eye My heart begins to pound, I know what is coming The sensation rapidly grows and spreads Like an orchestra reaching its crescendo The cold quickly turns to burning A red hot nail is being driven into my eye through the temple Then another The nails are being twisted, pulled and pushed My eye is swelling under the heat, being ripped from its socket As the bone of my skull begins to crack open One by one, the nerves of my face are plucked out One hour passes, maybe two I have no sense of time or place There is only the screams echoing inside my head I try and tell myself it isnÂ’t really happening My eye, skull and face are still intact Yet I know, if this destructive energy ever escaped my head It would tear apart my home like a tornado Eventually it stops as quickly as it came I collapse onto my bed in exhaustion I need water, I need food, I need to move But I donÂ’t even have the energy to raise my arm Then the tears come. In great wave after wave they shake my body And rattle my bones with convulsions Terror absolute, anger and despair climb into my broken body But eventually, even that fades to a whimper I reach down deep Deeper than I knew possible And find the strength to move I get a gulp of water and wash the tears away And wonder when the next attack will come It is, after all, a normal day, just like any other. Yesterday, today and tomorrow - they are all the same

Gotta love the gang at Huffington post for being pro psychedelics. Keep bringing on the positive news reports. http://www.huffingtonpost.com/2015/01/22/psychedelic-research_n_6515268.html MG

Now that I have your attention, I would like to talk about a very important topic that doesn't get enough air time. That topic is the risks and dangers of taking to much prescription medications for Cluster Headaches (and or other headaches, or at least in my case). Every time the doc gives us a new prescription to try, there is always (at least in the UK) a sheet of paper tucked inside detailing what the medicine will do, and the possible side effects. It will also talk about what to do incase you overdose on the medicine and associated risks. [note: I often refer to doctor prescribed meds as 'drugs'. This is an Americanism, and I apologies in advance to my British and European friends.] The problem is, many of the drugs doctors give us are pretty powerful. It's also a sad fact that most doctors really just do not get how bad or how frequent our attacks are. It's easy, very easy, to get slammed by the Cluster Demon and take the abortive the doctor gave you each time. Even though we aren't suppose to use more than 3 a week, we go through 5 a day. And I get it! The pain is so bad that we say to ourselves 'damn the consequences'. I know of at least one member now suffering pretty serious heart conditions because of doing just that. I would like to be clear, this isn't a condemnation of anyone who does this, but I think it's an important subject to talk about. After all, I'm as guilty as the next person for not taking the warnings on medicine packets seriously enough. As most of you know, I have daily chronic headaches. It is not uncommon for me to take Anadin 2 or 3 times a day, and I routinely take it 5-10 times a week. Add to that countless triptans and codeine for my migraines, and I know I'm risking some pretty dangerous levels. I've already seen the result of this in the form of rebound headaches. So, a few questions for you: Do you read the warnings when the doctor gives you a new med? Do you research it further by looking it up on the internet? Do you ignore the warnings? What could we, as a community, do better to help people understand the risks? There are already some fine posts out there like this one: https://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1426612782 - but I think we need more. I also worry that for those of us who have broken away from taking doctor prescribed meds, and are relying solely on busting or other home-grown remedies and vitamins, to forget that this is a very real and important topic for most people with our condition. MG

To much strenuous activity is a trigger for me. If it doesn't cause a cluster, then a headache or migraine is sure to follow. Once got a really bad cluster attack after Yoga! it's the downward dog, can't stand that position, can't stand Yoga. tangerinearmy, you mentioned not getting attacks at work when you were a plasterer. I don't get attacks at work, and I sit at a computer all day, or am up in front of a class teaching. I put it down to the slightly heightened stress levels at work. Just knowing I'm at work and would be terrified of an attack there raises my stress to keep them away - or at least that's how I see it. I get 99% of my attacks when I'm chilling out at home - relaxation is bad. MG

Fantastic idea! MG

WOW! Yeah, that's impressive. I do find if the pain level is anything below a KIP 8 I can just mentally walk away from it and pretty much turn it off. I haven't injured myself quite to the same degree and smashing my fingers, but have dealt with some pretty serious levels of pain. Well, serious for mortal folk, not tough leather souls like us. It the times when you're in the emergency room calmly giving the doctors and nurses directions on what they should be doing to fix you that I think people find unnerving. I once helped a nurse set up an IV because she kept missing the blood vessel. MG

Hi emdub77, Like your wife, I've had migraines off and on all my life. They run in my family, and are pretty common with my siblings and nieces and nephews. Dec 31, 2006 I got a headache. It lasted 24/7 for 7 months. During that time, the headache was punctuated with many migraines and cluster attacks. It was a very bad year. Unlike most people though, I'm 95% sure I know the cause of my chronic daily headaches and clusters - Hormones. In 2006 I was undergoing hormone replacement therapy to change my body from male to female. The result, or so my neuro and I believe, is that changing the hormones affected my hypothalamus, which set off the bad headaches. Normally a CAT scan is part of the diagnostic process for clusters - doctors want to make sure there isn't something sinister in the brain causing them. But then I'd recommend getting her hormones checked, and making sure they are in normal ranges for her. Many cluster heads report a lot testosterone level, and it would be worth while, I think, to have it checked. MG

I think we are in agreement CHS, there are a lot of really bad painful things out there that can hurt us, but Clusters tend to top them all. And even though everyone has different pain thresholds, Clusters still come out on top and often by a considerable distance. I also agree that this is an important message to get across to people who don't have clusters, it's the vagueness of the wording that bothers me, and how it doesn't convey a complete picture of the Hell that comes with clusters. Try this scenario on for size. Let's suppose I'm an Astronomer, and I publish a discovery I just made, which is: 'Astronomers have just discovered the largest galaxy known to mankind. In fact, it is 4 times the size of the Andromeda Galaxy.' Now, as a non-astronomer reading that, I would think they found a pretty big circle of stars. But I have no concept at all how big the biggest galaxy is, or even how big the Andromeda Galaxy is. So the information doesn't really mean a lot to me. OK, it's the biggest. Cool. But, if they were to say, 'our galaxy is approx. 120,000 light years across, and Andromeda is 260,000 light years across - and this new galaxy is 4 times that big! It's 1,040,000 light years across!!' - now they are starting to put the size of the galaxy into some perspective. OK, I can't really grasp the distance of a light year, but I know it's a far bit. A quick Google search says it's about 5.9 trillion miles. It doesn't take much brain power for me to work out that I could line 8 Milky Ways up in a row, place them on top of this new fictional galaxy, and they still wouldn't touch the edges. NOW THAT'S BIG! Relating one person's pain to another person's pain is very difficult to do. We all experience pain differently and there is no level playing field. So trying to convey how painful a cluster attack is, is very difficult. But I don't think putting a vague statement out there is the best way of doing it. Especially when having the condition of cluster headaches involves so much more than just the pain. Just my 2 cents. Not trying to change the world. MG