Purple

Great ! Trying to find general descriptions, adding this (please gang, add your 2 cents or modify this draft and/or redress my poor English ) 1- Pain may come and go; First stabbings of an ice-pick like shots of pain 2- Pain becomes steady and (can be) rising fast; Breathing rythm increases; Great difficulties to concentrate, to go on working/driving/sleeping; Reaching for abort solution 3- Stabbing from the knife reaches deep inside the head; Need to isolate; Nasal occlusion starts/sinus pressure; If sleeping, impossible not to get up; Reaching for abort solution (kind of late); Sucked into a world of pain 4- Shutting off from outside world; Agitation; Hands to head; Moaning starts; Nose starts running, eye closes and tears run down 5- Unable to stop holding head; Rocks back and forth 6- Beginning of hell, starting serious pain; The "why me" syndrome sets in; Gets up and walks back and forth; Headbanging may start 7- Unreal, highest level of pain conceivable; Body sweating; Moaning and screaming; Total headbanger. This is hell 8- Reality starts to fade; Ultrasonic pain is beyond perception; Screaming becomes vain and turns into soft moans like ones of a dying person 9- Suicidal or thoughts that you are actually going to die; Reality has faded, this is another world; Impossible to communicate with outside world, even moans are left to soundless screams 10- Complete loss of senses; Exceeds capacity to comprehend; Fall in coma-like state (can last hours and does not provide any rest); Near death experience adding: I notice K5 lacks description... I see K5 as where either the abort solution starts working and I take the exit, either it's highway to hell foot to the floor (might run out of gas though). So maybe could be added at K5 ... idk... the edge?

Here are similarities I found in the 2 above proposed descriptions that I find describe well the ride, adding a few of my own details. I think we need a simple generalisation of the state. I think the first 3 lack such a generalisation. 1- 2- 3- 4- Shutting off outside world, agitation - could be childbirth (the 2 sound maybe similar) 5- Unable to stop holding head - rocks back and forth 6- Beginning of hell - starting serious pain "why me" (should be here) 7- Unreal, highest level... Body sweating, moaning and screaming, total headbanger. This is hell 8- Reality starts to fade - ultrasonic beyond perception 9- Believe you will die - suicidal (well... just a fact that we do reach that point, Moxie ) 10- Complete loss of senses - Exceed capacity to comprehend Fall in coma-like state that can last hours and does not provide any rest; pain still very high when coming out of it Near death sensation I would say near death experience, I think that's what it is

Cool :D, thanks MoxieGirl, and Thanks for that graphic, [smiley=tekst-toppie.gif] There are many common points in Moxie's and weatherman's description, except the "why me" which I would also put at K6. So I put forth that a shadow is not a cluster attack. We 3 seem to agree on that. Therefore there could be added a line for the shadows in your graphic. Or 2 lines for 2 types of shadows. I would range these from headache 10 (migraine 3) to cluster Kip 3, or 4. Reaches my perception of a Kip 0,3... I think this work can prove very useful to many to help identify their pain level and better define the cluster (and other HA) patterns.

