MoxieGirl

I agree with you CHS, they are both bad and no pissing contest required. My heart goes out to anyone with either condition. The reason I'm trying to get an understanding of this is so that my friend can have a reference point to what clusters are like. She knows what TN is like to have, although not first hand thankfully. She knows I have bad pain, she knows it is the same nerve that plagued her mother for years, but in the back of her mind is always that thought that nothing compares to what her mother went through, not even my clusters. The advantage of my clusters is that I don't have the pain 24/7 like her mother did. And although I'm not in pain all the time, I struggle to get her to understand that it is still quite horrific to live with. Ironic isn't it, I can write all these great descriptions of the pain that everyone who has it, or supports someone who has it, can connect with. But I can't get my own best friend to understand. Gotta laugh. MG

Hi friends, I've been having a number of discussions with my house mate about the comparison of clusters and Trigeminal Neuralgia. If you don't know, clusters trigger (attack?) the Trigeminal nerve, but tend to be in the top of the head, around the eye, forehead, etc. Trigeminal Neuralgia (TN) also triggers the trigeminal nerve, but is lower down in the face, the jaw, that region. But can come in clusters, although TN can last days, weeks, months without ANY pain free time, but rather it may come and go in waves, but never completely leave. I've not read anywhere that describes TN as 'the worst pain known to man', as I often do with clusters. But the descriptions I read about it certainly put it in the same class as clusters, and potentially arguably worse. So, this is my question. Which is worse? Thanks, MG

Thanks everyone, HeadacheRelief - I have migraines too (I think we've talked about them at some point). Once, I had a really bad migraine, one of those that last 3-5 days. During which time I got a bad cluster attack. The cluster was so strong, that it shut down the migraine for about 2 hours. So, right in the middle of days of pain, I had a burst of really bad pain, then was pain free for 2 hours before it started again. Big hugs

Thanks for your comments guys. I often say it is like describing the colour red to someone born blind. Thanks for your pain comparison Ann, I shall remember that. I once read, either on this forum or our sister site, that someone had dislocated his knee playing football, and didn't realise it for 3 days because that level of pain didn't even register in relation to the pain of cluster attacks. It was about a 0.5 on his 1-10 scale. There is a book, and one day I'll find it and read it, where a bug specialist guy went around getting himself stuck and bitten by every bug on the planet he could find, and then described the pain he felt. It was sort of a way of classifying how painful different stings were. I think that's about the best we can do with cluster headaches. As mentioned, each and every persons 1-10 scale of pain is unique to them. But if we can find a common item between two people, and say... 'Ah, OK, so a broken arm ranks 10 on your ten scale. Well, for me a broken arm is a 2, and a bad cluster is a 10". That at least then gives them something to compare it with. Although I've not given birth myself, I am told giving birth is about a 3 on the cluster scale of 10. I once had kidney stones, and they are about a 4 or 5 compared to clusters. I've mentioned before that I'm a masochist, and I've worn out sadists who were inflicting pain (in a good way) on me. They have literally had to stop and recover, at which point I was just getting into the experience. That kind of pain, the level of pain that makes most other masochists I know wince, is about a 2. I actually have 3 pain scales. My headaches have their own 1-10 scale. The my migraines have a 1-10 scale, and the 1 of a migraine is about the 7 or 8 point on the headache scale. Then I have the cluster scale, where the 1 is about a 7 on the migraine scale. But the cluster 10 scale is much longer than the other scales, the pain range is much greater. Also, my very worst clusters hit a 14 or 15 on the cluster scale. Sorry, my best friend also tells me I over think, over analyse things. hehe MG

Hi Ann, Welcome to a site that has some of the best people in the world. It's a shame it too clusters to get them all here in one place. I'm curious, did the doctors also rule out Trigeminal Neuralgia? I'm not an expert, but clusters tend to go completely, then come back. TN can hand around for days, weeks, months, and seem to fade in and out in intensity. I have a couple friends who had it. Both Trigeminal Neuralgia and Clusters attack the same nerve in the face, the Trigeminal nerve. I would say that if there were anything else out there as painful as clusters, it would be TN. I understand that anything as gentle as a breeze on the face can trigger it off sometimes. Anyway, seems you've already gotten good advice on treatments and such. Big hugs, MG

You're very welcome ann. And actually, this description only fits about 20% of my attacks. They are often so very different from each other, I'd have to write a book to catalog them all. But I wanted to write a piece that protraid the general experience.

