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Title: Variation in Cluster Experience Post by Bob_Johnson on Feb 27th, 2006, 9:13am We regularly see messages from folks who question why their clusters don't fit the pattern which they have read about. This article confirms that variation in the experience of cluster is common, i.e., don't get concerned about such differences in personal experience. Note: stat on effectiveness of verapamil. -------------------------------------- Cephalalgia. 2006 Mar;26(3):241-5. Evaluating the IHS criteria for cluster headache - a comparison between patients meeting all criteria and patients failing one criterion. van Vliet J, Eekers P, Haan J, Ferrari M; for the Dutch RUSSH Study Group. Department of Neurology, Leiden University Medical Centre, Leiden, The Netherlands. Cluster headache (CH) is diagnosed according to criteria of the International Headache Society (IHS), but, in clinical practice, these criteria seem too restrictive. As part of a nation-wide study, we identified a group of patients who met all criteria minus one (IHS-CH-1), and assessed in which way they differed from CH patients meeting all criteria (IHS-CH). We performed a nation-wide questionnaire study for CH and CH-like syndromes, including questions based on the IHS criteria, and additional features such as restlessness during attacks, nocturnal onset of attacks, circadian rhythmicity of attacks and response to treatment. IHS-CH and IHS-CH-1 patients were compared. Of 1452 responders to two questionnaires, 1163 were IHS-CH and 289 were IHS-CH-1. The majority of the IHS-CH-1 patients were classified as such because their attacks exceeded 3 h (64%, median attack duration: 5 h), or came in a frequency of less than 1 per 2 days (16%). Age at onset was similar between the groups. The male to female ratio was 3.7 : 1 in the IHS-CH group and around 1.6 : 1 in the IHS-CH-1 groups (P < 0.005). Patients with attacks exceeding 3 h less often reported a circadian rhythmicity (IHS-CH-1: 49%, IHS-CH: 64%), episodic periodicity (IHS-CH-1: 65%, IHS-CH: 78%), nocturnal attacks (IHS-CH-1: 67%, IHS-CH: 78%), smoking (IHS-CH-1: 90%, IHS-CH: 80%) and restlessness during attacks (IHS-CH-1: 64%, IHS-CH: 76%) than IHS-CH patients (P < 0.005). Photo- or phono-phobia (IHS-CH-1: 67%, IHS-CH: 54%) and nausea (IHS-CH-1: 38%, IHS-CH: 27%) were more frequently reported by patients who reported to have attacks exceeding 3 h (P < 0.005). Similar proportions reported effect of verapamil on their attacks (IHS-CH-1: 54%, IHS-CH 61%). We conclude that average attack duration exceeding 3 h was frequently the reason for not fulfilling IHS CH criteria. Symptoms often accompanying CH such as restlessness, nocturnal attacks and an episodic attack pattern were relatively frequently present in IHS-CH-1 patients with longer attacks. These patients may therefore be diagnosed with CH. Attack frequency may not be a useful criterion for the diagnosis of CH. The upper limit of 3 h should be increased in future diagnostic criteria. PMID: 16472329 |
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Title: Re: Variation in Cluster Experience Post by Sean_C on Feb 27th, 2006, 9:47am I would be intersested in knowing the pain scale for all those that get attacks for up to 5 hours. I'm curious if this would include strong shadow activity. From my personal experiences I have never had a CH longer than 2 hours but I know they obviously do happen. Also any of the clusters that did exceed 1 hour were usually over the kip 10 scale sort of speak, and were unabortive. If it wasn't including shadow activity, I feel bad for those folks, thats a long time to feel that kind of pain, I seriously don't know if I could do that on a regular basis. Thanks for posting Bob, Sean.............................. |
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Title: Re: Variation in Cluster Experience Post by BarbaraD on Feb 27th, 2006, 9:52am I've had "clusters" that hit back to back, but they would subside for a few minutes before the next attack hit. They would go on for hours seeming not to let up. This may be what these people are experiencing instead of one attack of 5 hours. BD |
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Title: Re: Variation in Cluster Experience Post by nani on Feb 27th, 2006, 11:23am Thanks, Bob. I'm pretty atypical, so I appreciate when others come with atypical symptoms. I've had some odd stuff going on in my head lately, too. Still trying to figure all that out. Sean...I think it's important to remember that we all handle pain very differently, so even with the kip scale...there will be a variation with the perception of the pain. I remember once reading that someone held their head and rocked thorugh what they called a k1. Personally, I don't even slow down and consider rocking until I'm at (what I perceive) as a k4. I will tell you that on Friday, I had a 6 hour k5. Was it a slow hit, an long shadow, or something else altogether? Hell if I know. But it hurt like a mutha... :-/ |
