MoxieGirl

Thank you everyone for your feedback. I regret that I haven't had time to put into the work I have bouncing around in my head on this topic, but hope to put my ideas on paper soon. I've spent a lot of time reading over the KIP scale, and on closer examination, I think it is a good scale and most people can find a point or two on it where they can relate their pain too. I think we all agree that a single scale will never be right for everyone. What I want to do is broaden the scope of the KIP scale. I think a KIP number works really well (in many cases) when cluster heads are talking to cluster heads about their attacks. I think it could be expanded a bit so that it makes sense to non-cluster heads. I see one of our biggest challenges is getting those who don't have clusters to understand what a cluster is like. And I don't think the KIP scale does this. So if the end result is 2 scales, a KIP scale that respects the creator of it and is used on these boards, and another scale that translates our pain to commoner, then that would be fine. Or if we end up with one scale that can do both, that would be cool too. As soon as I get a spare hour or two I will compile my thoughts in more detail. MG

Very good points Jeff, well presented (and not offended - from one data analyst to another)

Hi Sergical, Like you, I started on this whole psychedelic medicine journey with a lot of nerves. With both seeds and shrooms, I started out small and worked my way up. Probably good advice with LSD too. I've been taking the seeds and shroom off and on for approaching 2 years now. It has really improved things, but not really killed the beast. So if things turn rough again (enjoying a nice period of pain free time at the moment) I may well try LSD next. Hang in there. Take it slow. I know it's hard, especially if you are getting hit hard. One step at a time is my advice. MG

I thought Bol-148 was still in a very early testing phase, and no where near production. Have to say, I'm with BeJeeber, Bol, Bol, Bol all the way. LSD might be very effective, and even with the tripping aside, I shouldn't have to resort to an illegal drug (in most countries) to find a cure. OK, so BOL may not be a reality at the moment, but one day. MG

The results are looking really interesting. I only have 37 respondents so far, and really want to get that number up closer to 100 if possible. What I'm finding interesting is that by asking about other pains, I'm seeing that not everyone's clusters are the same. The question about migraines for example. The vast majority rank them between 4 and 7, right where I would rank mine. But one person scored them as a 1, and a few people as 2s and 3s. I don't think this means their migraines are really mild, as the pain level of a migraine is pretty well established. But rather, their Cluster-10 is so far out there that migraines pail in comparison. I think when I get to developing the 1-10 pain scale of clusters, the 8, 9 and 10 are going to be pretty extreme, with only perhaps a percentage of the population ever reaching that level. I think some people's upper limit is what other people would call a 7 or 8. MG

Bump

Good thought Jeff, but the results are going to be averaged out, so at this point I don't think it needs to be that accurate. Have received 17 responses so far, and it is interesting how close many of the values are. For example: Most people rate 'Putting your back out' as a 6 or 7, with a couple of 4's. But there is also a 1 and a 2. So a wide range of experiences, but a clear majority as well. Something I've also been thinking about when comparing other pain to clusters. When I read about clusters, it is usually said that they are the 'worst pain known to man', or the 'worst pain known to medical science'. Interesting this word 'worst'. Perhaps it is just a way of saying 'most painful', without having the word 'pain' show up twice in a sentence 'most painful pain known to man' - reads a bit weird. But also, maybe worst includes things beyond just how painful it is. Compare it with a broken bone. I'm 40 something, and have never had one. (knocks on wood) But I have friends who have, and it hurts! But it is a rare thing, happening possibly a few times in most people's life (not taking into account people like Evil Knievel). So how does that compare with a cluster attack? If I had one or two cluster attacks in my entire life, it may score more or less the same as a broken bone. If I got 150 broken bones a year, they might score closer to cluster headache. I think there is an unavoidable fault when trying to compare clusters with another pain on an equal footing. That equal footing doesn't exist. Can't exist. For most comparisons, I hasten to add. Trigeminal Neuralgia might be an exception. Some of the things I think make a cluster attack 'worse' than other pains is the complete randomness of it. Its resistance to most traditional medicines. How long it last for, for those of you that have it lasting 1-3 hours. The side affects, PTSD, fear, anxiety, lack of sleep, regularity of it (random regularity, if there is such a thing). And also the utter lack of understanding of it amongst the medical community. For example, one thing that would reduce the 'worst' factor of clusters is if every doctor knew how to diagnose it quickly, and how to best treat it. Even taken psilocybin and LSD out of the equation, if doctors knew to give oxygen and injections to a patient on their first visit, that alone would reduce the 'worst' rating. Because instead of going years without being diagnosed, or wrongly diagnosed, people would have tools at their disposal to deal with the condition. OK, not the best tools in the world, but tools. Wow, where did all that come from? Shall get off my soap box now. hehe MG

