Most of us the know the classics like red wine and aged cheese - please post your personal triggers to let others know of the wide range of possibilities, maybe it's something that never occurred to them - for me:

Alcohol/beer/red wine
Aspartame (Equal)
Soy Sauce
Balsamic Vinegar (which I love)

all of these will give me a CH within five minutes of ingesting when in episode, but like so many, when I'm out of episode I can eat/drink any of it to no effect.

Been in episode for about a month, working on breaking, still taking too much Trex ----

TTFN

Lenny

Significant sleep disruptions.
Extreme hunger.
Alcohol, most especially beer and red wine.
Sustained stress.

None of which is a problem off cycle...thank goodness!

Joe

A bit like Joe, apart from the last one which is the complete opposite, which helps show how individual some of these things can be.

Significant sleep disruptions.
Extreme hunger.
Lack of stress.

Hello,

Bleach,
Vanillia,
coughing,
Daylight savings time zone change.
orange juice.

Set ur Feet,
Coach Bill

msg (there are MANY forms, and not always apparent...e.g. hydrolyzed yeast)...aspartame....change in routine (any routine...sigh)....zinc welding fumes....too much sleep...not enough sleep...coming down from stress....alcohol (INCLUDING mouthwash...and no, I don't swallow)...omega-3 tabs...high glutamic acid containing foods (e.g. tomatoes).....low blood sugar (missing meals)....perfume (solvents not much).....HIGH barometric pressure....too much smoking (NOT the ganja kind....don't do that at all).......oddly, high tyramine foods seem NOT... (e.g. cheese, soy sauce, balsamic)...I don't like peppermint so don't know about that one.....

Chocolate, Noise, time change, low pressure

Sleep, cigarettes, extreme hunger, stress, excessive heat, beer/alcohol, smell of oven-off, smell of WD40,

Keep in mind that I am still very new to this but so far, being cold, perfume, stress, bug spray or any strong scented chemical, coughing, the weather (rain, wind, hail, snow), putting my head below the height of my rear (I do a lot of yoga).....

For Me it's

Alcohol, even a whiff
soy sauce
bacon
any kind of processed meats or cheeses (anything that's cured)
and here's a weird one: white noise or static on a TV or radio
heavy perfume or cologne

Thirty years on and still I don't know.

AussieBrian wrote on Jan 7^th, 2012 at 6:10pm:

Thirty years on and still I don't know.

At least you know it isn't beer!

Mike NZ wrote on Jan 7^th, 2012 at 6:59pm:

AussieBrian wrote on Jan 7th, 2012 at 6:10pm: Thirty years on and still I don't know. At least you know it isn't beer!

Or maybe it is beer, and that's why it's been 30 years ;)

Thanks for the replies everyone, let's add another twist - is there anything you do (other than avoidance) to ameliorate the triggers? Special sleep or eating schedules? Do you substitute one food for another? Asking for any and all solutions!

lennycohen wrote on Jan 8^th, 2012 at 2:38pm:

Mike NZ wrote on Jan 7th, 2012 at 6:59pm: AussieBrian wrote on Jan 7th, 2012 at 6:10pm: Thirty years on and still I don't know. At least you know it isn't beer! Or maybe it is beer, and that's why it's been 30 years ;) Thanks for the replies everyone, let's add another twist - is there anything you do (other than avoidance) to ameliorate the triggers? Special sleep or eating schedules? Do you substitute one food for another? Asking for any and all solutions!

Everybody is different.  Each cycle is different.  The DRAGON will morph and a CH'er will need to morph with the DRAGON.  With trial/error and documenting a headache diary, a CH'er will learn and better understand pattern about their cycle.  With that, a CH'er will need to make changes to lifestyle while in cycle.  Not recommending you allow the DRAGON to dictate your lifestyle, but to learn how to adapt while in cycle making required adjustments to your lifestyle accordingly.

i.e.
1. while in cycle, avoid triggers.
2. getting sleep when you can, day or night.
3. changing daily routines, perhaps with help from others to pick up slack.
4. remembering to take your meds at certain times and/or bringing meds/o2 with you when out of the house/travel/etc.
5. more water intake/more of an alkaline diet
6. preparing with backup plans for activities, vacation, etc

Again, everybody is unique and each cycle may change, but over time there are some things you will learn how to best cope.

Hope this helps and others chime in with their input ;)
-Gregg in Las Vegas

Alcohol, and nothing else I've ever noticed.

I'm sure stress may trigger a cycle for me sometimes, yet its impossible to tell.

driving

-johnny- wrote on Jan 9^th, 2012 at 1:49am:

driving

I would expect to read that trigger from somebody from Los Angeles, not Ohio, interesting.

