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(Message started by: Bandette74 on Dec 11^th, 2004, 11:55am)

Title: triggers?
Post by Bandette74 on Dec 11^th, 2004, 11:55am

does everyone have them? others have suggested that i try to identify triggers for these things, but i'm not sure i have them.

do you trigger for the whole episode or the individual attacks or does it vary?

i think smoking at least irritates it. i don't smoke, but i'm often around smokers, and when this thing hit me hard this time i was around cigar smoke. i also suspect mildew--i had a bad attack years ago, and i was in my car that had a leaky windshield. it had rained recently, and there was some mildew in the carpet. i had it all fixed up, and there were no more problems (serious ones) for a while.

i'm not sure about any of this. i'm trying to figure it out. they may just be correlations versus actual cause and effect. any ideas?

would you mind sharing some of your triggers with a newbie?

Title: Re: triggers?
Post by eyes_afire on Dec 11^th, 2004, 12:08pm

Hi Bandette 74,

Quote:

would you mind sharing some of your triggers with a newbie?

'Life' is my trigger. They will come no matter what I do or don't do.

--- Steve

Title: Re: triggers?
Post by john_d on Dec 11^th, 2004, 12:11pm

alcohol, the nice thing about a cycle is that it dries me up fast, lol. I really don't drink alot, but I drink regularly, at least I did.

Title: Re: triggers?
Post by BobG on Dec 11^th, 2004, 1:22pm

Lack of stress.
Alcohol.
strong stink, like perfume.
Cold, dry wind.

Smoking? Nope. Smoking may be a fix. You get to die a decade early.
;;D

Title: Re: triggers?
Post by Jonny on Dec 11^th, 2004, 1:36pm

No triggers at all, im sure I would have found one in the last 30 years if there was one ;;D

Title: Re: triggers?
Post by nani on Dec 11^th, 2004, 1:57pm

For me: bending over, sunlight into my eye, alcohol (if I'm having one of my occasional severe episodes, I'm a chronic), sometimes I am even triggered by sensory overload...too much noise and/or activity around me.

Title: Re: triggers?
Post by Bandette74 on Dec 11^th, 2004, 2:01pm

ah-ha. so there may be some or not. maybe, like i suspect for myself, there are thing that irritate it but not exactly bring it on.

thanks everyone!

other than attempting to identify patterns of episodes and learning about preventative along with abortive treatment strategies, is there anything in particular i should think about before seeing the neurollogist? what can i expect from my initial visit? i just want to be as prepared as possible to get the most out of the visit.

Title: Re: triggers?
Post by marlin on Dec 11^th, 2004, 2:45pm

on 12/11/04 at 13:57:24, nani wrote:

For me: bending over

Now wait just a minute. You bragged about having a very active sex life. How's that possible if you can't even bend over without getting a CH LMFAO! [smiley=laugh.gif] [smiley=laugh.gif] [smiley=laugh.gif]

Title: Re: triggers?
Post by nani on Dec 11^th, 2004, 2:57pm

Quote:

You bragged about having a very active sex life. How's that possible if you can't even bend over without getting a CH LMFAO!

LMAO marlin. No wonder you're not gettin' enough! That's not the only way to do it! ;;D There are instructional pamphlets available if you need ideas. ;;D

Title: Re: triggers?
Post by nani on Dec 11^th, 2004, 3:02pm

Quote:

what can i expect from my initial visit?

A lot depends on the dr. Have you been keeping a headache diary? If so, bring it. Print and bring any info from here and the OUCH site that you find applicable. Insist on some kind of treatment. The first neuro I saw was a total jerk. By the time I saw him my episode was over so he said. "Well, your description sounds like textbook CH. If you're not having any HA now I don't know why you're here. Come back again when they start again." >:( He wouldn't even help me have a treatment plan for the next round!

Title: Re: triggers?
Post by Bandette74 on Dec 11^th, 2004, 3:20pm

on 12/11/04 at 15:02:50, nani wrote:

i am THE MOST polite, kind, thoughtful, etc. person in the world--even in the throws and thrashes of pain (comperably), BUT. all that ends the second a highly-paid professional fails to do his/her job. i accepted my primary Dr not treating me but offering a referral. i will not accept a specialist not doing his/her job. i'd go berzerk. wow! good to know what to be wary of.

thanks for the advice. i'll print suff out, ask questions and insist on having scripts/plan in hand for the next time. it's been weeks without real treatment for me. i'm not doing this again. it takes weeks just to get an appointment--if he thinks i'm waiting around with ch for him to have time to think about seeing me to prescribe something for the next time, i think he's been smoking too much crack. wow!