Cool, I feel this is getting somewhere, I can relate to almost all you write. Everything except the "normal headache 5 days out of 7" part. I think if clusterheads share common symptoms, there are still as many as we are, and other particularities also. Moxie, you suffer migraines and other headaches too, so I can understand shadows becoming a mix up of all this and actually maybe triggering clusters in your case... I mean I can understand it becomes difficult to tell apart two different headaches, for I guess anyways a cluster attack always await only an invitation to dance from some other devil to master the floor. Obviously, this scale and definitions never were established very precisely, and not with a very wide assessment of sufferers. Maybe it's not very important, as Cassidy says, but still I'm interested in seeing this progressing, as I am also a little obsessed by detailling things. hmmmm, I don't think I agree with Batch that every shadow should be treated/busted. I agree with him though that there would be different types of shadows. Perhaps we should start by defining shadows, since the Kip scale consists of shadows for the first scales, and that's what seems weird. I think there are basically 2 types of shadows: those that are a pain that remains after an attack, and those that are more or less a building up of an eventual attack, like are the first sign of a cycle building up for most episodic. Some of these shadows, especially at begining or end of a cycle for episodic, we know will not develop into an attack. They are just there. At one point though, they do become a threat. As for the first type, they are generally manageable and can be throughout the day, but can get out of hand and climb up the scale fast. En résumé, je think that I'm saying... that a shadow is not a cluster attack, even if the pain reaches upscale. Yea, I would say that an attack and a shadow is not the same, and that a shadow can turn into an attack, but some shadows can be up on that pain scale but manageable or stable, so still not an attack. So an attack could start at say Kip 3, since before it was a shadow level Kip 3, but not an attack. Suddenly, management of the shadows fails and the shadow swithes to attack. I'd love to have anyone's opinion on that statement of mine Off cycle, I carry a pretty much constant shadow of Kip uhhh I would say 0,3 ;D no serious that's true. When the cycle is coming, the first week, it climbs to 0,9. When it reaches 1, it's an attack, it's growing and dangerous. Buuuut, I have shadows that I know won't grow of pain level Kip 3 easy. It's a stable pain. Won't grow. I've had these all day at work back then. So... that's me... you think we can get somewhere close to a common definition of shadows and get to some scale reform? ;D what's everyone's take on this???

River rat, I'm not sure you should up the dose. The effects you describe I had with 80 seeds. I don't know what others think, that dosage seem to be effective... I'm just not so sure about big doses anymore, had an issue with this with the paper lately.

very sweaty has always been a reality for me when reaching Kip 8-9-10, vomiting also, and I was surprised to find out most clusterheads here or on the other site didn't also feel that way. When I first tried the seeds, it got me to a point where I was sweating from everywhere and had to hold vomiting... and it started a slapback. We know the hypothalamus is involved in clusters, and the hypothalamus controls sweating, body heat, vomiting, as well as many other things that happen with the human bodies. The slapbacks are horrible, yes, but what this tells me is that it's hitting right where it should, and the other symptoms of hypothalamus too like sweating, body heat... My own experience with body heat problems (I mean off cycle) tells me that my hypothalamus is constantly deffective (but not to the point of triggering a cycle?? I don't know), and also the fact that other clusterheads generally don't have these symptoms tells me that the triggers of the same pain are not all exactly the same, the extent of misfiring of the hypothalamus is not the same for all clusterheads, but it's all misfiring of the hypothalamus. I'm really sorry to hear about your slapbacks, they seem horrible, but you may see it as good news: the seeds are acting. Unfortunately, it may need to be repeted, yes, a few times

haha same here shadows... while thinking of this on my side (just a little), I also wondered about shadows. I was going to say shadows are what is left of a precedent high Kip, and not a uhhh a new germ of pain. The other day, I had a Kip 5 that lasted 8 hours after my kip almost 9, but I was explaining to someone that I felt that for sure this wouldn't grow into a bigger attack. It was a stable pain. Not the same as when I wake up at night and rush for my abort solution because it's growing, like a horse au gallop, gee how do you say this... ok cool, same like a galloping horse. So the horse can be at Kip 1, but reaching 2 in seconds and.... geee is it ever long waiting for that water to boil for my coffee.  :'( Frightening... runs fast and heads in the wall... Kip 3... Kip 4 Ahhhhhhrghhhh! On the other hand, a shadow can easily be at Kip 3 and is not as frightening as this crazy horse. What is Batch's description of shadows?

...could be. They are more devastating for me now than they were 30 years ago, even if back then I had no means to lower the pain and actually went to Kip 10 most of the time. But I must say what compensates for this endurance loss and black cloud invading my thoughts is this board here. It really makes a difference to have support like there is here. You posted yesterday this is not a usual message board... that's right, it's much more than that. Hang in there and keep posting, I'm certain like most of us you can find some relief and especially be very glad you're off these terrible meds.

