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(Message started by: jonny on Apr 23rd, 2003, 6:08pm)
Title: Board poll time!!!
Post by jonny on Apr 23rd, 2003, 6:08pm
Ok, Im on another roll....this time its about "time".

How long did you suffer before you were diagnosed, before you knew just what was in your head?

Upon being diagnosed how long did it take till you found some thing that worked for you, or, are you still looking?

How long have you been on meds that work and how long have you had CH....Episodic or chronic?

Supporters!!! Have you been with your sufferer since day one or did you have to adjust to it after meeting, if so how tough was that?

This is a free for all, answer what you can and leave the rest ;D

.....................................jonny

You new people here, please join in.
Title: Re: Board poll time!!!
Post by don on Apr 23rd, 2003, 6:14pm
20 + years for correct diagnosis

Couple of years after diagnosis I found a Doc who would ask me what I THOUGHT WOULD work

I have been epidsodic for 26 years and on affective meds for the last 3-5 years.

I no longer wear womans underwear. Not in the poll. Just wanted to let you know.
Title: Re: Board poll time!!!
Post by Karla on Apr 23rd, 2003, 6:26pm
It took me 1 year of constant doctoring before I was correctly diagnosed as chronic ch.

It took 5 years before I found something that worked for me.  Methadone has keept me pain free for 6 months now.

My supporter has been with me since day 1 of original symptoms.  It has been very hard a difficult for him to watch me suffer and not be able to do anything for me.  Being at ch.com has taught him what he can do for me while I am under attach so he doesn't feel useless and I feel better.  He is the greatest and my number 1 suporter!
Title: Re: Board poll time!!!
Post by brain_cramps on Apr 23rd, 2003, 6:31pm

on 04/23/03 at 18:08:26, jonny wrote:
How long did you suffer before you were diagnosed, before you knew just what was in your head?

About 8 weeks (1983).   Scared the shit outta me, then went away.   Came back about a year later and I was diagnosed.


on 04/23/03 at 18:08:26, jonny wrote:
Upon being diagnosed how long did it take till you found some thing that worked for you, or, are you still looking?

In the first 5 years (1983 - 1988 ), I took so many different pills, I felt like a maraca!  None helped.


on 04/23/03 at 18:08:26, jonny wrote:
How long have you been on meds that work and how long have you had CH....Episodic or chronic?

Episodic - only thing that I've ever taken that came close was imitrex pills (worked about 50% of the time so I was HAPPY!!!) (1989-1996) and o2 in ER (about the same time period).   I've been med-free since 1997.

grant  8)
Title: Re: Board poll time!!!
Post by Mark C on Apr 23rd, 2003, 6:42pm

on 04/23/03 at 18:08:26, jonny wrote:
How long did you suffer before you were diagnosed, before you knew just what was in your head?


HA started when I hit puberty about 13.....correctly diagnosed at about age 30.


on 04/23/03 at 18:08:26, jonny wrote:
Upon being diagnosed how long did it take till you found some thing that worked for you, or, are you still looking?


I have yet to find a preventive that works. In the early years the Ergostat type meds gave me some hope, but alas, no help. It wasnt untill Triptans that anything worked for me.


on 04/23/03 at 18:08:26, jonny wrote:
How long have you been on meds that work and how long have you had CH....Episodic or chronic?


Episodic, but may be turning Chronic, I dont want to even think about that! Been on Triptans for about five years now, God Bless Em!

Good thread Mulester!


PFDAN's
Mark
Title: Re: Board poll time!!!
Post by Sean_C on Apr 23rd, 2003, 6:47pm
10 years of nothings wrong with him. We can't find anything medically speaking of course.

2 years of meds before something aborted the beast

Chronic for 14

Episodic for 10

Total 24 years

Total Cluster headaches under my belt 13,580 and counting..............and the beast hasn't killed me yet
That doesn't seem like its right but the math doesn't lie.

14 years @ an average of 2 per day, obviously some days maybe more but a few were probably singles, total equals 10,220

10 years episodic, 2 cycles per year at average 12 weeks, 2 times per day, same deal, peak sessions are 6-8 but an average of 2 per day for 24 weeks equals 3,360

Grand Total 13,580 :o

No wonder I'm messed up, holyshit ;D

Sorry I didn't stay with the subject Bro, I'm fucked up.... I've had almost 14,000 fuckin' clusters:)) LMFAO

I do need to see a shrink:)) :o
Title: Re: Board poll time!!!
Post by brain_cramps on Apr 23rd, 2003, 6:47pm

on 04/23/03 at 18:42:26, Mark C wrote:
Good thread Mulester!

Mark:

I think that's spelled molester.   ;)
Title: Re: Board poll time!!!
Post by andy on Apr 23rd, 2003, 6:57pm

Quote:
How long did you suffer before you were diagnosed, before you knew just what was in your head?
First attack in 1988. twice yearly, diagnosed in 1994              
Quote:
Upon being diagnosed how long did it take till you found some thing that worked for you, or, are you still looking?
 02 has worked for me before being diagnosed  
Quote:
How long have you been on meds that work and how long have you had CH....Episodic or chronic?
Prednisone worked the 2 times i have taken it. 02 has always worked when caught early. 5 year remission from 95 till 2000.  2 1/2 year remission till 2 weeks ago . Still med free. episodic for 15 years         .......................andy
Title: Re: Board poll time!!!
Post by suzy617 on Apr 23rd, 2003, 7:02pm
Diagnosed the second year.

