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(Message started by: LasVegas on Oct 3rd, 2003, 2:47pm)
Title: Original Cause/NOT Trigger
Post by LasVegas on Oct 3rd, 2003, 2:47pm
This is NOT a thread on triggers of CH's AKA what brings on a CH attack.  This is merely my brainstorming with you guys trying to figure out why we have CH's.  If my reading is accurate and my spelling is not, the cause of the CH's include the Trig nerve and Hypothalumes Gland.  Please, correct me if i'm mistaken.

Providing this is correct, what is the origination of CH's?  Some people like myself began at 11 years old (i'm now 35) and others in their 30's, 40's and 50's.  Studies I have read say this is most likely NOT hereditary, although it can be, or maybe just coincidental.  One common question debated seems to be, Is this a birth defect?  I have read some say yes, some say no.  My guess is not, or we would have all started suffering as toddlers.  However, if this is something we were born with, why would CH's begin for me at 11 and you at 35/different ages in our lives?

So I guess i'm curious, perhaps everybody is, as to what is the original cause to begin episodes or even worse, chronic CH's for each individual clusterhead?

I, for one, survived several head injuries.  My first at 7 years old where I slipped from the top of a 3 meter ladder at a high diving board at a swimming pool complex and landed face first on the cement.  I had reconstructive surgery on my fractured nose.  To this day, I have a deviated nasal septem on my left side of my nose.  Is it a coincidence that I have my CH's on my left side?  Afterall, my left (deviated) septem gets congested, then runny while experiencing a CH attack.

My second head injury, at 11 years old, I had another closed head injury that supposedly gave me organic brain damage.  Coincidentally, my first episodic CH attack began shortly after this accident.  Of course I did not know I was experiencing CH's at the time, however a Dr did prescribe Ergotamine tablets that I would place under my tongue to relive the pain and it worked.  I've read others have had head injuries as well, but have read that most CH sufferers have not had head injuries.  So i'm not here saying that head injuries are a cause for all CH sufferers, but perhaps each individual clusterhead has their own original cause.  

I would like to know if there been any identifying common element that is statistically supportive of the majority of clusterheads?  

Many have stated they smoke cigarettes, drink, are mostly male gendered, commonly begin clusters within a certain age, etc.  But there are so many smokers, drinkers and men in this world without CH's, so in my opinion those are not causes of origination.  What about Seratonin levels, use of street drugs, head injuries, physical exposure to something within the environment, an eye disorder, etc.?  

What does barometer pressure and change of season/altitude/weather conditions have to do with this?  Maybe that ? should be on a thread titled, what's your Trigger?  Afterall, I get my CH's in the Fall season regardless if I live in the city, country, suburbs, mountains, beach or desert.  Yes, i've moved around a bit and very proud to be an American.

Just trying to brainstorm, for some ideas to understand & identify a better picture of all of this.  The more we educate ourselves and others, the faster we will help each other identify a diagnosis for those who may be suffering and not diagnosed accurately.   What's horrifyingly sad is that it is not common to find educated Dr's and medical professionals that are aware of CH's.  Of course there is a difference and separate subcategory of headache of Cluster, as their is Tension, Migraine, Sinus, basic, etc.  F***en uneducated ignorant, UUUUGH!   I have been seen by many professional head doctors over the years and have been through my share of Cat scans, EEG's, MRI's, bloodwork, shrinks, etc. and I self diagnosed myself after 22 years of episodic CH's, thanks to this website back in November 2000. We are all here at this site to support each other through thick and thin, like a family should, as many have claimed this to be, family.  I, for one, am all for being supportive with anybody suffering CH's and/or willing to help others with CH's be cured, diagnosed correctly and definitely PF!  

Please share your thoughts.  Gregg in Las Vegas
Title: Re: Original Cause/NOT Trigger
Post by kissmyglass on Oct 3rd, 2003, 2:57pm
So I guess i'm curious, perhaps everybody is, as to what is the original cause to begin episodes or even worse, chronic CH's for each individual clusterhead?

