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Don't know if I have the right to do this but one more day alone will be be my last. I wrote this awhile ago. This would follow the kip scale.

   I mean not to overstep my bounds nor do I mean any disrespect to the late Mr. Bob Kipple but I do not feel the kip scale is completely accurate in my case. Though the differences are slight and few, they make it difficult for me to rate my occurrences I'm about to document in this journal. This is the Buzz scale. It certainly makes it easier for me and hopefully anyone reading this. Again, no disrespect to anyone who has or is been trying to figure out this horrible monster longer than me. There is also a term I need to add"jingle the keys". For me it seems it would kind of replace "shadow" but I am just going to add it because(as I'm about to explain) I can hear the keys without feeling a shadow. I've talked to my dad  the most about this so far. I curse the devil everyday for forcing me to put him through this. Both of us having a strong interest in war history so we made this analogy from something we've both heard. When enemies captured POW's they would jingle the cell keys as they walked so that the prisoner could hear it. After enough beatings they could send a broken spirited warrior to cower in the corner with nothing more than a "jingle of the keys". Case and point, even if you don't feel a thing, it can really ruin your day.

0- no pain, life is beautiful but cant forget what the keys sound like.

1- very minor, shadow's come and go. Beautiful turns into panic. I can hear the keys.  Pray it's not my cell.

2- more persistent shadows. They're getting closer.

3- shadows are constant. Can deal with it but start to baton down the hatches and look for an exit.

4- starting to get worse. Where's that exit.

5- still not a pacer but start to distance myself from anyone.

6- wake up grumbling, disoriented, curse a bit. Might not have to leave the house but if it woke me there is no going back to sleep.

7- woke up, sleep not an option. Take the beast for a walk.  Fall on the floor exhausted.

8- time to scream, yell, curse punch slam doors on my head, head bang, rock. Whatever works. Don't come near me.

9- it cannot get worse. The why me syndrome kicks in. DO NOT STOP THINKING ABOUT THE PEOPLE WHO LOVE ME.

10-  it will be the last entry inthis journal cause I already know how I'm  going to do it.

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Just a quick note:

Personally, I have always felt that as good as it is, the Kip scale falls short in describing the pain we endure.  For that reason, I applaud any effort to improve the scale.

Buzz, I like the "jingling keys" analogy you and your dad used to come up with this.  I find it especially pertinent in describing the lower end of the scale.  I think the upper end still needs some work.  For example, #6 and #7 do not address the hits that don't wake you up. 

It just seems a bit ambiguous, which in my mind is what makes making a better scale so hard, and is also the reason that I feel the Kip Scale falls short.  It is simply hard to describe our collective experience on a pain scale once you try to break it down into personal experience.  Am I making any sense?

Anyway, I applaud your efforts Buzz.  A little tweaking maybe, but to me you're headed in the right direction.

Bobb

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it will be the last entry inthis journal cause I already know how I'm  going to do it.

Have you tried busting yet?  I would encourage you to get some psychedelics and bust that beast as soon as possible--It sounds like you are kinda in a bad place right now, I think you really should try and have someone with you if you're going to though.  Stick around and I bet SOMEBODY'S going to have something that can help you, hang in there, I know it's rough.  Maybe you could start with what you've tried and haven't tried.  O2?  D3?  Seeds?  LSD?  Mushrooms? Ketamine? Licorice?  There are a lot of smart people on this board, try us.

-Ricardo

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Dude, Hang in there. I dont come on here that often and have never registered but from reading what you wrote , I registered just so that I can tell you to hang in there. I have been a clustergead since I was in my early 20's , so almost 20 years now for me. I really understand what you are going through.

I started a cycle on the 10th of this month and went back to my usual meds to find they are not doing anything this time around for me.

This is my worst cycle yet, I dont need to get into the details of the pain, all I can say is hang in there please. If I can so can you. We can go through this together. I have about 5 more weeks of this and then I should be good to go until this summer, then another 6 weeks and I will be good for an entire year.

