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Topic: WE NEED TO FIND A NEW NAME..... (Read 854 times) |
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Ree
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WE NEED TO FIND A NEW NAME.....
« on: Sep 17th, 2005, 9:00am » |
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FOR CLUSTER HEADACHE..... Holy Crap.... We are so sick of people saying "You are stressed"... "Yes I get those too"... "Take Excedrine Migraine"...etc etc...
How can we get with the Head of Neurology USA... the World and find a new name for the condition that has nothing to do with headache at all.... My husband got hit 5 times in the past 24 hours and our close circle of friends and family STILL DONT FUCKEN GET IT.....YES REE SAID FUCKEN.....
My daughter just said Im gonna get those and I'm gonna die.... we need some help...... where is that link to the explaination of Cluster....I need to make copies... love ree
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nani
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Re: WE NEED TO FIND A NEW NAME.....
« Reply #1 on: Sep 17th, 2005, 9:03am » |
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Personally, I say it's a neuro vascular pain disorder.
hugs, nani
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sandie99
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Re: WE NEED TO FIND A NEW NAME.....
« Reply #2 on: Sep 17th, 2005, 9:17am » |
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I use horton's neuralgia all the time. 
Sanna
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Jasmyn
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Re: WE NEED TO FIND A NEW NAME.....
« Reply #3 on: Sep 17th, 2005, 9:55am » |
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Ree I'm so sorry but I'm just as pissed off.
I know most people here say that a Kip 10 is not something we often get. I kept quiet but I just can't anymore.
I've been literally crawling the floors and hitting my head screaming and crying like a mad woman the past 2 weeks or so sometimes getting hit just 2-3 hours apart.
Yip, I wanna go to ER but there is no ER here. I don't have the luxury of O2 and my doc 600km away, across the border, said the limit on Imitrex is 2 refills(4 injections) a month.
I am useless as a human being because not only am I exhausted and depressed but I cannot get meds to help me through because the docs here and in SA thinks of this as a HEADACHE! They keep on insisting that I try other HEADACHE meds that I've been on and that doesn't work.
At least I can get verapamil on prescription and ergotamine on the black market(US AID meds sold here) but none of these abort an attack.
They talk to me as if I'm a drug addict or stupid and unfortunately something happens during these attacks that affects my speech so maybe I sound like one.
Svenn had really been a lifeline for me out here, encouraging me to carry on because there were days that I just wanted to give up. But because so many of you make it through this and also have at this stage to go through this gives me hope, that is why I stick like glue to the site when I can see again and when I am relatively painfree(because with so may hits the shadows becomes very intense) even if I just read and are too tired to write.
Sorry to vent but I hate CH and I hate the name... Uhg!
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Jazz 
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Ree
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Re: WE NEED TO FIND A NEW NAME.....
« Reply #5 on: Sep 17th, 2005, 10:36am » |
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Jasmyn... you and Dave are in the same boat right now. I am so sorry for your pain. I think he is going to try the kudzu it seems as if we are desperate at this point to just get rid of the pain... Have YOU tried the Kudzu...
THANKS FOR THE LINK STEVE AND DAVE SAYS HI.... WE MISS YOU AND THE PORCH SERENADE... everytime Breezy picks up her acustic... I think of you...lol
What I need to know from you folks is does he have to go off other stuff... to use Kudzu? Can it be mixed with triptans? Can it be mixed with Neurontin...? Yes I have read the links but am limited to the information in my brains hard drive... I am not being a good supporter because of the exhaustion we are going through...last night he woke me up because he was going to use a third injection in less than 24 hours and I stopped him... they aren't working folks.....
(((( but Im not whining. If anyone accuses me of whining I will hunt you down, find you and impress my wrath upon you. So watch it.)))
.... love ree
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Jonny
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Re: WE NEED TO FIND A NEW NAME.....
« Reply #6 on: Sep 17th, 2005, 10:43am » |
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I dont know about Dave, Ree...but every time I have used Trex shots I ended up getting three times the HA's I would normally get.
I will never use it again!!
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It is up to YOU to educate yourself and then help your doctor plan your treatment. If you just sit down in front of your doctor and say "make me better" you are setting yourself up for a great deal of pain.
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don
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Re: WE NEED TO FIND A NEW NAME.....
« Reply #7 on: Sep 17th, 2005, 10:48am » |
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Is Dave using the full injection?
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Ree
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Re: WE NEED TO FIND A NEW NAME.....
« Reply #8 on: Sep 17th, 2005, 10:52am » |
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I know that jonny... he hates imatrex too... he is just desperate. He hit kip 10 last night for sure because he has been handling the hits pretty much with the 02 and neurontin... Last night the O2 wouldnt work.
and Jas... don't let anyone dictate the kip of your attacks... everyones pain threshold is different. To me every CH attack IS A KIP 10... because they shouldnt exist at all... I would never discount anyones pain.
