I was wondering, with the constant reference to smoking being linked to CH and the obvious non-smoking population of clusterheads, is there still a link to smoking.  So, my question is to the non-smokers; Although, you do not and never have smoked cigarettes, did you grow up in a home that had smokers prior to the on-set of CH?  Or, prior to your on-set of CH, did you work or play in areas/enviroments where smoking was common place?  Just a thought...

Thanks
T-

Hi!

I've obviously had nights out in smoky pubs but other than that - no life around smoking.

My son has been diagnosed since the age of three. Neither he or my ex smoked and my home is smoke free. Any visitors smoke outside so he has never been exposed to any more smoke than walking past someone in a street.

Is that the kind of info you wanted? I'm not sure but I'm trying to help!!

Helen

Thanks Helen,
Yes, this is the kind of info I am looking for.  As I am sure most CH suffer's do, your mind just start to crank into overdrive with all of the info you start to digest.  For many years I went misdiagnosed and felt to be somewhat a freak of nature, and now I know I am not alone.  It is hard to put into words the good feelings I get from finding fellow clusterheads on-line.  Thanks for your input.

Also, My hat goes off to you.  It must be hard to be a sufferer and a supporter at the same time.  Good luck to you and your son.  I will be wishing many PF days for the both of you.

Thomas

Happy to help!

I'll always provide any info because one day, one of us will find the answer. I'm quite convinced ch'ers will play a major part in "curing" this condition. We are the people who have given the evidence to the medical profession about all the "second hand" drugs we have that also help with CH.

We are more powerful and influential than we know!

wrote on May 27^th, 2008 at 5:39pm:

Happy to help! I'll always provide any info because one day, one of us will find the answer. I'm quite convinced ch'ers will play a major part in "curing" this condition. We are the people who have given the evidence to the medical profession about all the "second hand" drugs we have that also help with CH. We are more powerful and influential than we know!

No true'r words have ever been said, one day it will come.
One simple example is the use of Red Bull to kill low level hits, how was this found, I't was stumbld upon by one of our people

Cheers
Barry

I'm a non-smoker, been that way all my life. My dad smoked a lot during my childhood, but never inside the house. He quit few years before his death back in 1997.

Since then I did spend some time at university club, in which other students smoked like chimneys while I tried to focus on the karaoke performances. My first ch hits arrived on that fall, back in 2001.

Sanna

Thanks Sanna,
I don't know what to think one way or the other, but do you think exposure to second hand smoke had anything to do with your on-set of CH?  Just curious...

Thomas

:-? Thomas, I'm a non-smoker too, but when I was a kid almost everyone smoked, so smoke doesn't bother me.  I don't think 2nd hand smoke contributed or some of those smokers should have had ch.  I think it is just the luck of the draw.

Charlotte

wrote on May 30^th, 2008 at 5:37pm:

Thanks Sanna, I don't know what to think one way or the other, but do you think exposure to second hand smoke had anything to do with your on-set of CH?  Just curious...

Thomas,

I just don't know. But I do know that I have - as long as I recall - disliked the smell of smoking. When I was younger, it made me cough, now it can trigger shadows.

But, if it would be second-hand smoking alone, I think I would have had my first hits a lot earlier than I did.

Sanna

I am a non smoker,  but grew up around it.  My mom and several other family members smoke.  Although my home is smoke free now.   I am still around it at times.

I have had ch about 10 yrs .was smoking when it started ,later started a cycle after not having smoked for several months ..I have also quit smoking during a cycle and it never seemed to me to make any difference that was significant in my case .That is just speaking for my experience...
                                                       john

I don't think smoking or not smoking has anything to do with clusters. I started smoking at least 7 years before my first cluster attack. I have smoked before, during and after an attack. It makes no difference to the number of attacks or the pain level.
My take on this subject...............clusterheads have a broken hypothalmus. The hypothalmus, habits and addictions are connected. Smoking is a habit and an additiction. Attend a clusterhead convention or meet-n-greet and count the number of smokers vs non-smokers. There's probably more smokers.

BobG wrote on Jun 7^th, 2008 at 10:24pm:

I don't think smoking or not smoking has anything to do with clusters. I started smoking at least 7 years before my first cluster attack. I have smoked before, during and after an attack. It makes no difference to the number of attacks or the pain level. My take on this subject...............clusterheads have a broken hypothalmus. The hypothalmus, habits and addictions are connected. Smoking is a habit and an additiction. Attend a clusterhead convention or meet-n-greet and count the number of smokers vs non-smokers. There's probably more smokers.

Bingo!....smoking has Nothing to do with CH!

Although, having a smoke after a HA is equal to having one after sex.....LOL  ;D

Hey Bob,
You are certainly entitled to your own opinion.

Do you have any case studies that show in what way the hypothalmus has been affected in CH?  Or, anything to show that smoking is ruled out as a cause or contributer?  You know, it was not so long ago that cigarettes being a cause for lung cancer was challenged.  I bet there was even an argument that a large portion of people that have lung cancer might smoke, but smoking has nothing to do with lung cancer..........people with lung cancer have broken lungs.  