I know many clusterheads on our sister site have been checked for Vit. D levels in cycle and off cycle, it would be nice to try to gather that data, I don't know if Batch has kept a record of the data he was submitted through the years. Gathered data would be nice for any aspects of clusters, where we live, our levels... maybe a professional could get something out of this

MoxieGirl, no. For me, at kip 9, life really becomes a futile thing, not important, and start to think about my children who will go on living without me. I lose grip, I start to let go... and at Kip 10, the grip is lost and I resignate myself to the fact that I will die, I'm cut off from my life, I'm elswhere, and I actually experiment something that could be called near death experience where I see a bright white light. Don't have the strenght to get up and do anything to end it though, so I fall into somewhat of a coma. Not that the suicide part is that important, some people might not picture it this way. But for me, the revision of that scale is also for other people to have an idea of how strong the pain is, so I think, yes, suicide should be mentioned in there ... well maybe it's because I'm rather depressive to start with and maybe you're not and that's why I get to that and you don't? You had re-done the Kip scale 18 months ago, the link to it is higher on this thread here. I had the intention of working on this and starting a thread myself, but Cassidy's post stopped me. I thought she might have a point that, after all, it's not very important

I don't see anything about adverse effects or warnings about withdrawing, only this, which says in clear Relpax can cause rebound headaches and that withdrawal can be necessary Medication Overuse Headache Overuse of acute migraine drugs (e.g. ergotamine, triptans, opioids, or combinations of these drugs for 10 or more days per month) may lead to exacerbation of headache (medication overuse headache). Medication overuse headache may present as migraine-like daily headaches or as a marked increase in frequency of migraine attacks. Detoxification of patients, including withdrawal of the overused acute migraine drugs and treatment of withdrawal symptoms (which often includes a transient worsening of headache) may be necessary. But it says Relpax increases blood pressure, so if you cut off it, your blood pressure will go down, and since that's also what Verapamil does, I would consider reducing verapamil dosage. Actually, you should consult a specalist on this tomorrow if possible But I see no reason for not to try a SPUT if you took your last Relpax dose 24 hours ago and more

I didn't realize, yes, about withdrawing after 10 years, could be a concern and the best would be to talk about it with a doctor I guess... But from what I read here, I wouldn't worry too much about neither drug interactions nor about adverse effects from withdrawing. http://www.drugs.com/pro/relpax.html Although the abuse potential of Relpax has not been assessed, no abuse of, tolerance to, withdrawal from, or drug-seeking behavior was observed in patients who received Relpax in clinical trials or their extensions. The 5-HT1B/1D agonists, as a class, have not been associated with drug abuse. Concomitant use of other 5-HT1 agonists within 24 hours of Relpax treatment is not recommended (see CONTRAINDICATIONS). Ergot-containing drugs Ergot-containing drugs have been reported to cause prolonged vasospastic reactions. Because these effects may be additive, use of ergotamine-containing or ergot-type medications (like dihydroergotamine [DHE] or methysergide) and eletriptan within 24 hours of each other is not recommended The elimination half-life of eletriptan is about 4 hours While eletriptan has an effect on CYP2D6 at high concentration, this effect should not interfere with metabolism of other drugs when eletriptan is used at recommended doses. There is no in vitro or in vivo evidence that clinical doses of eletriptan will induce drug metabolizing enzymes. Therefore, eletriptan is unlikely to cause clinically important drug interactions mediated by these enzymes. The N-demethylated metabolite of eletriptan is the only known active metabolite. This metabolite causes vasoconstriction similar to eletriptan in animal models. Though the half-life of the metabolite is estimated to be about 13 hours, the plasma concentration of the N-demethylated metabolite is 10–20% of parent drug and is unlikely to contribute significantly to the overall effect of the parent compound. I'm pretty sure what this all means is you're pretty safe tappering off Relpax, they actually recommend it somwhere on this page, and that there will not be interactions with a SPUT, as long as it's been 24 hours you took Relpax last. Correct me if I'm wrong of course, anyone

you need to use any other help to get trough it, vitamin D regimen, O2, ice, heat, COFFEE (?) I don't know migraines... but maybe a SPUT would help since MM seems to help greatly the migraines, and if you check the thread on MM SPUT, you'll see apparently it won't affect your busting, and since it's very small dose, maybe you could do that before completely detoxed from Relpax. Hoping others will throw in their 2 bucks on this. Well it's hell (the detox period), but there are ways to tamper hell. Hang on

[smiley=thumbsup.gif] might be a hard road but it gets somewhere at the end. We're all with you on this dainbread. I'm certain better days are ahead, and keep posting, support is here

ann, welcome to Clusterbusters. I'm glad to see it gets you thinking. Your past experiences (and future), and your thinking, can undoubtedly be put at good use here, please keep on thinking and sharing. Together we can...

