Clusterheadaches.com Message Board


    
      
        Clusterheadaches.com Message Board
        (http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi)
      

        New Message Board Archives >> Oct-Dec 2003 >> triggers
        
(Message started by: bean on Nov 27^th, 2003, 9:09pm)

Title: triggers
Post by bean on Nov 27^th, 2003, 9:09pm

Hello, new here; nice to be here, though.

I was wondering, can we talk triggers? Are they different for everybody? (not likely).

I was just looking on the ouch site, and was flabbergasted. totally blown away.

i've had clusters since i was a little kid-25 now- and through luck and the grace of god have kind of gotten the best of them.

but here's the thing, though. on the ouch site, it says shit like how many cigarrettes a day milligrams of msg a day, etc.
to me, thats like fucking how many bullets to the head a day do you want? 10...25...30...

for real, if the triggers are the same for everybody, and i have kind of gotten a little(BIG) hold on my headaches by avoiding certain substances, i just had to tell you all.

FOODS TO AVOID( and sorry if you all know this, but you have no idea how much that ouch site threw me-fucking cigarettes a day... what bullshit... i cant even be around cigarettes for 5 min without feeling ill(precursor to cluster) and also there is a tolerance, as in when you cut back on the triggers, you will wonder how you could ever stand them in the first place.

FOODS TO AVOID-(AT ALL COSTS) !!!!!!!!coffee...cigarettes...tobacco...soy sauce(miso,shoyu,etc)...MSG...wine-esp red... all alcohol...sodium nitrites(in bacon, hot dogs, cured or preserved meats... CHOCOLATE... caffiene...brown soft drinks-coke, pepsi, root beer,- tea...aged cheese(parmigon, bleu, gorgonzola,CHEDDAR!!)...also stress...

i cant remember if theres more- but there is a similarity between just about all the listed foods- they are aged, some for a long ass time,-- coffee,chocolate,soy sauce,tobacco,- someone needs to look those up..hint hint...and they all contain tannins, what makes them dark...

but anyways, I was just looking for some feedback on whether anyone imbibes the un-imbibables, because like i say, when i cut back on these (with a vengence)--(to eat any of these is to invite a headache), my headaches decreased in severity and how often i have them. and are pretty much ok to just take a few hydrocodones and let it run its course.

wives, mothers, sufferers, please post. l gotsta know if you know bout them triggers.

adios, and peace.

Title: Re: triggers
Post by brain_cramps on Nov 27^th, 2003, 9:31pm

Hey bean

Triggers is a subject that you'll get a million answers on.

Lots of sufferers don't think they have ANY triggers.

Lots have extensive lists.

And like with anything else, there's a LOT in between.

The most common (but not ALWAYS true) is alcohol.

After that, the lists vary more and more.

Besides alcohol, the only trigger I really have are cigarettes. While in cycle, I cut my smoking down to about 1/3. There are a lot of people that DON'T find smokes to be a trigger --- wish that was the case with me.

grant

Title: Re: triggers
Post by Mac on Nov 27^th, 2003, 9:34pm

Nice to met you but too bad it had to be like this. You'll find that everybody on this site is different. I have never been able to define a specific trigger, although I will say I quit tobacco a few months ago and the amount and severity has gone down by 15 - 20% yeah! :)

Title: Re: triggers
Post by Paigelle on Nov 27^th, 2003, 9:45pm

Hmmmm, well here we go. I have had clusters since I was 10 and promise you I wasn't smoking. Nope, no triggers, except alcohol if I am in cycle. Oh yeah, the month of November, that seems to be trigger. Anyway you can avoid that?

Sorry guys I am in a grump ass mood today. Took last prednisone yesterday and I am feeling fearful for tonight.

Title: Re: triggers
Post by don on Nov 27^th, 2003, 10:24pm

Quote:

to me, thats like fucking how many bullets to the head a day do you want? 10...25...30...

LMMFAO. Truest statement I've ever read.

Paigelle. Are you or have you been taking a preventative along with the prednisone?

Title: Re: triggers
Post by BlueMeanie on Nov 27^th, 2003, 11:25pm

Every one of those DON'T DO items on your list i've thought were triggers at one time including stress. That's great that you've quit all that stuff and are PF.

After 24 years of trials, I've sampled all of them on your list + plus many more. I've been at least 10 days with & without. No matter if I was either consuming mass quantities (I did on purpose), or completely dependant of your DON'TS, nothing proved the theory of being a trigger except alcohol.

The Shadow Knows. It Watches Over You & Stirkes When It's Ready !