Thats the million dollar question....short answer is Dunno.  We're just lucky i guess....

Kev
Title: Re: Original Cause/NOT Trigger
Post by Margi on Oct 3rd, 2003, 3:29pm
Hi Gregg,

Well, my take on this is that it IS a condition you're born with that doesn't activate until hormone levels change drastically (i.e. puberty).  Onset IS very commonly during late teens.  Some women don't develop clusters until they reach menopause, so could it be the decrease in their hormonal levels that triggers their onset of the beast?   I can't explain why some folks experience onset at different ages though.  My research has either been teen/late teen onset or menopausal onset.  I'm wondering (after a conversation with Cathy yesterday), if the folks who experience onset at times outside of those two are being triggered by antidepressants....changing the seratonin to a level that awakens an already shaky balance?  Still so many unanswered questions.

They hypothalmus does SO many things - regulates mood, hormone production, body temp, seratonin/melatonin production, sleep, etc. - the list is long.  The change in circadian rythym that comes with season change (change in daylight hours) is what vaults a lot of episodics into cycle, I THINK because of disrupted sleep patterns (again, thanks to Mr. Hypothalmus).  Chronics do also have high and low cycles, but why don't they ever come OUT of "cycle" completely?  I honestly think episodic clusters and chronic clusters are two separate afflictions.  Closely related, but somehow different, because the meds that "work" for episodics don't usually work for chronics and, vice versa.  

So, I'm going to have to agree with Kev here and take the Readers' Digest answer of.....I dunno.  'Tis a strange animal, huh?
Title: Re: Original Cause/NOT Trigger
Post by vig on Oct 3rd, 2003, 3:40pm
I fall outside all of the criteria.
I started CH at 35.  can't blame it on being a teen, or antidepressants or even menopause.  Doh!
nobody in my family has it... even the smokers/drinkers.

I've had a couple of good head injuries.
Christmas is a lovely time of year... oh wait, what was I talking about again...

oh yeah, clusters.   I was in an extremely stressful period in life with a lot of sleep deprivation when they started and I'm pretty sure I 'broke' my brain.
Title: Re: Original Cause/NOT Trigger
Post by Margi on Oct 3rd, 2003, 3:43pm
Hi Vig,
certainly not MY criteria by any means - just stuff I've learned here.

But that sleep deprivation could be what changed the balance for you...maybe it would have stayed dormant in you, had you not gone through that?

It's all maybes for us, isn't it?  No answers in the back of our book. :(
Title: Re: Original Cause/NOT Trigger
Post by vig on Oct 3rd, 2003, 3:51pm
i fixed it.

I think you're right about it possibly triggering something dormant.  It is my hope.

also, the stressful 'item' in my life is gone, and I am hoping that removing the source of the stress, breaking the cycle, and returning to normal sleep patterns may return me to my usual 'dormant' state.
Title: Re: Original Cause/NOT Trigger
Post by Ree on Oct 3rd, 2003, 4:00pm
The doctor at the OUCH CONVENTION 2003  explained quite well the commonality in cluster sufferers... grab a copy of the report and check it out... ree

ps vig I am counting my blessings too..............!!!
Title: Re: Original Cause/NOT Trigger
Post by forgetfulnot on Oct 3rd, 2003, 4:04pm
Margie, are you sure about all that.  ;D

Lee
Title: Re: Original Cause/NOT Trigger
Post by Margi on Oct 3rd, 2003, 4:05pm
hell no, Lee.... but don't tell anyone, k?  ;)
Title: Re: Original Cause/NOT Trigger
Post by BobG on Oct 3rd, 2003, 4:25pm
vig.....LOL


Quote:
I'm pretty sure I 'broke' my brain.


