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Topic: I'm Back. Ontario People read and reply please (Read 4276 times) |
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MorePower
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I'm Back. Ontario People read and reply please
« on: May 19th, 2006, 9:10pm » |
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Hey, I am back.
I have been suffering since last July, not a miniscule in time frame from what you guys ahve eeb suffering but I have had zero relief. Maybe 1 night here or there but aleaat 2 per day. 1 in the afternoon between 1 and 3pm as a rule, sometimes as late as 6pm and 1 at night. They start at 9pm rarely but 90% of the time its 1:10am on the nose out of a dead sleep. The CH are getting worse and longer. First started at 15 min, now almost hours. I can't take it anymore. I am a Christian and whn I get an attack, I ask God, to take me out of my misery and let me die. I would not commit suicide but ask that I die. The night attacks are so intense. Only my wife sees how I suffer, My 7 yr old wakes up, sees my sreaming, ripping the headboard off the bed, curling up in a ball crying,.yelling, screaming in pain. He cries because he knows nothing. MY wife is disabled from a car accident and feels helpless. I am on topamax,anti dperessant abd today got a trial of imitrex for 5 days. I would do surgery in a heartbeat if there was a 1% chance they would stop. No one beleives me that they are more severe than others. The video of the guy in clusterbusters of the guy is not even a 1/4 of what I get. His attack is a normal afternoon attack for me. The night time attacks I am useless. Then for 2 days I feel throbbing in my face. My body is exhausted. These CH started immediately after my wifes car accident. I was properly diagnosed and learnd the hardway by loosing a tooth as it starts in my right upper gumb abd goes behind my right eyeball. I didn't come on this site for many reasons, Mainly because I felt I can't get help.
Now, I am at my wits end. I can not take it any longer. July 05 to May19,06. Not 1 day relief. None stop. Right through Fall, Winter, Spring. i ahve had enough. Thanks God, I am on Stress leave otherwise I would have got fired as I would have gotten hurt at work. I am useless to anyone at this point. Even myself.I don't know what I am goign to do.
Anyone else from Ontario????PM me if ok
I am in London, Nice to meet any fellow suffers in my area. 
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E-Double
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Re: I'm Back. Ontario People read and reply please
« Reply #1 on: May 19th, 2006, 9:28pm » |
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Welcome back.
Sorry you're in pain.
Don't belittle others
Lose the chip
Gain support and help
Give the same.
Good luck!
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I can't believe that I have to bang my
Head against this wall again
But the blows they have just a little more
Space in-between them
Gonna take a breath and try again.
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BobG
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Re: I'm Back. Ontario People read and reply please
« Reply #2 on: May 19th, 2006, 9:35pm » |
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Hey MP, welcome back to the board. There is help here.
You only mention Topomax and a trial of Imitrex. Have you tried anything else. Prednizone, verapamil? Is your Imitrex pills, spray, injections?
Loosing the tooth may not be what triggers your pain. The trigeminal nerve has endings in the upper and lower gum lines. Inflamation of the trigeminal nerve can feel just like a tooth ache. Most people get that pain and the pain behind the eye is probably the most common trait among sufferers.
Let us know about you meds. Surely someone can suggest help for you.
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Stay stressed. Never relax. Never sleep. Ever.
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BlueMeanie
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Re: I'm Back. Ontario People read and reply please
« Reply #3 on: May 19th, 2006, 9:52pm » |
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Welcome back. It sounds like this is the first time with Trex. I hope it works for you. If it's pills, don't give up as you just need to change to either the spray or the shot as pills don't work fast enough. Read the imitrex tip to the left of the page for some good info on splitting doses.
Have you tried oxygen ? There is also info on that subject to the left of the page.
You should spend a great deal of time reading when not in pain. There's tons of info throughout this site.
Good luck and more power to ya . PF vibes !!!!!
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Grandma_Sweet_Boy
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Re: I'm Back. Ontario People read and reply please
« Reply #4 on: May 19th, 2006, 9:59pm » |
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Check your PM's.
Carol
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MJ
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Re: I'm Back. Ontario People read and reply please
« Reply #5 on: May 20th, 2006, 1:47am » |
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Hey Mo Pow
Welcome back.
Good advice from EE above.
We all understand more than you think. Many here get hit up to 10 and more times per day, including the video dude who was having an easy day I heard when the vid was taken.
I remember when I first got these things I would curl up in a ball sometimes and literally go into convuslsions from the pain.
One important thing for me is allways be upright and moving when being hit. While laying on the floor or bed things allways seemed worse.