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Title: Re: Variation in Cluster Experience Post by RuneWitch on Feb 27th, 2006, 1:58pm I truly envy those who have short duration, high intensity CH. Mine seem to be long duration, high intensity. Each episode lasts from 4 to 6 months, each headache lasts 5 to 8 hours at a pain intensity of kip7 to kip10 with one each day for both the first and last portions of the episode while there would be 2 a day during the peak. They would amp up to a kip7 level very quickly, hang there for an hour or so, go up to kip10 and hang for three to 7 hours, then back down a bit for an hour or so before ceasing altogether. I would be left both physically and emotionally drained. Needless to say, I don't keep guns in the house. I have a very high pain tolerance level and have had a root canal done without deadening. And regardless of what any doctor says, I know that these are CH. I've had them for 50 years and I know this Beast for what it is. And it has not yet won this battle. Even though I have now found a combination of meds that have kept me CH free for nearly 5 years, I do sometimes have 'shadow episodes' where I have some of the symptoms of CH but little or no pain. These episodes are of shorter duration, usually a month or so. I'm very thankful for the PF time, but still go to bed with a fear in the back of my mind. I know that I can no longer face them with the same certainty of survival I once had. And I've never read or heard anyone say that they would stop after we reach a certain age. I am very seriously considering a cessation of the meds to see if and when the Beast rears it's ugly head. I dislike the side effects of the meds - but hate and fear the Beast more. I wish PF days and nights to all. |
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Title: Re: Variation in Cluster Experience Post by Sean_C on Feb 27th, 2006, 8:01pm on 02/27/06 at 11:23:24, nani wrote:
I agree, but I think the clusters I share are similar to most sufferers, I'd be interested to know if its not. And I'm not being arguementative here either LOL ;;D My pain tolerance I feel is high, but then what is high. So here goes. At a kip 1 through 5 I can get aggitated, but I can funtion somewhat if its shadow related. If its a ch hit I usually get prepared but I will know within the first 15 minutes if its gonna be a ch and just deal with it as it comes. Heavy shadows can last for many many hours, and then eventually taper off to nothing. A Kip 6 through 7 I need my own space, within 10 minutes if it just lingers at that Kip I just find my own space and wait it out, preparing for the worst until it starts to decline. Hit usually lasts 30 minutes to 1 hour if no abortive is attempted. A Kip 8 through 9 I would know within 15 minutes, and I need support from my wife if she's around, if not I find somewhere where I can pace and curse at will and look like an idiot talking to himself while holding his head without anybody seeing me. Hit usually lasts 45 minutes to 1 hour if no abortive is attempted. A Kip 10 plus I know within 20 minutes and usually I can't put the fire out and I myself know I'm fucked. I will deal with it until I can't deal with it anymore or begin to turn into the hulk, either way I usually end up at the ER because if I didn't suicide or self mutilation would be an unfortunate option. My kip 10's are nothing for me to take lightly, I have lost total control and it will be showing. They've lasted over a couple of hours at best, and usually taper off just as fast as they started. Sad part is when its all over I'm NOT relieved, I'm shakey and scared. I can honestly say, if I had "my" kip 10 for 5 hours on a regular basis I would not be here to tell the tale. Every man has his breaking point, that would definately be mine for sure. :( Anybody else relate to that??? Just curious. Cheers Sean........................................................ |
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Title: Re: Variation in Cluster Experience Post by pfunk on Feb 28th, 2006, 12:12am I agree that most of my hits usually only last 2-3 hours. But, during cycle I occassionally get a few that will last 5 hours or more. They start out at about 6-7 and escalate. They seem to be the worst ones b/c as someone stated previously, no attempts at aborting these beasts usually work. These also are the worst for my girlfriend or mother because they usually wake me up at between 2:30-3:00 in the morning and require a trip to the ER or an overnight stay in the hospital. Luckily the ones this time have not been that bad and in response to the post about age from another thread, my cycles don't seem to be coming as often but the pain of the actual hits seem to be much more intense. PFDANs to all. Pfunk |
