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        Cluster Headache Help and Support >> Medications, Treatments, Therapies >> Valid Cause and Effects?
        
(Message started by: jlaryh33 on Dec 16^th, 2007, 2:21pm)

Title: Valid Cause and Effects?
Post by jlaryh33 on Dec 16^th, 2007, 2:21pm

I am totally new to this site----but I did experience 17 years of 8-10 pain years. What I believe about my experience with CH and what I did to Vacation(?) from the Devil. True or not, I don't know-----what do you think?

This is long and I apologize-But I could have written ten times------

Perhaps my CH experience may help someone else. I found very early in my CH time that treating the pain was not going to be a satisfactory route to follow, so I began to concentrate on determining the cause of my problem.

I had my first cluster headache at age 47 in March 1980, full blown and chronic by August 1980, and my last one (final I hope) in 1997.

My doctor initially diagnosed my problem as ‘sinus’ but with my help he finally said in August 1980 that I had CH. Although mine were never ‘clusters’. At least one a day, either out of the blue, or seemingly triggered by something I ate.

I found “Cafegot” in 1982 that did enable me to ease the effects by taking one pill every morning. This was not always effective but did make my life livable. I also found I had a high threshold for pain.

Before the CH I had little or no tolerance for people that complained of headaches. Believe me I did change that.

Through several observations, happenings, etc I deduced by late 1986 that my INITIAL trigger was ROUGH SUEN CEDAR WOOD. I had cedar in my new home when I moved in, in 1979, and I added more almost immediately. Needless to say, as soon as I decided the cedar was at fault, I immediately removed all the cedar wood.

One observation was riding in a car with the windows open, with a lot of evergreen trees around, would activate a headache. I did this in California among the Redwood Forests. (I later learned that the same thing would happen if the A/C or heater in the car was using outside air as opposed to ‘re-circulating’ the inside air.)

Another was following a ‘Cytotoxic’ test (a blood test to determine allergies to foods) I was on a diet to see if certain foods were the cause. I found myself suddenly having several attacks a day. We were vacationing in Kentucky, and I noticed that almost all the trees along the road were cedar trees. Leaving the area did ease the multiple attacks.

Another, I walked into a restaurant in February 1986 in Steamboat Springs, Co and a headache started almost immediately. I looked around and EVERYTHING in the restaurant was made of CEDAR, walls, floor, ceiling, and furniture. I ran, not walked, out the door and I was able to avoid the headache. This incident is the one that caused me to finally remove all the cedar from my home.

Even though the Cedar was the initial culprit, all types of trees/plants kept the effects going. Even as late as 1996, when I was almost totally free, I found that driving across the everglades in South Florida, and breathing outside air, that I did have a couple of full blown headaches return. I had bought a new car and unknowing to me the A/C/heater always ‘defaulted’ to outside air when the car was turned off.

Even as recently as 2003 I experienced what used to be symptoms of an on-coming headache. I had ridden most of the day in the mountains of North Georgia in a car with the moon roof open, but this was after we returned from the drive when the symptoms occurred. This headache did not develop.

Eliminating the cedar was not an immediate cure. It took many years to become completely free of the headaches. But I did shortly begin to notice some positive signs.

I found, as a Monday morning quarterback, that I had to be very patient in everything I did as no immediate relief or evidence of help ever was immediately evident.

During many of the years of suffering I found I could often use what I call “acupressure” to completely reverse a ‘severe’ attack. In my dark and quiet walk-in closet, I would use the heel of my hand (palm), or my thumb, to put ‘EXTREME’ pressure on the right side of my head, different spots, and hold it there as long as possible. When I could find the right spot, I would somehow know it was right, hold the pressure and then the headache would ‘swoooush’ away. Reading about ‘pressure points’ but never having much luck with them, such as between the thumb and first finger, I tried my own ‘acupressure’. This did not always work, but when it did------------.