You can just be sitting there, reading a book or relaxing, as I was a bit ago. Without warning, a sensation flows from the top of your head to your heart. It is as if someone has just poured ice cold water into your body, but it doesn't feel cold. Rather the sensation of a negative energy source flowing through you and downward, between the blood vessels, around the brain, over the eyes and into the neck and chest. A heart stopping, sinking feeling. Instantly, your body reacts. The heart starts to race, nerves stand on end as all fight or flight reflexes kick in, but honestly, where are you going to run to? Your mind races. Was it just a pulse? Is it a shadow, come to say hello? Or, am I a breath away from agony? When I get these sensations, I picture a mighty sledge hammer, perhaps Thor's legendary Hammer, smashing a walnut. Only it's not a walnut. It's my head, and Thor's Hammer is a cluster headache. Then the worst thing possible happens. Pain. Pure, unadulterated, straight from the source; pain. It's not like putting your finger into a power socket in your home. No, not like that AT ALL. It is like throwing your whole body onto a power generator, and getting it raw, 100%, right from the source. That is how the pain of a cluster differs from other forms of pain. And trust me, I know. The pain consumes your thoughts. It shakes you, it rocks you to the core. It starts like a punch in the eye, before a red hot poker is jammed into the socket, right between the eye and forehead. Time no longer exists. How long have I been slamming my fist into my skull? Is there anything harder? That book? A bat? Anything to distract me from the THIS pain. Now someone has attached a drill to the red hot poker. It is spinning, ripping, tearing at my flesh, piercing my mind. My nose is running, my eye streaming and drooping, but I'm not crying. Not yet. It hurts to much to cry. Besides, the time for crying is later. Then the pounding. Pulsating. Hammering on my forehead and temple. I can see the demon in my mind's eye, the beast that terrorises my life. It is dancing its way from my eye socket to my temple, laughing and singing as it goes. Its feet leaving swirling burn marks in my brain. I gasp for breath. I walk, I pace, I toss and turn, I bang my head on the wall. The demon merely laughs. People in the world could have been born, grown old and died for all I know once the pain finally subsides. It takes a moment to find myself again. To remember where I am, what day it is, and if I really care. All I know is that it's over. The pain has left virtually as quickly as it came. And I feel a massive vacuum has taken its place. A void sucking all sensation back into place. An emptiness and relief nearly as intense as the pain. Then the tears come. In great waves they come. My body shakes, my thoughts turn into a bizarre mixture of panic and relief. Fear and anger. I can honestly say, I long for death. Eventually, my body quiets. My mind calms. And I begin to wonder, when will the next attack come? 5 minutes? An hour? A day. A week? How long do I get to enjoy sanity for, this time. MoxieGirl

Thank you didgens.Â

One of the best articles I've read in a very long time!

The Beast. By MoxieGirl I am walking down a path which runs along the bottom of a cliff face. It is a nice walk, apart from the Beast tracking me from the top of the cliff. It keeps looking over the edge, watching my every step. I know it's going to pounce. Just don't know when. It's 2am, and I'm up late with friends, listing to music, laughing and drinking. To all present, it appears to be a good time. Except for the Beast. Watching my every moment, ready to pounce. Death resides in its claws. Blood in its bite. It is longing to attack, to rip into my mind and tear into my flesh. But when. Now? In 5 minutes? An hour? Tomorrow? I try with all my might. I try to use the smile on my face to hide the fear, laughter to mask the panic. But what are you to do when such terror is a heart beat away. OK, I survived a few more steps, a handful of heart beats, a short count of breaths. What next? When will the Beast drag me back down to Hell? A Hell I know all to well. A Hell with a room reserved just for me. The Beast peaks out from behind a rock. A claw stretches out over the cliff's edge. Is this it? I run, but there is no running. I try to hide, but there is no hiding. The Beast is within Me.