So, woke with a bad headache yesterday that was quickly turning into a bad migraine. I thought I would try aborting the migraine with mushrooms. After all, it is past time for my regular dose anyway. That was my first mistake. Either mushrooms simply don't work on migraines in that way for me, or it was the cause of the migraine getting worse. So, a few hours later, when I reached a point in the pain that I had to try something else, I took a Relpax (Eletriptan). That might have been my second mistake. It wasn't long before the migraine turned foggy, and then finally went away. But, my stomach felt like (and still feels that way the next morning) someone is trying to punch their way out from the inside. May have just been the Relpax, as that isn't my favourite triptan, but it is pretty fast acting. So, triptans for migraines, mushroom for clusters. MG

Hi, You may already know that I'm interested in understanding pain levels that are associated with cluster headaches, and how they compare to other painful events we experience. To this end, I have created a very short survey that compares cluster headaches to other aches and pains. My goal is to get an idea of how other 'things' compare to clusters in the general cluster sufferer demographic. I would be very grateful to have 2 minutes of your time to complete this survey. Honest, it won't take long. Pain Scale Survey Thank you, MG

That's an interesting point Jeff, although you may not realise you made it. The Richter Scale for earthquakes is a very interesting scale in that an level 5 earthquake isn't just one notch up from a level 4, it is 10 times larger (more energy) than a level 4 earthquake and so on up to level 10. So, a 1.0 on the Richter scale is equal to 480 grams of TNT, whereas a 10 on the Richter scale is equal to 15 gigatons of TNT. I like the terminology used with the Richter scale, and maybe we should adopt something similar. 1 - Insignificant 2 - Low 3 - Minor 4 - Moderate 5 - Intermediate 6 - Noteworthy 7 - High 8 - Far-reaching 9 - Outstanding 10 - Extraordinary MG

shocked, VERY cool looking app. Are there plans to make an iPhone version? Could I send you the spreadsheet I use to track my headaches & clusters? Might give you a few ideas. For example, in my tally of figures I have: Average hours sleptdhaven't for awhile now. But for those who get a lot of attacks at nice, this might be useful). Number of clusters this year How many triptans, anadin, and other meds I've taken. How much, and when, I've busted My average pain free period for the year. Longest pain free period for the year. Alcohol intake (for me, vodka aborts migraines, so I track if I've had alcohol to stop a migraine - alcohol medical - or just drank cause I wanted to - alcohol recreational. Then I track my average units per week. That all may be outside your scope for the app, or some of it may already be there. But just some ideas. I think an app like this has been needed for years, well done. MG

Really loving this thread. I've got a very busy week this week, but I want to (in the next few days) combine all the various 1-10 scale descriptions listed so far, and produce a 90% draft of an all-encompassing scale. We can then tweak that a little more, and I have an idea or two to further enhance the graphic scale that may help too. Then, I propose we present it here (yes, there is a survey option, but we may have more flexibility with something like Survey Monkey). And then once we've gotten more comment, present it on our sister board. Not sure why, but I think it is going to be a harder sell there, so want to make sure we have answers for any push back we might get. What do you think about a survey listing a bunch of common ailments, injuries and life events, such as giving birth, breaking a bone, having a bone re-broken, dislocating a knee, kidney stones, headache, migraine, etc. And invite people who've had one or more of those to place them on a 1-10 scale of pain, where 10 is their worse cluster ever. What other things could we add to this list? MG

I often say that if I had a super power, it would be the ability to touch someone and let them experience a 5 minute cluster attack. None of us have that ability, and maybe that's a good thing. So instead, we need to use words to describe what we are feeling, or videos, or screaming or any other tool we can possibly come up with to convey the message. Any and all are good. One of the devices people, and doctors, understand is a 1-10 pain scale. So if we can define a 1-10 pain scale that is roughly right for most sufferers, and describes the levels of pain in ways most people can relate to or imagine, then we are adding another very power tool to our toolbox of descriptions. It will also help us share with each other, so we know how badly someone is hurting within the community. Is it going to be perfect? No, labels are never perfect. But if it gives a good general idea, points people in the right direction and invites communication, then that is a good thing. Not the answer to everything, but a step in the right direction. And I agree with you Spiny, the word 'headache' does us more harm than anything else. And that is a topic that should be addressed, and will also help us in getting this message across. But right now, with this thread, we are focused on the pain scale. MG

Potter, you have a way of leaving people speechless, but OMG! I think that puts our little pain scale discussion into agonising clarity. MG

