It seems that the overwhelming majority of CH sufferers complain on one-sided events.  In trying to connect a dot or two, I keep running into a nagging question, namely:

     If the hypothalamus is intimately involved in the CH cycle (and it sure seems to be), then what mechanism might explain the unilateral nature of the disorder?

Anybody able to help me out with this?  Thanks,

TJ

This is as puzzling as the fact that whether we are right handed or left, has no relation to our pain side.

Don

Thanks for the feedback.  Your 'handedness' comment caught me off-guard.  I did not know this....and hadn't even considered it.  It is for this reason that I have decided to enlist the help of CHers to help raise Qs in a 'brainstorming' sort of way to revisit the origin issue(s).  I'm perfectly willing to suffer the "we've been through all of this before...with minds greater than yours" comments that most likely will come.  Still, as one of the 'new guys' (only a few years and a dozen or so clusters), I may speak for others who have not yet the experience of so many like yourself. 

In a broadbrushed concept, it seems that human disorders fall broadly into one of a couple of categories:  deficits or disorders (though I've got to make those categories crisper).  Some people are deficient in, say, nutrients.  That may lead to something like nervous system disorders.  It seems logical that, at some point, the deficiency, even if corrected, will not provide the outcome that it may have produced earlier in the disorder.  In other people, they may have the misfortune of having been born without a critical component, leading to incomplete, altered, or misguided function.  Still others may suffer from trauma induced defects.  This may account for why CHers, including me, focus heavily on one approach over another. 

I have not seen a group of sufferers more willing to empathize and connect with other sufferers than CH sufferers and advocates.  I am abundantly thankful for you all, most of all...my spouse. 

I'm one who believes we should never stop poking and asking to try and find that one common "factor." Check out a post in the meds section, "123 pain free days and I think I know why." Batch is like you, always poking and looking, and started a theory about Vitamin D-3 deficiencies, and also questioned the effect your arterial PH levels have on CH. This has morphed into the "Batch Regimen" that's providing a LOT of relief to a lot of people.

Joe

I experience them on both sides; 2 months out of the year on one side and then 2 months out of the year on another, then 1 year of remission.  I've had a rare time or two where during one of those 2 months it switched sides with each headache through the whole cycle.  Very crazy how they follow such patterns. 

Hey Family,

Always on the left side. I am right handed.

Safe at home...
Coach Bill

OK, thanks all.  I'll read more.  Thanks for the direction, Joe.  Batch may be on to something in the D.  Took almost forever, but conventional medicine is looking into the link between inflammation and disease/disorders.  It's not so surprising, really.  Folks have been focused on anti-inflammatory meds and remedies for a long, long time.  Now there is intellectual curiosity about the way the body's response to inflammation may impact other systems.  Lots of interest in blood vessels and the inflammatory impact. 

So, right or left handed, sounds as if there isn't much correlation there. 

Thanks again.  Quieter days to all.

TJ

Billie wrote on Jul 14^th, 2012 at 2:36pm:

I experience them on both sides; 2 months out of the year on one side and then 2 months out of the year on another, then 1 year of remission.  I've had a rare time or two where during one of those 2 months it switched sides with each headache through the whole cycle.  Very crazy how they follow such patterns.

Interesting.  I don't recall reading any other such scenarios.  Must drive you crazy.  I am in my first episode of back-to-back clusters, with only one week between.  Typically 9-14 months.  Take care,

TJ

mine switch sides all the time never in the same day or during. My clusters are kind of strange i will have have them for about 3 weeks straight they will be on the right side for about 2 weeks switch to the left side for a week then go in to remission for about 3-4 days then start all over again.

lydia nichole wrote on Jul 16^th, 2012 at 10:26am:

mine switch sides all the time never in the same day or during. My clusters are kind of strange i will have have them for about 3 weeks straight they will be on the right side for about 2 weeks switch to the left side for a week then go in to remission for about 3-4 days then start all over again.

Gads, so much to process.  I'm re-reading some physiology and finding that it's as confusing as it was the first time.  I really appreciate the feedback, as it stimulates my thinking in many ways that I haven't thought of.  I'm still trying to figure out why the darned thing is unilateral.  The fact that it switches sides in so many of us just makes me more curious.  Here's to a long refractory period!  Take care,
TJ

Always on the left, any kind of headache I've ever gotten, it was on the left above my eye.  When I was younger, I thought I must have a tumor because it's always in that same spot.  Now I'm older and I know better, but I'm still tempted to ask if they can just "you know know, take that part of my brain out".  And I'm right-handed.

I believe Doc Goadsby's research showed the deformity of the hypothalamus (the extra bundle of nerve fibers) to be on the back of the hypo and on the same side as the clusters.

coach_bill wrote on Jul 14^th, 2012 at 8:55pm:

Hey Family, Always on the left side. I am right handed. Safe at home... Coach Bill

Same here...

My CHer....right handed right side....always...17 years, last 4 chronic

Bob P wrote on Jul 17^th, 2012 at 7:53am:

I believe Doc Goadsby's research showed the deformity of the hypothalamus (the extra bundle of nerve fibers) to be on the back of the hypo and on the same side as the clusters.

Thanks, Bob,

I will definitely look into this work.  I am new around here and haven't seen all of this site.  It's a bit akin to a mansion.  Just when I get 'wowed', I round a corner and get impressed again. 

