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        New Message Board Archives >> Medications, Treatments, Therapies 2002 >> What is with this circadian rhythm thang?
        
(Message started by: Cry-or-die on Aug 12th, 2002, 3:44pm)
Title: What is with this circadian rhythm thang?
Post by Cry-or-die on Aug 12th, 2002, 3:44pm
Circadian rhythm = the biological cycle (your internal clock)

Hmmmm, I just did a bit of research on ACTH and found that it is very circadian rhythm oriented. Levels of ACTH are lowest at about 12 midnight and highest at about 8am. Hmmm. I'm curious about this circadian rhythm thang...mine come every 13 - 16 months in 6 - 10 week cycles. Same consistency, start relatively easy to handle working up to kip10 (in my own estimation of my experience of pain...10 being unbearable and wanting to die) and then dissappearing altogether after a 4-7 days of shadow headaches as the effects of the 6-10 weeks of pharmaceuticals wears off.

Wtf is with that??? why such a close knit pattern? Almost like a routine of it's own...a scheduled event in the pituitary? Is it hormones? Pain is only the end result....we need to find out what the cause is. Dilation of blood vessels instigates pain, but what is dilating the vessels?

Personally I'm tired of treating the effect and not the cause. We all have this dirorder in common so it's not like there is a shortage of willing participants that would gladly accept some radioactive protiens to the cause of science and PET scans if it will help get rid of the pain. I will, I volunteer!~
Pick me!!!

I am beginning to see the value of hearing all the different things people have tried and it has helped me to make some of my choices...and for this I thank you all.
But I want real pain freedom and I'm contemplating going to school for neurology...specializing in CH's  ;)

I want to be...
chemical free...

But I'll take lots now for none later :P

We need to look at the clock to find out what this is about, I got a feeling......some kinda CNS short circuit
Title: Re: What is with this circadian rhythm thang?
Post by SteveY on Aug 12th, 2002, 5:09pm
Believe me,

There are some very clever people doing that now.

Have faith, the cure will come.

PFDAN

Steve
Title: Re: What is with this circadian rhythm thang?
Post by Bob P on Aug 13th, 2002, 8:39am
Visit the OUCH research library and read the articles on the hypothalamus.
Title: Re: What is with this circadian rhythm thang?
Post by firebrix on Aug 13th, 2002, 3:10pm
Its all chemistry my friend and quite hard to get one's head around.
There's a lot on the net about it. Try a Google Search on seratonin after Bob's good advice to check the Ouch site.Read all the links and check out the archives. Many of Pink Shark Mark's posts help newbies to understand the concept after reading the real tech stuff.
It's actually fascinating what the brain does while we are unaware!
If you really want to be chemical free (don't we all?) have you considered the New Therapy? Many people find it has worked for them. Research everything first however.
I spent weeks reading to understand the hypothalamus and seratonin!! A picture emerges though, and in doing so we have increased our own awareness and bring ourselves to a point of understanding where we can comprehend meds and possible treatments.
Good luck! E mail me if you need some links.
firebrix
Title: Re: What is with this circadian rhythm thang?
Post by Ted on Aug 13th, 2002, 3:20pm
Cry. there really is a lot of very good information here from years of us doing just what you're doing now: Looking for answers. take the time to read the information on this site and in the OUCH library. The hypothalamus (something you asked about in another post) and circadian rhythms are all involved.
Title: Re: What is with this circadian rhythm thang?
Post by Ted on Aug 13th, 2002, 3:25pm
You also might want to read the article documenting there are times the pain starts before the dilation of the blood vessels, meaning that's not necessarily the cause of the pain.
You've got some good posts here. Keep plugging away.
Title: Re: What is with this circadian rhythm thang?
Post by paul_b on Aug 13th, 2002, 10:59pm
Thank you Den. Great post. Always felt family history involved but did not associate it to geography as well. Analogy with birds sent a chirp to my brain---I think you may be right on.
Title: Re: What is with this circadian rhythm thang?
Post by Bob P on Aug 13th, 2002, 11:31pm
Then again, if you look at the daylight/seasonal thingy in the cluster survey, with over 11,000 responses you get:

Spring (Mar-May)   1583   14%  
Summer (Jun-Aug) 1001     9%  
Fall (Sep-Nov)        1590   14%  
Winter (Dec-Feb)     920     8%  
Randomly              3874   35%
Title: Re: What is with this circadian rhythm thang?
Post by oringkid on Aug 14th, 2002, 10:24am
The latitude thing doesn't make too much sense to me.  If my parents were born above 45 degrees (I have no idea, they were both born and raised in VA) Why do I have CH and my brothers don't?

How come people whose total ancestry is Australian get it?