Hi didgens, Thanks for your input. It is a difficult thing to grasp, or explain, the sort of the pain these beasts produce. You think you should black out, and I wouldn't be surprised if some people do. I also wonder if, as clusterheads, we build up a pretty high pain tolerance. Which would mean our perception of the pain would grow and change over the years. I know that I can take amazing levels of pain now, and barely flinch. Things that would have had me in tears before clusters came into my life. We adapt to survive, and we (clusterheads) adapt to pain. Have you read my Thor's Hammer post? It may help. http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1375472809 Hugs, MG

Yes, well, this is where it can be a challenge, but not impossible. If several people have given birth, and have clusters, and agree that giving birth is a 3 or 4, then that becomes a valid comparison. Yes? We'll probably be hard pressed to find a clusterhead whose cut their arm off with a small knife. But broken bones and dislocated joints will find a place on the scale. And things like kidney stones (I'd rank as a 5), migraines, headaches. What about having a bone re-broken because it started to heal wrong? A root canal, that must be a 5 or 6, or maybe just a 4. Back pain. Back pain would be an excellent comparison. I've put my back out, and the pain is phenomenal. Excruciating just isn't the word for it. It must be about a 7. One description I've often used successfully. Have you ever gotten a muscle cramp in your calf muscle? You know how it hits so suddenly it takes your breath away? The pain is ultra intense, you can barely breathe, you can't walk, all of your focus is on that pain and finding a way to stop it. Now, take the most painful muscle cramp you have ever had, and increase the pain 10 fold and have it last for 3 hours. Then relocate that pain to your eyeball, and you are beginning to understand what a cluster is like. However, I think there is an element to clusters that make them different from other forms of pain. With most injuries, the pain travels up the body, through the nervous system to the brain. There is a time delay, and distance. I've said before, and not afraid to admit, I'm a masochist. Yes, in the very real S&M way. There is a form of pain I adore, I seek it out and cannot live without it. But it is SO, SO very different. I have had times where a sadist was inflicting all kinds of extreme .... um .... 'play' onto my body (for lack of a better word). But because it was on my body, I am able to completely separate myself from that pain. I can literally leave it at the source, at the impact point, and not let the sensation travel to my mind. I can turn it off. You can't with clusters. I've earnestly tried all of my techniques. The pain is instant. It is raw from the source. All other forms of pain is like touching a bread pan straight out of the oven with your hand, a cluster headache is jumping right into the hottest part of the oven. So we always have to remember that comparisons will only go so far. But I think they are important, and will help convey the message. I also think they will help supporters. So many supporters watch their partner go through a cluster, and feel so very helpless. I think part of that is because they don't, they can't, understand what the person they love is experiencing. If we can quantify that, put it into terms they can relate to, that should help break down a barrier. With understanding comes better openness and communication, then more compassion and support. I think having an easy to understand, easy to remember and use, and non-clusterhead friendly pain scale is vital. MG

I REALLY like those descriptions. They don't fit my clusters perfectly, but they aren't going to, nor is that the goal. But, I can relate to something at every point, and if I said I had a level 4 cluster, we would all be right there knowing exactly what that felt like. I really like how 'highest level of pain conceivable' is at level 7. You reach that point and think, 'it can't possibly get any worse'. But it does, and it does and it does... I've read it twice now, and can't find fault or something I'd want to adjust. OK, maybe some of the description in 2 I'd move to 3, but it is also true in 2 sometimes. I think there can be a thin grey line between some of these. I know that even when I'm recording numbers from my own pain scale I might call one cluster a 5, and the same sort of thing a 6 the next day. Maybe it lasted longer, or came on sharper, but the pain might have been more or less exactly the same. Do you ever reach a point where you are afraid to get up and walk around or even move? Afraid of disturbing it while it is at its worst? I hear people saying they go running, or take a hot shower, or a cold shower, or do some other activity to abort or reduce the pain. But for me, there are times when I'm terrified of moving. The pain has so captured 100% of my world, that the desire to get up seems impossible. If my best friend comes in and says 'go get yourself a cold drink', I can do that. But not without someone prompting me. It is almost a battle of wills. I wonder if something along those lines is fitting on the scale, if it is just more than me. A few people have told me that giving birth unaided is a 3 or 4 on the pain scale. I have had kidney stones, and I'd rank them about a 5, although at the time (long before clusters) they were the worst pain imaginable. Would it be worth trying to include some comparisons? A 4 is like a broken bone (although I've never had a broken bone). Or an 8 is like having your leg cut off without anaesthetic. I don't know, maybe not. MG