They gave me pain killers and crap that didnt work so basically went med free for  20 years.

Tried Imitrex last year, I LOVE IT!
Episodic, will try the 02 next time.

Still trying to throw those damn circus midgets out the van, they just wont budge.  ;D

Interesting post as usual Jonny.  :-*
Suzy
Title: Re: Board poll time!!!
Post by jonny on Apr 23rd, 2003, 7:35pm

on 04/23/03 at 19:02:26, suzy617 wrote:
Interesting post as usual Jonny.  :-*
Suzy


Someone has to care, Suz ;D :-* :-* :-*

..................................jonny
Title: Re: Board poll time!!!
Post by Frank on Apr 23rd, 2003, 8:55pm

Quote:
How long did you suffer before you were diagnosed, before you knew just what was in your head?

About 6 years.


Quote:
Upon being diagnosed how long did it take till you found some thing that worked for you, or, are you still looking?

Since I was diagnosed, I have tried almost everything doctors prescribe for CH. Some has worked, some has not. Some works during one cycle.. then doesn't work during another cycle.


Quote:
How long have you been on meds that work and how long have you had CH....Episodic or chronic?

I've been on meds that really work... during two cycles (the one that ended in 2000, and this one that started in December). O2 and Imitrex injections seen to be the most reliable.... one or the other works everytime. Still, not much history to go on. Total 14 years episodic.


Quote:
Supporters!!! Have you been with your sufferer since day one or did you have to adjust to it after meeting, if so how tough was that?

My wife never posts here, but she has been with me for 13 of the past 14 CH years. She has been a good supporter ever since I met her. I even managed to have a Kip-10 during our wedding reception dinner. And needless to say, we did not get laid that night either.
Title: Re: Board poll time!!!
Post by Big_Dan on Apr 23rd, 2003, 10:00pm
1) I was 10 when I started getting 2 or 3 severe headaches a day... and my teachers never let me call home because I "always had a headache"... I was the hypocondriac (sp)... I was diagnosed on my first visit to the head doctor when I was 17.

2) I didn't find anything that worked until I was 20... DHE nasal spray... but that stopped working after that specific cycle...

3) I've been on meds since diagnosis, but some work some don't... trex is doing me pretty good right now.  And if memory serves me correctly, I've been episodic for 12 years...

-Big Dan
Title: Re: Board poll time!!!
Post by cootie on Apr 23rd, 2003, 10:09pm
Brad had em for over a year not knowin what da fuck was goin on.......he started out pretty much chronic.

Once diagnosed Imitrex seem'd ta work for him....but.....it took a good 15 to 20 minutes or longer for it ta work. He was put on imitrex and verapimil....he said the nasal imitrex didn't seem to work tho. Some attacks nothing worked or he got hit again too soon.

He's had CH almost 20 yrs now....started out chronic...several attacks a day. Once he got diagnosed meds knocked him down to episodic.

As a supporter I was there since day one.....to be honest I thought he was goin insane...thought it was a tumor ...even thought it maybe wasn't as bad as he acted 'at first'.....it was a long time ago and we had a real active life (and we still do)....he got hit alot when out....he'd get hit for hours tho before the diagnoses. I didn't have alot of patience with it after a while and he wouldn't go to a doc.....he was scared shitless he was dieing a slow terrible death is why. A family doc after about a year mentiond ch and got us on the rite track....I'll never forgit them days......was like we had some deep dark secret. We've still never met anouther CH'r.......lots more knowledgeable now Pam
Title: Re: Board poll time!!!
Post by Frank on Apr 23rd, 2003, 11:03pm

Quote:
I was 10 when I started getting 2 or 3 severe headaches a day... and my teachers never let me call home because I "always had a headache"... I was the hypocondriac (sp)... I was diagnosed on my first visit to the head doctor when I was 17.


Makes ya want to put on your black trench coat, load up the AK-47s and RPGs, go back to that school and get even. ;D
Title: Re: Board poll time!!!
Post by sailpappy on Apr 23rd, 2003, 11:12pm
;D ;D How many times are you going to repeat yourself, seems like we have done this a number of times, Breathing those fumes starting to get to you Bro ?                  ::) ??? :o :o ;D ;D                                                                    Pappy
http://www.gifs.net/animate/sungulls.gif
http://www.gifs.net/animate/sailboat.gif
Title: Re: Board poll time!!!
Post by Charlie on Apr 23rd, 2003, 11:21pm
It's been a long time. I was diagnosed quickly. Likely a month or two because I was seeing a neurologist at the time for seizures. Handy.

Interesting J

Charlie
Title: Re: Board poll time!!!
Post by marty on Apr 23rd, 2003, 11:21pm
5 years, 1997 - 2002 until I was diagnosed.

I cycled out one day after being diagnosed and never got to use the Verapamil, Imitrex Inj. and O2 that was prescribed - Relied on coffee and that seemed to help.

As to the supporter question..  Yep.. Big Adjustment but once you set your mind to doing and completing something you learn to adjust and make the best out of each and every situation.