Be well Ree.. (((hoping to get through a day with my hubby being pain free just enough to enjoy...)))
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Ree
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Re: WE NEED TO FIND A NEW NAME.....
« Reply #9 on: Sep 17th, 2005, 11:40am » |
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yup.... he is using the full injection... because we watched a certain someone and a few of the others use 1/3 doses and that is extreme bull shit, they were also abusing the imatrex big time... and as jonny said getting hit and hit and hit......cutting down the dose takes away the half life the doc told dave...Dave can take meds to kill a horse usually... He needs the full strength dose he used one with an old exp date and it didnt work at all... we're at the end of the rope... one saving grace is when they get bad they usually peak and decline and go away....
ramblin ree
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cootie
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Re: WE NEED TO FIND A NEW NAME.....
« Reply #10 on: Sep 17th, 2005, 12:19pm » |
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I know EXACTLY what ya mean Ree.......anymore I explain them plain and simple.......they feel like amputation without sedation. Simple and to the point Pam
PS: I agree about the trex.......last cycle Brad seem'd to panic and took more tabs then usual and was afraid of the shadows. He works in a noisey print shop and expected to do alot of measureing and fix stuff and keep the residient idiots from screwin up clients orders and he could handle thinkin he'd get hit cuz he is out of it a long time when he does. But he got hit right and left last cycle and didn't even follow a pattern. But he was takein as many as 4 to 5 tabs a day !!!! I think it gets rid of em but you just get MORE in the long run to deal with. He's not tried the shots yet but has em......he's never done em before so dunno how this will work out. He hates needles !!! This is a fucked up disease or whatever ya call it........such sudden pain !!!! Not fair !!!!!!! Can't beleive no one has come up with something better.......course guess they need to figure out how to cure the common cold FIRST !!!! 
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| « Last Edit: Sep 17th, 2005, 12:25pm by cootie » |
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Opus
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Re: WE NEED TO FIND A NEW NAME.....
« Reply #11 on: Sep 17th, 2005, 1:02pm » |
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on Sep 17th, 2005, 11:40am, Ree wrote:yup.... he is using the full injection... because we watched a certain someone and a few of the others use 1/3 doses and that is extreme bull shit, they were also abusing the imatrex big time... and as jonny said getting hit and hit and hit......cutting down the dose takes away the half life the doc told dave...Dave can take meds to kill a horse usually... He needs the full strength dose he used one with an old exp date and it didnt work at all... we're at the end of the rope... one saving grace is when they get bad they usually peak and decline and go away....
ramblin ree |
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For me 1/3 shot is the best, but everyone is different, the full shots took longer to work, but that maybe because I have little fat, and the full auto injector shots make a bubble of trex under my skin. 1/3 shots given with a insulin hypodermic work faster for me, and don't give me any of the pounding heart and flushed face side effects that I got with a full shot. I have used trex many times without getting anymore hits for the while day. We have to remember of course that everyone is different.
For a new name for CH, all I can thin of is "Clustered Attack Syndrome"
Syndrome is what any illness is caused that has no known cause, and no cure.
The hit would be called "Cluster Attacks" The term headache has got to go.
Opus/Paul
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cootie
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Re: WE NEED TO FIND A NEW NAME.....
« Reply #12 on: Sep 17th, 2005, 1:06pm » |
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I think headache comes from head hurts scenerio......well you know what I mean. Then all the other head pain afflictions are called headaches which does not do the REAL THING any justice. But seems to me your head doesn't ache......it friggin HURTS !!! Ramblin words Pam
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yikes-another-one
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Re: WE NEED TO FIND A NEW NAME.....
« Reply #13 on: Sep 17th, 2005, 1:10pm » |
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No matter the name,
without a cast or visible sign of illness,
we still feel guilty about not getting things donw,
andmy mom will still say,
"Take two aspirin and lie down if it's that bad."
I need a big black marker and some posterboard,
somehting I can carry around wiht me.
"Brain Strike, be back in 40 minutes"
something that buys enough time
to pace and rock and cry and whine,
and then when it disappears,
you cna drop it and get right back to work.
hahahahaha
that will be the day.
TJ
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sandie99
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Re: WE NEED TO FIND A NEW NAME.....
« Reply #14 on: Sep 17th, 2005, 1:24pm » |
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on Sep 17th, 2005, 9:55am, Jasmyn wrote:
I am useless as a human being because not only am I exhausted and depressed but I cannot get meds to help me through because the docs here and in SA thinks of this as a HEADACHE! They keep on insisting that I try other HEADACHE meds that I've been on and that doesn't work.
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Jas........