That's just me. People who don't know my clusters usually ask me that. SORRY !

Title: Re: triggers
Post by jadedgazer on Nov 27^th, 2003, 11:53pm

I think it varies from person to person, just like what works as a preventative or abortive works from person to person.

Lots of people use cold with their O2, while I can't stand the cold. No cold showers, no ice in my drinks, no cold wind on my face...cold is a sure fire trigger for me. I despise the winter time.

Another screwy trigger for me is taking a nap. If I take one I am going to pay for it the rest of the day and pay in spades I will. Real bummer, because I miss my afternoon naps. Especially when the beast won't let me sleep at night.

I did notice a slight decline in the number of ha's per day when I quit smoking for a few months. It was slight and it could have been the meds too as I was making a major preventative med change at the time.

Anyway it is hard to tell sometimes if it is really something or just the beast rearing its ugly head. At least for me it is. I get hit too often to tell anymore.

Title: Re: triggers
Post by sandie99 on Nov 28^th, 2003, 6:08am

I think this beast comes when it wants to, it doesn't really need a trigger... >:(

I do know, that the more stressed I am, the more likely I am to get a visit from the beast. And the last time I had prigles it meant CH attack, too. But that does not mean that you guys should give up on them, too. I have a healthy diet these days, but still CH comes daily! :'(

So who knows...

Best wishes & PFdays,
sandie99

Title: Re: triggers
Post by mikeyd on Nov 28^th, 2003, 9:24am

Hey Bean!
Your DONT's sound like my daily diet! hehehe [smiley=laugh.gif]
I can't see there being any triggers for me except beer...canned beer (draught beer is ok) when I am in cycle...everything else is fair game for smokin', eatin' and drinkin' whilst trying to round out my skinny assss. [smiley=moon.gif]
i haven't changed a lick o' nuttin since I started my cycle...I refuse (except the canned beer), I'm stubborn that way, decidedly thinkin that if it's ok out of cycle how can it not be in cycle. Alcohol is an exception because the properties of alcohol change hormonal balances etc.
I eat handfuls of chocolate at a time (esp. when depressed...even while in a CH, I can eat chocolate...mmmmmmmmmm) I smoke like a chimney in the winter,mmmmmmmmm, smoke!!!!!lol [smiley=laugh.gif]
I eat all that stuff on your list....yummy!
None of it triggers CH for me, but then that's just me...the beast comes and goes as it pleases as far as I'm concerned. But I agree with Bluemeanie that we all have something in common...the same burnt out wire in the primary ignition...lol [smiley=laugh.gif]
Triggers...BAH! I loved the how fucking many bullets comment...lmaoooooo
mikeyd

Title: Re: triggers
Post by Giovanni on Nov 28^th, 2003, 9:27am

Tranquility (the moments just after sheer exhaustion)

Naps and sleep

Alcohol

extreme stress

:-/

Title: Re: triggers
Post by Prense on Nov 28^th, 2003, 10:25am

on 11/27/03 at 21:09:52, bean wrote:

Are they different for everybody? (not likely).

Hrmmm, unfortunately it seems triggers are quite different from person to person.

I am a chronic sufferer, and I have 365 days a year (for the last 10 years) to see what triggers what for me. If I start drinking a beer, within 20 minutes I am getting hit. When I run, within 10 minutes I am getting hit. Those are triggers for me. If I eat a chocolate bar (I rarely eat chocolate), and I get hit sometime later that day, I cannot consider that a trigger.

So far...running, beer and rum definately trigger about 80% of the time for me.

Chris

Title: Re: triggers
Post by bean on Nov 28^th, 2003, 12:35pm

OK, well mabye "triggers" is a subjective word. Only one time can I remember eating something and feeling that something caused a headache nearly instantly- twas a mountain dew,twas- but more than a few times after *gorging* myself on chocolate, later in the week i would get a headache and just feel like one big piece of chocolate, same with MSG, one big flavored yuck. Same for smoking, too. Definately. Being in a club one time full of smoke brought one on.

My cycle is that I get them about twice a year. So the cutting out the "triggers" for 10, 20, how many ever days just won't cut it. Has to be a permanant (or damn near) elimanation of the offending product.

But I do know that when I cut out the products my headache intensity drastically decreased. And it was over an extended period of time, too, as in years. Kind of a trial and error thing. I just couldn't bear to stop eating chocolate, eating MSG, etc. At least till the next headache came. After that, fuck, i'd give up a lot more than the occasional snickers, you know?

