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Murazza
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Going mad...
« on: Nov 25th, 2002, 5:07am »
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Hadn't had an encounter with the BEAST for a couple of weeks, but have been honoured with a visit again over the weekend. Im 24 and have had IT for almost 6 years now, almost can't remember how life was without IT. Sneaks up on my in the middle of the night, starting with a little tickling and very soon bashing out through my eye out of my scull. I'm speeding from level 8 and 9 to 10 in only a couple of minutes. The dancing ritual starts, out of any meds and I am completely aware of all that is coming for the next couple of hours...  
 
Looked at the clock: 3.38 AM.
 
What a way to start the day! After this nothing can be worse now or can it??? I go down the stairs and stand in front of the mirror, awaiting the crescendo that soon will kick in. My left eye is swollen and my nose is dripping already. I try to push my eye as far into my head as I can, as a sort of counter-force against the BEAST that is trying to push my eye out... I walk around the living as the pain gets stronger, trying to think about other things, but it's no use, the ferocity seems to be boiling my brain, only thing I can think is:"Ow no, stop, stop, STOP just PLEASE STOP". First I burry my head deeply into the couth and try to hold my breath to make the intensity of the pounding a little less. I roll off the couth onto the floor as I move to level 9. While I am rolling over the floor with my hands tied around my neck and my head between my arms I try to push the pain back in where it is coming from, but the BEAST is to strong. Different colours and patterns are flashing in my eyes through the darkness and my ear starts to beep.  After a while I wet a towell and hold it against my left eye, which now is really pooring out like I am crying. "Ow please stop, make it stop!!!" I gasp for air as my nose is stuffed, and I feel the strenght leaving my body, I know there is nothing else left to do but to cry this one out. Only into it for a mere 40 minutes I am out of energy for the dance. I go back to my room and crawl into bed, it hasn't even been an hour and I know I'm not even past the half-way mark. I rest my pounding head on the towell on my left shoulder, the power and intensity are still increasing upto level 10. I wonder how it can be that all these beatings have still not damaged anything in my head. I try not to move, as I feel every move immediately transported to the stings that are forcing out. Hard to imagine, but I even feel my heartbeats banging through...
 
Just lay down, immobilised, and suffer: it will stop, it WILL stop!!! I know the begging won't help, but I still do, as I find praying to the God who put this onto me very weird... Who am I begging to anyway??! The BEAST doesn't listen. Minutes go past, turn into hours, I can't move or think. Just laying there in this insanity, this agony, I start thinking about ending it all for once and forever. Am i losing it? Am I going mad?  I think I am... What have I done to deserve this? What have WE done?? It is almost 5.30 AM as FINALLY I feel the pain is getting less, and I am thankful it is ending. Slowly the BEAST is leaving like he came: in silence. The pain drops to a mere 6, which is really a relief in comparison to what I have experienced the last few hours. I manage to turn around again and feel totally worn- and knocked-out, but happy I will be able to sleep soon. And even I dread the next attack, ironically I feel glad that I'm not picked by IT every day. Before falling asleep I feel for everyone who deals with this DEVIL every day. Nothing we can do, just take comfort in those who truly understand what it's like, and we all know there's nothing like it....
 
Surely you all know, and have read it already over and over again, so sorry for bothering you with my BEAST, but I just had to let it out...
 
Wishing all of us painfree days and nights...
« Last Edit: Nov 25th, 2002, 9:33am by Murazza » IP Logged

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suzy617
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Re: Going mad...
« Reply #1 on: Nov 25th, 2002, 5:26am »
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Murazza, sorry you had the need to find us. Do you take any meds for this? There are alot of people here that can help you with their experiences and what they take. If you have not already, read all the info on this site. Good luck to you,
suzy
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Re: Going mad...
« Reply #2 on: Nov 25th, 2002, 5:37am »
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Dear Suzy,
 
thank you for reading. And in stead of sorry I am very happy I found this site, my first visits all ended in tears, cause I know so well what everyone is going through. I have had some meds from my dr, which don't really help, he doesn't seem to take it seriously. Wish he would just for ONCE have an attack, only ten minutes, then he would know!!
 