It will be interesting to see how to combine the supporter function with my own cycle that is due in May sometime.. ;D

Marty
Title: Re: Board poll time!!!
Post by Frank on Apr 23rd, 2003, 11:38pm

Quote:
How many times are you going to repeat yourself, seems like we have done this a number of times, Breathing those fumes starting to get to you Bro ?

If we didn't repeat the same questions over and over... and repeat the same answers over and over... there would be no point to having a message board at all.

Might as well just tell everyone who comes here to click the buttons on the left side of the screen? ???
Title: Re: Board poll time!!!
Post by JDH on Apr 23rd, 2003, 11:45pm
I was diagnosed early on in my late 20's...the first time it happend I thought "this is it! I'm gonna DIE!!!
Went to see a neuro asap and he says you're having CH's and we just don't know much about them but they should eventually go away. Scariest freakin news I've EVER had, man, he ruined my whole day!
I went about 12 yrs trying various meds w/no relief b4 I finally got a script for Imitrex nasal about 5 years ago...it worked and I thought I was in heaven...FINALLY something that could tame the beast. Once I found this site I have learned a lot from talking to people and reading. I can now control it with o2 and Imitrex injections and Verapamil.
Thanks to DJ and this site I now say fuck the beast, you don't scare me anymore you annoying little bastard!

That's my story and I'm sticking to it

Jim
Title: Re: Board poll time!!!
Post by Drk^Angel on Apr 24th, 2003, 12:16am
It was at least 14 to 15 years of yearly or semiyearly cycles before I was diagnosed, and I was introduced to verapamil and O2 at that visit.  

PFDAN................................ Drk^Angel
Title: Re: Board poll time!!!
Post by Donna on Apr 24th, 2003, 4:19am
A really good thread, jonny!  One of the best in quite a while.  This is how our newbies need to get into the conversations.

Proud of you, son.
Title: Re: Board poll time!!!
Post by BruceD on Apr 24th, 2003, 6:43am
Good questions J-man

1. Had them for about 10 years before they were diagnosed. I'm just a dumb hard-headed guy who hates to go to the doc. Plus, at that time only 2 short episodes per year.

2. Been diagnosed now for about 31/2 years and I hate meds almost as much as going to the doc. Nothing really worked before but now I have O2 and it rocks!

3. Ergot worked (partially) for a short bit, but I was doin' it cold until the O2 in Jan 2003. I'm episodic so I just "sucked it up" and kept going.

4. Married to my supporter for the whole time. (Started getting HA about a year & half after getting married)

Later
BruceD
Title: Re: Board poll time!!!
Post by SommelierCH on Apr 24th, 2003, 7:15am
…….jonny,

Damn it! You’re making us think again.

1.      The day after my first cluster hit in 1986 (age 30), I diagnosed myself by reading about headaches in my “Readers Digest-Medical Home Remedies” book. Since I had never had a headache before, and they listed three kinds, my headache was EASILY categorized. So, since I didn’t die from a stroke or aneurysm (I doubted a tumor could instantly become so painful) Cluster Headaches it was.  

2.      Other than OTC stuff, I didn’t get meds until Cycle 2000 (two cycles ago). This was the first time I had insurance, while in cycle. The doctor listened to me and prescribed Maxalt MLT 10mg (quick dissolving, under the tongue, triptan tabs)  and Oxygen. I felt like I won “Queen for a Day” (another: “You’re over 45 if you remember….). Haven’t tried a preventive yet, but I gots the verapamil ready for the next one. I will try shrooms, but, wouldn’t you know, that in this town, every druggie has blow, try finding some good old, organic hallucinogens, and you just wish that Jerry was still around.

3.      Episodic since 1986. 10 weeks every 2 yrs. Last cycle started on Oct. 20, 2002, ending on Dec. 29, 2002. And, I so wish, that I could share my PFDAN with all of you.


I am one of the lucky ones. But, if you are new here, please take comfort in the fact that, for most of us, we will have a significant remission.

Love you all, (Join OUCH, it’s free. Help us be counted)
David J.

P.S. Thanks ………..jonny! We always have new people looking in, this helps to give them a perspective on their own pain. These types of questions aren’t for the benefit of “the veterans”, they are for the edification of the lurkers and newbies. I would also add that this type of question is much more in keeping with the spirit of this site, rather than the political crap, and I am proud to post a response.
Title: Re: Board poll time!!!
Post by Brian_Y on Apr 24th, 2003, 7:32am
1985 had the first ones.  I was 18 years old.  Did not get diagnosed until I was in graduate school in 1994.  I was going to the University of Iowa and had seen ear, nose, throat folks, GPs, etc. etc.

Then one night I had a KIP 50.  My wife was frightened so badly she took me to the emergency room at the U of I Hospital and Clinics.  The nurse thought for a minute and then slapped an O2 mask on me.

Diagnosis complete.  I went back the next day and took her a bottle of Dom.

Verapamil seemed to work, but I am having some issues with it, so the doc is trying beta blockers (shaddup).

I am episodic.  I shot a 39 yesterday while paying golf *only 9 holes... And for that, I am most pleased.