And the thing about tolerance wasn't noted either. Its a cumulative effect. I used to smoke and be around cigarettes all the time. No problem. I was used to them. And then have my monster headache whenever it decided to come. But since I quit being around cigarettes, now when I am around them, I can feel the sickness start to start within minutes. Same for everything else. It might be so because I am extremely sensitive to stuff. I can feel a change when I take a vitamin, too. Kind of a high. Clean, though. Also, some kinds or brands of vitamins I can't take too regularly because even they have something in them that makes me feel ill. Mabye the B-12. seriously.

but in a lot of posts, people have said when they gave up stuff like cigarettes the intensity went down like 15-20%. What if that is cumulative, too? Cigarettes, 15-20%. Chocolate, 10-20%. MSG 20-40%- at least; MSG sucks something I won't say here ;).

And as for lists and what not, how can you make a list for what you've eaten for the past 3 or 4 months? If it IS a cumulative thing?

All I'm saying is try this. I swear, it really does make a difference for me. The last headache I had (here goes, knock on wood), I'm not even sure it WAS a headache; it just stayed a shadow. And the last couple of majors, I swear, not even CLOSE to the ones I had before I went off the crack.

discussion, onward! Peace.

Title: Triggers vs Promoters
Post by floridian on Nov 28^th, 2003, 1:05pm

Quote:

OK, well mabye "triggers" is a subjective word.

Right about that. I think we need a new word for something that increases the frequency of headaches, but isn't a surefire rapid trigger. Maybe "promoter" would be a good term for something like Prense's chocolate that seems to increase the risk of getting a headache several hours later.

Title: Re: triggers
Post by Prense on Nov 28^th, 2003, 1:11pm

True, but how can I assess the increased risk of the occurance of something that I don't know when it will occur anyway? Not only that, I have periods of "lighter" attacks...again, unpredictable.

I am sure that if I lived in a plastic climate controlled bubble in a comatose state, I probably would not get attacks...I am not ready to take that step yet.

Chris

Title: Re: triggers
Post by BlueMeanie on Nov 28^th, 2003, 1:15pm

I went a whole 18 months (longest remission ever) without a CH. Still ate, drank alcohol, drank coffee, smoked cigs, went outside in the cold, breathed air, smelled flowers, etc. Sure is funny isn't it ?

ps. Ate Chicago style hot dogs too. YUM

Title: Re: triggers
Post by jadedgazer on Nov 28^th, 2003, 1:17pm

I have an allergy to chocolate but it doesn't trigger CH's. It will however throw me into a full blown migraine within a couple of hours if I eat a Hershey bar. Not a pretty sight and it will last for two or three days. But my migraines are on the right side of my head while my CH's stay on the left.

Title: Re: triggers
Post by brain_cramps on Nov 28^th, 2003, 1:37pm

on 11/28/03 at 12:35:56, bean wrote:

...but more than a few times after *gorging* myself on chocolate, later in the week i would get a headache and just feel like one big piece of chocolate,...

I have reread this a few times and it still doesn't make sense.

a) are you saying that you have "triggers" that you can identify days later? I'm not sure what you are meaning by "later in the week".

b) "just feel like one big piece of chocolate" --- I'm not sure what you mean by this either. an urge or craving?

Help me out here please. I must be reading this entirely wrong. (Sleep deprivation sometimes does that.)

grant

Title: Re: triggers
Post by bean on Nov 28^th, 2003, 1:53pm

on 11/28/03 at 13:11:46, Prense wrote:

True, but how can I assess the increased risk of the occurance of something that I don't know when it will occur anyway?

Chris

mabye not knowing 'when' , but having them be less painful when they do happen.

its just that the "promoters" are so similar, you have to give pause- coffee- aged for what, months, years? *note* I just looked up coffee aged on google and saw 3,7, and 14 years for sale--Chocolate- fermented for not very long, so i cant pin that one except the tannins- and the caffiene+other stimulants--- tobacco-- aged for 12 to 24 months-- soy sauce, aged and fermented for the longer the better( like 2 to 6 years). red wine? longer the better.

so tannins, caffiene,... dont know where MSG fits in, but it does,

and mabye the final anecdote-- once when I was sitting next to someone who was smoking, the smoke straight from the cigarette before it had time to dissapate any went straight up my left nostril and lodged behind my left eye- swear to... you know, and stayed there for 3 or 4 days till it came out in a attack.

any hoo, just trying to help someone out. peace.

Title: Re: triggers
Post by Prense on Nov 28^th, 2003, 2:00pm

on 11/28/03 at 13:53:48, bean wrote:

mabye not knowing 'when' , but having them be less painful when they do happen.

