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Topic: How many chronics are out there? (Read 1214 times) |
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hdbngr
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How many chronics are out there?
« on: May 24th, 2005, 10:41am » |
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In response to neuronurse's earlier posting about Deep Brain Stimulation, I want to post an informal survey:
How many of us are chronic? By chronic I mean you have not found any medication or procedure that provides significant relief and are getting hit every day without remission.
V
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nani
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Re: How many chronics are out there?
« Reply #1 on: May 24th, 2005, 10:50am » |
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I can't say I'm no longer chronic, but I've achieved about 98% pain free time with kudzu. I still get "hit" now and then and a few shadows here and there. Prior to kudzu, I was fully chronic for 4 1/2 years.
I would ask all chronics out there who are considering surgery to give one of the 3 (or all three) alternatives a try. Kudzu and LSA are legal and are very promising. 'Shrooms work for a whole lot of folks. I have had brain surgery (for something else) and the recovery is as bad if not worse than CH.
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| « Last Edit: May 24th, 2005, 10:50am by nani » |
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unsolved1
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Re: How many chronics are out there?
« Reply #2 on: May 24th, 2005, 11:57am » |
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Chronic .... count me in. I started 'this cycle' in October of 2000 
Unsolved
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vig
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Re: How many chronics are out there?
« Reply #3 on: May 24th, 2005, 12:16pm » |
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From Google:
Define CHronic:
In medicine, a persistent and lasting condition is said to be chronic (from Greek chronos). For example, a chronic illness is one that persists for a long time, usually more than three months. By analogy, this adjective has come to describe problems which cannot be solved in a short time, or which will recur regardless of action.
CH uses a different definition of CHronic:
Chronic. In this form, cluster headache occurs daily for more than a year with no remission or with pain-free periods lasting less than one month.
We are all chronic by the first definition in that we have this condition for life, most likely.
I WAS CHronic by the second definition as well, but no longer, thanks to the ClusterBusters, without side effects and daily medication.
I think Cluster HeadaCHers use the term CHronic when we really mean continuous.
my $.02
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| « Last Edit: May 24th, 2005, 12:17pm by vig » |
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E-Double
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Re: How many chronics are out there?
« Reply #4 on: May 24th, 2005, 12:36pm » |
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According to IHS criteria I turned chronic this past March.
I Could care less about the label and for me it has kinda been easier knowing that I will get hit each day and not worrying about getting old life back....This is life!!
Giving one more shot @ meds then going a different route!
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kissmyglass
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Re: How many chronics are out there?
« Reply #5 on: May 24th, 2005, 12:53pm » |
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Amazing to me, other than unsolved, people can't answer a simple fuckin question.
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vig
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Re: How many chronics are out there?
« Reply #6 on: May 24th, 2005, 1:03pm » |
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on May 24th, 2005, 12:53pm, kissmyglass wrote:| Amazing to me, other than unsolved, people can't answer a simple fuckin question. |
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you didn't answer it either!
(it's not a simple question)
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| « Last Edit: May 24th, 2005, 1:04pm by vig » |
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kissmyglass
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Re: How many chronics are out there?
« Reply #7 on: May 24th, 2005, 1:09pm » |
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Just ignore me paul....having a rough time with this friggin head & to make matters more fun, I'm out of paxil...... 
My answer to the question...ME
Kev
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Gator
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Re: How many chronics are out there?
« Reply #8 on: May 24th, 2005, 1:52pm » |
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So is what you're really asking: How many chronics haven't found a preventative strategy that works for them?
Count me in.
I abort with oxygen and imitrex when I can get them. Still no working prevents.
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Karla
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Re: How many chronics are out there?
« Reply #9 on: May 24th, 2005, 2:13pm » |
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2/98-3/05 I was chronic. Now I seem to be eposoidic.
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Karla
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gMike
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Re: How many chronics are out there?
« Reply #10 on: May 24th, 2005, 2:55pm » |
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My Neuro said I was chronic, not sure about the true definition.
I've been having daily hits since Nov. 04 and haven't found anything that works for me.
Mike
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kimmeesue
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Re: How many chronics are out there?
« Reply #11 on: May 24th, 2005, 3:21pm » |
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hoppin' on the bandwagon
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Jonny
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Re: How many chronics are out there?