Hi Purple, Excellent input! I really like the descriptions that get away from things like 'really hurts', 'very painful'. These are quite vague and can mean different things to different people. Although yes, I do have some in my descriptions of my pain scale, but that scale was written for me. Now that we are opening things to a wider audience, it needs rethinking. I do also concede that suicide is a good indicator. I think descriptions along the lines of: Remembering the headaches and migraines are there just to put the intensity of the clusters into perspective, doesn't imply all clusterheads have headaches or migraines. But the shadow line can be no pain, mild pain like a headache and all the way up to, and including the start of a cluster. But also, shadows are unique to clusters, so are tied to that pain line. I don't get shadows with headaches and migraines. Are we starting to get more all-inclusive now? MG

Purple, I love some of your descriptions, and agree with your perception of shadows. MG

Hi again, I've re-titled this thread as the subject has changed a lot. Might draw in more discussion. OK, so here is my pain scales. I have a 1-10 scale each for headaches, migraines and clusters, and the pain levels tend to over lap some (usually around the 7 point). This isn't to say that a headache progresses to a migraine, or a migraine progresses to a cluster. Sometimes a headache will progress to a migraine, and sometimes I'll have a headache as a precursor to a cluster. But in essence these are 3 different types of pain. In the same way as period pain is not the same thing as contractions when giving birth. I try to define my pain levels more by what it does than how it feels. So my 1-10 on the cluster scale looks like this: It is also worth pointing out, as weatherman says, it can sometimes be difficult pinpointing if it was a 1 or a 2. So I tend to group mine a bit, 1 and 2 are quite similar, 3 and 4 are quite similar, but a 1/2 is definitely not a 3/4. 1 - Short and intense, similar to an ice pick headache but longer and more in the eyes with side affects that can take 20-60 minutes to recover from. Side affects being, feeling lost, out of sorts, crying, shaking, off balance, tired, etc. The body temperature may also go up and down very quickly. 2 - More intense and longer than a 1, perhaps several minutes. Takes my breath away, or makes me stop what I'm doing to catch my breath, eyes may water. 3 - Longer lasting than a 2, 15-30 minutes, often makes me cry (this was written before busting, as I rarely cry now). Grabs my attention and makes me stop what I'm doing and find a quiet place, or at least away from others. Can wake me from a deep dream at night (or become part of the dream), takes an hour or so to fully recover from side affects as listed in level 1. 4 - Potentially equal to child birth (although I don't have person experience), Can last 5 minutes to 40 minutes or longer, I will be very shaken, cry, body temperature all over the place, eyes water, nose runs, hands clasp to area of pain, can't stay still. 5 - Pain is VERY intense, takes most of my focus, difficult to get myself a drink or do anything but rock back and forth, hands clasped to head. 6 - Starting to approach serious pain now, curled up in ball, "why me" feeling, when will this end? 7 - Quite similar to 6, but typically lasting longer. 8 - Pain goes ultrasonic - there is a sense that I could perceive or almost hear the pain before, but when it reaches level 8, the pain (or the demon) becomes invisible, goes beyond my ability to perceive it, but is 1000 times more intense. Imagine hearing a very high peached squeal that hurts and gets higher and higher in pitch. Eventually you can no longer hear it as the pitch goes outside our range, but the pain is still there and getting worse. That is an 8. 9 - Suicidal. Can't breath, can't think, torrents and waves of pain, nothing exists in the world except the pain. All consuming. 10 - The pain has exceeded my ability to comprehend it. Feels like the top of my skill is being pried off with a crowbar, eyes being pulled out and burned, a hot poker in the eye would be a relief at this point in comparison to the pain. I know I moaned about the KIP scale referencing suicide, and then I go and have it in my scale. Oops. My bad. Notice I don't mention shadows or headaches at all. As I've said, I've never associated shadows with pain, but perhaps I need to start calling the headaches I have before a cluster a shadow. Hard to tell as I have so many headaches, I never know if it is just a headache, or a cluster is waiting in the wings. My cluster usually (apart from the occasion with a preamble of a headache) come on WHAM! For me a 40 minute cluster is a long one, so my 1-3 on the scale refers to quite short clusters, lasting a minute to 10 minutes usually. For those of you with proper clusters, you probably can't imagine a cluster lasting 5 minutes. MG