2 nights ago I had so much damn red bull that it was making me sick. And the worse fo it all, is I have to be off of imitrex for 3 days after an ekg in the docs office. I have since decided to no longer take the verapamil and have been on nothing other than fast paced walks and jogging in place. I have since grown so damn tired of this s^$@ that I have ended up back here, especially after reading an article that was on msnbc.com last night talking about the medical uses of mushrooms and it mentions clusters in the article. If anyone would like to have a link to this let me know...

Stay positive my friend. Im trying to.

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Hi Buzz,

I can't tell if the tattoo is on the lower right side of your stomach or the lower left side of your back. It's the most original I've seen since the one with the devil reaching into the guy's eye. Did you do the original drawing? It's really cool.

You're in a tough spot, BUZZ. I feel for you since my kid was in the same spot a while back. About 3 years ago, my son and I together decided that if life for him was going to be this painful (the pain would build till he blacked out - several times every day) that I was going to help him end it after the first of the year. About the same time, I read an article in a journal about the success CH'ers were having using psychedelics to both abort and prevent their cycles. We determined to give it a try but spent the rest of the year looking for and finally finding a single tab of LSD. I cut it in half. He took the bigger of the two and we waited. After a couple of hours, with no hallucinations and no relief, he went to bed disappointed that our last and greatest hope was unsuccessful. A couple of hours after that, I woke up to his running up the stairs to my bedroom screaming that "It's gone!! Completely gone!! Background headache and everything!! It's gone." And it was. He was completely PF and it lasted for 5 glorious days. Then he took the smaller half of the tab - to no effect. We had found something that worked but it was all gone, along with it's source and we couldn't find any more. Very soon after that, I found CH.com and ClusterBusters. We tried mushrooms and found that they also worked. It was easy to become a grower and we raised our own medicine. For us, it didn't work forever. But, we got a couple of years where he was getting a lot of PF time during which his depression lifted - and with it, his desire to end his life.

Please BUZZ, give this a try. You don't tell us whether you've gotten an accurate diagnosis or if you've tried any of the standard medications or even if you've tried hyperventilating oxygen - the right way. There are many things that might help but you won't know which might help you without trying. Nothing helps everybody but we've found that everyone who tries, finds something here that helps.

However, right now I don't think you've got the time; so, without giving up any meds you might be using or reading anything or talking to anybody; don't do anything different or extra except find a dose of a major psychedelic and give it a try. That's all we did - and it changed everything.

Your situation and your pain are not unique. There are many others here who've been in the same situation and have experienced the same depth of agony as you have. Give us a chance to help you before you take that permanent solution to what may well be a temporary problem.

Ron

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Hey Buzz,

I'm also interested in finding out what you've tried as the others asked about. If that's your tattoo it looks like you're already familiarized with mushrooms and O2....

And damiano, I see you found and posted that MSNBC link you were talking about, thanks.

This Newsweek one is much more focused on CH and worth it's weight in gold IMO:

http://www.thedailybeast.com/newsweek/2009/10/14/the-psychedelic-solution.html

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Hey Buzz,

I have also refined the Kip Scale in an effort to be more precise when documenting the symptoms and triggers of CH.  In particular, the beginning stages seemed to need a better description.  This is what I use .........

This is my BITCH Scale

(Bradley's Intensity Tracking of Cluster Headaches)

Pain Level    K=0     NO PAIN ….. Life is Beautiful

                           Not even thinking about headaches.

Pain Level    K=1     Minor Shadows that come and go.

                           First realization that Head Ache is forming.

                           Slight Pressure in Head and Sinuses

Pain Level    K=2     Stronger Shadows becoming steady.

                           Pain becomes sharp and centered in eye or temple.

                           Time to start O2 and get to a safe place.

                           Avoid work, driving and people

Pain Level    K=3     Constant strong Shadows.