That's a good question. At first I thought: probably not Reading the symptoms, it's easy to see we clusterheads suffer also PTSD. That would be the 2nd form, the Avoidance type of PTSD, according to this link https://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001923/ Avoidance   Emotional numbing or feeling as though you do not care about anything   Feeling detached   Not able to remember important parts of the event   Not interested in normal activities   Showing less of your moods   Avoiding places, people, or thoughts that remind you of the event   Feeling like you have no future But there could be a link I don't know, maybe, I'd need to read more, but this from Wikipedia (PTSD) tells me there could be common grounds; Other studies indicate that people that suffer from PTSD have chronically low levels of serotonin which contributes to the commonly associated behavioral symptoms such as anxiety, ruminations, irritability, aggression, suicidality, and impulsivity.[18] Serotonin also contributes to the stabilization of glucocorticoid production. Dopamine levels in patients with PTSD can help contribute to the symptoms associated. Low levels of dopamine can contribute to anhedonia, apathy, impaired attention, and motor deficits. Increased levels of dopamine can cause psychosis, agitation, and restlessness.[18] http://en.wikipedia.org/wiki/Posttraumatic_stress_disorder :-/ :-? :-/ low dopamine, low serotonin couldbe related to clusters, but then again... Do PTSD sufferers have clusters? If they don't more than the usual ratio in general population, it would could show there is no link except both conditions show low serotonin and dopamine, but then again, I'm not even sure clusterheads have low serotonin and dopamine levels... probably, since we probably suffer PTSD also. Does the PTSD we suffer triggers more cluster crisis/cycles? Those are all questions Who has an answer? :-/ :question

nice description MoxieGirl yes, the worst in that story is that there is not an end to it... might be worst than the pain. ...imagine the soldier who comes home with PTSD... takes a while to get through it... maybe he (or she) won't... Now imagine that soldier knowing the return on the front could be in a couple hours, and again later... tomorrow, next week... actually, I'm not sure soldiers could take that. I wish more of the general public could read this