;D That's good. Can I keep it?  :D
Title: Re: Original Cause/NOT Trigger
Post by vig on Oct 3rd, 2003, 4:29pm
sorry, I sent it back already.
the new one's supposed to come next week.
Title: Re: Original Cause/NOT Trigger
Post by tsayswhy on Oct 3rd, 2003, 4:31pm
INTERESTING started mine when i was 29 and then the  big ??? why what triggers it never did anything different
 
             sooo many " ?? as to why"
       
 
Title: Re: Original Cause/NOT Trigger
Post by BobG on Oct 3rd, 2003, 4:34pm
I only want the quote not the broken brain.

Hope the new one gets to you soon. Use it in good health.

;D
Title: Re: Original Cause/NOT Trigger
Post by Marcos618 on Oct 3rd, 2003, 4:38pm
Well mine started when I was 21 or 22. Birth defect?  Not sure, but I also found out when I was 42 that I was allergic to WHEAT. Why did the allergic symtoms to wheat start at that age? Why not at birth or earlier?  
Title: Re: Original Cause/NOT Trigger
Post by stevegeebe on Oct 3rd, 2003, 6:11pm
The only crumb I can mention is that about 27 years ago I had my impacted wisdom teeth removed surgically.  This is a marker for me.  I thought something had gone wrong during the surgery and CH was the result.

Ironic it is that I elected to have them removed that way because I was in fear of the pain.

My lapse in bravery seems to have cost me dearly in someone's world.

Steve G
Title: Re: Original Cause/NOT Trigger
Post by BarbaraD on Oct 3rd, 2003, 6:46pm
Mine started at menapause, but migraines run in my family EXCEPT they skipped MY generation - I got CH - go figure - I'd have settled for the migraines - would have PREFERRED them in fact. But NO  -- I get the GOOD STUFF!!!

Never had a headache in my life till these things hit. Never had any patience with anyone with one. Guess this is my payback for not having any more sympathy in my "younger" years.

Hugs  BD
Title: Re: Original Cause/NOT Trigger
Post by catlind on Oct 3rd, 2003, 7:08pm
Gregg,

Essentially you are asking what is the 'switch' that got turned on to start the CH's and is that switch in everyone or just some?  

Well lets start with what they DO know.  Each CH sufferer has a deformity/derangement of the hypothalamus.  The catch is that it is only present, when in a CH cycle.  

Perhaps a congenital defect like that of heart murmurs?  At this time there are no answers to that question.  The hypo acts in many functions of the body, and it seems that different people react differently to the various upsets that can happen to that system.  

I wish I could make an educated guess as to why/when/how.  Unfortunately there just is not enough about our condition that is understood.  We have run many 'informal' surveys and polls here, and so far the only one that had a high percentage of sufferers that fit, (you're going to laugh) is the length of the ring finger compared to the index finger hehe.  The thread on this is in the archives, and Georgia did up the data on her website.  My understanding is there is a connection with the finger length and the testosterone levels.

In the last couple of years they have discovered that hormones do play a large role in CH, however it is still a case of chicken or the egg.  

You can read the convention report and see what the current thoughts are on things, but I believe we are still in the infancy of exploring the true cause of this.  If we knew the cause, and knew the answer to your question, we would be a whole lot closer to finding a cure.  

Keep asking questions though, the more q's we ask, the more info we gather, and the more help we can be to the researchers and leading neuro's in the quest to understand the nature of our affliction.

Cat
Title: Re: Original Cause/NOT Trigger
Post by Ree on Oct 3rd, 2003, 7:11pm
I said that the other day and got corrected Cat... so I was too tired to argue it... so I just tell em to look for a report... how lazy of me... hey girl I miss you... you are so smart keep in touch... kiss Aidan!!!  love ree
Title: Re: Original Cause/NOT Trigger
Post by Not4Hire on Oct 3rd, 2003, 7:14pm
(i wrote this after reading LasVegas' guys' original post...and NOT reading the answers....except...i cheated.....)

faulty logic:
****Providing this is correct, what is the origination of CH's?  Some people like myself began at 11 years old (i'm now 35) and others in their 30's, 40's and 50's.  Studies I have read say this is most likely NOT hereditary, although it can be, or maybe just coincidental.  One common question debated seems to be, Is this a birth defect?  I have read some say yes, some say no.