The light part might make some sense though.  Many of us get our cycles around the time that we go in or out of daylight savings.

I recently moved to AZ and AZ does not do the DS thing and I started a cycle after a 2 year remission right after the time that I would have normally gone through the DS change but didn't.

I don't know...................

Sherry
Title: Re: What is with this circadian rhythm thang?
Post by Bob P on Aug 14th, 2002, 10:47am
The light thing:

The point of my post above was that 3000 start cycles in spring//fall - when daylight changes.

6000 don't go into cycle in spring/fall.

So many do start when light changes but many more don't.
Title: Re: What is with this circadian rhythm thang?
Post by Cry-or-die on Aug 14th, 2002, 12:56pm
This is a short one...lol...the long winded one is incoming!!!lol

Food for thought coming soon! Replies first tho  ;D

Steve...I believe you...lol

BobP...I went there and read lots (ouch site) ...thanks....and the light cycle changes every day as far as I know. ;) I don't think that there is a correlation between CH and SAD (seasonal affective disorder). It is because of the high response to random occurance that makes me doubt the seasonal part. I am random, but in a pattern...July/aug, Nov/Dec, Feb/march, These are a few of my least favorite months...lol...except summertime with no CH ;D

Firebrix...I know about the chem thang, I have taken 1st year chem and 2nd year bio...so while I may be a newbie at the posting board, I am neither a newbie to CH nor biological functions and physiology. No, I have not tried the New therapy for Ch although I am very interested in it. Can someone help with spore prints? I have my atrium ready....just need prints. I will do a preventative dose every 6 months and just before the next cycle is supposed to start. I also understand the relationship of hypothalamus-pituitary in the active dilation of vessels, I just wanna know what comes before that ;D Thanks for the input..it all helps to piece together the puzzle firebrix

Ted...I have read oodles of stuff from my heaven sent page made by the ch demi-god named DJ!!!! Thanks DJ I am also aware of pain starting before the actual dilation, I use this as my cue for taking abortive meds...I find that I can feel the dilation of my carotid artery before anything else...then the stuffy nose and then pain rapidly follows that indicator for me. Thanks for the encouragement.

Den...I am skeptical of the latitude thing Maybe it is a sign that there is another iceage coming and we should migrate south...but I doubt it...lol...and while the ch cycle is quite predicable in frequency and duration of cycles in an individual , there is too much differentiation in individuals and within the group to make it seasonal. Also, there is no family history of migraines of CH in any of my family or extended family that I know of.
There are common factors that we all experience with CH, we need to find out what that thing is. I'm not ruling out any theories at this point, but good thoughts keep 'em comin'!


Thank you all for your interest and responses, I am greatful to all of you for trying to help me get it. ;)

Another biggie to follow this one...here it comes!!!
Get your glasses if ya got 'em...lol.

Luv ya all.
chat soon!

Cry-or-die
aka mikeyd
Title: Re: What is with this circadian rhythm thang?
Post by Cry-or-die on Aug 14th, 2002, 1:12pm
Hello everyone! Got your gogz on? here it goes!
My CH's seem to be asscociated with a different kind of beat (rhythm), 13-16 months apart lasting 6-10 weeks. I started just in time to screw up the kids summer holidays. Mine show up therefore at all seasons. which means I'll get them again around christmas time next year  :(  I have done a ton of research and reading on the neurology and chemistry on the blood vascular system, neuropathology and associated ganglion.

I read a paper by Dr. Goadsby that indicates that cluster sufferers have a specific portion of the brain that has become enlarged in comparison to those who do not.

I was also looking at neuropathology and found that it could be pathology related. It seems that although we DO all have the same nerves and nerve centers such as the trigeminial nerve, sphenopalatine ganglion...you all know what I mean....I hope...lol
Anyhow, it seems that the pathophysiology is different in many cases. It seems about 99% of peoples neural pathways follow some 11 different routes or  general patterns connecting and intertwining in different ways. to reach thier destination in the maxilliary, facial, temporal, etc. areas where they terminate.
Just wondering if when they were looking at these patterns if they came across a DIFFERENT neural map of a clusterhead...maybe not because since it is only 0.1-0.4% of the population, maybe our map was undiscovered. Maybe...I dunno...I'm still looking tho. on to the next post.....sigh...it's too long...lol
Title: Re: What is with this circadian rhythm thang?
Post by Cry-or-die on Aug 14th, 2002, 1:13pm
Also I found a VERY INTERESTING statistic and some laws that almost threw me into borderline rebellion-like rage. I found that many illnesses are caused by mercury poisoning. Mercury, being a bioaccumulant, is thought to be a leading cause of headache (as well as a host of other debilitating conditions, many mental). What surprised the hell outta me was:

1)They still use mercury/silver compounds in dental fillings!!!! Mercury fillings can leech up to 14micrograms of mercury per day...possibly more if there is corrosion of the filling! (keep in mind that this is per filling)Mercury is also very poisonous to the nervous system and it seems to accumulate in low spots (the heavier than water thing)and has an affinity for neurons (although I may be mistaken in this analysis and interpretaion)

2)Get this one: 87% of people (468/532 headache sufferers i think was an approximate ratio...I'm going from memory) reported improvement/cure of thier headaches after having all mercury fillings removed and doing a body cleanse using some kind of body flushing program to remove the bioaccumulated mercury from the body!!!! 87 f****ng % (Needless to say I am getting some toxicity tests ordered up on my next trip to the GP)

3) (this pissed me off even tho I'm canadian)The ADA (American Dental Association) has passed laws in some states stating that removal of mercury fillings is unethical. I also (like the author who wrote this page stated) believe it to be a big financial cover-up because if they were to admit that Mercury IS in fact a serious risk to health, the government and insurance companies would have to fork over billions to remove this toxic shit from our mouths. So istead they just keep putting in there to cover up thier fuck up. Another thing I found that a few dentists were quoted as saying that after removal of these fillings they had to be taken to a hazardous waste facility...too toxic to throw in the garbage or landfill, but not our mouths????

Anyhow this is my postulation:
In conjunction with the different neuropathology specific to us (CH'ers), maybe, just maybe we are dealing with mercury and/or other heavy metals (lead for example) slowly bioaccumulating until it becomes a problem. It affects people in different ways based on neuropathology (may manifest as migraine, CPH, CH, etc...) I'm sure you get my drift. This would partially explain why the average age of onset is 20-50 years old. Many people don't get any dental work done until thier teens or early 20's....like me. I'm not saying it's all dental, obviously there are other sources of heavy metals in the environment. The point is though...once you have enough in you to begin the cycles...it never goes away...bioaccumulant. I am also wondering if the characteristics of the cycle are related to some sort of purging mechanism designed to flush the neurons,ganglion, or wherever it is being stored...causing remission until a time that the levels are again high and the nervous system requires another purge, hence another cycle. The dilation of blood vessels and increase in BP is a really good flushing mechanism and the headbanging stirs it up a bit too I'm sure...lol.

It seems oddly circadian like, but I can get one anytime during the day...it has favorite times, but shows up whenever it wants to it seems...usually at the most inopportune times.

So now a few questions...has anyone tried a mecrury cleansing program as a treatment?
Has anyone had toxicity tests done to determine if it is in fact heavy metals giving us grief?

Like I've said in other posts, I'm tired of treating the effect, I want to find the cause. Most of the research I have read about is all effect based. Hypothalamus, hormones, receptors, blockers, vasoconstrictors and dilators, pituitary, neurological...etc.

I'm sick of all this perscription crap tearing apart my head...it messes me up bigtime and I hate it (but unfortunately I hate it less than the beast  :-/ )

I am also interested in some spore prints so I can treat my clusters organically instead of chemically without side effects. I will listen to all of the invaluable advice given by our good friends whom are experienced like Flash, Pinky, Monique and Mastiff and all the others whose valuable experience has been posted here for us all to read.

Just a side note for any researchers that might read the post...I'm wondering if there is a compound that bonds to mercury in psylocibes and removes it from the body through the feces or urine?

Man...am I long winded MOFO or what!!! LMAO

Sorry about that ::)

At any rate, I hope that there is some new food for thought for us to chew on...all responses are welcome...thanks everyone again....esp DJ :)

Pain free days are comin' soon

Cry-or-die
aka mikeyd
Title: Oh please not again Cry-or-die !!!
Post by Ueli on Aug 14th, 2002, 2:24pm
Oh please not again Cry-or-die !!!



This so called 'Mercury poisoning' from amalgam tooth fillings is the most irresposible health fraud ever to hit this planet.


Read here about The Mercury Amalgam Scam (http://www.quackwatch.com/01QuackeryRelatedTopics/mercury.html)


This nonsense has been discussed here 2 month ago: http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=meds;action=display;num=1023983095;start=
Title: Re: What is with this circadian rhythm thang?
Post by Cry-or-die on Aug 14th, 2002, 3:31pm
Ah yes, but consider the source. THE ADA? U.S. government. Pharmaceutical companies have way more pull than you might realize.

Furthermore....why has mercury/silver amalgams been banned in most of Europe?

What are thier standards for safe amounts? I suppose that you believe PCB ingestion over a long period has no effect either...tell that to the whales washing up on the beach and the Inuit who are sterile and having more birth defects/thousand population in the world because of PCB contamination.