Hi dainbread and welcome to Clusterbusters. I don't think you will find many supporters of these pills on this side of CH.com The detox period prior to busting is usually and generally advised to all newcomers... I understand your situation though and I leave it to those who know about it about Verapamil... But any triptan will certainly see most people here tell you you have no choice of detoxing from it first, and that for two reasons mainly: possibility of serotonin syndrome, and blocking effect. Any triptan, busting agents included, will shut the door to more triptans for at least 5 days is what we usually advocate here. Correct me anyone if i'm wrong. What I find puzzling is that you say you wouldn't consider quiting Relpax but earlier you said: I don't know if your dosage of Relpax (Eletriptan) is high or low... I can't see me recommending that you bust while staying on Relpax, I think you shouldn't, but from what I see, it could be a possibility to try it, although I don't know when and how serotonin syndrom becomes a threat. I'm certainly no expert but I happened to be reading recently on mechanisms of action of mainly LSD, and from what I see, Relpax hits mainly one of the serotonin receptor the 5HT1b, and that receptor is not specified as a receptor that LSD hits. It could be hitting it also, but it doesn't seem to be one of the main ones. Relpax seems to touch mainly one serotonin receptor, and also almost not touch the dopamine system whereas LSD does. here are my referrences: http://en.wikipedia.org/wiki/Eletriptan#Mechanism_of_action Eletriptan is a serotonin agonist. Specifically, it is a selective 5-hydroxytryptamine 1B/1D (5-HT1B) receptor agonist. Eletriptan binds with high affinity to the 5-HT1B, 1D, 1F] receptors. It has a modest affinity to the 5-HT[1A, 1E, 2B, 7] receptors. And little to no affinity at the 5-HT[2A, 2C, 3, 4, 5A, 6] receptors. Eletriptan has no significant affinity or pharmacological activity at adrenergic alpha1, alpha2, or beta; dopaminergic D1 or D2; muscarinic; or opioid receptors. Interactions: The drug has a relatively low potential for interactions. Notably, it is unlikely to interact to a relevant extent with beta blockers, tricyclic antidepressants and SSRI type antidepressants. Strong inhibitors of the liver enzyme CYP3A4, such as erythromycin and ketoconazole, significantly increase blood plasma concentrations and half life of eletriptan. Ergot alkaloids add to the drug's hypertensive effect.[4] b]LSD[/b] http://www.heffter.org/docs/hrireview/02/chap5.pdf Other drugs, such as lysergic acid diethylamide (LSD), bind to a variety of receptors including the 5-HT2A/2C, 5-HT1A, 5-HT6, 5-HT7, dopamine D1 and D2 and adrenergic receptors and have aspects of behavior mediated through these multiple receptors Now this is for LSD. We might suspect psilocin and psilocibin hit the same receptors, but I didn't read yet on this (not that many studies) Anyone on this? ADDING this: Wikipedia informs us that "Psilocybin is rapidly dephosphorylated in the body to psilocin, which is a partial agonist for several serotonergic receptors. Psilocin has a high affinity for the 5-HT2A serotonin receptor in the brain, where it mimics the effects of serotonin (5-hydroxytryptamine, or 5-HT). Psilocin binds less tightly to other serotonergic receptors 5-HT1A, 5-HT1D, and 5-HT2C.[1] Serotonin receptor so it seems that psilocin doesn't hit that 5HT1B receptor that Relpax hits. One thing we do know though, is that MM and LSD and RC seeds work 8-) yep they do You might want to try the mix ... :-/ :-/ ... I don't know what else to say. I wouldn't. Most certainly, it won't help the busting agent to work properly, and maybe it could be a threat for serotonin syndrom, I don't know, really.

There was a few attempts at modifying the Kip scale here, and I think we should get back to this and propose a new one which would stick better to our reality, and that would also help advocate to others http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1327395365/15

The Kip scale as described on the CH.com site is not a good reference for me. And For others to understand it, it would need comparisons like giving birth equals to Kip 4 or 5... so that (other) people can figure out what we mean. Besides, the Kip scale doesn't fit my attacks, especially at level 4-5-6... "Pain level 5 Still not a "pacer" but need space Pain level 6 Wake up grumbling, curse a bit, but can get back to sleep with out "dancing" For me, at Kip 3, I need to be alone, and there is no way I would go back to sleep with a Kip 5, even 4. The "why me" syndrom starts to set in at level 6, and at level 8, its hell, I'd rather die, which leaves two levels for "totally out of this world pain". At level 9, I'm starting to plan my suicide, think of my children, figure they will manage... all of life seems totally futile... And at level 10, I see death, it comes in the form of a white light and a flat land that looks soothing and peaceful... see it in the distance, but closing in... then it's coma time, I wake up hours after. What do you think? http://www.clusterheadaches.com/scale.html

Definitely no horizontal position while on a cycle for me; I try not to bend down either since rising back up is painful. Going down a staircase is no problem, but going up is always a difficult task... ...and this year, I busted with LSD, and that substance is known to keep one from sleeping for many hours. Well it seem to have set my hypothalamus to that setting for a week or so, for I wouldn't even feel tired nor sleepy even with minimum bad sleep.

yea, I thought the same, reading this earlier... so here goes : [smiley=thumbsup.gif]

yes it is, and I'm glad you posted it, it's easier to share, just wasn't sure it was the same info

Is it the same study as this video posted by Ricardo July 5th? I've seen similar articles go by on Facebook recently. http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1373048472 Since Uruguay just voted legalization of cannabis, I say that, little by little, especially with social medias like Facebook, the anti-drug propaganda that has dominated the scene for 40 years will be pushed aside in peoples' mind, and that a pressure from the public will push for more studies on alzheimer, PTSD and other more widespread illnesses

these are the ones. The picture is a bad picture and the colours kind of wrong being greenish, but there is no doubt they are RC seeds... just a bad picture