LasVegas wrote on Jan 9^th, 2012 at 1:58am:

-johnny- wrote on Jan 9th, 2012 at 1:49am: driving I would expect to read that trigger from somebody from Los Angeles, not Ohio, interesting.

i used to drive in 48 states. never had an attack in L.A. but i did have 5 or 6 kip 8s back to back going through chicago once in a semi truck. every attack i had to pull over and scream it out.  it was terrifying to say the least. 

Air conditioning blowing on my face does it every time.  My family can't stand me in the heat of the summer when I prefer to have the windows open over the AC.

billyjoe wrote on Jan 16^th, 2012 at 9:17pm:

Air conditioning blowing on my face does it every time.  My family can't stand me in the heat of the summer when I prefer to have the windows open over the AC.

I am 100% opposite.  A/C blowing on my face will often abort my attacks.  While extreme heat is 1 of my triggers!

-Gregg in Las Vegas

extreme hunger
moments after any stress stops
sleeping (so same as above actually)
any alcohol
a hot bath (that's a killer)
that's all. Even smoking a little weed won't trigger and can even be a nice way to transition towards no stress... like sleeping, just a little though

Hi all. I've been a lurker for a long while, and thought it was about time i joined up and started talking. 10+ year chronic CH'er, and have read enough of your posts to feel like i already know some of you!!

To answer the topic: All Alcohol, but mead and wine the worst. Tried mead at a Renaissance Fair and got hit with a Kip9 in about 30 seconds.
sleep disruption
I've noticed that if I am startled it triggers one (like someone sneaking up on me, or waking me up sharply when I’m asleep)
Relaxing at end of day (reading, watching tv)
vigorous exercise will usually trigger me once I stop but can also abort one if I start exercising at the begining of one...weird

Ways I work around these:
Don't drink any alcohol (i'm a 10Year Chronic, so that means no alcohol, ever  >:( , but at least my friends/wife always have a DD!!)
To avoid relaxation triggers i try to keep my moving some part of my body, feet or hands, until time for sleep.
My Startle triggers, i just work with my wife to not sneak up on me! maybe i should put a bell around her wrist or something.

Welcome aboard Matt,
LMAO at your bells around the wrist comment.  In Alaska they sell souvenir "bear bells" to backpackers to bring awareness to the human while in bear country. Yet locals call bear bells "dinner bells" as an inside joke that the bear will be aware of human presence and eat the human. ;) 

My guess is you don't go to haunted houses around Halloween where they startle you.  Good to have you here and look forward to reading your posts.

-Gregg in Las Vegas

Thanks for the welcome Gregg.

Yeah, i tend to stay indoors on Halloween! Love the Alaska story!! too funny.

There's a lot of good people here, and I'm just happy to be able to talk to people who really GET IT. My wife, love her to death, just doesn't really understand. She's been with me since they first started, so knows all about it, but no matter what she see's (my demon dancing at night, having to leave movie theaters, end dates, etc), no one can really understand the extent of CH's unless they live with them.

But, as I always tell myself while in the throws of the beast, this too shall pass. Sometimes its the only thing that gets me through them, but it's true. they will end after a few hours, and i've just learned to enjoy the time inbetween them. It's either that or give up, and that is NOT an option.

-Matt

shoes that are too tight
candles
Parmesan cheese
spring
fall

Wine (haven't noticed if red or white makes a difference)
shellfish
dehydration
barometric pressure changes

Thankfully, I think that's it.

Only one I know is beer..

Relaxing..... [smiley=bath.gif] [smiley=me&mb.gif] [smiley=sleep.gif] [smiley=snore.gif] [smiley=worried.gif]

Ya know how to tell the difference between Grizzley bear poop and black bear poop?  Grizzly poop has little bells in it and smells like pepper spray.

Low pressure systems that come along with rain seem to make things worse; alcohol, and even simple hunger are often enough to bring one on. I usually make sure to eat right on time when in the middle of a cycle to keep the hunger away.

Tobacco smoke also seems to have a bad effect for me (I'm a non-smoker).

Bob P wrote on Feb 8^th, 2012 at 7:03am:

Ya know how to tell the difference between Grizzley bear poop and black bear poop?  Grizzly poop has little bells in it and smells like pepper spray.

Cute. ;)  But realistically both bear types will maul upon any contact with their cubs and black bears are actually more aggressive.  I always take a shotgun with me when going into bear country. 

Dinnerbells and pepper spray are worthless deterrents and just triggers to the bear!

-Gregg in Las Vegas

Follow up to this: can anyone send me a link to any kind of study/published material about triggers for cluster headaches? (And frequency.)