I believe my experience told me the following-

If I had been headache free most of my life, then when they did develop it was likely to have been caused by something different and external to me.

That I be extremely vigilant and patient as no cure, or even evidence of help happens quickly.

Even though many different triggers might have been involved, such as chocolate, cheese, wine, etc. in my case I had ONE primary trigger (the cedar wood) that caused the whole problem. Once the primary problem sensitized my system any one of the follow-on triggers worked to give me a headache.

Title: Re: Valid Cause and Effects?
Post by Guiseppi on Dec 16^th, 2007, 5:49pm

I'm certainly not a doctor so I only speak from 30 years of battling these. I get 2 cycles a year, 8-12 weeks in length, with remissions of 3 months up to 2 years, and occasional rogue cycles which go as long as 8 months.

I've never been able to isolate what STARTS a cycle. When I am ON cycle, that is getting headaches, I experience triggers common to others on the board, alcohol, sleep disruptions, sustained stress.

Your experience is definitley different from anything I've read before. The current "school of thought" by the experts is a defective hypothalamus. They say that's why we tend to match the spring and fall time changes with the start of our cycles. Like you, I'm always looking for a cause and effect relationship with my cycles. To this point, the beast has morphed so often I've never been able to pin down anything that starts my cycles.

I hope you're remission goes forever, who cares why as long as they stay away!!!

Guiseppi

Title: Re: Valid Cause and Effects?
Post by vietvet2tours on Dec 16^th, 2007, 6:18pm

on 12/16/07 at 17:49:47, Guiseppi wrote:

You are such a diplomat.

Potter

Title: Re: Valid Cause and Effects?
Post by Linda_Howell on Dec 16^th, 2007, 6:29pm

Isn't he Potter.. [smiley=laugh.gif]

http://bestsmileys.com/tempted/1.gif

should I ? or shouldn't I?

Nah...it's almost Christmas.

Title: Re: Valid Cause and Effects?
Post by artonio7 on Dec 16^th, 2007, 9:07pm

on 12/16/07 at 18:29:07, Linda_Howell wrote:

Isn't he Potter.. [smiley=laugh.gif]

http://bestsmileys.com/tempted/1.gif

should I ? or shouldn't I?

Nah...it's almost Christmas.

oh go ahead.

Title: Re: Valid Cause and Effects?
Post by Guiseppi on Dec 16^th, 2007, 10:58pm

I certainly better not have been trolled again......I HATE it when that happens.... >:(

Guiseppi

Title: Re: Valid Cause and Effects?
Post by George_J on Dec 16^th, 2007, 11:33pm

I've never noticed a sensitivity to cedar. By cedar, I presume we're talking about western redcedar, Thuja plicata. Probably a good thing, or I'd never be able to enjoy this:

http://www.foodtv.ca/DMM/C/E/Cedar_Plank_Salmon_With_Blueberry_Salsa_003.jpg

...and I really do enjoy cedar-planked salmon. Put some relish made with wild huckleberries on the side, and I'm in heaven.

Seems as if the aromatic compounds in western redcedar are a potent natural insecticide, and do cause allergic reactions in certain sensitive individuals.

http://www.trifl.org/cedar.shtml

Whether those reactions could precipitate a CH cycle, I cannot say. Others here have mentioned that various odors act as triggers for their CH, although I can't recall anyone saying that odors started a cycle.

I should say that I'm not one of those who are sensitive to smells. (I've never been able to point to anything other than the seasons as precipitating factors in my CH) .

I'm skeptical, but I'm willing to entertain the notion that the odor of cedar may act as a trigger for some people. Whether it can launch a protracted cycle of headaches, though, is a little bigger pill to swallow.

I'd like to hear some how and why--don't want to be so open-minded that the wind whistles through.

Best,

George

Title: Re: Valid Cause and Effects?
Post by chewy on Dec 17^th, 2007, 12:02am

Seaweed.

Thats right. Seaweed. I bought one of those little air freshner things for my car with the aroma of kelp and...yup.....you guessed it.........trigger.