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Title: Re: Variation in Cluster Experience Post by BarbaraD on Feb 28th, 2006, 3:01pm I have a very high pain tolerance, so I don't usually take anything until I'm up to a Kip 8 or more (except coffee and O2). The low hits lasts 20 min to an hour usually (the ones that I wake up with). the ones that reve up from 0-10 in a few seconds don't usually last but a few minutes 15-25 usually and that's when I hit the cafergot - pills if I'm in public - suppositories if I at home (they work faster). I do my best to get off to myself because if anyone dares touch me while I'm being hit I could hurt them. I cannot stand being touched while I'm being hit and am not the least bit nice about it. If I can't get off alone - people can just watch me hurt and more than likely will get an ear full of not to nice language. And I don't apologize afterwards. Today, I woke up with a Kip 4 and have had two doses of cafergot and I'm still hurting and in a f*ing pissy mood. I just hate days like this. Just goes to show - nothing is really typical with these things.... Hugs BD |
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Title: Re: Variation in Cluster Experience Post by Dragnlance on Mar 1st, 2006, 9:14am I have a very high pain tolerance. Anything between kip1 and k3 doesnt even annoy me any more. k4-k6 I start getting grumpy, and really dont want to be bugged. k7-k8 time to go home if not there already. k9-k10 the usual miserable crap. My hits are always 3 hours. When I have a bad day, they appear to be 7 - 10 hours long but could be one after another in differing durations, dont really know. I do know that when it is a bad one, it ramps up and up and up. After they peak out, they flux between the high point and one notch below, and will go back and forth for the duration. (did that make sense?) What I mean is, if it is a 9 hour monster, like last week for example, it peaked at k9, and dropped to k-8 and back to k9 many times thru the 9 hour torture session. The longest session I have had, without a break has been 21 straight hours. Something like that can change your pain def pretty quick. :-/ Dragn |
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Title: Re: Variation in Cluster Experience Post by danm on Apr 24th, 2006, 2:31pm on 02/27/06 at 20:01:57, Sean_C wrote:
Sean....I can totally relate. 5 hours at k10 would be too much for me. I don't know if I could make it. After an hour or so - of K10, I start getting crazy thoughts. Dan |
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Title: Re: Variation in Cluster Experience Post by jon019 on Apr 24th, 2006, 3:56pm Hello All, Very interesting thread, thanks Bob! For years and years my "typical" hit was 90 min at specific times of the day. Pissed me off that 500PM was one and I always missed the news, but knew at 630 I could have a smoke and catch the start of a ballgame. As the years have gone by, typical aint typical anymore, anywhere from 5 min to 7 or 8 hours. For some beastly reason the longer ones are the worst, Kip 9-10, no shadows, just unrelenting freight train pain and as "fubar" said in another post "redefines the concept of endurance". There is no relief or euphoria after one of these, just total exhaustion and the incredulity of how that much pain can be endured and survived. The only benefit being that the lesser hits become much easier to deal with. I'm with nani here, below a 4 and I can function "normally" and most won't know there is anything wrong. Do have to admit that when these blessedly rare extended hits are no longer tolerable cuz I can no longer trust my reaction, I self medicate with a very strong narcotic to the point of passing out. Will emphasize i am not recommending this and I am very careful with dose, but the thought of being hit in an ER and waiting the typical hours just too much to bear. Regards Jon |
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Title: Re: Variation in Cluster Experience Post by BarbaraD on Apr 24th, 2006, 6:49pm My doc tried (years ago) to medicate me with narcs to the point of passing me out to get me some rest. I passed out alright, but the pain of the CH came thru and it was a nightmare. I couldn't walk and I couldn't lay in bed. I crawled to the bathroom to get cafergot for the pain and then couldn't get back in bed. A friend happened to come by and find me on the floor trying to bang my head in my naracotic induduced state and called my doc and told him to come over and see what he'd done to me! That was the last time he ever tried that one. He admitted that he couldn't knock me out enough to get rid of the pain and that we'd better try a different route. After about a week I sobered up. Vaso constrictors are boss when I get hit really hard, but can't handle pain meds at all. Hugs BD |