Prior to busting, I was getting 1-5 attacks every 2-3 days. I had nearly 260 cluster attacks that year, with the longest cluster free gap lasting 11 days. Started busting and my PSTD went away after the first bust. 20-30 minutes of crying after every attack takes a lot out of you when you are having 250+ attacks a year. The following year, my clusters eased and reduced to 1-2 a day, occasionally 3, and very rarely 4. Also, I had 3 or 4 cluster free gaps of up to 23 days, and 2 weeks without an attack was quite common. Busting gave me my life back. Also, the year prior to busting I had 43 migraines. The year following, 3. MG

Here is a copy/paste from Batch's description of a shadow: Here is the full thread: http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1374772231/1#1 My clusters come on, and then leave, in a number of ways. Sometimes I get what feels like a normal headache, it may last 1-3 hours and turn into a cluster. Once the cluster is gone, all pain is gone. Sometimes the cluster comes on in a WHAM style, hitting me in the eye out of the blue. Sometimes a cluster ends, and leaves me with a headache for 1-3 hours. So, is it these headaches that come before, or linger afterwards, what people describe as shadows? For someone who gets a normal headache at least 5 days out of 7, I can't tell the difference between a shadow (using that description) and a normal headache until after the cluster raises its ugly head. To me, a shadow is a foreboding, a presence in my mind, of the demon. But perhaps this is PTSD, and not part of the cluster at all. This feeling can last for days, but produces no pain. So perhaps I need to rewrite my definitions of what a shadow is. MG

Hey Purple, You know, your so very right, in may respects. I have spent quite a bit of time thinking about the KIP scale today. I even graphed it, or at least my interpretation of it. I then graphed the scale I use, and they are quite different. I was going to write a long post about them, comparing them, getting input from others etc. I think my biggest dislike of the KIP scale - and that is a strong word, but bear with me - is that Shadows are included on the scale. For me, shadows are pain free and don't feature on my scale at all. But while researching the KIP scale on our sister board, I read a nice post by Batch explaining shadows, and I have a better understanding of why they are on the KIP scale, and I dislike it a lot less now. I still tend to think the KIP scale is too shallow at the 1-4 end, and rises too steeply into full pain at the 7-10 end. My scale is closer to a 45 degree slant than an inverted bell curve. But all that is really neither here or there. It is a reference point about something that you really can't put a reference point to - an individuals pain level. Like you say, it is an indicator to other people to how bad the pain is. A commonly understood 1-10 scale of pain. At about this point, my dislike has turned to appreciation. And really, you couldn't have said it better, at the end of the day does it really matter? I've said it before, and I shall say it again. I am an expert at over thinking things and often strive for a much higher accuracy in things than is ever required. MG

Kip scale.. I think I might start a new thread on the KIP scale today. I wonder if 'suicide' or wanting to commit suicide is the best description for a level of pain. It almost justifies that desire - is that what we really want to promote? Yes, I know that is often how people feel at that level of pain. But I can honestly say, I don't think about suicide - for me it is a case of wanting to cut my head off to separate myself from the pain. If my foot was in that much pain, I would have a desire to cut my foot off. OK, yes, cutting my head off would be a final act, for sure. But its not that I want to 'die', I just want the pain to stop. And I wonder if other people think the same way?? MG

Hi dainbread, I hope at the end of my post you'll get the feeling like you're not alone. I have daily chronic headaches - usually having a headache 5 days out of 7 and my longest ever non-stop headache lasted 7 months. These headaches started at the same time as my clusters 6-1/2 years ago. I have migraines, which run in my family, and I've had them my whole life. Sometimes I go years with only 1 or 2, but when the clusters started, my migraines ramped up to 40-60 a year. A bad migraine for me can last 5-7 days if the triptans don't work. On top of all that, I have the distinguished cluster headaches. I've been chronic since they started Jan 2007. I typically have between 150 and 250+ attacks a year. My clusters routinely switch sides, about about 60% are on my right side. In 2011 I had over 40 migraines, and was getting up to 5 clusters a day every 2-3 days, and this had been going on for months before I turned to this site and started busting. To abort my migraines, I would first reach for Migraleve (codeine and paracetamol), if that didn't work, Zomig, then Replax, and if after a few days none of that worked, then 6-9 shots of vodka straight up. The vodka so far has had a 100% success rate of stopping migraines with no hangover the next day. But it is my last resort. Then, I found mushrooms. Since busting, my migraines are down to 3 or 4 a year, and are typically only 1-3 days. On the very rare occasions I now take a triptan, I treat it as a bust, in that I wait a full 5 days before busting again. Have you tried Indomethacin for the rebound headaches/migraines? I know that I was getting bad rebounds from all the Anadin I was taking, so switched to Indomethacin for a few months, which reduced my overall headaches quite a bit. Before that, my headaches would last all day or longer. Now they are typically less than 6 hours. MG