My husband's neurologist, who is a headache specialist, today said she isn't sure if he actually has cluster headaches because clusters aren't usually triggered by something (we mentioned that of the 7-8 cluster attacks he's had in the last 3 months, at least half of them have been triggered by walking through/accidently inhaling cigarette smoke, or by eating certain foods by accident). She also said cluster headaches happen daily, often several times a day, for a period and then go away, and that his probably weren't cluster because they were down to one every other month, and now have gone back up to 1-2 a month.

Anyway, help! From what we've read on here, everything above does not sound correct..

For me, so far:

• alcohol
  higher levels of caffeine, as in coffee, although tea is usually fine
  exercise, very unfortunately
  
  I'm new to the CH community (first one was 4 months ago, and I am still in cycle) and kinda confused about the whole trigger thing.  I know that I'll be completely painfree (I'm just on verapamil now, I think I've had to get on O2 maybe 3 times in 2 months, as opposed to when it first started and it was every night.  And it's mostly just preventative now.)  Does a trigger start a new cycle?  Or does it only start an attack if I'm in cycle.  I have (almost) gotten over the drinking thing, but I'm really sick of being so stationary.  I'd really love to be able to work out, but even walking on a treadmill will trigger me shortly after I start.
  

I love reading these!

So far the ones that I can remember of mine are:

Too much sleep and lack of sleep
Interrupted sleep
Alcohol (When I'm in a cycle it will make it worse)
Stale cigarette smell
Drastic change in weather ie Strong storm blowing through
ASPARTAME ... just the thought of it ... sad too, I love Diet Pepsi. 
Lack of coffee in the am
Not eating every few hours while I'm awake
Long car trips (over 3 hours)
Coming down from prolonged stress
Lunch Meats
Overuse of Excedrine Migraine and Fiorcet ... I won't go near them now. 

Cheeses are ok with me usually ... good thing, because I adore a good smelly cheese.

Quote:

Anyway, help! From what we've read on here, everything above does not sound correct..  Back to top

CH is an enigma...what triggers for one will not trigger another, there are published results on histamines as a trigger in medical testing. I would listen to the doc at this point. They have all the relevant information and training to say anything when it comes to diagnosis.
all the best
the bb
alcohol is a trigger good as histamines.

WHYYYY Is it that EVERY TIME I want to drink Beer, or Wine I get the extreme pain over my left eye.. Its like a lightning bolt over my face.. It then starts to make my neck and ears warm, and then its ON... once that starts to happen I know that its time take a pill. This happened to me Saturday after drinking on Friday, and then Friday afternoon after having a few drinks Sunday afternoon. (Don't think I'm a big drinker I do enjoy a drink now and then I am a 27 year old trying to enjoy life) Sadly this happens more than I'd like it to.
I also have another problem that I cant seem to figure out as well. I say that I drink enough water a day but it still doesn't seem like enough. So (mainly on the weekends) I like to sleep in and it seems that if I sleep for more than 8 hours my brain feels DRY and BOOM cluster headache. I'm still new at this and trying to figure out how to avoid these problems and try to live a young adult life.
ANY IDEAS???   

clusternewbie8 wrote on Feb 13^th, 2012 at 1:14pm:

WHYYYY Is it that EVERY TIME I want to drink Beer, or Wine I get the extreme pain over my left eye.. Its like a lightning bolt over my face.. It then starts to make my neck and ears warm, and then its ON... once that starts to happen I know that its time take a pill. This happened to me Saturday after drinking on Friday, and then Friday afternoon after having a few drinks Sunday afternoon. (Don't think I'm a big drinker I do enjoy a drink now and then I am a 27 year old trying to enjoy life) Sadly this happens more than I'd like it to. I also have another problem that I cant seem to figure out as well. I say that I drink enough water a day but it still doesn't seem like enough. So (mainly on the weekends) I like to sleep in and it seems that if I sleep for more than 8 hours my brain feels DRY and BOOM cluster headache. I'm still new at this and trying to figure out how to avoid these problems and try to live a young adult life. ANY IDEAS???