Get up and move, find an unobstructed pathway and use it, pace, count the steps whatever to train your mind. Fight the damn thing with all you got and then revel in the glory of kicking its heathen ass.
If a god you believe in your asking him the wrong thing. Its give me strength not take my life.
I'm sure your not useless to your wife and son, sounds like they could use your help be happy your not disabled on a permanent basis.
Live for the times between pain.
Check your meds effects maybe they are prolonging the cycle.
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MorePower
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Re: I'm Back. Ontario People read and reply please
« Reply #7 on: May 23rd, 2006, 2:06pm » |
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What are the seeds for? What do they do? Are they legal???
What is a KIP scale?
I took my 1st dose of imitrex last night but it lasted 1 hour. It was the worst i ever had yet. Not the longest but the hardest hit. I took the imitrex within seconds of it coming on. Not sure if it helped. Usually, I call asleep within minutes of an attack because I am exhausted. But I couldn;t because my face was throbbing. It still is some 8 hours later.
I felt sorry my 7 yr old son, had to watch me go through it last night. My in laws are staying with us, so he was sleeping in our bed. He cried his eyes out feeling helpless. I felkt bad cause he had to see it. I apologized to him this morning. He knows Ihave no control over it.
Again, I am afraid to go to bed tonight.
im exhausted physically and mentally 
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E-Double
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Re: I'm Back. Ontario People read and reply please
« Reply #8 on: May 23rd, 2006, 4:28pm » |
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If you can't get melatonin, some in Canada have had luck with Gravol for sleep and prevention of your night time hit
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I can't believe that I have to bang my
Head against this wall again
But the blows they have just a little more
Space in-between them
Gonna take a breath and try again.
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MorePower
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Re: I'm Back. Ontario People read and reply please
« Reply #9 on: May 23rd, 2006, 8:17pm » |
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when I get a cluster I am in a dead sleep, wakes me up likea firetruck in my bedroom,. I have no trouble going to sleep.
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E-Double
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Re: I'm Back. Ontario People read and reply please
« Reply #10 on: May 23rd, 2006, 8:44pm » |
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We all know how one feels and when it appears.
That's why we are here!!!
Read what was written.
Not to help you get to sleep but as a preventative!
Melatonin ..........nevermind, I'll dig up some research for ya.
http://www.achenet.org/articles/84.php
Leone M, D’Amico D, Moschiano F, et al. Melatonin versus placebo in the prophylaxis of cluster headache: a double-blind pilot study with parallel groups. Cephalalgia 1996;16:494–6.
Peres MFP, Rozen TD. Melatonin in the preventive treatment of chronic cluster headache. Cephalalgia 2001;21:993–5.
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| « Last Edit: May 23rd, 2006, 8:49pm by E-Double » |
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I can't believe that I have to bang my
Head against this wall again
But the blows they have just a little more
Space in-between them
Gonna take a breath and try again.
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Sean_C
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Re: I'm Back. Ontario People read and reply please
« Reply #11 on: May 23rd, 2006, 9:11pm » |
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on May 23rd, 2006, 2:06pm, MorePower wrote:He cried his eyes out feeling helpless. I felkt bad cause he had to see it. I apologized to him this morning. He knows Ihave no control over it.
Again, I am afraid to go to bed tonight. |
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That fuckin sucks bro, been there countless times myself 
My best advise would be to have your o2, trex or some kind of abortive and crushed ice ready for when he comes.
Lots of good info above, hopefully he won't hang around long.
Sean.......................................
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broomhilda
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Re: I'm Back. Ontario People read and reply please
« Reply #12 on: May 23rd, 2006, 10:14pm » |
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Another resource that may help you locally...
http://www.clusterheadaches.ca/cgi-bin/yabb/YaBB.pl
I dont know how to post links but if you look at the threads in "dealing with clusters" there is a lot of information that may help you.
PF wishes
Andrea
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| « Last Edit: May 23rd, 2006, 10:14pm by broomhilda » |
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Suck it up Princess...
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MorePower
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Re: I'm Back. Ontario People read and reply please
« Reply #13 on: May 23rd, 2006, 10:17pm » |
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I put him to bed at 9, fell asleep immediately after. 9:20 I got nailed again. I went out of the bedroom and went to the stairs to have my episode. MY mother in law watched me have one. First one she ever saw. Now I feel bad for her.
I used the Imitrex again. No relief. How many times should I use it b4 I toss it???