Big Hugs Spiny. My trust in doctors has dropped a lot since I had to become an expert on CH and found out doctors know so little. Hope pf days return. xx MG

I shall apologise for this post at the onset. But I'm sure it rings true with other people too. My best friend claims she understands what I'm going through. Her mother had trigeminal neuralga after all, she knows what bad pain is like. However, I get chastised if I dare mention how bad my clusters are in relation to other people's pain, especially hers! I had stopped doing it. Months ago after such a conversation I came to understand that to each person, their worst pain ever is the worst pain in the world. After all, there are no universal pain measuring devices (which I wish did exist). And I DO really understand that principle, always have. But when we were watching a show tonight where a baby was being born, and she says 'you've never experienced pain like child birth'... How could I NOT respond!?  .... 'but, actually I have.' Yes, OK, child birth has its own unique attributes different from clusters, and no, I have never experienced that. But she can't seem to conceive that childbirth ranks somewhere between a 3 and 5 on the KIP scale (from what people have told me). I so hate the 'my pain is worse than your pain' argument. It is so pointless. No pain is worse than a cluster (just kidding). But, clusters ARE bad, and just because someone can conceive of something worse than what they've experienced doesn't mean their worst pain cant be a drop in the bucket to someone elses. Rant over. Gonna try and put it behind me and sleep. On the good news front, I've not had a bad cluster in nearly 2-1/2 weeks! A couple very short stabbing pains, but we won't count those. It's nice to go several days in a row without a visit from the devil himself. Hugs to all, and to all a good hug. MG

This topic has come up in a few posts, and if you are like me (who mostly read the General and Share your Busting Stories pages) you may not have seen the thread started on the topic in the Theory page. So here's a link and a nudge to go have a look. PLEASE DO NOT POST TO THIS THREAD. FOLLOW THE LINK BELOW AND POST. Eating - or not eating - before busting. http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1369754414 MG

Interesting how different clusters are for different people. For me, ice (or anything cold) is a trigger. Having a KFC Krushems will give me a cluster for sure! Far to cold. But, if you want to make a REALLY cold ice pack, here's how. Put a mixture of Water and Alcohol (e.g. Vodka) in a zip lock bag at a ratio of about 50/50 (maybe 60/40 in favour of the water), and freeze. Well, attempt to freeze. The alcohol doesn't get cold enough to freeze, so the water turns to slush, slush that is colder than normal ice. And, because it's slush, it moulds to the contours of the body better than hard ice. I usually double-bag mine with 2 zip-locks, making sure to get as much air out as possible. MG

CHf, do some research on 'ice pick headaches'. I get them. They are more frequent when I'm getting a lot of migraines, but I also experience them around clusters. They are short, very short, 1-5 seconds usually. I describe them as a lightning bolt across the forehead, although the laymen's medical term is ice pick. They are like BAMMMM!!! then gone. http://headaches.about.com/od/otherheadpain/a/ice_picks.htm MG

A really interesting question (not silly at all). It would great if we could find a perfect, cluster free spot on the planet. OK, now I'm just being silly. But it might be interesting to see if there are any seasonal patterns. Elevation, climate, all those things could be looked into. However, I tend to agree alleyoop, the only hard and fast rules with clusters is that there are no hard and fast rules. I tend to say it this way: No two cluster sufferers are exactly the same, and just as soon as you start to figure yours out, it changes. MG

Hi, First off, my heart goes out to you during this time. There is a recent thread about crying being a CH trigger, which then also talked about strong emotions triggering attacks. This is certainly true for me. When I cry, especially emotionally, I'll get an attack. Stress, yes, a definate trigger. But I also think strong emotions. Cluster heads and migraine sufferers are very sensative people, and all kinds of things can trigger pain. I'm sure that with time, things will settle down and go back to normal, well as normal as they can be with clusters. Hugs Moxie

