List of triggers - please help

[CHfather]

On another thread, we were discussing triggers. We thought that maybe it would be valuable to compile a list and post it in the ClusterBuster Files section.

 

I have started this list by adding things that I remember to an initial list provided by ThatHurtsMyHead. I would appreciate any corrections, additions, or clarifications so we can make a list that’s as complete as possible.  If you can think of a better way of organizing it, please suggest that. This is just a start.

 

Not all of these things are triggers for everyone. Even alcoholic drinks, probably the most common triggers, don’t affect everyone. And for some people, some alcoholic drinks are triggers and some aren’t. So the purpose of this list is to help people think about what their own triggers might be, so that they don’t suffer needlessly from not recognizing them.

 

Airplane travel

Alcoholic drinks

Altitude: high-altitude locations; travel from high altitude locations to lower ones and from lower ones to higher ones

Amyl nitrate (used medically to treat heart diseases such as angina, and also used as an inhalant drug, often called a “popper,†that induces a brief euphoric state)

BBQ Sauce

Cheeses that are fermented (blue, brie, american, swiss etc.)

Chocolate

Epinephrine (anesthetic used often in dental work)

Erectile dysfunction medications (Viagra, Cialis)

Exercise: strenuous exercise

Flour, bleached white (white bread, cake etc.)

Marijuana

MSG (monosodium glutamate, a food additive)

Nitrates and nitrites (often added to processed meats, such as bacon, hot dogs, jerky, and luncheon meats)

Nitroglycerine

Odors: perfumes; gasoline; paint; solvents

Pollen

Sleep: irregular sleep schedules; napping

Smoke

Stress

Sugar: high-sugar foods

Weather: Barometric pressure changes

Weather: High temperatures

[jon019]

Interesting CHF....a good idea methinks......

 

I would add...most based on personal experience:

 

LOW blood sugar

Aspartame (artificial sweetener....vasoactive like MSG...,other A.S.  do not seem same...but that's me)

Nitrous oxide (dental anesthesia...never experienced personally)...but an enlightened anesthesiologist I met

      agreed it was a trigger for some clusterheads

Gum chewing...or excessive jaw movements...

Caffeine at the WRONG time (my belief that the body maintains stasis when "insulted" continuously....so

     best to withhold until needed for maximum effect)

POST stress (e.g. home from work)

Welding fumes (zinc welding fumes was an INSTANT hit for me)

Routine changes (eating, sleeping, exercise, etc)

 

I'm sure more...will think on it....

 

Best

 

Jon

[CHfather]

Thanks, Jon! 

[ThatHurtsMyHead]

CHF,

 

I see a few that are similar for pressure changes in your list.  I'm a regular diver and can say that I've never gotten hit descending (low pressure to high pressure), but if in cycle, will always get hit ascending (high to low pressure).  Now I don't know if that's common with others, or if I don't get hit descending because I always use a blended gas mix (higher O2 concentration, EAN36 / Nitrox).

 

I'm trying to remember, but I know Spiny stays on the mountain due to pressure changes, but I don't remember if her attacks happen when doing down or coming up?

 

Maybe we can group those on the list that are similar?

 

J

[CHfather]

Yes, agreed about grouping similar ones.  Thanks.  I've been looking forward to spiny's input on that specific one.

[ThatHurtsMyHead]

CHF,

 

I like the list..!!

 

Another thought.  What about breaking the list down to 3 sections.  Foods, Drugs and Events?  That would eventually allow someone to quickly identify scenarios they are familiar with.  

 

Like for me the drugs sprinkled through the list are irrelevant, as I don't take anything accept an occasional vitamin.  On the other hand if I were prescribed something from the doc, I'd want a quick review of the drug list before putting anything in my body.  

 

Similarly if someone is getting afternoon hits, they could graze the food list easily to see if there's something they're having for lunch that might be a trigger.

 

J

[mit12]

Shrimp, some perfumes, any change in sleep patterns especially if I am startled awake. I do great while under stress but as soon as it goes away I am hit. Amoxicillin. Any time I get sick I get hits.