Either way, I started this thread out of my own curiousity into the possible link.  Be it it is just not that interesting or there are not so many non-smokers in these parts, it has not got much response.  I thank everyone for their responses and welcome more, but I think it foolish to just simply dismiss smoking as a possible link to CH.  The fact that there are so many smokers can't just be a coincidence....  

started smoking about 3 yrs prior to ch.  
smoked for 10 yrs
quit 9 yrs ago...(mainly due to the ch link)

still battling.

Maybe you could attend the OUCH convention and talk with Dr. Goadsby.  He is the one who did the PET scans which showed the additional nerve cell growth on the hypothalamus of clusterheads.

I'm with BobG, smoking doesn't cause clusters, the thing which causes clusters also gives us a brain chemistry that causes an addictive personality and leads us to smoke.

Bob P,
I wish I could attend the conference, it just isa not going to happen for me right now.  I would love to hear and see the the information on the hypothalamus.  

As far as us having addictive personalities, it appears most of us have started smoking or have been exposed to second hand smoke prior to on-set of CH.  Is it possible that exposure to the toxins/chemicals in cigarette smoke could have stimulted this additional nerve cell growth on the hypothalamus?  Did Dr. Goadsby have anything to go on for a cause of the additional growth?  

Here's a link to the Goadsby stuff:

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Thanks for the link Bob.  

Just my two cents worth.  It may be coincidence but I started smoking young (13-14).  I think it was self medication for ADHD but I dirgress...  Last October I quit and stayed off cigs for 3 months.  Remembering back, I'm pretty sure I was PF for a long time in that 3 months.

I fell off the wagon in Feb of this year and, lo and behold, my CHs returned.  It might just be coincidence and that PF period was going to happen anyway but I'm not sure.

This last Sunday 6/8/08, I quit again.  I'll try and let you know how it goes.  I'm using Chantix (which I highly recommend) like I did before and am pretty confident of quitting for good.  I'm hopeful the CHs diminish too.  (I only had one CH yesterday - knock wood)

We'll see,

Brett

When many of us grew up, one could not get away from smokers.  I'm not convinced smoking "causes" CH.  But I seem to be doing much better in the five years since I quit.  Not perfect-just much better.  There are many of us who have had that experience.

Maybe the hippothalmic brain defect caused us to take up the habit when we were young and stupid?  I did way dumber things, but smoking was the hardest to kick.

wrote on Jun 8^th, 2008 at 2:59am:

BobG wrote on Jun 7th, 2008 at 10:24pm: I don't think smoking or not smoking has anything to do with clusters. I started smoking at least 7 years before my first cluster attack. I have smoked before, during and after an attack. It makes no difference to the number of attacks or the pain level. My take on this subject...............clusterheads have a broken hypothalmus. The hypothalmus, habits and addictions are connected. Smoking is a habit and an additiction. Attend a clusterhead convention or meet-n-greet and count the number of smokers vs non-smokers. There's probably more smokers. Bingo!....smoking has Nothing to do with CH! Although, having a smoke after a HA is equal to having one after sex.....LOL  ;D

alright........ i think i'm ok......... wheres my camels
we are a smokin' bunch of people, however there are some of us that have never smoked nor do they have any family that smokes. i smoke 2 + packs a day, and yes i know, i'm going to have to quit. a wise man once told me that everybody quits smoking eventually. ;D

BrettK wrote on Jun 10^th, 2008 at 12:54pm:

It may be coincidence but I started smoking young (13-14).  I think it was self medication for ADHD but I dirgress...

No, you were being cool. Just like the rest of us. ;)

There actually is one article on childhood exposure to second hand smoke and cluster headache, but unfortunately even the abstract isn't available online.  That article's information is thus:

Todd D. Rozen MD (2005) Childhood Exposure to Second-Hand Tobacco Smoke and the Development of Cluster Headache
Headache: The Journal of Head and Face Pain 45 (4) , 393–394 doi:10.1111/j.1526-4610.2005.05082_3.x

I have access to this through my university, but I can't post what I don't have permission to copy and paste!  I'll have to reread the article (been awhile!) to sum up what it said on the topic, but I remember finding it interesting at the time.  Can't believe that was over 3 years ago that the article was published - seems like it wasn't all that long ago!

Take care,
Carrie :)

78% of schizophrenics smoke, but I believe that's been proven time and again as a symptom of the disease, not in any way a cause.

I never smoked, was never around smoke when I developed CH.  I did chew tobacco shortly after.  I have found that when feeling shadows tobacco can trigger an all-out hit, but when not shadowing it does nothing.

I think from all of the studies I've read that smoke seems to be a trigger when you're in cycle, but no causality has been established.  Still, it's better to quit, right?

With a disease as painful as this, people cope however they can.  CHers smoke and drink, but I don't know if anyone has studied "which came first," since CH isn't prevalent enough to spawn that kind of large-scale study.  I'd assume that any disease as horrible as this would cause the sufferers to use (and abuse) the only two legal drugs we have.  

BTW - you're right, before the smoking and lung-cancer causality was established, cigarette companies did issue a study that showed that people with lung cancer have irritated lungs, and so they smoke to relieve that irritation.  But with scientific studies, "links" can definitely go either way.