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Topic: Board poll time!!! (Read 1032 times) |
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jonny
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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.
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| « Last Edit: Apr 23rd, 2003, 6:10pm by jonny » |
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don
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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.
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| « Last Edit: Apr 23rd, 2003, 6:15pm by don » |
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Karla
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Re: Board poll time!!!
« Reply #2 on: Apr 23rd, 2003, 6:26pm » |
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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!
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Karla
suffer chronic ch
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Proud Mom of Chris USMC Semper Fi
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brain_cramps
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Re: Board poll time!!!
« Reply #3 on: Apr 23rd, 2003, 6:31pm » |
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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? |
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About 8 weeks (1983). Scared the shit outta me, then went away. Came back about a year later and I was diagnosed.
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? |
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In the first 5 years (1983 - 1988 ), I took so many different pills, I felt like a maraca! None helped.
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? |
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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 
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| « Last Edit: Apr 23rd, 2003, 6:33pm by brain_cramps » |
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Mark C
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Re: Board poll time!!!
« Reply #4 on: Apr 23rd, 2003, 6:42pm » |
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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? |
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HA started when I hit puberty about 13.....correctly diagnosed at about age 30.
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? |
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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 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? |
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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
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Sean_C
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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 
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)
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brain_cramps
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Re: Board poll time!!!
« Reply #6 on: Apr 23rd, 2003, 6:47pm » |
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on Apr 23rd, 2003, 6:42pm, Mark C wrote:
Mark:
I think that's spelled molester. 
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andy
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Re: Board poll time!!!
« Reply #7 on: Apr 23rd, 2003, 6:57pm » |
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Quote:How long did you suffer before you were diagnosed, before you knew just what was in your head?
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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?
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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?
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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
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suzy617
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Re: Board poll time!!!
« Reply #8 on: Apr 23rd, 2003, 7:02pm » |
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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. 
Interesting post as usual Jonny. 
Suzy
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When God measures men, He puts the tape around the heart, not the head.
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jonny
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on Apr 23rd, 2003, 7:02pm, suzy617 wrote:
Interesting post as usual Jonny.
Suzy |
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Someone has to care, Suz ;D
..................................jonny
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Frank
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Quote:| How long did you suffer before you were diagnosed, before you knew just what was in your head? |
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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? |
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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? |
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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? |
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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.
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| « Last Edit: Apr 23rd, 2003, 8:57pm by Frank » |
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Big Dan
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Re: Board poll time!!!
« Reply #11 on: Apr 23rd, 2003, 10:00pm » |
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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
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cootie
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Re: Board poll time!!!
« Reply #12 on: Apr 23rd, 2003, 10:09pm » |
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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
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| « Last Edit: Apr 23rd, 2003, 10:14pm by cootie » |
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Cause and Effect......"Cause is the effect concealed, Effect is the cause revealed"
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Frank
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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. |
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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
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sailpappy
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Re: Board poll time!!!
« Reply #14 on: Apr 23rd, 2003, 11:12pm » |
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;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 ?  ??? ;D ;D Pappy
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Charlie
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Re: Board poll time!!!
« Reply #15 on: Apr 23rd, 2003, 11:21pm » |
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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
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marty
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Re: Board poll time!!!
« Reply #16 on: Apr 23rd, 2003, 11:21pm » |
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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
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Frank
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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 ?
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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? ???
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JDH
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Re: Board poll time!!!
« Reply #18 on: Apr 23rd, 2003, 11:45pm » |
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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
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Azrael
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Re: Board poll time!!!
« Reply #19 on: Apr 24th, 2003, 12:16am » |
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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
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Donna
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Re: Board poll time!!!
« Reply #20 on: Apr 24th, 2003, 4:19am » |
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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.
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BruceD
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Re: Board poll time!!!
« Reply #21 on: Apr 24th, 2003, 6:43am » |
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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
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SommelierCH
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Re: Board poll time!!!
« Reply #22 on: Apr 24th, 2003, 7:15am » |
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…….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.
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Brian_Y
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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
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cbolony
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Re: Board poll time!!!
« Reply #24 on: Apr 24th, 2003, 8:08am » |
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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
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