                           Becomes an intense regular headache

                           Very Strong Sinus Pressure and Head Pain

Pain Level    K=4     The Cluster Begins

                           Intense Eye pain, tearing and restlessness occurs

                           O2, Ice Packs and Energy Drinks and Aspirin tried

                           Agitation begins with pacing and shutting off outside world

Pain Level    K=5     Very Strong Eye Pain with swelling and complete Congestion

                           Unable to stop holding head.

                           Pain becomes stabbing and VERY acute

Pain Level    K=6     The Beast is Here  May be Woken from sound sleep

                           Diminished senses (sight and hearing) from overwhelming Pain

                           Relief is mandatory.  This is the beginning of a severe attack

Pain Level    K=7     An Hour of Pain at least.  All relief options fail.

                           Pain becomes unreal and reaches highest levels of bare-ability

                           If you can ride it out (and it doesn't get worse) you'll collapse   

                           with complete exhaustion and fall asleep.

Pain Level    K=8     Severe Cluster Headache.  Intensity becomes unreal. 

                           Rocking, cursing and yelling.  Some weak convulsions occur.

                           Reality starts to fade.  Cannot stand or sit.

Pain Level    K=9     The "Why Me" Syndrome sets in.  Pray to God for relief.

                            Hopelessness, depression and fear becomes prevalent

                            Actual feelings that you will die.  Pain becomes very clean

                            and almost spiritual.

Pain Level    K=10   Head Banging and convulsions.  ER trip. 

                           Cannot move or speak.  Complete loss of senses,

                           Extreme Depression, Feelings of Suicide

I really like the "jingling keys" concept.  Sheesh, next CH I'll be thinking of that.

Best of luck with all your busting.  I've have not had to bust myself, as I found a Neuro first.  I now take small doses (300 mg) of Lithium daily.  The O2 and support from this group are PRICELESS

weatherman

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Thank you all and I apologize.  Coach Bill saved my life 2 years ago on valentines day. He taught me everything some white coat wearing, piece of paper saying he knows something neurologist pretended to know. I ran out of o2 last night. I take my hands a squeeze my ribs till not a breath can come out. I put a 3/4" hose directly on the end of an industrial O2 tank. That's not what batch taught me but that's what I did with it. I was in chicago. I've been busting since '94 and my battle didn't start till '05. I'm typing on my phone so sorry for short sentences and grammatical errors. After three and a half yrs i finally got diagnosed. The cleveland clinic says I'm episodic :'(. Kinda funny that I get hit everyday though. The day I got  diagnosed my  girl if ten years said sorry that she had been cheating on me cause she thought I was on drugs. My friends and family are scared of me. I know this sounds crazy but I could care less about the pain anymore. At least when I hurt I know im not crazy. Somehow I even managed to get fellow suffers to stop talking to me. Case and point. Things are so bad I can't bust anymore cause my head is a scary place to be. I love you all and promise I'll never give up. And you can bet the farm I'll be in Vegas. I've learned how to stop the pain sometimes but how do I get my life back?  I don't know how to draw but my tat is an artist interpretation of our life. My kidneys can't handle another red bull or handful of pills. I really don't know any of you but I owe you my life. I'll have my new tat in Vegas to show you. I'm getting a dud round tatted. I hope I don't scare you all like I scare my family. Never fold straight soldier but how can I get my life back. Why won't my girl come home? I'm going to try to post my journal but all I have is my phone. My record is 158 hours awake. I need some positive thoughts so I can try to bust again. Those who have should know the danger of taking the med without proper mental state I've cut my face, I've introduced it to a fire hydrant. I don't know what else to say.

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I need some positive thoughts so I can try to bust again. 

Can see that you've been 'round the cluster block on numerous occasions, and know all about O2, busting, etc.

Still I figure it might be worth asking if you think RC seeds would be something to consider if you do another bust, since for many of us there's no trip - just a good night's sleep  - associated with them when they're taken right before bed....