« Reply #12 on: May 24th, 2005, 4:33pm » |
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Started chronic in 1974......what year is it now?
In 91 I found a cocktail to keep my beast in check, not totaly but enough to ask myself how the fuck did I do all those years.
The cocktail still works and even my Neuro is scratching his head as to why, I think that if there is a God he is cutting me slack for all the years I was in a living hell.
Kev, I think you left some L&V at my place last time here, PM me if you want me to send it 
Sorry to you folks that nothing works, I rode that bus myself for way to long.....never give up the fight...EVER!!!
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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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Linda_Howell
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Re: How many chronics are out there?
« Reply #13 on: May 24th, 2005, 5:05pm » |
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o.k. my hand is raised. 
Since 1988. One day I just realized they weren't going away.
I only got about one year as an episodic.
I have never found 1) one medication as a preventative including, uh...um.. well..alternative methods.
Linda
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hdido
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Re: How many chronics are out there?
« Reply #14 on: May 24th, 2005, 5:17pm » |
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Chronic here, get 6-8 hits every day since 11/96, no meds work, or oxygen, being evaluated for DBS next month but reports that I've read and discussions with neurologists, neurosurgeons, anesthesiologists and pain psychologists indicate that the operation is spectacularly unsuccessful, unless one speaks with Dr. Gennario Bussone of the University of Milan (who helped develop the procedure for chronic CH)-according to him the operation is almost 100% successful in totally stopping attacks but offers no evidence to back up the claim and nothing published supports this claim, so I won't have it performed but hope that perhaps a new combination of medicine might be tried that will help. The ONSI operation, done only in England, while less invasive, has also been and continues to be a failure but is still being performed-from speaking with those who have had the operation, major problems are leads coming loose or breaking time and time again and very restricted lateral head movement from the scar tissue which gets worse each time one must have another operation to fix the leads.............................
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hdbngr
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Re: How many chronics are out there?
« Reply #15 on: May 24th, 2005, 5:24pm » |
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Is the ONSI the Occipital nerve stimulator implant? If it is, have oneof those, and guess what? One of the leads has pulled loose so it is only working half as well as it could be. Still glad I have it, as it detracts from the pain in the back of the head, somewhat.
They do perform it in the states, and some Docs are looking into installing a lead in the front...forehead above the affected eye to help combat the pain of clusters. Jury is still out on this one.
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Jonny
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Re: How many chronics are out there?
« Reply #16 on: May 24th, 2005, 5:33pm » |
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on May 24th, 2005, 5:24pm, hdbngr wrote:| They do perform it in the states, and some Docs are looking into installing a lead in the front...forehead above the affected eye to help combat the pain of clusters. Jury is still out on this one. |
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What happens when the pain changes to the othere eye?
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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.
- Guiseppi
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hdido
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Re: How many chronics are out there?
« Reply #17 on: May 24th, 2005, 6:04pm » |
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Yes, ONSI is occipital nerve stimulator implant and loose/broken wires are very common problems. The pain does sometimes switch to the other eye, in which case another operation is needed. You are right, the jury is still out on this one (and DBS).
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Candycane
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Re: How many chronics are out there?
« Reply #18 on: May 24th, 2005, 6:55pm » |
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I am chronic, but working on changing that! CAUSE IT SUCKS!!!! 
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alchemy
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Re: How many chronics are out there?
« Reply #19 on: May 24th, 2005, 7:09pm » |
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chronic 
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BarbaraD
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Re: How many chronics are out there?
« Reply #20 on: May 24th, 2005, 8:09pm » |
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Chronic....
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Roxy
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Re: How many chronics are out there?
« Reply #21 on: May 24th, 2005, 11:05pm » |
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Started out chronic.......still was as of about 20 minutes ago..... 
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Tim_w
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Re: How many chronics are out there?
« Reply #22 on: May 24th, 2005, 11:21pm » |
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CH 27 years Chronic 8
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Cinder
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Re: How many chronics are out there?
« Reply #23 on: May 25th, 2005, 8:11am » |
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Have been Chronic for 5 years.
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yikes-another-one
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Re: How many chronics are out there?
« Reply #24 on: May 25th, 2005, 7:20pm » |
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not officially yet,
but 4-8 headaches every day
since Sept 2004
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