My guess is not, or we would have all started suffering as toddlers.

 However, if this is something we were born with, why would CH's begin for me at 11 and you at 35/different ages in our lives?.*****

..why do some people get cancer at ... 5 years old ... and some at ...75...?

i, too have been hit in the bean.... and i have NO-FUCKIN-IDEA if this has contributed to my CH..... so?

***** I would like to know if there been any identifying common element that is statistically supportive of the majority of clusterheads?******

...opposable thumbs?

***** Just trying to brainstorm, for some ideas to understand & identify a better picture of all of this.  The more we educate ourselves and others, the faster we will help each other identify a diagnosis for those who may be suffering and not diagnosed accurately.   What's horrifyingly sad is that it is not common to find educated Dr's and medical professionals that are aware of CH's.*****

....could not agree more....

and Margi said: *****blah...a buncha stuff i agree with.. then THIS GEM: The change in circadian rythym that comes with season change (change in daylight hours) is what vaults a lot of episodics into cycle, I THINK because of disrupted sleep patterns (again, thanks to Mr. Hypothalmus).  Chronics do also have high and low cycles, but why don't they ever come OUT of "cycle" completely?  I honestly think episodic clusters and chronic clusters are two separate afflictions. ****  

WOWZZER! "...two separate afflictions...."

...I think THIS idea ..."broke my brain...."

hmmmmmmm....
Title: Re: Original Cause/NOT Trigger
Post by Big_Dan on Oct 3rd, 2003, 7:42pm
.. I've convinced myself that whatever it is that is dormant, comes out of that state due to allergies.

Chronics - When the condition comes out of it's dormant state, it's awake for God knows how long...

Episodics - The condition goes back into dormancy until there is another allergic alarm clock to wake it for a given time...

... of course, only us lucky folk have that Sumbitch A sshole Mufucker of a condition that's dormant in the first place.


I'm gunna go lie down now... two much think mak dan dum and no spell gud.



-Big Dan
Title: Re: Original Cause/NOT Trigger
Post by catlind on Oct 3rd, 2003, 7:56pm
Steve, you won't like this information then ;)  There is consideration being given to the very thought of 'seperate' conditions within the CH realm.

Medical Abstract:

Upper and lower cluster headache: clinical and pathogenetic observations in 608 patients.

Cademartiri C, Torelli P, Cologno D, Manzoni GC.

Fondazione Don Carlo Gnocchi, Parma, Italy.

OBJECTIVE, BACKGROUND, AND METHODS: Ever since it was proposed by Ekbom and Kugelberg back in 1968 on the basis of the different location of head pain during attacks, the differentiation of cluster headache into an upper syndrome (US) and a lower syndrome (LS) has been regarded as a purely academic distinction. To evaluate whether this differentiation is indeed well founded and to understand its possible significance in the light of current pathogenetic knowledge, we rigorously applied Ekbom and Kugelberg's classification criteria to a sample of 608 patients with cluster headache (CH; 440 men and 168 women), including 483 with episodic CH, 69 with chronic CH, and 56 with CH periodicity undetermined. RESULTS: Of these patients, 278 could be classified as US sufferers and 330 as LS sufferers. Our data analysis showed statistically significant clinical differences between the two syndromes: pain location was more common in the ocular, temporal, and nuchal regions among LS sufferers; in addition, patients with LS reported not only a higher rate of autonomic symptoms, but also a higher predominance of nasal congestion, ptosis, and forehead and facial sweating among these symptoms. CONCLUSIONS: Based on current anatomofunctional knowledge and on the most recent pathogenetic findings, we believe that changes in hypothalamic activity posteroinferiorly may lead to activation of the caudal part of the spinal trigeminal nucleus by way of the hypothalamus, midbrain, and trigeminal nerve fibers and consequently to activation of the trigeminovascular system with a different location in the two syndromes. More specifically, there seems to be a larger and more extensive involvement of the subnucleus caudalis in LS compared with US, where only its ventrocaudal portions are likely to be affected.