[jon019]

Hola...I agree with THMH...break into sections or this list could get really unwieldy. That said....I'll make it a bit more. MSG is a potent trigger for many...but

it hides in our food supply under many guises. I remember a friend telling me how she NEVER would eat MSG cuz it was NASTY stuff (not really, just some folks are sensitive).

I asked to see the bag of chips she was eating from...sure enuff: hydrolyzed vegetable protein .....thas MSG folks...see list. And I'd add a caution to research glutamic acid content

of foods...same action in the body as MSG. Examples of higher levels include anchovies, tomatoes and mushrooms........

 

Other Names for MSG: The A to Z Guide


MSG Accent
Autolyzed Plant Protein
Autolyzed Yeast
Aginomoto
Calcium Caseinate
Citric Acid (when processed from corn)
Gelatin
Glutamate
Glutamic Acid
Hydrolized Plant Protein (HPP)
Hydrolized Vegetable Protein (HVP)
Monopotassium Glutamate
Monosodium Glutamate
MSG
Natural Flavoring
Natural Meat Tenderizer
Sodium Caseinate
Senomyx (wheat extract labeled as artificial flavor)
Textured Protein
Yeast Food or Nutrient
Yeast Extract
 

[ThatHurtsMyHead]

Looking at Jon109's list above;  We might want to add a 4th category "Food Additives" to the Food, Drugs and Events categories.

 

CHF,  Hope we're not confusing your original intent.  Just hoping to categorize for easy surfing.

 

I'd say once a pretty thorough list is built out we might want to create a voting record, and see if people can prioritize their known triggers?  Then reorder each of the categories by prevalence of known triggers?

 

You rock CHF!!!

 

Jeff

[CHfather]

I'm happy to make categories.  I think we'd want an "odors" category, too -- there are a lot of them.  Of course, odors are different from the other categories in that while you can generally choose what foods you eat and what events you participate in and even to a large extent what meds you take, the odors are often kind of imposed on you by circumstances.  With the shorter list I had created as a beginning, I didn't really think categories were necessary -- you could read the whole list in a minute anyway -- but the more we get, the more inclined I am toward categories.

[BBillow]

Very good topic, for years I couldn't understand why I got a headache 30 minutes after I left work regardless of what time I left, I was blaming the dusty atmosphere until I read Relaxation was a trigger, It was a epiphany! It all made sense. I am very fortunate to have identified most of my triggers and it's a short list. relaxing after stress. daytime naps, baths, and number 1. Alcohol.

[CHfather]

Thanks, BB'.  Just for clarity in the final list . . . do you means baths at any time?

[razorPP]

Relaxation, explains why CH sometimes starts building on the way home from work, and maybe that's why a nap is a trigger, I'm done relaxing, I'm staying wound up, hehe....

this list is good, most of these food items on the list are on the histamine food list that releases histamine in your body

[razorPP]

Relaxation, explains why CH sometimes starts building on the way home from work, and maybe that's why a nap is a trigger, I'm done relaxing, I'm staying wound up, hehe....

this list is good, most of these food items on the list are on the histamine food list that releases histamine in your body

[ThatHurtsMyHead]

CHF,  

Yea, I'd agree a separate category for smells.  In the fall, burning leaves are a guranteed BAD trigger for me.  Not much of any problem with other smells, but burning leaves = LONG BAD attacks for me anyway.