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I don't get on with the Kip Scale either. It doesn't work for me.

I have 3 scales.

Headaches, 1-10.

Migraines, 1-10 - with a Migraine-1 starting at about 5 on the headache scale, and goes up to what would be a 20 on the Headache scale.

Clusters, 1-10 - clusters start at 7 on the migraine scale, or 12 on the Headache scale. They go up to 100 on the headache scale.

My clusters are described as such:

1. Short and intense, similar to an ice pick but longer and more in the eyes with side affects that can take an hour or two to recover from such as extreme tiredness, body temp all over the place and dry mouth

2. More intense, takes breath away, lasts a few minutes, maybe sheds a tear, longer to recover from

3. Lasts even longer than 2, will usually make me cry a little afterwards but not break down in floods of tears. Will certainly grab my attention and stop what I'm doing, as well as mess me up for a few hours after

4. Equal to childbirth in pain as discussed with a friend, lasts 10-20 minutes, will be very shaken, cry, body temp all over the place

5. Pain starting to get really intense now, lasting even longer

6. Curled up in a ball, in tears, post traumatic stress / panic attack usually follows.

7. As with 6, takes hours to recover.

8. Pain goes ultrasonic, words can no longer properly describe. By 'ultrasonic', I mean, it is as if you are listening to a very high pitched tone that hurts, but the tone keeps increasing until you can no longer hear the tone, but only feel the pain. My clusters do this. The pain is no longer there at one level, but ultra intense on another level.

9. Suicidal. Pain level in comparison to a Headache-80 But there is really no scale of sufficient magnitude at this point. Can't breathe, can't think. Torrents and waves of pain crashing down ontop of each other.

10. Pain beyond comprehension. Feels like top half of skull is being pried off with a crowbar rammed into the eyesocket over and over again.

The worst cluster I ever had was about a 14.

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Positive Vibes beamed to you, Buzz! 

Ron - weren't you talking about getting a tat a while ago?  Did you get one?  At the Chicago conference last year there were a couple of people sporting some very cool ink.  Hmmm...for Vegas, maybe we can convince BobW to set up a CH tattoo fashion show - complete with a cat "tat" walk.   ;D   Come on, that was kinda' funny!!! 

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Buzz,

Yeah, it really sucks. We all know. But there are a lot of caring and kind people here to help you.

If nothing else, the number of responses that you have received should boost your spirits. You are not alone.

Remember that, you are NOT alone.

Stay safe and stay in touch.

spiny

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Glad you stopped in Buzz. Good to see you here.

Lot's of good people here that you dont have to explain yourself to, before talking about what you're going through.

Bob

Who will talk to the conference scheduler to see if we have time for a "Cluster Tats on Parade" show. LOL

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Hi BUZZ :)

It is me, Tingeling. Happy to see you here. We CH`ers we are all in the same boat. Your not different from us. CH makes us feel crazy in very short time and you had this a long time. You can have your life back. When you do a bust, you will find yourself feeling very calm and refreshed after and you will feel you will be able to start picking up the threads.

RC seeds actually works better for me than both shrooms and LSD. And it just give you a very good nights sleep. It is worth a try.

Stick around us and it won`t be long before you will feel normal again :)

My best wishes to you

Tingeling

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I never could relate either to the Kip Scale. I combined BUZZ's and weatherman's and added my touch, trying to stay in the "jingling keys" analogy. I removed descriptions of some specific symptoms since I don't think they are the same for all of us nor come at the same stage. English is not my native tongue so there could be a few non sense. It's my feeling this could be a work in progress. What do you think?

Hang in there BUZZ

K=0   

NO PAIN ….. Life is Beautiful. Not  even thinking about headaches, but cant forget what the keys sound like.

K=1

Minor Shadows that come and go. First realization that Head Ache is forming.