Ideas?....(1) read info here on this website about proper treatment, (2) understand pills are worthless for aborts, (3) don't drink any alcohol while in cycle and (4) be extremely thankful you are lucky enough to get 8 hours sleep. ;)

-Gregg in Las Vegas

LasVegas wrote on Feb 13^th, 2012 at 2:11pm:

clusternewbie8 wrote on Feb 13th, 2012 at 1:14pm: WHYYYY Is it that EVERY TIME I want to drink Beer, or Wine I get the extreme pain over my left eye.. Its like a lightning bolt over my face.. It then starts to make my neck and ears warm, and then its ON... once that starts to happen I know that its time take a pill. This happened to me Saturday after drinking on Friday, and then Friday afternoon after having a few drinks Sunday afternoon. (Don't think I'm a big drinker I do enjoy a drink now and then I am a 27 year old trying to enjoy life) Sadly this happens more than I'd like it to. I also have another problem that I cant seem to figure out as well. I say that I drink enough water a day but it still doesn't seem like enough. So (mainly on the weekends) I like to sleep in and it seems that if I sleep for more than 8 hours my brain feels DRY and BOOM cluster headache. I'm still new at this and trying to figure out how to avoid these problems and try to live a young adult life. ANY IDEAS???    Ideas?....(1) read info here on this website about proper treatment, (2) understand pills are worthless for aborts, (3) don't drink any alcohol while in cycle and (4) be extremely thankful you are lucky enough to get 8 hours sleep. ;) -Gregg in Las Vegas

I wish I know when my cycles were.. I havent really figured that part out yet. I guess when I do I can then figure out when I can and cannot drink. Such a BUMMER !!  :'(

My triggers are:

Extreme heat (especially after being in air-conditioning and then walking out into extreme heat - that will bring me to my knees)
Freshly cut grass
Wood burning fires (or the ash left afterwards)
Aspartame
Cigarette smoke (actual or residue)
Soy protein (the powder stuff one might use in protein drinks)
Barometric pressure changes (specifically when a storm is moving in)

i used to think beer is a trigger for me.  not so much anymore...

one thing that WILL trigger for me is anxiety.  i HATE feeling anxious.

lately i can drink beer and be fine, however  i get hit about once or twice a day due to work related anxiety, usually me worrying about getting hit while at work >:( go figure ::)

fortunately, they dont last very long and rarely get above a 6.  once the pain starts, i forget about whatever it was that was making me anxious.

New here and somewhat new to CH (mis/undiagnosed until recently). So far triggers for me have been beer and hot dogs (probably anything with nitrates, but the hot dog has kept me from trying to find out). Cigarette smoke isn't necessarily a trigger for me, but it doesn't help either.

We have a lot of members who are heavy smokers, none have ever posted they found smoking to be a trigger. Many have quit smoking, hoping that might stop CH. It' didn't.

Dr. Goadsby says the biggest problem with CH'ers smoking is the health conditions that long term smoking cause, will prevent the patient from availing themselves of many of the CH abortives, especially those in the triptan family. Just one more reason to quit! ;)

Joe

I just pieced together that every Friday I'm totally knocked out after I take my kids to the pool.  I believe the smell of the chlorine is a trigger for me.  On a side note, I started Verapamil and Imitrex nasal spray.  I took a shot of the spray this morning as the sun was coming up on my drive to work (another trigger for me) and half way through my day I feel better than I have in a year!  I'm ready to shout from a mountain top!

Great feeling when you have some tools to slay beasty with isn't it! :)

Joe

Bree wrote on Mar 23^rd, 2012 at 3:14pm:

I'm ready to shout from a mountain top!

Simply amazing the change when you get some control back from the beast.

May you continue to have reasons to shout from the mountain top for a long time to come.

Only three for sure:

- Even the smallest amount of any type of alcohol
- Extreme heat (especially after being in air-conditioning and then walking out into extreme heat )
- Daylight Savings Time Change.

- One sip of booze. I cannot drink beer ever (allergic) no wine or mead (sulfur stuff). However, whiskey yup one sip can trigger me.

- Weather changes leave me whimpering in a corner wishing to pass out. The pain in my neck, back, tailbone, hips and CH's are made so much worse by the weather pattern.

- Smells (perfumes), Lights (walking into Best Buy has caused insta CH with a rebound panic attack)  and Sounds (drums)

- Stress, ending of stress, good stress

- Seeing the doctor. I am phobic of Doctor which is sad since I am so sick

- Not enough or too much sleep

- Hunger

- Mgraines and vice versa

- MSG in any of it's sneaky forms, Aspertame, Splenda (mostly Migraines though for Splenda)

- Flare in neck or back pain

Sometimes there is no rhyme or reason to the CH.

Any amount of alcohol. I had a suppliment I was taking that had alcohol in it and I took something like 1/2 an eyedropper full. WHAM! Every. Time.

I was driving the other day and the car ahead of me hit a skunk. a minute later I got a big hit that raced up the kip scale; had to pull over.

So I can avoid the booze pretty easy. Hopefully the skunks will leave me alone for a few more weeks.

Alcohol & naps. I don't mind never drinking, but I wish I could just lay down for a lil nap sometimes. 

Alot of my triggers have been mentioned. But here's one that nobody talked about yet:

MARIJUANA


A joint is a garanteed kip9 within 20 min!!