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darknight
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This is me
« on: Feb 14th, 2008, 10:23am » |
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Hi peeps,
im Simon (29) and suffer from cluster headaches!
My story starts end of June 2006 on a relaxing holiday in Spain.
It was the last day of the holiday and we were having some evening drinks (with my wife) when suddenly i felt a strange headache come on, knowing at the time i didnt suffer from migraines or headaches i put it down to the drink and heat, took 2 paracetamol and started to drink water. The pain wouldnt relent so as it was late anyway we went to bed. She fell asleep and i still had a bad head, eventually the pain dyed down slightly and i fell asleep. I woke the next morning quite dissorientated as i had somehow positioned my head infront of the air con unit at the other end of the bed. Thinking nothing of it other than a bad headache we dismissed it by blaming the drinks and made our way home where the dancing really beagn!!
We had been home for a week and i had no idea what was about to happen. Sat with friends out of nowhere it started again the pain worse than before i became hot agitated and went to stand in the fresh air away from everyone thinking it will pass, it never 3 hours later my wife was on the phone to the National Health service helpline, a doctor called back and after describing the symptoms he said he wasnt sure but it could be meningitis
and to get to the hospital, my thought was im not that bad am i but after realising the pain wasnt going and it had been with me for 3 hours i decided to go to the hospital for help, they werent sure and the lights in the hospital werent helping. They told me it wasnt meningitis gave me some pain releif and kept me in till the next day for observation.
The next day i couldnt wait to leave and get home to bed still no closer to knowing what was going on but calls were made and i was referred to a specialst after 4 weeks of persistant pain (knowing what it is makes it a bit easier to deal with i find) ! I had a head scan and went to see a neurologist who informed me that i suffered from what appeared t be clusters headaches and pesribed me beta blockers and maxalt. By this time it was september and my headaches seemed to go without even taking any meds.
My next attack didnt happen till June 2007 again and lasted a similar time with no effects from the meds i began to wonder what is wrong with me.......
Fast forward through more episodes each getting worse and making my life miserable i went back to the docs asking for some pain relief something anything as i cant take this anymore, after speaking with another neurologist he said i needed to try imitrex and thanks to sites like this one i said OXYGEN and he also mentioned steroids which i would take if it helps but first i want oxygen and hope that works then imitrex and last will be the steroids.
Tuesday is my appointment day to get my new meds till then i dance with the devil but i see light at the end of the tunnel which gives some releif also i feel my cycle has peaked (last week) and i hope for a couple of pain free months until the return of this beast but next time i will have more ammo!!!!
PS THANK YOU ALL ON THIS SITE FOR THE INFORMATION I HOPE IT WILL MAKE LIFE THAT MORE BEARABLE
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Guiseppi
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Re: This is me
« Reply #1 on: Feb 14th, 2008, 10:29am » |
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You're fortunate in being diagnosed so quickly! Good call on the oxygen, 30 years of duking it out with the beast and oxygen is still my first line of defense against him.
Read up on some of the preventative medications available to you also. We use the preventative meds while we are on cycle, getting headaches, to reduce the frequency and the intensity of the attacks. I use 1200 mg of lithium a day as my prevent. Other popuar prevents are verapamil and topomax. Sounds like you have a pretty knowledgeable neuro but it never hurts to do a little foot work for them!
Welcome to the board, so glad you found us. 
Guiseppi
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darknight
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Re: This is me
« Reply #2 on: Feb 14th, 2008, 11:01am » |
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A question for anyone who could help.
Ive noticed alot of people take energy drinks or high caffeine drinks yet as far as i am aware they only halt an attack that builds to a bigger one later???
My neurologist said for me to cut down on caffeine she said yes they can stop but makes it worse late!!!
What are your opinions as id neck any energy drink if it helps!!!
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Stinger
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Re: This is me
« Reply #3 on: Feb 14th, 2008, 11:20am » |
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Well, I've drank a case of Red Bull in the last ten days. When I feel one coming on, I slam the bull. It seems to take quite a bit of the edge off and even cuts the headache a little shorter, not quite as intense. It's probably all in my head, but what the hey. I don't seem to get a worse headache alter on.
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sogna
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Re: This is me
« Reply #4 on: Feb 14th, 2008, 1:28pm » |
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I did the same thing yesterday......it didn't go away entirely but it took the edge off.
Definitely feeling the "shadows" today..... 