Lazy Bastard
Title: Re: Board poll time!!!
Post by cbolony on Apr 24th, 2003, 8:08am
Over 5 1/2 years

When i went to the neuro and he told me i had CH
I told him to give me imitrex injections that helps me deal with CH.

Imitrex injections i been using for over 1 1/2 years
Preventive meds i take are Verapalmil 240mgs 2x aday
I also use 02 for my low kips
Episodic since 1996
Title: Re: Board poll time!!!
Post by JDH on Apr 24th, 2003, 8:14am

on 04/24/03 at 06:43:43, BruceD wrote:
(Started getting HA about a year & half after getting married)

Later
BruceD


hmmmmmm, me too. I wonder if...........nah, couldn't be, could it?  ;)

Jim
Title: Re: Board poll time!!!
Post by jmorgan52 on Apr 24th, 2003, 8:35am
Since puberty around 1965 I suffered from sporadic "migraines" that seemed to last for a few weeks/months the went away. Was accused of lead swinging to get off school! I recall a long period in my early 20's relatively pain free.

Tried every painkiller and ergot know to man  for the next 30 years and nothing worked.

Episodic most years since about 1978.

Correctly diagnosed around 1994 or thereabouts and finally discovered Imigran injections in 1996 or thereabouts. This was the first and only thing to stop the pain. Maxalt etc does not work for me.

Currently pain free a year after undergoing my controversial detox program :-X

John
Title: Re: Board poll time!!!
Post by jdownes on Apr 24th, 2003, 8:45am
How long did you suffer before you were diagnosed, before you knew just what was in your head?
11 years

Upon being diagnosed how long did it take till you found some thing that worked for you, or, are you still looking?
3 years for O2, Imitrex year after

How long have you been on meds that work and how long have you had CH....Episodic or chronic?
In first cycle now since 7/2001.  Before that 2-3 cycles a year.  Use Prednisone to contain cycle short term, Neurontin to long term control cycle, O2 and Imitrex to combat cluster.  As for how long, today is my 17th anniversary of my first one.  Episodic

Supporters!!! Have you been with your sufferer since day one or did you have to adjust to it after meeting, if so how tough was that?
My wife has been a blessing.
Title: Re: Board poll time!!!
Post by CJohnson on Apr 24th, 2003, 9:00am
 Jonny, you always bust out with the coolest threads.

 My first 2 cycles (years 1 and 2) weren't that bad, so I never went to the doctor. The third cycle (year 3) was bad so I went to my GP. He was clueless. All he did was clean out my ears with warm water, and ask me if I was taking illegal drugs. I think he gave me some antibiotics and tylenol 3.
 The next week I went to a neurologist, and he diagnosed me with CH. Gave me a precription for oxygen and Stadol NS (blechh).

 A couple of cycles later (year 5 or 6) I discovered that running would abort an attack.

 Been episodic only for 10 years. Haven't taken any preventatives, abortives work like they are supposed to. Usually I just run. That almost always works.
-Curtis

 
Title: Re: Board poll time!!!
Post by oringkid on Apr 24th, 2003, 9:31am
Started getting these around 12 years old finally got diagnosed at around the age of 25

I was tried on the old guard stuff (especially before correct diagnoses) Elavil, Inderal, Ergostat sublingual, etc.  Nothing worked.  Basically gave up on looking and "sucked it up"  Years later after finding this place in 2000, went back and tried imitrex...nothing, prednisone worked while on it.  Decided it was better and shorter when I took no meds.  Want to try O2 next cycle.

Been episodic for about 30 years now.

Had this when I got married.  He is a good supporter, gives me sympathy and ice packs and rubs my head when I ask, but then, I don't ask for much, I am used to dealing on my own.  And I don't let it ruin my life.

Sherry
Title: Re: Board poll time!!!
Post by Margi on Apr 24th, 2003, 10:57am
OK, Jonny - I'll add my $.0375 worth (that's  Cdn equivalent) because I agree with Frank and Donna that it IS important for our newbies to see this stuff.  

Mike had one rogue attack when he was about 10 or so that, of course, no one recognized as cluster then.  He started cycling at about age 20, still having no clue what was going on.  I met him when he was 28 and he went into cycle about 2 months after we started dating.  An attack hit him one night and, honest to God, I thought he was dying.  At the very least, I suspected stroke or aneurysm.  The extreme agitation and panic he was experiencing as the pain ramped up scared the shit outta me!   :o  When the attack was starting he said 'oh no, i hope i'm not getting these migraines again.'  No freakin WAY was this thing a migraine!!  I've been a classic meegrainer all my life and there was no aura, no nausea, no gradual buildup, no desire for hibernation in the dark.  This thing was hitting him like a freight train and he a 'deer-in-the-headlights' look about him that I'd never EVER seen anyone have.  :'(  

I wanted to call 911 right away but, through clenched teeth, he told me it would pass.  Yeah, right, I figured.  It would pass when his head finally blew right off his shoulders!!  I had no idea how to comfort  him and felt completely useless.  (I believe my grandfather's expression was 'like tits on a bull' to describe that particular feeling.  Know what, gang?  It never really goes away in the life of a cluster supporter.)  I urged him to go to a doctor but he'd already reached the saturation point with our medical professionals.  But, he did finally go and - lo and behold - they diagnosed him with a sinus infection, sending him on his way with antibiotics and narcotics.   ::)