Also, what is a scale that you guys use???Last night and tonight have been the worst pain so far. Not the longest lasting but the hardest pain.
Also, anyone ever work in a factory and have an attack?
How many attacks b4 u got fired?
I will get zero sympothy at work.
Iam on stress leave right now.Which is good. I'd get hurt if I was at work now anyway.
I am so scared whats going to happen to me and the rest of my life if I will be able to hold any jobs or even get hired if I get fired for CH's....
u guys are all soo nice,thanks for the support and info above. I wil print it off and give it to my doctor.
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seasonalboomer
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Re: I'm Back. Ontario People read and reply please
« Reply #14 on: May 24th, 2006, 9:21am » |
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dude,
you need to talk to someone as the message board is a little too slow for your present spot. I saw Grandma ask you to check your PM. Did she talk to you? If not, someone who has/had this level/frequency of hits can talk you through some next steps.
I understand how you feel, though I don't sufffer at your level. The main objective has to be to start to put together a plan. That includes figuring out medications and therapies that can help you when you are getting hit and maybe find a course of meds that can help you avoid getting hit as often. Maybe someone can talk you through some of this as it sounds as though your life feels like a mess to you.
I can tell you there is hope and these things can be managed better than you are doing now. It takes discipline, building knowledge and not allowing yourself to simply be a passive victim to these things.
Someone else asked about Oxygen. With the right rig this could possibly help you out of 50%+ of your headaches. Doesn't that sound worth getting some? TODAY?
Are you injecting the Imitrex? Most people with your severity find that only the injections are worthwhile. Pills, no way.
Find a way to get )2 and buy a Clustermasx with it online at clustermasx.com.
Good luck.
Scott
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unsolved1
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Re: I'm Back. Ontario People read and reply please
« Reply #15 on: May 24th, 2006, 9:39am » |
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I was wondering if anyone was going to ask that question, and finally Scott did.
Are you using the Imitrex injections ?? If not, Get them !!
Try Prednisone for a break in the headaches. It'll let you gather your wits !! For more immediate help, go to an ER and ask a doctor about getting an infusion of Solu Medrol.
Goodluck
UNsolved
Edited to add: The "KIP SCALE" ... look to your left on the menu and click on the link !!
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| « Last Edit: May 24th, 2006, 9:40am by unsolved1 » |
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MorePower
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Re: I'm Back. Ontario People read and reply please
« Reply #16 on: May 24th, 2006, 9:45am » |
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I will ask my doctor for the upententh time for oxygen. He is so reluntant for anything.
The imitrex is pills.
I am so exhausted. Ill come back later with a clear mind. Im too tired to think right now.
luv ya guys
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seasonalboomer
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Re: I'm Back. Ontario People read and reply please
« Reply #17 on: May 24th, 2006, 11:06am » |
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dude,
i know you're tired but you need you to do a couple things.
don't take no for an answer on the oxygen. you need a prescription for an O2 tank with a regulator that allows for 10-15 lpm flow rate and a NON-REBREATHER MASK. (You can order a better one later from Clustermasx.) Each of those details is critical. If your doctor is reluctant - you have to FIGHT HARD. Print the links here about O2 and about medications and therapies listed. My doc fought me as many have and in the end YOU ARE IN CHARGE.
As for the Imitrex pills, again FIGHT HARD to get the injections. The pills are too slow for Clusterheads. Let the migraine people use them but for you, you NEED either injections or the inhaler. They've both worked for me but the injection feels like a freakin' miracle happening when they are successful.
My main point is that you sound as though you are at your wits end. You can either lie down and be a victim of your doctor, the system, or cluster headaches. Pick your poison. OR, you can get off your keester and FIGHT HARD for your life. There are tools that work, it is YOUR JOB to learn and read and FIGHT for them.
Many of us approach replying on this board in different ways. I'm not a good "consoler" - others are better at that part than me. I'm the kind that says if you're in a fight, you better be the first one to grab the bazooka when everyone is choosing weapons -- don't let someone else give you a pocket knife and then blame them.
This board was a godsend for me and I learned that the advice has to be acted on to work. So, get going. FIGHT!
Scott
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MorePower
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Re: I'm Back. Ontario People read and reply please
« Reply #18 on: May 24th, 2006, 12:32pm » |
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Hey, umm I just spent 45 min writing out a long reply, but it said it was too long, so I hit back and it deleted all of it, Grrrr.
I am gonna try to fight.
Any links to injectable imitrex?
How do i ask for 02?