Still gratefull for every tip I find here, think I'll first try the water-therapy. Good luck to you to sis
 
Sincerely...
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Re: Going mad...
« Reply #3 on: Nov 25th, 2002, 6:02am »
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What you need to do first off and I'm sure everyone will agree, is to find a dr. that WILL at least try to help you. Many in here use imitrex and 02. You didnt specify what you have tried but read, read, read. My dr. didnt know much about ch either but I filled him in the best I could and brought him a list from which I found here, of all preventives and abortive meds. Its a start and if he is not willing to help then please go find another. Don't settle for his ignorance. Have a good pf day....
suzy
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Re: Going mad...
« Reply #4 on: Nov 25th, 2002, 12:23pm »
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Murazza - welcome to the board, but sorry you felt compelled to seek us out. I would seek out a doc I felt was paying attention to MY condition and take charge of the med situation. I tend to get pushy when I'm in pain. "its better to get pissed off than pissed on."
Hang tough and keep us posted. Seems like there are others from your area looking for kindred spirits. Hope you can hook up with them.
Good luck
domm
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Re: Going mad...
« Reply #5 on: Nov 25th, 2002, 1:08pm »
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Domm,
 
this site has given me more information than any doctor, I will definately try to change the cycle, but we are rather unlucky because we have long waiting-lists in the medical care. I think I will make an appoinment with netniet's doctor, she seems reasonably happy, so he must be doing a good job Smiley
 
Hope you are doing well too, htank you for the welcome, and c you around  Wink
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Re: Going mad...
« Reply #6 on: Nov 25th, 2002, 1:17pm »
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Hai Murazza,  
 
I'm on the board, I send You a privat message so I can say it in dutch to you. Hope no one minds  Undecided.
It's easer for me.
 
Net-
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Re: Going mad...
« Reply #7 on: Nov 25th, 2002, 4:01pm »
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Murazza,
 Go ahead and pray to God. Satan causes sickness and disease not God. CH is the biggest test of faith I have ever had. It's hard to believe in anything when this nightmare happens day after day. Just try your best to keep the faith and keep on keeping on. praying for PFDAN   PJB
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Re: Going mad...
« Reply #8 on: Nov 25th, 2002, 4:18pm »
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You see, I for one find that very difficult to do. Would a loving, caring God let us go thru this living hell? Maybe you will say because he loves you he tests you in the hardest way. I thought about that to, but this is one test too far for me Sad He must be a sadist to think of such a thing anyway?? ??? haven't hurt a soul to deserve this...
 
This was my first post, have come an AWFUL long way like the lot of us, and feel I am losing it little by little. If it wasn't for my parents I don't know if I would still even be here... Don't know how much more I can take, have 2 find a good neuro soon...
 
It's almost midnight here, so guess I'll see ya around tomorrow,
 
thanks for you being there
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Re: Going mad...
« Reply #9 on: Nov 25th, 2002, 5:06pm »
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Welcome to the board!  Sorry that the beast is repeatedly bashing your cranium with a jagged, dirty, boiling hot, mountain sized rock.  Good luck!
 
PFDAN............................. Drk^Angel
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Re: Going mad...
« Reply #10 on: Nov 25th, 2002, 5:32pm »
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A good post Murraza. We all understand and it's why we keep coming back. Only fellow chers have any vague idea what this can do to us.
 
I agree with you too. There is no good reason for CH and no need to worry about a satan because, if God is all-powerful, all-benevolent, and always present, Satan cannot exist.  
 
Look around, read the archives, enjoy our nonsense and let us know who you're doing.  
 
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Re: Going mad...
« Reply #11 on: Nov 25th, 2002, 5:40pm »
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on Nov 25th, 2002, 5:32pm, Charlie wrote:
Look around, read the archives, enjoy our nonsense and let us know who you're doing.  
 
Charlie

 
Man Charlie, don't you think that's a little personal? Smiley
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Re: Going mad...
« Reply #12 on: Nov 25th, 2002, 5:49pm »
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Geeze Ted,  
 
I can't have any fun  Cheesy
 
I should modify this but it's too funny. Thanks you old fart.  Cheesy  
 
Charlie
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Re: Going mad...
« Reply #13 on: Nov 25th, 2002, 6:46pm »
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fingers moving a little too fast, or was that a freudian lisp?  Grin
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Re: Going mad...
« Reply #14 on: Nov 25th, 2002, 7:45pm »
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LMAO Charlie, I didnt even notice that until Ted pointed it out. We know what you have on your mind.  Grin
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Re: Going mad...
« Reply #15 on: Nov 25th, 2002, 7:53pm »
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Murraza,  Your post though it may seem faithless to you is a sure sign of whats inside you. Do what you have to do to get through. I felt the same way too.     PJB
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Re: Going mad...
« Reply #16 on: Nov 26th, 2002, 1:32am »
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Ted, Charlie and the others
 
didn't have a visit last night, so woke up rather happy, but when I read your reactions it made me even happier Smiley Never thought a slip of the finger could work out so funny  Grin
 
Had a good chat with netniet yesterday evening, she had some good info too!
 