We got through that cycle after a few weeks and, when it ended, we figured maybe the doc was right - maybe it WAS a particularily wicked sinus infection.  But then, we went through this every six months for the next 10 years.  Tried every trick in the book (I even had him shove mustard powder up his nose one time, after reading that it may abort sinus pain - poor lil dude. LOL)

It wasn't until I found ch.com in 1998 that it hit me like a bolt of lightning that this is what he has. Finding others like us was like finding water in the desert.  VERY emotional discovery!   It wasn't until Jan. 2002 that we got an 'official' diagnosis from a neuro.  But Michael's been a clusterhead for about 25 years now, with remissions now in the 2 - 3 year range but that double edged sword now comes with longer cycles and lingering symptoms that never really go away anymore.  He's going through the silent attacks now and the sore neck thing, and his cluster bump never subsides as it used to.

But at least, thanks to DJ, we're armed with the knowledge and tools to battle the demon.  We've run the gamut of the cluster meds and, yes, we get relief from some things (o2, verap, lith, 'trex and, for awhile, shrooms)  but nothing can stop that train that's due back through here in about another year or so.  :(

That's my story, and I'm stickin to it.
Title: Re: Board poll time!!!
Post by fzapped on Apr 24th, 2003, 11:25am
Episodic for 25 years,  diagnosed correctly in Dec 2000.  I was put on topomax which helped but, caused a kidney stone which needed a procedure to be removed (i'm prone to stones, procedure is not fun).  New cycle started beginning of this month, trying melatonin on my own (cheap OTC) and it appears to be helping.  My neuro just prescibed periactin which I'll try if HA breakthrough.
 fzapped
Title: Re: Board poll time!!!
Post by kjaycox on Apr 24th, 2003, 11:36am
I have been episodic for 16 years, since 1986.
I am 30 now. I tried to tough it out until last year
when I finally confronted the beast. Basically diagnosed to the "T" via the internet. The doctors agreed. Ergotamine initially, minimal success. I am seeing headache "specialist" now. Indomethacine, prednisone, verapamil, depakote, NSAIDS, some successes, some not. I just got my O2 two days ago. I haven't had a situation yet where I can tell if it is going to work for me. I am having shadows everyday still and Kip 2-3's at night but am able to keep them at bay with carotid pressure on my neck with my fingers. I have been able to hide it for the most part until this last episode which has been going for over two months now. I have wonderful support from my fiance who I have been with now for almost two years. I really appreciate all the people who contribute to this website and I want to be a part of it. Thanks to everyone so far....
Title: Re: Board poll time!!!
Post by JDH on Apr 24th, 2003, 11:49am

on 04/23/03 at 23:12:22, sailpappy wrote:
;D ;D How many times are you going to repeat yourself, seems like we have done this a number of times, Breathing those fumes starting to get to you Bro ?                  ::) ??? :o :o ;D ;D                                                                    Pappy


You're right dude, why should we share info. with any newbies that might happen to find ch.com, screw 'em!
Since we already have a nice little circle of clusterheads here already I guess you think that's enough and that's all we need so we should keep any info we have to ourselves...it'll be our little secret...shhhhh, mum's the word.
Get a grip dude, that's not how a support group is supposed to work.

Jim
Title: Re: Board poll time!!!
Post by echo on Apr 24th, 2003, 2:04pm

on 04/23/03 at 18:08:26, jonny wrote:
How long did you suffer before you were diagnosed, before you knew just what was in your head?


Approximately 10 years.


on 04/23/03 at 18:08:26, jonny wrote:
Upon being diagnosed how long did it take till you found some thing that worked for you, or, are you still looking?


About a year before something worked for a short period of time.  Another 12+ to find something that worked for a longer period of time, and it quit working.


on 04/23/03 at 18:08:26, jonny wrote:
How long have you been on meds that work and how long have you had CH....Episodic or chronic?


Been on a self imposed pull back from any preventative meds for nearly two years.  I have been on both sides of the fense.  headed back towards chronic at this point.
Title: Re: Board poll time!!!
Post by jonny on Apr 24th, 2003, 2:22pm

on 04/24/03 at 11:49:12, JDH wrote:
Get a grip dude


LMMFAO!!!.....JIm ;D

Your request is highly unlikely to happen ;D

..............................jonny
Title: Re: Board poll time!!!
Post by NotH20 on Apr 24th, 2003, 3:00pm
Let me dust off the cobwebs.......

1. - Starting have ch's in 1980 at the age of 15 and was diagnosed in 1984 at the Diamond Headache Clinic in Chicago

2. - It took a while - trying various meds and getting extremely frustrated.  Then in 1988 I took Verap for the first time (while pregnant with my first daughter) and that worked for that cycle.  In the early 90's I found Imitrex  ;D and I'm much happier now.  