 

BBillow,  

Please take a bath every once in a while  (joke)  

 

J

[Dane]

I have suffered with cluster headaches from birth. I am glad to have finally started trying to help myself. I almost ended it several times. Sometimes mine last for 2-3 days. Does anyone else have this kind of prolonged agony? As far as triggers, my head-quakes are a sneaky bunch. Never found any corresponding events, smells, or activities that triggered. Only that when I first even THINK I am feeling one coming on, I take BC powder, begin massaging my temples, get AWAY from people,noise, light or anything that affects my sense, even smell. Then I brace for the inevitable. A steaming hot rag (I used to turn my water heater up as soon as symptoms arose) across, and pushed against, my eyes is so far my only respite. Only thing rags cool quickly and cold makes mine worse. Then a blind, stumbling, nightmarish ten steps to the faucet. Hot water, repeat until sleep. If no sleep, headaches continue for as long as I take to go unconscious. Any help would be welcome. I have stopped leaving "safe" areas (my home) overnight because I usually get a 3 am wake up call, and begin making gutteral noises and stumbling around

Plus I can somewhat control my environment at home ( no smells, hot water, quiet, dark, no people, etc.). Any input would be welcome. I'm sorry that you are here, but I'm glad I'm not the only one. I am 32 and have had in excess of 100 clusters. The longest was 4 days and nights. I had a gun to my head and, being alone, no one was there to stop me. Any input would be very much appreciated and put to use. I work 6 to 7 days a week to make ends meet. It hits me hard to not work for, say, 2 days. Then a day of silence to recooperate. Anyone tried pyramids or 2-bromo?

[BBillow]

Dane, I feel terrible for you. I know I have had the thought that if this headache doesn't end I'm gonna have to kill myself but fortunately they always end. The longest I have had was about 2 hours, and that was agonizing. Days on end must be torture. Verapamil worked wonders for me and triptans did at one time. I hope you find something that helps soon. 

[ThatHurtsMyHead]

Dane,

 

Welcome to the board.  Glad you found us.  Please open a new thread with your info, history etc.  There are lots of people here that are more than eager to do what we can to help.    Have you seen a neurologist?

 

PFW,

J

[BBillow]

Thanks, BB'.  Just for clarity in the final list . . . do you means baths at any time?

Yes, but I believe  it's related to the relaxing after stress type trigger. I only take baths now during an headache, running scalding water over my head provides some sort of relief. Showers have never triggered a cluster for me.

[Dane]

Thanks. I never sought treatment BC of fear of diagnosis. After reading entire ichd, it seems intercranial. It feels like my brain swells, and cerebro spinal fluid fills pockets with pressure. That why I call it a "cluster". It's every dam where. My eyes get hard as rocks.

[Dane]

Undiagnosed severe chronic beyond cluster headaches is my new thread. Anything helps. Thanks. Verapamil and triptans? If they are pain medicine, anything except BC powder makes it come on faster.

[Dane]

Biggest break in case in years. Idiopathic intracranial hypertension. Onset resulting from large amount of tetracycline as a child due to my having contracted pneumonia twice. All self diagnosed. But I think that's fuckin it. Wow. Pneumonia almost killed me as an infant and it has been fuckin with me ever since. Mm mm mm.

[CHfather]

Nice sleuthing job!  Sounds like it's at least potentially diagnosable through imaging and testing (in contrast to CH), and treatable. 

And thank you for letting us know (and keeping us informed in the future).

[lp3]

I am a chronic, used to be 3-5 attacks daily, now after months of busting I get usually one per day.                            Terrible chronic.             

Now my triggers and not triggers.

Triggers:

 

Eating anything at all. Really. I try to not eat unless I am getting so hungry I have to.

Relaxing.

Napping (huge one!)

A change in the weather kills me.

Heat. I need it cool.

Alcohol.

Any processed foods.

Any nightshade family foods.

Driving a car.

chewing any type of gum.

perfume

aftershave.

soap smells

fingernail polish smell

being on the computer very long or watching a tv screen

going to the dentist!

Time of day. 2pm, 7pm,  1AM, these are my alarm clock guaranteed hits daily.

 

Not triggers for me that are triggers for others:

 

smoking. I actually find smoking gets me out of a bad attack sometimes.

light.

sounds

marijuana

airplane flights

 

Well there is my list. Hope it helps.

 

 

[CHfather]

Thanks, lp.  I just wanted to mention about that dentist thing that the anesthetic that dentists typically use, epinephrine, is typically a trigger for most people.  There are other anesthetics, including "laughing gas," that are not triggers.