TJ

Here ya go:

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

I am grateful for the link.  Quite plausible.  Are you aware of other follow-up studies (this one was 13 years ago)?  I am beginning to be less bashful about asking, even though I'm so old that we were always chided to do our own work.  Gads, remember going to the library and using a card catalog?  My take-away statement?

     "This complete correlation of functional and structural abnormality is striking."

Indeed. 

OK, gang, I still can't find a follow-up study on this significant observation by Dr. Goadsby.  I am not technologically savvy, but something ought to show up.  Anybody?

This extra gray matter sort of reminds me of a cheloid.  Still, it doesn't explain the alternating presentation that some show. Hmmm.....so much to learn.

Check out the link below. At the end is the PET scan images.

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

Don

Has anyone ever had bilateral CHs?

My ch's are always the same (tho the actual time periods aren't certain). They begin on the left side until they reach about 8.... but as the frequency and intensity picks up they move to the right side and go to the steady 10's and 9's. Then, just as in the beginning, they move back to the left and they begin to taper over a period of weeks back down to the 7,6,5, etc. until the cycle is, at last, over. It is so predictable that I keep watch for a "left side" just so I know my cycle is winding down. It wasn't always like this, but has been for the last ten years I'd say. I still ain't even got to the right side yet in my current cycle. Bummer

Well, this would appear to be a less common presentation.  Begin one side, switch to the other, then return to the original side for the wind-down.  THAT is a curious finding (to me).

I know that our findings are, by definition, anecdotal.  Still, I cannot think that because of that, the findings are not helpful.  Thanks for the reply.  I'm actually pondering something and these inputs help me. 

I'll be keeping fingers crossed that you have the left side show up soon.

12 years episodic and right sided only. One night (Oct 2000) a bi-lateral cluster. From then on, left sided and chronic with only a very rare right sided attack. Go figure ?? No ryme or reason


I4B

Imitrex4Breakfast wrote on Aug 4^th, 2012 at 11:50pm:

12 years episodic and right sided only. One night (Oct 2000) a bi-lateral cluster. From then on, left sided and chronic with only a very rare right sided attack. Go figure ?? No ryme or reason I4B

Hey, I4B.  This is a significant event that you recall.  I wish I knew what the heck the significance is, but I find it so interesting that I wrote it on my "super special findings log".  My guess is that each of us has spent at least some time trying to make sense of the bugger.  So many similarities, yet so many variations.  Of all the info that I've learned from the sources that I've been able to locate, this one thing seems most certain:  there is a preponderance of evidence (anecdotal as it may be) that there is a vascular involvement in CH. 

Profound, huh? 

Now, why would your beast have treated you the way it did?  Take care,

TJ

Hello. New here, new to CH diagnosis, not new to the headaches.

Just thought I'd share mine- always left side, always. I'm right handed. I've also always experienced ear aches/infections in my left ear and sinus stuff is worse on the left.

Thanks, librarygirl.  I've never considered whether other head maladies my be connected in some way.  It's written in the log.  Thanks again, and welcome to the site!
TJ

I've been belted bi-laterally a few times as a right-cycle is finishing with a left-cycle starting simultaneously.

Can't reccommend it as a hobby.

AussieBrian wrote on Aug 6^th, 2012 at 11:21pm:

I've been belted bi-laterally a few times as a right-cycle is finishing with a left-cycle starting simultaneously. Can't reccommend it as a hobby.

Thanks, AB.  If I understand correctly, you've experienced more than one episode of bi-lateral CH, though it seems that the event was transitional.  Did you have the bilateral event for a day?  More?  You and librarygirl are the first to say that you've had bilateral buggers.  I'm trying to put some info together.  Thanks (much) for the help.

BTW, is that a 7-Up in your hand?  Nah, didn't think so. 

TJ

That's right, TJ. Individual hits, one each side, at the same time. Does unusual things to your sense of balance I can promise. Worstest was about three days as one cycle finished as another was cranking up and I ended up sea-sick on dry land.

Incidentally, I just googled 7-Up and you're right about being wrong.

OK, anyone else find it interesting that so few people that we trust have bilateral CHs?  Yeah, didn't think so.  I've been developing a paradigm that says that there are many ways the CH can be initiated; that there is essentially a 'bus route' that keeps circling with a great number of stops.  We keep trying to figure a way to get the bus off the circuitous route, but there are a number of 'spurs' that allow the bus to get on the route.  That's the real deal.  Once the bus is underway on the circle route, the only thing we can think about is derailing it.  Not a bad thing, but the best thing is to figure out what gets the damn bus started to begin with. Ah....there's the rub.  There are many things that seem to be identifiable as contributors or instigators. So, I am issuing this challenge, and it's because I have a hell of a lot more faith in you people than in the people I am told I should have faith in:

What do you feel absolutely confident in when it comes to defining this beast.  I mean, absolutely.  I believe we can come up with a list that will drive intellectual curiosity, that will take interest in CH to the next level.  I believe that we can create a number of statements that truly define what the CH experience is.  I encourage you to think critically about the single sentence that you will contribute.    I believe that we will end up with about 10-12 concise statements that will motivate and inspire a renewed interest in the study of CH.  I will attempt to start the dialogue, full in the knowledge that this will be a tough task. 

Here's my initial thought:

"there is a relationship between CH and blood flow to the brain". 

I fully anticipate improvements in the statement and in those to follow.  Please....don't be reluctant to contribute.  After all, if it is to be, it is up to us. 

Stay well, friends,

TJ