Ow, and Charlie: I'm doing ok for today, hope you are fine too Smiley
 
PFDAN to all of you off course, thank you for being there, this site really works... so special thanks to DJ!
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Re: Going mad...
« Reply #17 on: Nov 26th, 2002, 2:11am »
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Murazza wrote
"You see, I for one find that very difficult to do. Would a loving, caring God let us go thru this living hell? Maybe you will say because he loves you he tests you in the hardest way. I thought about that to, but this is one test too far for me  He must be a sadist to think of such a thing anyway??  haven't hurt a soul to deserve this... "
 
 
 
I hope you find peace and pf days soon. There is a God, He is all caring and loving and hates to see us suffer. Unfortunately, there is evil and as long as the evil exists. so will pain and suffering. THERE WILL COME A DAY HOWEVER WHEN IT WILL END! I only write this because you asked. I don't neccesarily see my having clusters as a test of my faith, but as something that as a human living in a world of good and evil must deal with. I won't say anymore as I don't want to start something. If you want to talk more about it though, I'd be happy to in private. Feel free to IM me.  
 
PFDAN to you..
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Re: Going mad...
« Reply #18 on: Nov 26th, 2002, 2:29am »
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on Nov 26th, 2002, 1:32am, Murazza wrote:
Never thought a slip of the finger could work out so funny  ;D

 
that only answers part of Charlie's question. Smiley
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Re: Going mad...
« Reply #19 on: Nov 26th, 2002, 2:41am »
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on Nov 25th, 2002, 6:46pm, domm wrote:
fingers moving a little too fast, or was that a freudian lisp?  ;D

 
My favorite definition of a Freudian slip was from Cheers when Cliff Claven used the term and was asked what it meant (You have to remember his character to really get a kick out of this).
 
"It's when you say one thing but mean a mother."
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Re: Going mad...
« Reply #20 on: Nov 26th, 2002, 6:11am »
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Quote:
Would a loving, caring God let us go thru this living hell?

 
It's the only way I would have found the people here. Not such a bad trade off from my perspective.
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Re: Going mad...
« Reply #21 on: Nov 26th, 2002, 6:14am »
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You know what my next logical question would be then don't you don?
 
Don't get me wrong, this is a wonderful site with wonderful people, but still everybody is sorry for the new members for having to find this place...
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Re: Going mad...
« Reply #22 on: Nov 26th, 2002, 6:57pm »
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Just sorry there's a need for this place...sorry the number of fellow
 sufferers  Cry,  
survivors  Angry  
or  people who are incredibly strong, intelligent and kind  Roll Eyes
(I'm sure we all fall into one or all of the above categories)
increased.
Not sorry you found the site.  Keep the faith bro.
God is good. All the time.  If He wasn't I'd be dead meat by now. Roll Eyes
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Re: Going mad...
« Reply #23 on: Nov 26th, 2002, 10:08pm »
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I can't answer the God/Satan questions-but all I know is everybody "carries crosses" in life-some are worse than others and I can always find someone worse off than me and my cluster headaches.  I do not minimize their pain or effect on life ( I know all too well how terrible it is) but I have a sister with MS, an infant son that died, a brother with cancer, etc. I hate these things, but if this is my cross, I sometimes consider it better than the alternatives.  And there is always still more good, even though its hard to see it through the fog at times.  Hang in there- Smiley Smiley Smiley
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Re: Going mad...
« Reply #24 on: Nov 27th, 2002, 12:45am »
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Since I'm a religious nut, I'll offer my "view" about God and Satan and such.
 
God is good.
 
I think we give God or Satan too much credit for giving us crap. IMO that's called "life".
Crap happens, and needs to happen for various reasons. God doesn't take that away, but usually helps us to cope with it. He doesn't cause crap, but allows us stupid people to run things the way we want = crap will happen. Diseases are kind of neutral. No punishment or reward, just "random encounters" (role-playing term) in life. They can make us or break us. We get our grades afterwards, and all affecting stats will be calculated in.
 
Satan is mean, but I don't think God allows him to do whatever he pleases with us, so he needs to be subtle and pretty much be content in pulling our mental strings.
Misery loves company.
 
I think there's a quite large "neutral zone" in which we are kind of on our own. God keeps order, and Satan can't have more power on us than we give him. Satan can't directly cause anything but he tries to coerce us to do his will.  
God CAN act directly, but even He usually uses humans to get things done they way He wants.
 
Blah. Too hard to put ideas on paper. I'll shut up (at least for a sec).
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