Just like the fact that the US still sells leaded fuel when we know it is toxic...safe levels my ass...pollution is pollution and it makes us sick...in various ways and in various forms...don't brush it off so easily...look for some non-biased (non-american) information. That paper you referred to me looks like biased info to me.I don't believe any info coming from the ADA...they promote flouridation of water for dental reasons and it's been proven that it does more harm than good with no difference between cavities in the teeth of those drinking non-flouridated water. However there was a 10% higher incidence of cancer in the flouride group than the control group over a 13-17 year period.

but to quote dannyboy from a previous string...my humble opinion is just that...my opinion. Take it or leave it for that...if you don't like the string...just move along like I do.

Just wondering if you have tried a mercury flush treatment?

Don't believe everything you read...approach it with an open mind and look for links...it's all I am doing too. I want them gone and reading voraciously to find out as much as possible and looking for ALLL possibilities. I won't dismiss it that quickly. But I will look for other causes...it's not like AHHHAAA...that must be it and focus on just that, I realize that it is only a possibility.

Acceptable exposure is subjective. A little will do nothing for some and virtually kill others...keep an open mind Ueli. Science is the way and we will find out what it is and how to fix it. Keep looking for the common denominator and try to be a bit more supportive instead of oh no not this shit again...BTW...thanks for the links. A bit more reading never hurts ('cept in a CH)

Thanks, later ;)

Cry
Title: Re: What is with this circadian rhythm thang?
Post by Slammy on Aug 14th, 2002, 3:49pm

on 08/14/02 at 15:31:24, Cry-or-die wrote:
look for some non-biased (non-american) information.


Are you saying that  non-american info is less bias?  You're killing me!  The European Union is campaigning to ban the use of materials such as cadmium and lead in the manufacturing of electronic equipment.  They also proposed to ban the import of equipment that uses these materials.   However, the European battery-maker industry raised holy hell and got an exclusion added to the EU proposal.  But get this (this is good), 98% of Lead (PB) material usage is in:  anyone, anyone?
......The making of batteries!.........

Friggin Americans... we are rubbing off on the Europeans!



Slammy   8)
Title: Re: What is with this circadian rhythm thang?
Post by Cry-or-die on Aug 14th, 2002, 3:50pm

on 06/13/02 at 15:19:25, Bob P wrote:
Family members of clusterheads are 14 times more like to have clusters than familys of non clusterheads.  That tells me it's more than fillings.

Question BobP???
Where is this statistic from...there is no history of clusters in my family.

Cry
Title: Re: What is with this circadian rhythm thang?
Post by Cry-or-die on Aug 14th, 2002, 5:05pm
A few more links showing  body parts affected by mercury
http://dentistry.about.com/gi/dynamic/offsite.htm?site=http%3A%2F%2Fwww.sukel.com%2Ffillings.htm
A book review: http://www.amazon.com/exec/obidos/tg/stores/detail/-/books/0967616808/reviews/102-7357885-5160106#09676168085000

as well as you should take a trip back to that string you sent and look at a few of those posts like AnthonyT&Gabby too, and Ueli...your relationship of planetary cycles seems to be one of the most sensible explainations I can relate to on these Mb's... helio, lunar and planetary forces all affect gravity and other invisible forces to some degree...interesting postulation...I'll use that one in the puzzle somewhere too.
This might explain the frequency, duration and the differences between our individual circumstances ie.birthdate, time of birth, place of birth etc. Yes Ueli...very interesting thought line indeed. (anyone born on Mar 10/66? lol) Coz if you get 'em ...maybe we all suffer at the same time???

AHHHHHAHAHAHAHA...i LOVE IT!!!

There are some really great thoughts about all this stuff...verrryyy interesting indeed.

This is so fun!

Cry
Title: Re: What is with this circadian rhythm thang?
Post by Bob P on Aug 14th, 2002, 5:07pm
I believe it's from a technical article about a study conducted on heritability of CH.

It's the one I said I would look for in my files and haven't done yet.  I have a file of "working stuff" with a couple hundred tech articles that I need to read through and see if I should put them in the OUCH Research Library (there is an article on heritabilty of CH already in the library).

The article doesn't say all CH is inherited.  It does say that if it is in the family, then future generations are more likely to have CH than the general public is.

I try to find the article tonight.
Title: Re: What is with this circadian rhythm thang?
Post by Ueli on Aug 14th, 2002, 5:19pm

on 08/14/02 at 15:31:24, Cry-or-die wrote:
Furthermore....why has mercury/silver amalgams been banned in most of Europe?