I'm so, so sorry the beast is giving you hard time right now... 
(((((((((Vibes))))))))
You're not useless, you know. You're a great person! I do know how low ch attack can take... It's the darkest place to be. Nobody should face it alone, so I'm so glad that you've got support from Svenn!
If there's something I can do to help you out, let me know asap, okay?
PF wishes,
Sanna
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| « Last Edit: Sep 17th, 2005, 1:25pm by sandie99 » |
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CH happends, Live anyway! PF days to us all!
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"No matter how far out your dreams are, it's possible" (Marketa Irglova)
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cootie
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Re: WE NEED TO FIND A NEW NAME.....
« Reply #15 on: Sep 17th, 2005, 1:37pm » |
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Oh wow Jas........seein how even the shit that is supposed to help doesn't always do the trick rite away at least we have the meds available. We were limited to only so many trex a month too but our doc had to call the physicians hot line for the insurence co to explain so he could get more. Not enuff but was more at least !!! Doc reworded his diagnoses to retractable migraine and got the ins co to pay for more trex. Sounds wierd I know but it worked and he said he has dealt with the ins co's so much and there CRAP he knows how to work around them with WORDING. Whatever works....weren't not goin to complain cuz of the words he used. Hang tough.......yo got alot of people here to hang on with you Pam
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Ree
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Re: WE NEED TO FIND A NEW NAME.....
« Reply #16 on: Sep 17th, 2005, 2:04pm » |
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You are so brave Jazzi... believe that it won't last forever...You also give us a reason to fight harder.
love Ree
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rextangle
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Re: WE NEED TO FIND A NEW NAME.....
« Reply #17 on: Sep 17th, 2005, 2:13pm » |
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How about we call CH "Inverted Viking Hat"?
Jasmyn, I'm so sorry you're going through this
Hang in there!
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don
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Re: WE NEED TO FIND A NEW NAME.....
« Reply #18 on: Sep 17th, 2005, 2:24pm » |
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Its only when I use full doses the frequency of attacks increases.
When I use 1/3 the attack is aborted, I can function again and there is no increase in frequency.
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cootie
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Re: WE NEED TO FIND A NEW NAME.....
« Reply #19 on: Sep 17th, 2005, 3:15pm » |
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Cluster crunch ?
I have a vikeing hat I got off ebay for halloween........inverted....OUCH !!!! Cluster buddy Pam
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Charlie
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Re: WE NEED TO FIND A NEW NAME.....
« Reply #20 on: Sep 17th, 2005, 3:15pm » |
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The only thing I came up with years ago is some kind of "syndrome" but after coming here.... shows ya what I know.
Hmmmmmmm 
Charlie
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nani
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Re: WE NEED TO FIND A NEW NAME.....
« Reply #21 on: Sep 17th, 2005, 3:44pm » |
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on Sep 17th, 2005, 10:36am, Ree wrote:
What I need to know from you folks is does he have to go off other stuff... to use Kudzu? Can it be mixed with triptans? Can it be mixed with Neurontin...? |
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Ree, I took Neurontin and kudzu with no ill effects. It's not recommended that triptans and kudzu be used at the same time. Some people have done so with no ill effects, and some have taken trex within 2 hours of kudzu, which makes the trex ineffective. The thing is, kudzu (if it's going to work) will help enough that he won't need trex. If he's getting hit so hard, he may want to start on the maximum dose and spread it out over the day (taking a dose at least two hours before he usually gets his big hits). Have him try to use O2 if he's still getting hit the first few days. It's really the best abortive choice for kudzu.
Jasmyn... I'm sorry you're getting slammed, also. Have you considered kudzu? If you can't get it over there, PM me.
hugs and PF wishes to both of you, nani
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Jasmyn
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Re: WE NEED TO FIND A NEW NAME.....
« Reply #22 on: Sep 17th, 2005, 5:25pm » |
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Thanks to everyone.
Quote:Jasmyn... I'm sorry you're getting slammed, also. Have you considered kudzu? If you can't get it over there, PM me.
hugs and PF wishes to both of you, nani |
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Nani apparently you can't use it when you have very low blood pressure and mine is as low as it can go since childhood. Fainting is my hobbie But thanks.
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Jazz
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broomhilda
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Re: WE NEED TO FIND A NEW NAME.....
« Reply #23 on: Sep 17th, 2005, 6:27pm » |
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on over to all of you, breaks my heart, pf wishes flying your way from Canada...
Ree, I so agree with you, some days just wish headache was not attached to this 
Thinking and wishing for pf times
Andrea
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AussieBrian
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Re: WE NEED TO FIND A NEW NAME.....
« Reply #24 on: Sep 17th, 2005, 7:39pm » |
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Thunder-head's disease?
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