Title: Re: triggers?
Post by Charlie on Dec 11^th, 2004, 3:24pm

Not here. Like Jonny, alcohol was never a factor. Too bad there wasn't something like that for me. There has been evidence for MSG though in all its countless forms.

The jury is still out on smoking but at the last convention, about 90% of the clusterheads were smokers, it seemed.

Charlie

Title: Re: triggers?
Post by Bandette74 on Dec 12^th, 2004, 2:14am

on 12/11/04 at 15:24:44, Charlie wrote:

i'm not sure that smoking causes anything, but i do know it makes it worse when i'm hurting or even shadowing.

as a non-smoker, i'm pretty sensitive to it anyway. but when i'm not episodic, people smoking around me doesn't bother me too much.

i had a beer over at a friend's house. that was a mistake.

thanks, again for the tips!

Title: Re: triggers?
Post by totka2 on Dec 12^th, 2004, 4:12pm

on 12/11/04 at 13:22:39, BobG wrote:

Lack of stress.

He is right. My last episod started on christmas day after a long, stressful period.

Title: Re: triggers?
Post by Bandette74 on Dec 12^th, 2004, 4:36pm

on 12/12/04 at 16:12:57, totka2 wrote:

He is right. My last episod started on christmas day after a long, stressful period.

hmmm. got my episode after i received a large sum of money. there might be something to this

Title: Re: triggers?
Post by Redd715 on Dec 12^th, 2004, 4:46pm

I found one today....though it may have been coincidence...was cleaning the bathroom and used a hydrochloric acid cleaner to try to get this black slime out of the faucet that seems to have become a recurring problem between uses.

Anyway the fumes the chemical reaction produced triggered the first k10 I've had since starting verap.

Note to self....try something else next time.

Title: Re: triggers?
Post by survivor13 on Dec 12^th, 2004, 5:05pm

my known trigges:
1. uncontrollable triggers.
a) the weather- usally cause bad series, every other
hour for 1-5 days in a row (large storm fronts).
in the summer high heat with high humidity.

2. controllable/avoibable(sometimes)
a) alcohol
b) heavy scents.fumes or smoke (non-cig.)
c) too much sleep, not enough sleep.
d) body overheating.
e) heavy stress
f) pressure around the left side of face.
g) blowing my nose too much (have sinusitis).
h) sun-burn around the face and forehead.
3. unknown- have some for no apparent reason,
espically when asleep.

Title: Re: triggers?
Post by survivor13 on Dec 12^th, 2004, 5:15pm

on 12/12/04 at 17:07:43, survivor13 wrote:

.i am THE MOST polite, kind, thoughtful, etc. person in the world--even in the throws and thrashes of pain (comperably), BUT. all that ends the second a highly-paid professional fails to do his/her job. i accepted my primary Dr not treating me but offering a referral. i will not accept a specialist not doing his/her job. i'd go berzerk. wow! good to know what to be wary of

I HAD TO THREATEN SUICIDE TO GET MY DR'S. TO REALLY GET OFF THEIR BUTT'S AND PAY ATTENTION TO ME!

Title: Re: triggers?
Post by Bandette74 on Dec 12^th, 2004, 5:24pm

on 12/12/04 at 17:15:57, survivor13 wrote:

I HAD TO THREATEN SUICIDE TO GET MY DR'S. TO REALLY GET OFF THEIR BUTT'S AND PAY ATTENTION TO ME!

jeez-us! that's insane!!! i work in the mental health field, and that notion, while totally understandable, scares me. i naturally underreact to things, even pain. it's just my nature, but it doesn't mean that i don't suffer just as much. well, i won't worry until i have the appointmnet. then i'll see if there's anything to worry about--like the doc not treating me or insisting on trying to "trigger" a ch by administering nitro. so he can "see it personally". sick-os. what happened to the hypocratic oath, and "do no harm?"

Title: Re: triggers?
Post by survivor13 on Dec 12^th, 2004, 5:31pm

they finally gave up and said they did'nt know what else to do and left me on pridisone (60mg) for 18 months. that in itself almost killed me. got a good neru. now. doing all the right things.

Title: Re: triggers?
Post by Bandette74 on Dec 12^th, 2004, 9:09pm

how the hell do chronics survive?

i've had this damn ch now for 3 hours and no sign of it going anywhaere. a normalperson whould have gone to the er i guess but its gotta end soon right??????

Title: Re: triggers?
Post by survivor13 on Dec 12^th, 2004, 9:23pm

yea, thats why i've never been to thet ER. don't like to drive for one thing (while getting hit) and by the time i get there, it's almost over.