Could you please tell me were you've gotten this information. I live for more than half a century in the center of Europe and I have never heard about that.


What BobP quoted. "Family members of clusterheads are 14 times more like to have clusters than familys of non clusterheads." is from the research of Dr. Peter Goadsby. But of course you cannot believe in what an outstanding member of the medical establishment says; after all his research is partly financed by the Wellcome Trust, who holds a considerable part of the stock of the greedy GloaxoSmithKline.

The sentence "there is no history of clusters in my family" does not contradict any statement about the heritability of CH. It is only the sellers of wonder-drugs that take one (fortuitous) case of 'success' to construe a one-case statistics 'proving' the validity of their claims.

People most exposed to mercury are surely those working in mining and processing of mercury. Has your research of the mercury connection shown that the incidence of CH is particularly high in this group?

PFNADs
Ueli
Title: Re: What is with this circadian rhythm thang?
Post by Cry-or-die on Aug 14th, 2002, 5:20pm
Well I must agree that lead is bad, but it is the best for low cost batteries which we all need??? But at least they don't add it to thier gas. ::)

Slammy---> 8)<---cool dood, I am talking about unbiased info NOT from any of the pharmaceutical companies, American government, or the ADA or any other affiliated group that might be lobbied by such organizations. THAT is what I mean by unbiased american info. Do you grasp the influence that money has over people? Money skews results, opinions and people  :o ...hehehe....

I will be doing further research, but I will NOT be going out and getting all of my amalgam fillings out...I will use the chelated products first to cleanse my system before I do anything (to quote sailpappy) costly and unneccessary to fix the problem.

Question sailpappy?
After you had the teeth aforementioned extracted...did you use a mercury detoxification program to rid yourself of the bioaccumulated amount...mercury is a naturally occurring substance and so can be acquired continuously through other means such as diet, proximity to industrial areas and other sources too.

I'm not saying that it is exclusively fillings...but an accumulated effect of multiple sources, and don't get me wrong, I'm not implicating mecury exclusively..there are possibly other things to...maybe mercury isn't even one of them...it's just that my readings have implicated mercury in causeing many disfunctions within the body and the hypothalmus is one of them.

FEEEED MEEEEE!!!


lol

later

cry
Title: Re: What is with this circadian rhythm thang?
Post by Cry-or-die on Aug 14th, 2002, 5:23pm
Ueli, I'll post the URL when I backtrack the hundreds of URL's I have browsed in the last few days.

Try an chill with the attitude mate.

I have a lot of respect for the research being done by Goadsby and all the others. I just don't trust all those profit-mongering pharmaceutical giants..so forgive me and don't take offense...Some like Goadsby care about us...thier financiers however have an alterior motive and it ain't my health.
It's my opinion and I'll stick to it.

Cry
Title: Re: What is with this circadian rhythm thang?
Post by maria on Aug 14th, 2002, 5:49pm
hey Cry and BobP,
I have a question for you which I have been wondering about.  Since the CH's result from some sort of malfunctioning of the hypothalamus and the cessation of the CH's result from the hypothalamus resetting itself somehow, if you cheat the beast through taking medication, does this interfere with the hypothalamus' ability to reset itself, thus resulting in longer CH cycles or episodics turning into chronics?  In my case I knew when the CH's were at their worst or peaking (the beast's grand finale) that they soon would disappear and be gone till the next year.  I view the peaking period as the time when the hypothalamus starts to recognize that something is haywire and begins to reset itself.  Any opinions on this would be welcome.  Thanks, Maria
Title: Re: What is with this circadian rhythm thang?
Post by Cry-or-die on Aug 14th, 2002, 5:53pm
Ueli...and others...here are some URL's to look at in regard to mercury and amalgam fillings.

http://www.vimy-dentistry.com/

http://www.valleyadvocate.com/articles/dental.html

Pay attention to the first paragraph in regard to amalgam removal....Ueli...look at the bottom of the page to see a few of the EU states that have banned types of amalgams.
http://www.sukel.com/mercury%20amalgam%20silver%20fillings%20unsafe.htm

http://www.orcbs.msu.edu/AWARE/pamphlets/hazwaste/mercuryfacts.html

I have more...but I gotta take movies back now or pay the late charge price after my cheap movie rental of toonie toosday. BBL folks..

just trying to clear a few things up in my own mind...seems like a lot of misinformation on this subject and I want answers before I move on. Sorry for my persistence, but this is for ALL OF OUR benefit...not just my own selfish needs. So keep that in mind before U fly off the handle and tell me I'm fulla crap...please.
Thanks
later