K=2

Stronger Shadows becoming steady. I can hear the keys.  Hoping it's not my cell.

K=3

The sound of the keys is getting closer; shadows are constant. Can deal with it but start to baton down the hatches and look for an exit. Setting plans to reach energy drink, coffee, ice or O2, or checking if that nasal spray or shot is at hand

          

K=4

They picked my cell. the key turns and the door opens. Impossible to keep working, driving, reading, watching, talking... whatever was going on. Restlessness starts to occurs; urge to find a quiet spot and off the outside world;      absolute need of an abort agent, Energy drink, Coffee, O2, Ice nasal spray or shot

K=5

They start hitting. Unable to stop holding head. Pain becomes stabbing and VERY acute; moaning starts

K=6

The Beast is Here  Diminished senses (sight and hearing) from overwhelming Pain   Relief is mandatory, but acknowledgment of failure of the first measures. Oh, no, this is out of hands and turning into a severe attack Imitrex shot or nasal triptan needed absolutely. Screaming starts.

K=7

They set in to take turn for a non-stop beating. An Hour of Pain at least is ahead. All relief options fail. Pain becomes unreal and reaches highest levels of bare-ability. If you can ride it out (and it doesn't get worse) you'll collapse with complete exhaustion and some sort of sleep.

K=8

Severe Cluster Headache.  Intensity becomes unreal. Screaming, yelling, cursing, punching, head banging, constant heavy breathing and rocking. Don't come near me. Some convulsions occur. Reality starts to fade. Shifting towards fetal position.

K=9

The "Why Me" Syndrome sets in.  Regrets of being alive; Hopelessness, depression; Actual feelings that you will die. Pain becomes very clean and almost spiritual. Thinking of the loved ones.

K=10 

Head Banging and convulsions.  ER trip. Cannot move or speak. Complete loss of senses, Extreme Depression, contemplating suicide; death appears as a very light and refreshing option

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You all rock. I'm smiling for the first time in awhile. The seeds seemed to stop working. I was get up to 13 days free with them but now I'm lucky for 13 hours. I have filled two note books of my results. Seeds give me a rocker while fungus aborts them. Am I doing something wrong. 15 days is my best. I have a very lone wolf personality which doesn't help anything but maybe if I stay on here more often I won't fall so deep in the pit of hate and loathing. I also thought I would get scolded for tampering with the kip scale. I wont forget again that I'm dealing with the most open minded people on the planet. I think I need to buy a lap top cause this is just hard on my phone and don't want to drift away again. Any input on dosages is very welcome cause I think that's where I'm faltering. Again, you all are the best. And tingling, it means the world to hear from you.

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It does seem as if for some us, certain busting agents will work better than others.

I'm afraid RC stopped working for me too, but mushrooms are currently doing the trick. Others have had the opposite experience.

Plus I suppose we can always revisit the prep instructions to make sure we're doing everything right there - I think I'll probably try RC again at one point, but crush the seeds more gingerly, and "float" the seeds first to weed out the dead ones.

Something else I'm thinking of trying is combining seeds with mushrooms mainly in hopes the seeds will mellow out the mushroom experience some (thanks for the idea, Kaboom).

Kudos to you for hanging in there with us using just the phone, Buzz, you're doing a good job of proving it can be done!

Yep, I do think CH'ers and their supporters do tend to become more open minded as a result of the experience. And heck the mushrooms/tabs etc. don't hurt in this regard either. A positive side effect. :D

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BUZZ, never doubt your welcome to contact me anytime. We are all here to help eachother. You should get a laptop, this place brighten you up and lift you more than you can imagine. This people in here gave me my life back. The love and support here are so strong. Our experiences gives us a different view of life i think. Many of us have a lone wolf personality it seems. Maybe also that is why this kind of support trough the internet works so well for us. Cause i think it does. 14 days is the most i could get for a long long time as well. And sometimes now i need to hit it harder as well. What is your busting plan?

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