Title: Re: triggers?
Post by Marc on Dec 12^th, 2004, 10:27pm

Quote:

i've had this damn ch now for 3 hours and no sign of it going anywhaere. a normalperson whould have gone to the er

Hmmmm... A three hour CH and you're on the keyboard? Pretty amazing, Ive never met anyone that tough before. I certainly couldn't do it.

Title: Re: triggers?
Post by Donna_D. on Dec 12^th, 2004, 11:57pm

on 12/12/04 at 16:12:57, totka2 wrote:

He is right. My last episod started on christmas day after a long, stressful period.

Mine too...Christmas Day..2003.

DD

Title: Re: triggers?
Post by Bandette74 on Dec 13^th, 2004, 12:17am

on 12/12/04 at 22:27:21, Marc wrote:

Hmmmm... A three hour CH and you're on the keyboard? Pretty amazing, Ive never met anyone that tough before. I certainly couldn't do it.

in all fairness, it is strange. but it wasn't a 9 or 10--more like a long-lasting 7. however, i'm sure i'm not the only one who has worked while having a ch if it's even physically possible--a kip 9-10, no way. still, it ain't fun, and you're cursing and banging your head, but a deadline's a deadline, and you do what you need to do.

Title: Re: triggers?
Post by Bandette74 on Dec 13^th, 2004, 12:17pm

so i call my mother who says to me, "well, i guess it's good to hear from you as long as i don't have to hear any more about your head." nice. i've been telling her what i've been learning about treatment and what doctors have said to me, etc. ah-well. guess it's time to pretend there's nothing wrong again. i've been doing that through all the years i was misdiagnosed. i should be used to it by now.

sorry, just whining. have to get back to work...

bona fortuna! pfd&n to all

Title: Re: triggers?
Post by Langa on Dec 13^th, 2004, 1:40pm

Merely existing is a trigger during cycle... :-/

New one during my last cycle...eating...anything I ate brought on a cluster...lost 40 pounds as a result.

One sure trigger in every cycle for me...alcohol...will bring on a headache before i'm even done with the drink. :-[

Langa

Title: Re: triggers?
Post by dantheman on Dec 13^th, 2004, 8:53pm

I believe lots of things trigger CH. I have had triggers such as rat poison(my job was killing gophers) alcohol, mostly changes in season as in length of days. I even theorized once that in the Earths orbit around the sun we must pass through some kind of electrical field or another that triggers something... anyway, good luck and never give up!

Title: Re: triggers?
Post by Ueli on Dec 13^th, 2004, 10:50pm

dantheman,
don't forget the ascendent of Mars and similar stuff. ;;D ;;D ;;D

Title: Re: triggers?
Post by Charlie on Dec 14^th, 2004, 1:05am

We do indeed pass through a lot of stuff in our little excursion though the universe. In fact there is nothing that says it's benign but so far, it's been pretty damn nice to us.

Does it trigger clusters? Unlikely. Hard to imagine something so selective.

Let us know how you're doing.

Charlie

Title: Re: triggers?
Post by Bandette74 on Dec 14^th, 2004, 9:57am

;;D i'm okay with accepting that the earth's orbit triggers clusters. why not? makes as much sense as anythng else.

have my first appt. with my new gp today. i've been told by his office that he only referrs for headaches and won't treat, so they gave me the name of the neuro my new gp referrs to, and i already lined up that appt. on the 20th. so, here's hoping for the best with my new gp.

i'm doing okay, thanks charlie. i went to a walk-in clinic a while back, and that's the dr. who diagnosed the clusters. he gave me a script for relpax, and it doesn't make any sense, but if i take it when the shadows first wake me up around 5:00 AM, and again when the shadows start getting painful later on, i'm okay. if i don't take it soon enough, the relpax has no effect. i went three days without it this past weekend, and the ch's got bad--about 2-3 per day kip 7-9. i found that dr. again, he called in another script, and so far so good.

maybe this works for me, but i'm still going to try for oxygen. i don't normally take any meds, so i'd prefer something that's more natural. the big problem with the relpax is if i don't take it soon enough, the big pain does come, and i can't take imitrex because i have relpax in my system. so, i just have to suck it up and "dance" it off.

i'm still mostly praying that i'm episodic, and all of this will end soon. i've had these before, though they were misdiagnosed, but they've never lasted this long before. they used to last about a week, and this has been more than a month and counting...

however, right now, with the relpax, i'm mostly pain-free...

Title: Re: triggers?
Post by Bandette74 on Dec 14^th, 2004, 10:00am

PFD&N to you all!!