PMID: 12482215 [PubMed - indexed for MEDLINE]
Title: Re: Original Cause/NOT Trigger
Post by Not4Hire on Oct 3rd, 2003, 8:18pm
....cat!... it's not a question of whether I "like the information then".... it's a whole new (to me, at least) way of lookin' at CH....

...and i'm sure some "elitist" CH sufferer (upper vs. lower) will proudly proclaim their status as an "uppie" and look down their drippin' nose from their inflamed eyeball and declare their obvious elevated space in the pantheon..... well, fuck dat...

my (obviously *blunted*) point was that some very (much smarter than me) professionals ARE looking at the MOFO...

and I hope they figger the deal out.... fer chronics and  episodics, menopausals and pubescents... uppies and lowies, supporters and supported,...... ya know?

(and that medical terminologystuff.. sorta makes me itch....)
PFDAN's... is-there-a-cure-for-THAT-notfer?....

edit: i mean ...puhleeeze: "anatomofunctional knowledge and on the most recent pathogenetic findings, we believe that changes in hypothalamic activity posteroinferiorly..."

wtf?
Title: Re: Original Cause/NOT Trigger
Post by Melissa on Oct 3rd, 2003, 8:28pm

on 10/03/03 at 19:08:45, catlind wrote:
Essentially you are asking what is the 'switch' that got turned on to start the CH's and is that switch in everyone or just some?  


I happen to think it's in everyone, just like cancer.  People may not agree with me, but I think it's true.  Just takes a certain trigger, whether it be food, allergies, circadian rythyms, smoking, drinking, drugs, etc. to start the very first CH attack in motion, then it graduates to episodic or chronic.  I think that's why it is so hard to isolate the exact cause, because the very first trigger is so different for each person.  

JMO,
:)mel
Title: Re: Original Cause/NOT Trigger
Post by catlind on Oct 3rd, 2003, 8:30pm
LOL N4, I know that I had to read that abstract at least 5 times before I was even able to comprehend what they were trying to say, and then I had to break out the medical dictionary to translate it hehe.

And to think, I have an entire BOOK of those abstracts, fascinating reading, if a wee bit above my head hehe.

Cat
Title: Re: Original Cause/NOT Trigger
Post by catlind on Oct 3rd, 2003, 8:35pm
Mel, I personally agree with you.  I think the switch is in everyone, and it's a matter of what turns it on.  Could be a genetic factor that requires multiple gene 'switches' to all be moved to the on or off position, or a trigger like puberty or menopause.  Hopefully they will find the answers to these questions and thoughts real soon!

Reading all this kind of stuff (medical abstracts) and trying to think it all through hurts my head ;) hehe

Cat
Title: Re: Original Cause/NOT Trigger
Post by brain_cramps on Oct 3rd, 2003, 8:47pm

on 10/03/03 at 16:38:42, Marcos618 wrote:
Well mine started when I was 21 or 22. Birth defect?  Not sure, but I also found out when I was 42 that I was allergic to WHEAT....


found that interesting...   a while back i heard a discussion between a couple of Dr.s that said the majority of allergies appear when the age is evenly divisible by 7 .....    another circadian rhythm that we don't know aboout?


grant       (getting off-topic   LOL)
Title: Re: Original Cause/NOT Trigger
Post by CC on Oct 3rd, 2003, 8:51pm
I think what it really comes down to is:

The way to a cure stems from the cause!

They do not know what causes them, therefor they will not be able to find a cure untill they do!!!


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