3. - Episodic cycle that comes around every 18-24 months.  I'm one of the luckier one's I believe.  Cycle lasts for about 4 long months getting hit several times per day.  When I'm out of cycle I use no meds at all.  When in cycle the standard Verap, Prednisone, O2 and of course Imitrex along with others like Zomig and Maxalt.  I did the DHE IV drip during this last cycle and that worked wonders for me   ;D

4. - My supporter has been with me for about the last 6 years.  She handles each cycle wonderfully! :)  She seems to keep me grounded and focused which is something I desperately need when in cycle.  We live large when out of cycle and make the best out of every situation.  When in cycle we're fighting the damn beast away every day.   >:(

Jonny - thanks for asking these questions.  Even though we all have the "same" story - it's nice to hear others that we can relate to.  Keep 'em coming.  Hmmmm did I miss your answers to these questions somewhere?  ;)

Mia
Title: Re: Board poll time!!!
Post by jonny on Apr 24th, 2003, 3:29pm

on 04/24/03 at 15:00:48, NotH20 wrote:
 Hmmmm did I miss your answers to these questions somewhere?  ;)


Ok ok, Mia ;D

1) 14 yrs

2) Around 2 yrs

3) Almost 12 yrs

...........................jonny
Title: Re: Board poll time!!!
Post by ZAIRA on Apr 24th, 2003, 3:42pm
Thank you Jonny, as usual your post is interesting, and this time I’ve understood each of your questions... I hope... ;D

1. I had the first attack the 15th August 1993, I was recovered and 2 mounths later I was diagnosed of CH;

2. In the hospital I had some treatments with no results, the meds decided to give me Lithium, a mounth later the treatment started to work;

3. Lithium+Verapamil and Imitrex, Lidocaine and O2 during the attacks;
I’m episodic for 10 yrs, but my neuro believes I’m becoming chronic becuse my clusters are not only in spring or autumn as usual, but during all the mounths of the year;

4. From the first day all my family and now my life-companion, his name’s Fabio (who is bearing me for 5 years ;D). I think that life with a CH sufferer is hard such ours the beast, but Fabio says that the beast can not divide us, and our love is the best support against it.
I think that this and your help is the “input” which gives me the force to fight;

5. Beast, you are a fucking bastard; >:( >:( >:( >:(

6. The end!!  ;)


LYG, Zaira   :-*
Title: Re: Board poll time!!!
Post by cathy on Apr 24th, 2003, 4:31pm


1/ Wes started suffering with CH in 1999 he was diagnosed in November 2002...so 3 years before he knew it wasn't Trigeminal Neuralgia!

2/ From diagnosis was given Imitrex...thanks to info found on this site...it was working for him.

3/ Episodic...only been on meds which work since last November had clusters since 1999

4/ Been there since they started sometimes it's been tough, but for better for worse that's what we said!

Cathy  :)
Title: Re: Board poll time!!!
Post by wally on Apr 24th, 2003, 6:29pm
i was diagnosed about 2 1/2 years ago after suffering for 10 years. i was told that it was allergies and then my favorite was when i was told that the prescription in my glasses was wrong hahahahaha. im episodic and have been taking maxalt for my ch. it is working very well for me. i usually start dancing with the beast during the 1st week in feb and it stops usually the last week in march... so i guess im very lucky compared to some of you who hang with the beast 24-7...thats my story
peace
wally
Title: Re: Board poll time!!!
Post by cluster0557 on Apr 24th, 2003, 6:53pm
I have had them for 10+ years before beeing diagnosed.  Was ignorant and had no clue why my head hurt like hell every Feb-Apr. Ate lots of Tylenol and Advil then. Was dumb to depend on GP for these years.

Correctly diagnosed with Cluster 5 years ago.
Prevents have never prevented just dampened.

Went Chronic 18 months ago. Prevents got SEMI useless.

Only Meds that help me now  are Verapamil, Maxalt,O2  and Imitrex. All others screw with my system way too much.


Wa
Title: Re: Board poll time!!!
Post by hanisdee on Apr 24th, 2003, 7:08pm
have not found anything that helps

had them for 22 years

my husband (my supporter) met me when I was 19 so he got me with them

Right now I am in remission, I hope a lot of you are too!  No pain no shadow no nothing for 1 week!!!!

Chrissy :D :D :D
Title: Re: Board poll time!!!
Post by captdshea on Apr 24th, 2003, 7:36pm

Johnny, Interesting post if CH is what I suffer with I have ben suffering with it for 25 yrs. From 15 yrs. old
until I turned 40 yrs old no meds. I got hit at 2:20 am
every morning and than on the hour lasted about 30mins this went on for weeks than they quit till the next spring. about 30 yrs old I went a GP who put me on Prehist and tylox no use. this went on for 10yrs. every spring. 30min HA starting at 2:20 like an alarm clock. Kip 7 walking around and around and around some more. But I would not utter a word, had to stay strong.or stronger than the BEAST anyway.

Than gone for SIX YEARS, beleave it ? It was unbeleaveable. Last October BANG can you beleave it?
The Beast is back,  I found the MB after three weeks of
Pain and found a Nuro three days later. Nuro said it was
CH. VERAPAMIL 480mg per day and they were gone in 10 days. Beleave it?  Who the fuck knows.
That is why I said if it is Ch! What do you think KING is it CH?

