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        New Message Board Archives >> 2005 Cluster Headache Specific Posts >> How many chronics are out there?
        
(Message started by: hdbngr on May 24^th, 2005, 10:41am)

Title: How many chronics are out there?
Post by hdbngr on May 24^th, 2005, 10:41am

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

Title: Re: How many chronics are out there?
Post by nani on May 24^th, 2005, 10:50am

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.

Title: Re: How many chronics are out there?
Post by unsolved1 on May 24^th, 2005, 11:57am

Chronic .... count me in. I started 'this cycle' in October of 2000 :-/

Unsolved

Title: Re: How many chronics are out there?
Post by vig on May 24^th, 2005, 12:16pm

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

Title: Re: How many chronics are out there?
Post by E-Double on May 24^th, 2005, 12:36pm

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!

Title: Re: How many chronics are out there?
Post by kissmyglass on May 24^th, 2005, 12:53pm

Amazing to me, other than unsolved, people can't answer a simple fuckin question.

Title: Re: How many chronics are out there?
Post by vig on May 24^th, 2005, 1:03pm

on 05/24/05 at 12:53:34, kissmyglass wrote:

Amazing to me, other than unsolved, people can't answer a simple fuckin question.

you didn't answer it either!
;;D
(it's not a simple question)

Title: Re: How many chronics are out there?
Post by kissmyglass on May 24^th, 2005, 1:09pm

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

Title: Re: How many chronics are out there?
Post by Gator on May 24^th, 2005, 1:52pm

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.

Title: Re: How many chronics are out there?
Post by Karla on May 24^th, 2005, 2:13pm

2/98-3/05 I was chronic. Now I seem to be eposoidic.

Title: Re: How many chronics are out there?
Post by gMike on May 24^th, 2005, 2:55pm

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

Title: Re: How many chronics are out there?
Post by kimmeesue on May 24^th, 2005, 3:21pm

hoppin' on the bandwagon

Title: Re: How many chronics are out there?
Post by Jonny on May 24^th, 2005, 4:33pm

Started chronic in 1974......what year is it now? ;;D

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!!!

Title: Re: How many chronics are out there?
Post by Linda_Howell on May 24^th, 2005, 5:05pm

o.k. my hand is raised. [smiley=wave.gif]

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

Title: Re: How many chronics are out there?
Post by hdido on May 24^th, 2005, 5:17pm

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.............................

Title: Re: How many chronics are out there?
Post by hdbngr on May 24^th, 2005, 5:24pm

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.

Title: Re: How many chronics are out there?
Post by Jonny on May 24^th, 2005, 5:33pm

on 05/24/05 at 17:24:34, 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.

What happens when the pain changes to the othere eye?

Title: Re: How many chronics are out there?
Post by hdido on May 24^th, 2005, 6:04pm

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).

Title: Re: How many chronics are out there?
Post by Candycane on May 24^th, 2005, 6:55pm

I am chronic, but working on changing that! CAUSE IT SUCKS!!!! >:(

Title: Re: How many chronics are out there?
Post by alchemy on May 24^th, 2005, 7:09pm

chronic :'(

Title: Re: How many chronics are out there?
Post by BarbaraD on May 24^th, 2005, 8:09pm

Chronic....

Title: Re: How many chronics are out there?
Post by Roxy on May 24^th, 2005, 11:05pm

Started out chronic.......still was as of about 20 minutes ago..... 8)

Title: Re: How many chronics are out there?
Post by Tim_w on May 24^th, 2005, 11:21pm

CH 27 years Chronic 8
Happy Pappy

Title: Re: How many chronics are out there?
Post by Cinder on May 25^th, 2005, 8:11am

Have been Chronic for 5 years.

Title: Re: How many chronics are out there?
Post by yikes-another-one on May 25^th, 2005, 7:20pm

not officially yet,

but 4-8 headaches every day

since Sept 2004

Title: Re: How many chronics are out there?
Post by hdbngr on May 27^th, 2005, 12:44pm

on 05/24/05 at 17:33:28, Jonny wrote:

What happens when the pain changes to the othere eye?

Me myself, I scream a little louder! Just kidding. I have only had two instances where the pain "jumped" sides, the rest of the time the pain has always been on the left.

Title: Re: How many chronics are out there?
Post by hdbngr on May 27^th, 2005, 12:59pm

Thanks for the response, folks.

So we have sixteen of us (listed below). Did I miss anyone?

Next question: Do any of you fall into one or more of these three categories: Uninsured, on disability, or a veteran?

I want to speak some more with neuronurse on how many chronics are out here.