Which is precisely why I also said...

on 11/28/03 at 13:11:46, Prense wrote:

Not only that, I have periods of "lighter" attacks...again, unpredictable.

I can't help but being skeptical. I applaud any efforts to help others though.

Chris

Title: Re: triggers
Post by bean on Nov 28^th, 2003, 2:00pm

on 11/28/03 at 13:37:05, brain_cramps wrote:

a. try delayed trigger/ promoter instead

b.try literal. not urge, not craving, like one big sick hersheys kiss. like i put on a hersheys kiss costume, if that helps helps you to visualize. :)

Title: Re: triggers
Post by brain_cramps on Nov 28^th, 2003, 2:00pm

on 11/28/03 at 13:53:48, bean wrote:

once when I was sitting next to someone who was smoking, the smoke straight from the cigarette before it had time to dissapate any went straight up my left nostril and lodged behind my left eye- swear to... you know, and stayed there for 3 or 4 days till it came out in a attack.

OK ----- I'm pretty sure I'm NOT reading this wrong. Correct me if I'm wrong, but wouldn't the only way that smoke could get into, and stay in you nasal passage for 3 or 4 days is if you weren't breathing through your nose? And even then, I find it EXTREMELY hard to believe it would stay for more than a minute or two.

grant

Title: Re: triggers
Post by brain_cramps on Nov 28^th, 2003, 2:10pm

I don't see how you could possibly draw any type of relationship between eating a lot of chocolate one day and having a headache later in the week. In the mean time, how many headaches did you have? or do you go for days without a headache?

ya lost me!

on 11/28/03 at 14:00:12, bean wrote:

...like one big sick hersheys kiss. like i put on a hersheys kiss costume, if that helps helps you to visualize. :)

Holy crap, dude! You're scaring me now!

grant

Title: Re: triggers
Post by Prense on Nov 28^th, 2003, 2:12pm

on 11/28/03 at 14:10:14, brain_cramps wrote:

I don't see how you could possibly draw any type of relationship between eating a lot of chocolate one day and having a headache later in the week.

Oh no! That means taking a dump could be a trigger? :o

Title: Re: triggers
Post by Patrick_A on Nov 28^th, 2003, 2:22pm

Alcohol and any foods requiring lots of preservatives are my triggers, but only during the cycle.

Patrick

Title: Re: triggers
Post by bean on Nov 28^th, 2003, 2:46pm

on 11/28/03 at 14:00:49, brain_cramps wrote:

mabye not the actual physical smoke, but it happened. kind of like a smoke razor that had frost on it... spacey metaphors are my speciality :)

Title: Re: triggers
Post by bean on Nov 28^th, 2003, 2:52pm

on 11/28/03 at 14:10:14, brain_cramps wrote:

In the mean time, how many headaches did you have? or do you go for days without a headache?

ya lost me!

Holy crap, dude! You're scaring me now!

grant

i only get a couple headaches a year, so far...

Title: Re: triggers
Post by brain_cramps on Nov 28^th, 2003, 3:00pm

on 11/28/03 at 14:52:08, bean wrote:

i only get a couple headaches a year, so far...

If that's the case, I would HIGHLY doubt that they are cluster headaches. Cluster headaches, by definition, come in clusters. If I were you, I'd go see a neurologist and if you have, go see a different one.

grant

Title: Re: triggers
Post by BlueMeanie on Nov 28^th, 2003, 3:07pm

on 11/28/03 at 14:52:08, bean wrote:

i only get a couple headaches a year, so far...

Agree with Brain_Cramps. CH sufferers get a couple headaches a day !! Check with a Neuro. Have you had brain scans & such to find out why you get headaches ?

Title: Re: triggers
Post by bean on Nov 28^th, 2003, 4:08pm

I'm purty sure they're clusters. the pain only in one eye, severity of pain, waking in the middle of the night, severity of pain, i guess that might explain though, just about all the time i live with shadows. mabye those are my clusters. mainly just big ones couple times a year though.

has anyone ever described it like giving birth through their eye, though, if its not cluster? or like a serrated knife jammed in an eye that some mean person wearing boots and a buzzcut comes by and kicks every once in a while, while he smiles and smokes a cigar? my eye just about hurts all the time, just not a major explosion.
its like living with an angry god(stone idol) all the time, doing everything you can to appease him and just hope he doesn't get pissed off. this shit is cluster till someone tells me about something that hurts more. know what i mean? :D

Title: Re: triggers
Post by Prense on Nov 28^th, 2003, 5:24pm

on 11/28/03 at 16:08:08, bean wrote:

I'm purty sure they're clusters.