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Title: Re: Variation in Cluster Experience Post by blue43 on Apr 24th, 2006, 8:11pm The minimum duration for mine is 3 hours. However, it takes them about an hour to come on to the point of distracting me from what I'm doing. I'll be watching TV around 10pm and think, oops, here it comes. But it won't be until 11 that the pain interrupts me. And then it'll keep escalating for another hour or so before finally turning around and sinking away just as slowly. I'm a new clusterhead, and I've only had a handful of bad ones spaced out about a month apart. However, before those started, I remember getting patterns of +/-kip 4 headaches that I thought were sinus related -- because the first symptom of them was always that one side of my nose felt stuffy. Those had the same very slow arch to them. |
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Title: Re: Variation in Cluster Experience Post by unsolved1 on Apr 24th, 2006, 8:48pm Mine start quickly. At a Kip 8, I hit the Trex. It usually ramps up even more then. At Kip 9 - 10 ... I also like pain meds in addition, but can't always get it. Mine are usually at least a Kip 9. :( . With Trex they only last about 20 minutes though and ramp down quickly. I wouldn't want to go through it without Trex or HEAVY narcotics. Either way, it SUCKS !! BTW ... I use between 3 and 8 Imitrex injections daily unless on heavy steriods or DHE. Unsolved <--- who went to the ER last night again! :-/ |
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Title: Re: Variation in Cluster Experience Post by Skyhawk5 on Apr 24th, 2006, 11:44pm My hits last from 30min.s to 2 hrs. on average but I have had some 5hr. hits. Once on a long road trip, I was in the back seat dying for that long. K10-9, I just couldn't bring myself to have the wife stop. I had 2 full E tanks but couldn't use them due to no seal for the regulator. Darn O2 store! Got some the next day. I use stadol but it wasn't working for that hit. Trex doesn't help me. I take Lithium, Verapamil, the Oxygen, stadol and sometimes try something new. Tried Migranal NS last summer, helped a little but no magic bullett. Prednisone is helpful but only while taking it, for me. I have a few atypical symptoms, with only O2 as an abortive and it fails to end the hit, I sweat big time ,vomit, whether I've eaten or not in 2 days (stomach acid) yeck! I don't know why but the Stadol stops these 2 symptoms even when it doesn't abort the hit for me. Unsolved, sorry to see you played the ER game. Bless you. DonS |
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Title: Re: Variation in Cluster Experience Post by D_Robinson on Apr 25th, 2006, 9:00am Dagn, you do not take anything for youf CH? Does anything work to abort em for you? I used to go thru those long one, but no I do not have to anymore and well since I do not have to I choose not to, whether I have a high tolerance to pain or not. I just read thru you posting about these long bouts and it brings back terrible memories for me and I really feel for ya buddy. David |
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Title: Re: Variation in Cluster Experience Post by PV on Apr 28th, 2006, 7:10pm Over the years my ch has always changed. When it started the hits were never longer than 45 min and the first 2 episodes I never had more than one a day. the cycles lasted 2 weeks, but came back every 8 - 9 months after about 10 years the cycles became longer, I thin k I had my fist kip 10 after 12 years, but then for about 3 1/2 hours, but still rarely more than one attack a day. Now, after 29 years the cycle lasts about 6 weeks, but I have 2 1/2 - 3 years remission. Now I can have 5 attacks a day most don't last longer than 2 hours, but I often carry shadows for days non stop. They can be bad enough, so somtimes for me difference between a shadow and an attack is minimal. I also had episodes where I had to vomit, I think from the sheer intensity of pain, I could not find another explanation - but suprisingly vomitting often aborted the attack. So for me variation is a typical thing of CH. Also considering that often what helped in one episode does not do thing in the next, or could even trigger attacks. But I appreciate everything that get done concerning CH, so maybe one day something will be found.... |
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Title: Re: Variation in Cluster Experience Post by rapunzel on Apr 28th, 2006, 8:43pm on 02/27/06 at 20:01:57, Sean_C wrote:
I can! Most definitely I have discovered that its almost unreal how bad it gets. The last whammy had me rolling on the floor crying for my mother. I am 37 years old- I do not cry for my mommy when I get a boo-boo anymore. She doesnt even live near me. It was definitely the worst I have ever experienced- it was the 'plus' on a Kip10+ . I was beyond rational thought, beyond reality. My husband told me I should have called 911, and that makes perfect sense to someone who can think. I was beyond thinking. I could no more have dialed 911 than I could have went out dancing at that point. That hit lasted fortyfive minutes. 5 hours? I would have exploded and dissolved if that would have lasted five hours. No way I could survive it. |
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