By the way I hit the Mass. coast  earlyer this month
Onset, Plymouth and falmouth great up there, But cold
for April. Hey! will you be checking out James Montgomery the frist week in August in Onset Mass.
Out side concert, Its great, could be a great place for the New England chapters Mini convention.   8)
Title: Re: Board poll time!!!
Post by jonny on Apr 24th, 2003, 8:32pm

on 04/24/03 at 10:57:33, Margi wrote:
OK, Jonny - I'll add my $.0375 worth (that's  Cdn equivalent) because I agree with Frank and Donna that it IS important for our newbies to see this stuff.  


Im sorry you have to feel that this "IS" an important thread.

But thank you for your input.

...........................................jonny
Title: Re: Board poll time!!!
Post by Jill on Apr 24th, 2003, 9:00pm

on 04/23/03 at 18:08:26, jonny wrote:
How long did you suffer before you were diagnosed, before you knew just what was in your head?


This is a tough question, I had these bad boys before but not as severe as they began coming in March - I think. But when they started in March 2002 and hard, I did get a rather quick diagnosis


on 04/23/03 at 18:08:26, jonny wrote:
Upon being diagnosed how long did it take till you found some thing that worked for you, or, are you still looking?


Sucks to say that I am still looking and looking and looking and have been looking for way to damn long.


on 04/23/03 at 18:08:26, jonny wrote:
How long have you been on meds that work and how long have you had CH....Episodic or chronic?


I have had these things every damn day for fourteen months with not a days break and, like I said, I believe that I had them before that but not as hard.

And there are meds that work and keep on working - oh to be so lucky.


on 04/23/03 at 18:08:26, jonny wrote:
Supporters!!! Have you been with your sufferer since day one or did you have to adjust to it after meeting, if so how tough was that?


I may become a supporter in May if my supporter's cycle kicks in and, to be honest, I am scared because I am not sure what it is like on the supporter's end - guess that I will be learning real soon and I hope that I do okay...

On a side note - because I really want to say this hear and now - my supporter is fantastic and yes, it may have taken some or alot of adjustments but he is doing one hell of a job just as every supporter does. Had to say it....

Jill
Title: Re: Board poll time!!!
Post by NotH20 on Apr 25th, 2003, 7:29am
Zaira - LMFAO at your #5 answer!   :)  HELL YEAH!!!!!!

Mia
Title: Re: Board poll time!!!
Post by oringkid on Apr 25th, 2003, 10:28am
Zaira, ditto what Mia said!!  LMAO!!!

Sherry
Title: Re: Board poll time!!!
Post by Wendy the Brit on Apr 25th, 2003, 6:39pm

Please don't hate me everyone but thanks to this board I got diagnosed via a visit to an excellent neuro less than three weeks from the onset of my first full blown attack last year.

Now have Imigran (nasal) and Zomig but Zomig not much good for me other than for occasional migraines.

I live in a deluded but hopeful world that I am unique and never have another attack ever again. I can dream can't I? (Neuro nearly laughed when I suggested this)

Will continue as a supporter even if I am lucky enough to stay CH free.

All my sympathies to those who had a long battle for diagnosis, and those who are still fighting for one.

W the B
Title: Re: Board poll time!!!
Post by Opus on Apr 25th, 2003, 9:34pm
6 years

6 days

6 1/2 years

Opus :P
Title: Re: Board poll time!!!
Post by arby on Apr 26th, 2003, 12:17am
About 7-8 years (Don't remember with the misdiagnoses and all)

16 years til I found this board -Thanks DJ and everyone else!!

Episodic for 16 years.  O2 has worked for a month.

A very interesting thread
Thanks
arby
Title: Re: Board poll time!!!
Post by Randn918 on Apr 27th, 2003, 10:03pm
I started having them at puberty in 1983. Got diagnosed in 2000 when the got bad enough to make me see a doc.

Last year took prednisone, imitrex, and o2. Worked well and actually went about 18 months PF.

i'm episodic, and I have a wife supporter. Scares her to death to see me in that much pain.
Title: Re: Board poll time!!!
Post by Turts on Apr 29th, 2003, 7:29am
Gday jonny,
Good post. Helps us newbies get involved. many other posts seem to take a personal tone, showing the relationships between the "longtimers". cheers

firstly suffer episodic CH for 10yrs
went undiagnosed for 8yrs. Was actually diagnosed by a Pschologist relative who witnessed a few k7 or 8's after many doctors shrugged their shoulders and threw me out with " ???migraines?"

Tried many mindblowing and mindbending drugs, that screw with your body and soul.  ;D :'( :o >:(

Episodes in 1994-1998-2001 and every six months on.
Every episode has climbed the KIp scale. Until finally reach the all mighty 10.

Last few episodes have had a med that worked but not for the nexet ep, so its trial and error everytime. Seems Imigram Nasal is the way this time round.

The best help Ive had so far is the support of  the new " Family".
Title: Re: Board poll time!!!
Post by Ann on Apr 29th, 2003, 8:18am
on Apr 23rd, 2003, 6:08pm, jonny wrote:How long did you suffer before you were diagnosed, before you knew just what was in your head?  


3 years before I was diagnosed.  I brought a bunch of stuff I had gotten from the net to my neuro and he agreed.  We've been working together ever since.

on Apr 23rd, 2003, 6:08pm, jonny wrote:Upon being diagnosed how long did it take till you found some thing that worked for you, or, are you still looking?  