Unsolved1
Edouble
kissmyglass
gator
gmike
kimmeesue
Linda_Howell
hdbngr
Hdido
Candycane
BarbaraD
alchemy
Roxy
Tim_w
Cinder
Yikes-another-one

Title: Re: How many chronics are out there?
Post by ClusterChuck on May 27^th, 2005, 1:12pm

27 years, CH
7 years chronic

Presently no preventatives work. Due to heart problems, can't use imitrex or any triptans.

Oxygen (and this site) is the only reason I am still alive.

Have insurance, not on disability (was refused), Viet Nam era veteran.

Chuck

Title: Re: How many chronics are out there?
Post by E-Double on May 27^th, 2005, 1:18pm

Just a veteran of life ;)

I have good insurance

Haven't had to go on disibilty for these things ( won't let it happen!!) I am lucky I guess....I also have a short term disability plan that will pay/suppliment pay for time I have taken or have to take.

Like I said lucky!

Be well!

E

Title: Re: How many chronics are out there?
Post by kissmyglass on May 27^th, 2005, 1:40pm

no insurance :(

Title: Re: How many chronics are out there?
Post by drwalker on May 27^th, 2005, 2:35pm

I am VERY chronic, suffering roughly 8 per day, and the ONLY medication I haven't tried is Lithium, which I know from tests that I'm allergic to. None of the medications work for me, either preventative or active. Since these started Jan. 2nd, 2004, I have only had 5 days (not consecutive) that I have been headache free. I am in so much pain that my jaw chatters and face muscles spasm uncontrollably, as well as constant drooling during these attacks (I have been told by friends that it looks like I'm having the DT's or a siezure). Does anyone have any ideas to help me out here?

Sincerely in Chronic KIP 9 or 10,
DougLass

Title: Re: How many chronics are out there?
Post by Tiannia on May 27^th, 2005, 5:37pm

Chronic here. Been 23 1/2 months straight. Kudzu helps some to mask it but I am still getting hit and still have to abort with trex. So I really can not say that I am episodic. Looking into LSA to see if I can get some substantial PF time. Had a 2 4 day totally pf breaks one in Dec 2003 other April 2004. No such luck since. HA goes from 3 to 9 a day.

-Tia

Title: Re: How many chronics are out there?
Post by Redd715 on May 27^th, 2005, 7:44pm

By CH definition.....

Chronic going on 13 years... (only Dx correctly for a little over a year) {working on breaking that pattern} ;)

uninsured...

Title: Re: How many chronics are out there?
Post by drwalker on May 28^th, 2005, 1:55am

Chronic here, with 8-10 hits every day, and I've tried hundreds of meds, and NONE work...stuck on constant KIP 9 or 10...only 5 single days headache free since New years, 2004

DougLass

Title: Re: How many chronics are out there?
Post by Gator on May 28^th, 2005, 2:17am

on 05/27/05 at 12:59:48, hdbngr wrote:

Next question: Do any of you fall into one or more of these three categories: Uninsured, on disability, or a veteran?

I'm a veteran - not that THAT means shit. Since my wife and I make more than $33k per year I can't get treatment from the VA. Bastages!!! >:( >:( >:(

Title: Re: How many chronics are out there?
Post by kissmyglass on May 28^th, 2005, 10:01am

on 05/28/05 at 01:55:22, drwalker wrote:

...stuck on constant KIP 9 or 10...

DougLass

I don't think so

K

Title: Re: How many chronics are out there?
Post by drwalker on May 28^th, 2005, 10:40am

Hey kissmyglass, if you're going to be like that, you can KISS MY GLASS...and jump off the golden gate bridge for all I care...I can't sleep due to the pain, I constantly pace the floor, kick, scream, holler, hit things and people (my roommate on occasion), and within 10 minutes of it starting, I have uncontrolled muscle spasms, I look like I'm going through the DT's or having a seizure(I've never had a sip of alcohol in my life, and I'm currently trying yet another anti-seizure med. I am trying to get my oxygen scrip filled, but my insurance is not wanting to pay for it. I'm starting another hit, so I need to go deal with it instead of disbelievers like you...have a nice life...

DougLass

Title: Re: How many chronics are out there?
Post by survivor13 on May 28^th, 2005, 11:27pm

Went from Nov. 1991 to Sept. 2001 (almost every other day average). 3 years remission. 6 months of hell. Now almost 6 months of nothing. Chronic to eposodic or remission again. Not on disability but I am protected under Family Medical Leave Act! Had to go through hell to qualify, but my job is safe!