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darknight
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Re: This is me
« Reply #5 on: Feb 15th, 2008, 4:39am » |
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I may have to try it as im out of meds till Tuesday when i see my GP for some stronger stuff as for the last year ive just be on beta blockers paracetemaol ibuprofen and maxalt tablets which hardly seemed to touch the sides. I dont want to spend more money on stuff that barely works, i think my cycle is winding down so Tuesday may not be that far away and im happy we are looking at oxygen and imitrex as the way forward!!! Only a few days dancing on my own!!!
PFD for us all!!
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Guiseppi
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Re: This is me
« Reply #6 on: Feb 15th, 2008, 12:27pm » |
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Nobody minds an occasional pity party. The fact is these things hurt like hell and I for one sometimes find myself getting scared shitless of an attack. Staying postive on the board is a lot like whistling while you walk through the graveyard, it makes you feel a little better!
So get on the board and piss and moan now and then, get it all off your chest cuz everyone here goes there now and then. Then get your plan of attack ready and get ready to do battle.
Since you're chronic, you might want to consider lithium as your preventative. I'm episodic, 48, weigh about 190. I use 1200 mg a day while on cycle and it blocks 80-90% of my hits. Don't tell your friends you're on lithium or they all start looking at you funny and talking really softly!  Certainly worth a shot.
For now hang out here and read everything, your silver bullet is in here somewhere. Whether it's a single medication or a combo that helps you, it's worth the effort it takes to find it.
Wishing you some peace soon.
Guiseppi
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Yorky
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learn to meditate (or just sit & do nowt)
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Re: This is me
« Reply #7 on: Feb 15th, 2008, 4:03pm » |
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on Feb 15th, 2008, 5:15am, Tr1n1ty wrote:u know what im sick of all this positive stuff!!!! ive posted little stories asking for info telling you my CH history but after reading it to myself i thought that doesnt explain half of what im feeling!!!!!!
Cluster headaches no wonder before they settled on that name one you would come across is SUICIDE headaches and we all know why!!!
Count yourself lucky if you have it episodic rather than chronic, count yourself unlucky FULL STOP!!!
When im in a cycle i get so depressed and angry!!!
Im an active guy (or like to think so) i do sports, have a full time job and enjoy my friends company and love the games consoles but when i get an episode it seems like life aint worth it i cant do anything i enjoy anything that uplifts, i live in fear, i hate waking up, i hate going to sleep, i hate going to work(most times anyway lol), i hate making plans to go out all because im afraid i may have an attack whilst im out!!! life sucks and hope it changes with my new meds (still positive g-d someone slap me!!)
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dont want to slap you simon.....but i will talk...
im only in st anne's (blackpool)
pm your nos ......tony.
ps ...no one is lucky...or unlucky .
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today is a gift.....thats why it is called the
present.
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kcopelin
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good grief
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Re: This is me
« Reply #8 on: Feb 15th, 2008, 10:14pm » |
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Never, never, never, never quit. Vent all you want, rant, rave, be brutally honest about how crappy you feel-but don't give up!!!!!!
I've been chronic for 3 years-daily hits-was episodic for 23 years prior to that.
Welcome home, Simon.
Now, here's to some pain free time for you!!!!
kathy
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Linda_Howell
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Re: This is me
« Reply #9 on: Feb 15th, 2008, 11:41pm » |
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ACTUALLY????????? around here you get exactly 3 and 1/2 posts that are of a whinning/ venting nature.
After that, you get to let loose with any and all manner of anger and pent-up rage for another 2 posts. By about this time you are ready to pick up our esteemed oar and start to row.
See, now don't you feel SO much better since I showed you the ropes??
Welcome to the nuthouse, and how can we help you??????
Linda
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Kindness, is gladdening the hearts of those who are traveling the dark journey with us.
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Ree
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Re: This is me
« Reply #10 on: Feb 16th, 2008, 2:13pm » |
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Hey there... I'm glad you found us. My husbands story was about the same time frame he was in his mid to late 20's when his first attack occurred. He was at work when it happened to him the first time. He drives a tractor trailer. He wasn't diagnosed properly til we got together when he was 29 so you can imagine that he thought he was dying or something... He is quite eposodic. His cycles come like clockwork which makes his condition almost "unbelievable". I was excited to come here to find our long lost family so to speak. People that know truly know what we go through. He just finished up a cycle at Christmas time... A cycle that lasted about 16 weeks was extremely intense.