Whenever there are gobs of seaweed in the crack of my butt after an ocean swim........POW.............instant CH.

Went to my neuros office. Thumbing through American Scientific magazine and what is on the cover? Varieties of seaweed. BOOOM. Kip 9.

Fear keeps me from watching episodes of Sponge Bob Squarepants

Quote:

March 1980, full blown and chronic by August 1980

Chronic in 6 months. Hmmm?

Title: Re: Valid Cause and Effects?
Post by thebbz on Dec 17^th, 2007, 2:45pm

Cedar?? :-X :-X :-X :-X :-X
all the best
thebb
It's n.... :-X :-X
Well it's ... :-X :-X
ok I'll shut up.

Title: Re: Valid Cause and Effects?
Post by Guiseppi on Dec 17^th, 2007, 3:05pm

To convict me of having been "Trolled"....you must prove BEYOND A REASONABLE DOUBT That I was trolled.

Reasonable Doubt:

It is not all possible doubt, as all things relating to human affairs have some element of possible doubt, it is that state of the evidence where you cannot say you feel an abiding conviction, to a moral certainty, of the truth of the evidence.

So :P

Guiseppi

(dangit I HATE being trolled :-/)

Title: Re: Valid Cause and Effects?
Post by Linda_Howell on Dec 17^th, 2007, 4:00pm

Watch it Joe....the law enforcement training in you is showing.

It's not so much "being trolled" as it is that people come in here and whether out of desperation or arrogance..try to convince themselves and others (quite loudly most times) that peanut butter and bananas or ceder or seaweed or anything else that is ridculous, is most definetly the culprit in triggering or causing CH in the first place. Not taking into account ANY scientific data what-so-ever.

They will then be ever so angry that no one takes them seriously or says anything to the contrary.

Linda

Title: Re: Valid Cause and Effects?
Post by chewy on Dec 17^th, 2007, 4:51pm

You mean it's not the kelp?

Title: Re: Valid Cause and Effects?
Post by MJ on Dec 18^th, 2007, 12:54am

Interesting enough.
Sounds to me like someone found their possible, allbeit rare, trigger. I would suspect more of a delayed allergy though rather than direct clusters.

From George Js link;

"The primary irritant in cedar is plicatic acid.
Plicatic acid has been shown to cause an array of pathological changes consistent with inflammatory and allergic reactions. However, no one knows the mechanism by which plicatic acid induces these changes, which include increased concentrations of eosinophils, immunoglobulin E (IgE), T-cells, histamine and leukotrienes--substances known to increase inflammation in conditions such as multiple organ failure following surgery and acute respiratory distress syndrome (Frew 1995, Chan-Yeung 1994, Salari 1994)."

Cedar oil is used in a whole slew of things many of us claim as possible triggers or irritants, perfumes, cleaners, insecticides, etc. etc..
There doesnt appear to have been a whole lot of studies done on it though for toxicity.

http://ntp.niehs.nih.gov/ntp/htdocs/Chem_Background/ExSumPdf/cedarwood_oil.pdf

Thanks for the post jlary.

Title: Re: Valid Cause and Effects?
Post by George_J on Dec 18^th, 2007, 2:26am

on 12/17/07 at 15:05:39, Guiseppi wrote:

To convict me of having been "Trolled"....you must prove BEYOND A REASONABLE DOUBT That I was trolled.

Would you settle for a preponderance of the evidence?

;;D

Best,

George

Title: Re: Valid Cause and Effects?
Post by brewcrew on Dec 18^th, 2007, 4:52pm

Seems odd that a troll would write almost 900 words just to punk Jose.

Title: Re: Valid Cause and Effects?
Post by vietvet2tours on Dec 18^th, 2007, 6:15pm

on 12/18/07 at 16:52:43, brewcrew wrote:

Seems odd that a troll would write almost 900 words just to punk Jose.

Them scamps.

Potter