It took a year to find something that works.  Had to play with dosage a bit.  I'm still wondering if it's working cause the bastard has made himself known since the beginning of April.  Attacks getting closer and closer.

on Apr 23rd, 2003, 6:08pm, jonny wrote:How long have you been on meds that work and how long have you had CH....Episodic or chronic?  


I've been on meds for 3 years now I guess.  Like I said in previous answer...not all that sure they work.  I'm episodic...I think...starting to feel chronic. >:(  As for supporters, my husband died the first year this hell started.  My "new" significant other has been great.  He has his moments of denial, but when I get mad he's there for me!   ;D

I'm still wearing women's underwear.   ;D ;D ;D
Title: Re: Board poll time!!!
Post by brain_cramps on Apr 29th, 2003, 1:05pm

on 04/29/03 at 08:18:33, Ann wrote:
I'm still wearing women's underwear.   ;D ;D ;D

and the relevance of this is ?     ???
Title: Re: Board poll time!!!
Post by NotH20 on Apr 29th, 2003, 2:52pm
Hey cramps - thank goodness you said something.  I was totally confused and thought I had missed a joke somewhere  ???

Mia
Title: Re: Board poll time!!!
Post by Wendy the Brit on Apr 29th, 2003, 4:54pm
Turts

Know how you feel, it is a bit like starting at a new school when everyone else seems to know each other.
You just have to pile in and talk to people until they notice you and start talking back!


Wendy the Brit
Title: Re: Board poll time!!!
Post by jonny on Apr 29th, 2003, 5:05pm

on 04/29/03 at 07:29:39, Turts wrote:
Gday jonny,
Good post. Helps us newbies get involved. many other posts seem to take a personal tone, showing the relationships between the "longtimers". cheers


Gday Turts,

Welcome to the family Mate.

.................................jonny
Title: Re: Board poll time!!!
Post by els on Apr 29th, 2003, 6:46pm
I guess I'm lazy but I think this is great!  I get to hear other peoples stories without braving the archives.
    So here goes;
    I first had these about 1984 when I was 23, was told they were sinus headaches.  I actually went through about a year of allergy shots and thought they worked cause the headaches went away. I had maybe 2 and a half years of what I thought were 10s but now I know were maybe 6s.  
    I have had breaks of a year or two here and there but usually have a 4 to 6 week cycle spring and fall every year, with the attacks getting a little worse after every break.  
    I diagnosed myself online about 4 years ago and changed to a new doctor at the same time.  He's really good, usually gives me what I ask for without too much trouble, and he's really cute.  
    My last cycle was a nasty surprise in the summer almost 3 years ago.  (until the one I'm in now)  That was when I started taking Zomig instead of Immetrex, (tablets, I've never tried injections, chicken I guess)  Zomig works good for me if I  chew or crush it.  It kicks in in 15 mins tops and I can feel the pain drain away in about 2 mins once it starts to work.  All that is left is a bruised feeling and I can usually get at least 4 hrs of sleep before I get hit again.
  In the fall that year I found out I had low thyroid function, which runs in my family, and started taking Synthroid.  I didn't have another cycle for 2 and a half years which is the longest I have ever been pain free.  I  really thought the low thyroid had something to do with it and that I was cured, although I know I couldn't have had  it in my early 20s.  When I started this cycle I had my thyroid level checked but it was fine, so I guess there is probably no connection after all.
     Anyway, now I'm 42 and into the worst cycle I've ever had, with 3 or 4 really bad hits a day.  I'm back on the Zomig and am looking into Verapamil and O2.
    Good Luck to all.                           els.    
Title: Re: Board poll time!!!
Post by jonny on Apr 29th, 2003, 6:55pm
Thats why I posted this thread, Els

Newbies need to know they can jump in at any time.

SUE ME ;D

.......................................jonny
Title: Re: Board poll time!!!
Post by NotH20 on Apr 30th, 2003, 11:01am
Sue you Jonny?

Well if you got that Pharm. contract - then there maybe a line forming   :P

Have you heard anything yet?

Mia
Title: Re: Board poll time!!!
Post by Ann on May 2nd, 2003, 8:16pm

Quote:
I'm still wearing women's underwear.      


and the relevance of this is ?      


If you guys had read all the posts you would have noticed that Don wrote that he didn't wear women's underwear anymore.  I was just having some fun with Don.  Sorry it confused you.

Guess I'm the only one who gets me!  ???
Title: Re: Board poll time!!!
Post by KingOfPain on May 2nd, 2003, 10:59pm
Hey Bro.

1. 16 years. Still suffering (it's been 22 years), finally diagnosed 6 years ago.

2. 5 years. Still, nothing works everytime or all the time.
Still looking. Still have hope for a cure.

3. 1 year (current meds work most of the time).
22 years episodic.

4.N/A

5.    ;D


KingOfPain
Title: Had Ch for Re: Board poll time!!!
Post by Tim_w on May 3rd, 2003, 9:15pm
It took 8 years to be dianosed
Have used many meds some worked for a while and than qiit working
20 years Episodic 4 years Chronic
My wife of almost 26 years is my biggest supporter , she has been there all the way!!!!!!!
 PFDAN to all                          Tim_w aka happy pappy


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