Cry
Title: Re: What is with this circadian rhythm thang?
Post by Cry-or-die on Aug 14th, 2002, 7:05pm
Good question Maria...I've been pondering that question lately myself, especially in respect to verapamil.
I have seen many posts from people who are on verap and it extends the cycle for some reason. Maybe it has no relevance, but I think it might interfere with the "reset" of the hypothalamus...although honestly I haven't given it much of my research time. I'm not even sure if the hypothalamus is actually resetting itself...can it do that? I dunno.
:DI've seen a lot of references to the reset button in the hypothalamus in here...but no references to it outside the MB.
Just on the front of my computer box...it resets the computers hypothalamus...lol :D
Wonder what the chances are of getting Doc G. to wire me up with a reset switch...hmmmm

hahaha

enjoy life...it's a gift...that's why the call it 'the present'

Cry
Title: Re: What is with this circadian rhythm thang?
Post by BobG on Aug 14th, 2002, 7:12pm
For those of you that may not know Cry-or-die, formerly known as mikeyd

He is a friend of Ali-the-nut-case-doctor, IP 24.69.209.200
His post title on 5-24-01 "cluster CURE"
This is what mikeyd said "cut the nerve that is wrapped around the artery that is causing the pain"
and "U are pain free...for GOOD"
He also said "I have to say that for a support group...you suck!"

For those that do not know Ali Sultaneh, he was new to the board 4-3-01, claims to be a neurosurgeon in Damascus, static IP 195.22.198.9, also went by the name smith.

Nuf said.
Title: Re: What is with this circadian rhythm thang?
Post by maria on Aug 14th, 2002, 7:36pm
Cry,
   I think the "reset" of the hypothalamus is probably speculation/ hypothesis and won't be found in the research.  But I think Pinky mentioned it in one of his shroom threads.  IMHO I think there may be some validity to it, and that is why I wonder about the meds causing longer cycles or episodics turning into chronics.

regarding your quote in your last post here is the long version of it:

Yesterday was history
Tomorrow is a mystery
Today is a gift
That is why it is called the present.


add to that one of my other favorite quotes:

The world is so full
 of a number of things,
I am sure we should all
 be as happy as kings.



Keep up on your research.      Maria
Title: Re: What is with this circadian rhythm thang?
Post by Cry-or-die on Aug 14th, 2002, 8:13pm
Yes Bobg,
That is correct, I did say that stuff...and I also recognize that there are other ways of dealing with this phenomenon without surgery.

That was also my first post I think...and the respondants to that string were quite cruel to pick on a newbie in such a rude and discourteous way! Allright...as far as a support group goes, you're great...for the most part with only a few miserable old farts without the patience to take the time to point a newbie in the right direction without making them feel 2 fucking inches tall.

Be patient and help...don't be a jerk and everyone will get along.

Thanks for bringing that to our attention Bob

Cry
Title: Re: What is with this circadian rhythm thang?
Post by Ueli on Aug 14th, 2002, 8:35pm
Cry-or-die,

The site http://www.sukel.com/mercury%20amalgam%20silver%20fillings%20unsafe.htm is the home page of Phillip P. Suckel. Didn't you notice the 3 letters DDS following his name? I guess you know what they stand for. I wonder how big his yacht is.
This is the prototype of a web page for a scam artist. Just one hint: 3 countries and partially a fourth have allegedly banned amalgam, but of course no verifiable links are given. Why should he? Europe is far away and nobody - except a few - know anyway anything about it.
A good example is our dear Cry-or-die, for whom three or four European countries are "most of Europe". My last count of European countries is 45, the same number as the continental states of the USA.


After reading BobP's post nothing surprises me anymore. Cry-or-die, please go spread you bullshit somewhere else. We don't like snake oil salespeople here, and I have better things to do than to retort your crap.

To all others PFNADs,
Ueli
Title: Re: What is with this circadian rhythm thang?
Post by Cry-or-die on Aug 14th, 2002, 8:47pm
Well, I'll look around to see what I can find to change my opinion. Since you haven't given me anything to look for. As for retorts...keep them, you sound angry about something, I want no part of your anger.Further, I am big enuf to admit when I am wrong.
I get hornery when I get my ch's too...I will remove or modify any of my postings that are incorrect...without hesitation. Send me a message in pm or ICQ and we can discuss it together instead of wasting everyones time and energy on this ok?
Title: Re: What is with this circadian rhythm thang?
Post by Ted on Aug 14th, 2002, 8:54pm
You get so WHAT when you get CHs?
Hey BobG. You remember who it was that had that special method of relieving his attacks?
Title: Re: What is with this circadian rhythm thang?
Post by maria on Aug 14th, 2002, 9:03pm
Hey all,