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BobG
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Re: I'm Back. Ontario People read and reply please
« Reply #20 on: May 24th, 2006, 2:01pm » |
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About your son seeing an attack..........
Explain to him, in words he can understand, what the attacks are what causes them. Do this when you are not having an attack. Little kids are a lot smarter than most adults will give them credit for. Many times, when a parent is hurting, a child will blame themself thinking it is because of something they have done. You must let him know that he is not responsible.
Give you son a 'job' to help you through the attack. Could be to see that the radio or TV is turned down, could be to care for a younger sibling until the attack is over, could be he can get you a hot cloth or ice bag. He just needs something he can help with.
Be sure to give him praise, a big hug and a thanks for a job well done. It will help take his fear away and make him proud he did his 'job' to help.
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Stay stressed. Never relax. Never sleep. Ever.
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Linda_Howell
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Re: I'm Back. Ontario People read and reply please
« Reply #21 on: May 24th, 2006, 6:52pm » |
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Everyone here has given you really good advice and I can tell that you are just about at the end of your rope and so very frustrated. I know you're in pain but I HAVE to say this:
Eric said to get rid of the "chip" and don't belittle others, and I will tell you why he said that.
The man in the video you referred to is Cluster Chuck. In the 19 years I have been chronic and out of all the clusterheads I have met in person over the years, I have never seen anyone who gets hit as often as he does. I've seen him have a 30 min. hit.....get a break for a 1/2 hour or 45 mins....and get hit again. This goes on and on, over and over, all day and all night for him for years now. He goes through 10 to 12 E-tanks every single day.
Because of a heart condition he can't take any abortives except 02, and never once have I heard this man complain or be on any kind of a pity-pot.
I am only saying this to you because I have a deep respect for this man and when you said something about the guy in the video only having 1/4th of what you get... it really hit a raw nerve for me & a few of us who know what absolute hell Chuck goes through.
Linda
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Kindness, is gladdening the hearts of those who are traveling the dark journey with us.
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unsolved1
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Re: I'm Back. Ontario People read and reply please
« Reply #22 on: May 24th, 2006, 7:01pm » |
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Well said Linda
UNsolved
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MorePower
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Re: I'm Back. Ontario People read and reply please
« Reply #23 on: May 25th, 2006, 7:04am » |
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Linda: I didn't know that he suffers that often, I am sorry.
Here is the coles notes version of me and my family with alot of details left out. Very condensed version.
Jan12,05-married my best friend, conceived a child on wedding night. For next 3 months my wife was gravely ill,normal for some women.
April5,05-(my bday), We lost the child. She carried it for a week b4 the D&C, and was assured she would feel nothing and be out of it. That was the exact opposite of what happened. This almost cost our marriage.
July25,05-My wife was in a bad car accident. Rear ended. At 1st was 2nd degree whiplash. Now diagnosed with incurable Fibromalgia(neck,back,knees and feet),Chronic Fatigue Syndrom(sleeps 12 to 18 hours a day) and severe myiofacial pain.Plus she has chronic muscle spasms thoughout each day. She can barely walk with even the use of a cain. She had a busniess and was successful, but that has gone belly up.She is 29 yrs old.
Dec,05 My son,age 7-diagnosed with ADHD(prev marriage)I have 50% custody-4days on/off
Jan27,06-My son was mauled by a dog and received 20 stitches.Now suffers from severe fears ,espc. dogs and has night terrors. he is in councelling. Finally,last week, his mom agreed and got him on concerta for the adhd.
Me-Started having Chronic CH's immediately after wifes accident.Thought it was a tooth.2 root canals,tooth removed,then dianosed. Been suffering 2x a day.Rare 3x's a day but has happened. I also suffer from exzema and IBS, Migrianes, tennis elbow(work related) and back problems.
I have been on stress leave since Jan 12.Thanks God.
Just giving you guys a heads up, Why my plate is full. I left out alot of sad details like money situations(almost lost eveything).Father in law had surgery for 12th time in 1yr and half, and other family issues. Not trying to complain. Just explaining why maybe I feel worn out and less apt to fight. I apologize If I seemto have a chip. Its been a rough year.
Thanks for the encouragement, I am gonna do some more research today b4 my psch appoint tomorrow and beg for imitrex injections and 02. Bless u all
Tom
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chewy
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Re: I'm Back. Ontario People read and reply please
« Reply #24 on: May 25th, 2006, 7:46am » |
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Quote:| The video of the guy in clusterbusters of the guy is not even a 1/4 of what I get. |
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Its about identifying not comparing.
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