He once had a cycle at one time like yours that lasted about 7 months. He had to go into the hospital and have an IV of DHE administered once a day for a week. It broke the cycle but not without the beast hitting one more time at home, about 24 hours after being dismissed from the hospital.
IMPORTANT
One thing that was hard for Dave to give up during cycles was alcohol, but it has been the thing that has shortened his cycles. * I am so proud to say that during cycle he gives up ALL ALCOHOL... some will argue that it doesnt help... we are here to tell you OH YA IT DOES.* He went from having cycles that were so much longer and so much more intense and the alcohol would effect the meds duration.
Good luck and come here often... let us know how you are.
Blessings,
Ree (supporter to Dave who says remember there is a light at the end of the tunnel. Each attack brings you closer to the end, believe and it will end!)
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| « Last Edit: Feb 16th, 2008, 2:14pm by Ree » |
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Proud Mom to US ARMY Kiowa OH58 PILOT~CWO2 SCOTT Hawaii, & USMC Vet~Now POLICE OFFICER SEAN, Citizen of the Month~ Breezy~ Nana 4 Matt/Mike&Aya, MIL To Shino Wife to Dave HI BILL!http://www.myspace.com/dungareespocket http://www.prohawaiian.com
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LeLimey
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Re: This is me
« Reply #11 on: Feb 16th, 2008, 3:23pm » |
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Why are you without meds until Tuesday? That's flippin' ridiculous If the neuro has said what you need then your doctor should be able to prescribe it before then - silly git should anyway as Imigran is listed in the BNF as the only licensed treatment for CH. Sheesh - stuff like this maks me really cross. No one should have to suffer a minute longer than absolutely necessary and I'm hoppin' mad here now.
I'm sorry I'm late to the welcome wagon and I'm truly sorry you have to be here but I'm glad you've found us and we WILL try to help!
Helen
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kcopelin
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good grief
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Re: This is me
« Reply #12 on: Feb 16th, 2008, 11:06pm » |
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Dear Helen,
I'm so glad you're back. What is a "silly git"?
kathy-who is aparently not an English speaking person 
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LeLimey
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Re: This is me
« Reply #13 on: Feb 17th, 2008, 8:15am » |
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Hi Kathy - a silly git is a polite way of saying a steamin' great wassock of course Or a pretty stupid person! It's one that can be used affectionately, its not particularly derogatory but I didn't want to post any of my more colourful epithets until this northern numpty get's to know me better!
Just joking Trinity - SOMEONE has to be a Mancunian I suppose
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sandie99
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Re: This is me
« Reply #14 on: Feb 17th, 2008, 8:30am » |
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Trinity,
I can naturally speak solely on my experience, but energy drinks do not halt my ch hits, they take the pain away for the day. Yes, the pain can return the next day, but then I'll get another can of evergy drink. Just once ch has returned on the same day after I drank a can of energy drink, but just once (and then I didn't drink the first can quick enough, because I wasn't near a can but had one as soon as I could).
What comes to venting, be my quest. We all get frustrated on this pain, the hits, the shadows, what having ch means to the rest of our lives, having wrong treatments or none at all, at docs, at people around us who suddenly do not understand, the depression, the lack of sleep... whatever or all above. Now, this is your ch family, a great bunch of clusterheads and their supporters, who know what it's like. Feel free to share what's troubling you when it's troubling you.
Wishing you PF time,
Sanna
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| « Last Edit: Feb 17th, 2008, 8:32am by sandie99 » |
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CH happends, Live anyway! PF days to us all!
"Do what you can and let God take care of the rest. Leave your heart wide open and always wish for the best" (Sanna Hillu)
"No matter how far out your dreams are, it's possible" (Marketa Irglova)
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darknight
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Re: This is me
« Reply #15 on: Feb 18th, 2008, 5:03am » |
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Hi all,
LeLimey, the resason im without meds till tuesday is that ive been back to the specialists as the meds i were taking didnt seem to touch the sides anymore and the pain and frequency of attacks were growing!(the meds were Propanlol, maxalt, paracetamol, ibuprofen). He told me to stop taking them and im moving onto 02 and Imitrex, i only had 1 maxalt (the only med that sometimes made a difference if i took it early enough) which i used Sat night since then ive had 2 attacks with only paracetamol to take i do anyway (placebo effect makes me feel beeter) so i have to wait for the paperwork to get to my GP so it should be there for my tuesday appointment!! PS where would we be without a Manc!!