I don't care who said what or who did what but please answer my question about resetting the hypothalamus and whether meds interfere with the hypothalamus' ability to "reset" itself.  Inquiring, Maria
Title: Re: What is with this circadian rhythm thang?
Post by BobG on Aug 14th, 2002, 9:07pm
Hey Ted

yes, I remember

but don't ask why I remember that sort of thing.
Title: Re: What is with this circadian rhythm thang?
Post by Ted on Aug 14th, 2002, 9:13pm
I have never seen any studies on your questions but I can speculate. Since most episodics who take meds "to cheat the beast" don't turn chronic and most sufferers aren't chronic I don't see any correlation. As for longer cycles, people have killed cycles by taking meds, legal or not, so I don't see a correlation there.
Title: Re: What is with this circadian rhythm thang?
Post by maria on Aug 14th, 2002, 9:28pm
Thanks Ted, BobP would like your opinion here or any one else (Pinky). Thanks. Maria
Title: Re: What is with this circadian rhythm thang?
Post by Wendy1 on Aug 14th, 2002, 9:35pm
OK, (!)  I have not been here for almost a year and i see a few things have changed!!!  NE way, I almost didn't make it through my last cycle.  I have been pondering the thought of clipping the nerve that is affected and wondered how much research has been done on the subject.  I tell you, after the last cycle, I'm willing to try anything.  My sister-in-law recently had surgery for Trigeminal Neuralgia and had a 'plate' inserted between the affected nerve and the arteries that were 'squeezing' the nerve.  Why can't they do something like that for us?  Oh, by the way , I hope I am posting this where I am supposed to.  No offense, but this new site is very confusing.  Especially with a ol' slow antiquated 'puter.  Thanks.  Wendy
Title: Re: What is with this circadian rhythm thang?
Post by Ueli on Aug 14th, 2002, 9:54pm
Maria,
As Arne May explained at our Regensburg meeting, During a cluster period some threshold is lowered, so when any of about a dozen neurotransmitters and enzymes crosses it, an attack starts.
Verapamil and triptans act on the blood vessels, and I don't think they have an influence on the hypothalamus or the imbalance of the neurotransmitters and enzymes systems. It just takes its time for the above mentioned threshold to readjust, I don't think any preventatives or abortives have an influence.
But then, if things get worse, people are prone to blame anything that changed.

PFNADs
Ueli
Title: Re: What is with this circadian rhythm thang?
Post by BobG on Aug 14th, 2002, 10:02pm
Wendy,
Post anywhere you please!

Here's some places to click for "clipping"

http://www.clusterheadaches.com/wwwboard/messages/74124.html
Rodger Griffin 1-11-01, Stereotactic Radio Frequency Rhizotomy

http://www.clusterheadaches.com/wwwboard/messages/100398.html
Margi 7-12-01 list of posts about NOT having surgery

http://www.allsands.com/Misc1/gammakniferadi_uux_gn.htm
describes Gamma Knife Radiosurgery
Title: Re: What is with this circadian rhythm thang?
Post by Ueli on Aug 14th, 2002, 10:18pm
Wendy,
For Trigeminal Neuralgia surgery can be indicated for refractory cases, and it has lots of success stories for it. But for CH no surgery, considered as successful by independent experts, is know. Please read the links BobG posted.

PFNADs
Ueli
Title: Re: What is with this circadian rhythm thang?
Post by Bob P on Aug 15th, 2002, 8:52am
Resetting the hypo - I agree with Ueli's post above.  I've never seen anything in writing about the meds we take affecting the hypothalamus.  They work mostly on neurotransmitters at the neuron level.

The hypo does receive "feedback" from sensors in the body which let it know what's going on.  Oops, blood pressure is too high, better cut back on 5HT and let the blood vessels expand to lower the pressure.  Oops, this guy ate some food, better fire off some 5HT to help the GI track move it along, etc.  The meds could affect the feedback the hypo receives and in that way adjust it's functioning.  There was an English poster a while bck who was seeing Dr. Mathrau.  He siad Maqthrau told him a defective feedback loop was involved in CH.
Title: Re: What is with this circadian rhythm thang?
Post by Bob P on Aug 15th, 2002, 9:13am
Heritability of CH

Here's an overview of a study by the Italians:

Increased familial risk of cluster headache.

Leone M, Russell MB, Rigamonti A, Attanasio A, Grazzi L, D'Amico D, Usai S, Bussone G.

Carlo Besta National Neurological Institute, Milan, Italy.

The authors studied the occurrence of cluster headache in the families of 220 Italian patients with cluster headache. A positive family history was found in 20% (44/220) of the families. Compared with the general population, first-degree relatives had a 39-fold significantly increased risk of cluster headache. Second-degree relatives had an eightfold significantly increased risk. The increased familial risk strongly supports the hypothesis that cluster headache has a genetic component in some families.