So, you have or have not been diagnosed?

Title: Re: triggers
Post by amen on Nov 28^th, 2003, 7:55pm

I woud suggest having your eyes checked as well. :-/ I am not claiming to be an expert because I am still learning about this myself but i have to tend to agree that you would have more than just a couple ha's a year. I am not a very severe case based on what I have seen at this website, and I even get at least 2 ha's a day during cycle. By the way, can I ask what kind of meds. you are on?

Title: Re: triggers
Post by Paigelle on Nov 28^th, 2003, 7:58pm

on 11/28/03 at 13:17:42, jadedgazer wrote:

My migraines are on the left and CH on the right. Onions will whack me with a migraine!

Title: Re: triggers
Post by Marc on Nov 28^th, 2003, 9:43pm

Looks like a pretty good Migraine list going here

Title: Re: triggers
Post by bean on Dec 3^rd, 2003, 8:35pm

on 11/28/03 at 17:24:16, Prense wrote:

So, you have or have not been diagnosed?

i dont think so, but cant say for sure. i quit going to doctors(about eyeaches) about 10-15 years ago when i realized they couldnt do jack but try and have me be a guinea pig.

just curious, and mabye not the right forum, but it might be worth considering having a page to go to on this site with everyone who wants to be in a list with all pertinant and/or relevant info for each person regarding clusters.
suspected triggers, cycles times a year, symptoms, how long headaches last ,etc. all on one easy to read page.

and the curious part- does EVERYBODY have multiple headaches a day, multiple days, etc.?
mine just is one big headache that is like a balloon being blown into every 15-20 min or so, but one long continous EA-eyeache.
also just anecdotally - my left eye-pain side- is much worse than my right one to do with vision. anybody else?

Title: Re: triggers
Post by bean on Dec 3^rd, 2003, 8:40pm

[quote author=amen link=board=general;num=1069987553;start=25#30 date=11/28/03 at 19:55:19

By the way, can I ask what kind of meds. you are on?[/quote]

not a damn thing- I thought it(drugs/meds) might be like Visene, where it (visene)constricts the blood vessels in your eye, and eventually makes your eyes red all the time. (at least from high school dope lore) and from reading here, it kind of sounds plausible.

Title: Re: triggers
Post by Prense on Dec 3^rd, 2003, 9:12pm

There is no doubt that symptoms do vary from person to person with CH. The same holds true for many of the different HA conditions out there. Sometimes people end up here "self diagnosed". To my knowledge, none of us here are docs...I definately am not one. Therefore, we are in no position whatsoever to diagnose.

I am particularly cautious about tossing advice out to someone that I am unfamiliar with. Some of the treatments we use when combined with other ailments, conditions, etc., can quite frankly, kill you. These considerations are made when a doc selects a specific treatment for the diagnosed condition.

Head pain can be very a sign of a very serious condition...although, not normally.

My advice, get a doc (neuro, GP, whatever) and get diagnosed and hopefully successful treatment.

BTW, if you do have CH, you will end up being a guinea pig anyway if you want some sort of relief. It is of no fault to the doc...so far, no one treatment works for all of us.

Regards!
Chris

Title: Re: triggers
Post by bean on Dec 3^rd, 2003, 9:40pm

on 12/03/03 at 21:12:41, Prense wrote:

Ive been through the rounds (cat scan, pupils dilated and looked through, etc.) when i was a lad. thats why im not concerned about it being much.--ITS NOT A TUMAH!

But the whole point of this thread was that I WAS/am having relief w/out the meds. just the removal of the ingestable triggers. And mabye if those were removed, others might find going to sleep isnt a problem anymore.

when i first started having them when i was 5,6,7? i would wake up in the middle of the night with a HA. it would blow my mind, and at the end of every one, i would puke jet force. ((any body else have that happen??)), then go to sleep and wake up and be fine in the morning. ahh, youth.
When i started getting older, combined with not eating (or smoking/drinking) the triggers, they would come whenever, residual into the next day, but not be as bad pain. now the pain is not much at all. just a semi-there shadow, and havent had a headache in a while, which is fine by me. but the last couple of years, the pain level has went down and down.
and like i say for people who smoke/drink etc., when i used to, i would be fine, too. just my regular headache twice or thrice a year. now that im off, the pain is SO MUCH reduced! you build a tolerance to these things, in my opinion.
like if you place a block on the ground and step on it, then another, and another, and on and on and up and up until you eventually you fall. No blocks placed in the first place, no fall.