I often think this beast is as hard, if not harder, on the ones we love. I will confess up front that I'm not currently in a relationship, but was when this Hell started 6 years ago. Some ideas that might help. Do be prepared. I know that is difficult with the randomness, and severity of these types of attacks. But always be thinking what if... What about having a can or two of Red Bull on hand? Get a small cool box you can keep them in with an ice pack to keep them cold. Give your partner something to do. I've often heard the comment 'I feel so helpless, I can't do anything but watch my partner suffer'. This will lead to frustration in a big way! Helplessness is tough to deal with. When in a relationship, I'd ask the person I was with to get me a glass of cold water (before I knew the wonders of red bull), guzzle it down, and ask for another. Ask to be held, ask for a wet wash cloth to put on your face. Get them doing something, anything, that makes them feel like they are helping. If they help, they feel empowered instead of a victim too. And after the beast has left, thank them for their help, understanding and patience. I know. We are the ones suffering and yet have to consider the feelings of those around US! You feel like it should be the other way around, but by getting them involved you are laying the seeds for support and understanding. Anyway, just my 2 cents. (or 2 pence, depending on where you live - hehe) MG

Hi Karen, and welcome. How are you getting on with things? Are you finding the information you need? Hugs, MG

Hi Brad, Hope the bust goes well. I have a feeling you are going to be amazed! I'm sure, as you've been reading a lot, you won't be expecting a total PF cure after one bust. But I'd expect you to see some very positive improvement. MG

Hiya, My heart goes out to you for your loss. Yes, crying, strong emotions and shocks are all triggers for me, but espeically crying. Doesn't have to be one of those gut renching cries either, a fairly mild tearful moment can trigger a cluster. Was watching the movie 'Get Smart' for the first time, and there is a scene where someone gets hit by a car, totally out of the blue. The shock of the suddenness of the event triggered a cluster. I read a really good article once about how (it is believed) migraine suffurers have a very sensative nervous system, so strong smells, changes in weather, emotions, etc. can all trigger migraines. That's me to a T. 50/50 chance if one of those events will trigger a cluster or a migraine. hugs MG

I love Canadians. I have at least one good friend from there (hard to keep track these days). I was born in Iowa but now live in England, and most Brits think I'm from Canada because of my soft accent. Here is my favourite movie clip about Canada (from the movie Canadian Bacon). MG

Hi Didgens, May I ask how old your son is? Migraines can be hereditary. The ones I have run in my family. All my siblings have them and our children. I've had them pretty much all my life. Am pretty sure Clusters (including I presume SUNCT) can also be hereditary. If they are proper clusters, I doubt (others correct me if I'm wrong) that Advil or Claritin will have any effect. Indomethacine works well on SUNCT, so perhaps there are some similar ingredients there (don't know). Indomethacine has no effect on clusters (as a rule). I include 'as a rule' because in my experience, no to cluster suffers are alike. So I'm not going to say that Advil, Claritin or putting pressure on the roof of one's mouth won't help. But I've not heard it before as a general rule. If it works, go for it. I would recommend getting oxygen and plenty of Red Bull to start with, and a doctor who has a clue to what clusters are and the best meds they can provide. MG

I think that as a society, we are used to relying on doctors to provide the answers and cures to our bodies ailments. But there are some things still so rare not all doctors understand the best treatment for them. And even if they grasp what clusters are, they are locked into attempting every single possible standard medicine they can, hoping that one will work for their patient. I spent 5 years trying the doctors medicines, going from extreme side affect to extreme side affect, and my clusters only got worse. I wish someone had come to me and offered busting way back in 2007. Because then, 2007, 2008, 2009, 2010 and 2011 would not have been the living Hell that they were. Dec 2011, Magic Mushrooms saved my life. I made the mistake of leaving mushrooms to my last resort, they should have been my first. MG

Thanks Spiny, Have contributed and shared.