PMID: 11342697 [PubMed - indexed for MEDLINE]
Title: Re: What is with this circadian rhythm thang?
Post by Slammy on Aug 15th, 2002, 11:05am

on 08/14/02 at 19:12:37, BobG wrote:
For those of you that may not know Cry-or-die, formerly known as mikeyd

He is a friend of Ali-the-nut-case-doctor, IP 24.69.209.200
His post title on 5-24-01 "cluster CURE"
This is what mikeyd said "cut the nerve that is wrapped around the artery that is causing the pain"
and "U are pain free...for GOOD"
He also said "I have to say that for a support group...you suck!"

For those that do not know Ali Sultaneh, he was new to the board 4-3-01, claims to be a neurosurgeon in Damascus, static IP 195.22.198.9, also went by the name smith.

Nuf said.



Remind me never to piss off Bob!! Christ!   ;D



Slammy    8)
Title: Re: What is with this circadian rhythm thang?
Post by oringkid on Aug 15th, 2002, 4:03pm
Jeez Louise!  

1)some of you have obviously removed your posts making it difficult to follow this thread

2)I don't think Cry-or-die's or MikeyD or whoever should be completely discounted just because of earlier posts where he thought something might actually help us.

3)Mercury is poisonous.  If you have it in your mouth it will eventually get into your body.  Whether or not it has any affect on CH, no one really knows.  None of us should have ever had mercury put into us.  Oh well.

4)I have absolutely no scientific basis or articles or whatever to support this opinion, but it is my opinion too, just from reading the posts on this board that Verapamil is causing some to go from episodic to chronic or at least it is prolonging the episodic's cycle.
Again that is just from reading the posts on this board.

5)None of us knows the intricate workings of the human brain.  Nor do we understand much of our environments impact on our systems.  Let's not be too closed minded.  I am not saying lets fall for every scam that comes around either.  But, lets not let our quest to find fault, allow us to overlook something that may seem unrelated at first glance, or too simple.  We have to deal with doctors and insurance companies and co-worker who are closed minded.  Let's not allow ourselves to fall into that all too comfortable trap.

Sherry
Title: Re: What is with this circadian rhythm thang?
Post by Cry-or-die on Aug 16th, 2002, 9:50am
Thank you Sherry! This is how I feel about it. I'm only looking for answers and brainstorming with all of you and keeping an open mind about it all.

I'm psyching myself up to do the shroom therapy and have ordered some spore prints (Thank you Tom for the links!).

I'm so frusrated with the beast that I'm grasping at whatever is within reach...it's scares the hell out of me. I just finished an episode and having really terrible tremors...I'm so scared, I never feel like this at any other time, even when I am realllyyy sick with a flu/infection.

I was coming back from my physician (for L5-S1 spondololysthesis) yesterday after discussing the fusing procedure when I had a complete meltdown in the rear end of my pickup truck, the differential ran out of oil. I was still 80 kilometers (50 miles for the american readers) away from home. Luckily I had my cellular with me...but had no reception on the highway...so I climbed the nearest hillside to get the best signal (about 1/2 mile to the top)and ordered tools, then later back up the hill for a buddy to  call me a tow truck...then later back up the hill to check to make sure he had sent one.
Every time I started up that hill...I thought my heart was going to come out of my chest...it was pounding sooo hard it was scaring me. Is that the verapamil do ya think? Coz if it is, I am going to make every effort to avoid that kind of physical effort like that!
I think I'm going off these meds and just go shroomin', no side effects with that.

Thanks people, off to work for a week.

bu-bye
Title: Re: What is with this circadian rhythm thang?
Post by tommyD on Aug 16th, 2002, 1:35pm
Good scientists approach their work with a mixture of hard-nose skepticism and wild-eyed imagination
Without the first, they may be led astray; without the second, science would never advance.

just a little bullshit philosophy from --

-tommyD
Title: Re: What is with this circadian rhythm thang?
Post by gills on Aug 16th, 2002, 8:49pm
Cry

Very interesting.

My mouth is full of mercury fillings and I have been wondering if they have anytihing to do with CH.  I am an 18 year sufferer.  18 frst, 36 yo now.  ???

My CH sound the same as yours.  I once thought they were seasonal.  End of February, beginning March start for about 2 months.  In Australia this is end of summer, beginning of fall.  They are like clockwork. ???

I would like to know what occupations if any we are all as I have seen no research or statistics on this.  Do we work with our minds or are most of us physical in nature.  My field of employment is professional as a financial planner.

Hang in there Cry.

Gills.


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