Hi Ree, thanks for the support, i too gave up alcohol i wasnt a big drinker but stay away from it completly, it start one for me in or out of cycles!!
Hi sandie99,
I understand each person is different and appreciate ur experience i do think it is something i will try but only when i have meds just in case it has an adverse effect!!
PFD's to you all!!
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LeLimey
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Re: This is me
« Reply #16 on: Feb 18th, 2008, 6:07am » |
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Have you tried Oxygen Simon? Has anyone told you about it or have you read about it? What about Imigran (Sumatriptan) or Zolmitriptan also known as Zomig? There are other options to Maxalt and I just want to be sure you have ALL the info on triptans.
Your wife is more than welcome to come along too y'know, she'll get a very warm welcome and understanding for what she goes through with all of this too. It's awful to see someone you love in this kind of pain.
As for the Manchester bit - well - I've got a mean streak!
Hang in there, we'll help all we can
Helen
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darknight
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Re: This is me
« Reply #17 on: Feb 18th, 2008, 6:17am » |
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LeLimey, my doctors appointment is to discuss the imigran injectables and 02, so i hope to come away with both pesrcibed (i have researched this myself and told the specialist who agreed i needed stronger med)
Manc to Country bumbkin cath ya later!!!!
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LeLimey
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Re: This is me
« Reply #18 on: Feb 18th, 2008, 7:47am » |
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Cheeky bleeder! I'll have you know I'm a Londoner born and bred and transplanted to the midlands by a fate worse than death (Marriage!)
Good luck with getting all you want tomorrow, bear in mind that Imigran subcutaneous injections are the only licensed treatment for CH listed in the BNF so your doctor can't actually refuse you them. Well - he can but if he does tell him you'll contact your local PCT who HAVE to over-rule him.
That being said, Zomig nasal sprays are a very good option too as they half a much longer half life than Imi. Imigran lasts for up to 2 hours whereas Zomig lasts for up to 8 and you can use up to 3 nasal sprays per day. If you are having more than two hits a day this might be a better way to go for you. They take slightly longer to kick in but it's worth that for the extended relief from further hits.
I hope that helps a bit!
Helen
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darknight
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Re: This is me
« Reply #19 on: Feb 18th, 2008, 8:32am » |
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Helen ok im sorry, ur a Southern Fairy at heart(LOL).
Thanks for the info, my GP is great so shouldnt have trouble with whatever i need.
Question though can he refuse me 02?
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LeLimey
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Re: This is me
« Reply #20 on: Feb 18th, 2008, 8:42am » |
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He can - he can refuse you anything but O2 is mentioned as a valid treatment in the BNF so it's not likely. Also, it's about a 20th the cost of Imigran so it's alot cheaper for the NHS and O2 is centrally funded so it doesn't come out of hi practise budget so he'd be a fool to!
I love my O2, it would take a brave doctor to try and take it away from me! It's the best thing ever in my opinion.
And there is NUFFINK soft about me matey, ask allt he bloks I make cry on here!
Helen
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darknight
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Re: This is me
« Reply #21 on: Feb 18th, 2008, 8:51am » |
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Thanks for that Helen.
i just realised my specialist gave me a leaflet on 02 to give to my GP!!
NUFFINK wrong with making a few blokes cry but they aint Northern Monkeys (LOL)
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hotprestwich
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Fuck the devil
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Re: This is me
« Reply #22 on: Feb 18th, 2008, 12:54pm » |
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hey im a manc an'all
is that you simon?????
its dave (sieffy), if it is you im glad you joined up here,
pf wishes man
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darknight
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Re: This is me
« Reply #23 on: Feb 18th, 2008, 1:00pm » |
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SIEFFFFY ever since i joined ive been like who is this hotprestwich!!!!
Love ya man thanks for showing me here!!!!!
sent u a facebook message hope all is well and plans for the big day are on track!!!!
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Superdave
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Re: This is me
« Reply #24 on: Feb 18th, 2008, 6:03pm » |
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l want all of you episodics to know, its better to be chronic cuz that way the beast only screws up your day and not your whole year! LOL
Welcome Tr1n1ty,
This is definatly the place to be for a bad time 
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Wow! you mean it's just in my head?
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