Title: Re: How many chronics are out there?
Post by Gator on May 29^th, 2005, 12:17am

on 05/27/05 at 14:35:49, drwalker wrote:

on 05/28/05 at 01:55:22, drwalker wrote:

Chronic here, with 8-10 hits every day, and I've tried hundreds of meds, and NONE work...stuck on constant KIP 9 or 10...only 5 single days headache free since New years, 2004

DougLass

on 05/28/05 at 10:40:17, drwalker wrote:

Sounds like you got more than CH going on there. Uncontrolled drooling and muscle spasms/seizures are not a normal part of the package. How long do your attacks last? Have you had an MRI? If not - I'm thinking it's past time for one. Since it takes about 2 to 6 weeks for most of the ch meds to reach peak effectiveness, it's not possible that you have tried hundreds of meds in 17 months (68 weeks). So just what meds have you tried?

Editted to add in all of DougLass' posts in this thread.

Title: Re: How many chronics are out there?
Post by BobG on May 29^th, 2005, 1:08am

Hey DougLass.
Over on the Medications, Treatments, Therapies board is a string titled ATACAND. It looks promising...have you tried it?

Title: Re: How many chronics are out there?
Post by hdido on May 29^th, 2005, 4:41am

on 05/28/05 at 10:01:17, kissmyglass wrote:

I don't think so

K

I've been chronic since '96, get 6-8 hits a day and the majority of them are kip 9-10 until my meds kick in-everyone is different, kiss and consider yourself lucky that your attacks don't reach those levels on a regular basis.

Title: Re: How many chronics are out there?
Post by kissmyglass on May 29^th, 2005, 7:20am

on 05/29/05 at 04:41:47, hdido wrote:

It was the constant steady kip 9-10 I didn't buy, I read that as all day long. I see now he dosen't say how long his attacks actually last.
Since you know nothing about my head, you should stfu.

Kev

Title: Re: How many chronics are out there?
Post by hdido on May 29^th, 2005, 9:44am

Oh, now I'm terrified! Is SFTU the best that you could come up with? [smiley=crackup.gif]

Title: Re: How many chronics are out there?
Post by E-Double on May 29^th, 2005, 10:16am

Enough of the bitching back and forth.

We all have pain from this CHit and those who may not have CH are just being guided in a different direction whether it comes out the right way or not OR is misinterpreted to be nasty.........

Centuries of dealing with this crap by people on this board has pretty much given us all more knowledge then most doctors!!!!!

There are quite a few HA types that resemble CH but can be treated with less dangerous meds and very effectively and quickly if just sought out!

Sorry for the continued hijack......

Let's get back to giving Hdbanger the info she wanted to compile!

Best,

E

Title: Re: How many chronics are out there?
Post by Renee on May 29^th, 2005, 10:50am

CH sufferer for 23 years.

Chronic for last 9 years.

insured.

Title: Re: How many chronics are out there?
Post by sandie99 on May 30^th, 2005, 12:13pm

Chronic since fall 2003.

Title: Re: How many chronics are out there?
Post by clusterkat on May 31^st, 2005, 4:37pm

(((raises her hand)))
my suffering is daily, there hasnt been a med-routine thats given me more than a day of relief for months now.
ive forgotten what its like to be myself any more with these intense cycles of cluster attacks. obort meds help for brief periods, till the rebound effect occurs, then im sick & in pain.
^kat

Title: Re: How many chronics are out there?
Post by burnt-toast on Jun 5^th, 2005, 1:51am

Chronic as charged.

Can't remember what being normal is, or what its like to go through a day without being exhausted. Meds. oxygen no help.

Currently on 3rd neurologist in 10 years. He has discussed options for Hypothalamic Stimulation which I believe is this surgery.

It's tough to get good information regarding this procedure and its success/failure rates but I'm looking. I'm running out of choices.

Title: Re: How many chronics are out there?
Post by cazman on Jun 5^th, 2005, 8:12pm

i am not cronic but i just wanted to say i will pray for youall tonight cause what you go thru i cant even fathum , 3 months out of the year is small and i feel bad for winning , me god bless you all and i hope someone gets a hold on this

Title: Re: How many chronics are out there?
Post by Lizzie2 on Jun 6^th, 2005, 12:29am

Got CH sometime around fall of 2003 - chronic since fall of 2004 as I hit the year long mark.

I don't always have them every single day - in fact, since my bilat knee surgery last Wednesday, I haven't been hit, but occasionally I will go up to a week without a hit. Rare, but it can happen.

Jonny,

As far as the CH switching sides with the ONSI - for anyone who has reported attacks on the opposite side, they do the stim implant bilaterally now. Otherwise, evidence has shown the beast will flip and beat up the other side of the brain. >:(

I have insurance, but it won't pay for any of the current surgical options - including ONSI. I'm not a veteran. And not on disability.

Keep on keepin on :)

Lizzie2/Carrie :)

Title: Re: How many chronics are out there?
Post by MarkHW on Jun 6^th, 2005, 5:14pm

I was chronic until a little over a year ago. I had sporadic cycles since (and any time I drank alcohol), but the last month I'm having 1 -3 a day again even though my daily meds have been doubled.

Mark