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(Message started by: Ellick on Feb 23rd, 2005, 8:18am)
Title: Commonality
Post by Ellick on Feb 23rd, 2005, 8:18am
Does anyone know of any surveys that have looked for commonality for CH sufferers.
Title: Re: Commonality
Post by floridian on Feb 23rd, 2005, 8:59am
Intense pain.  ;)

More likely than the average joe to have sleep apnea, impaired circulation/PFO heart problems, use tobacco and caffeine, low melatonin, and have a history of head/jaw trauma and/or sinus disease.  

Also all male, highly intelligent, rich, good looking, a sense of humor, athletic, musical, and good with children ;)

Title: Re: Commonality
Post by Redd715 on Feb 23rd, 2005, 9:10am

on 02/23/05 at 08:59:47, floridian wrote:
Also all male, highly intelligent, rich, good looking, a sense of humor, athletic, musical, and good with children ;)


:P
Title: Re: Commonality
Post by LeLimey on Feb 23rd, 2005, 9:14am
GSOH.... nuff said eh Floridian?!!!v  ;)
Title: Re: Commonality
Post by karma on Feb 23rd, 2005, 9:21am

Quote:
Also all male, highly intelligent, rich, good looking, a sense of humor, athletic, musical, and good with children


tru dat [smiley=laugh.gif]
Title: Re: Commonality
Post by Ellick on Feb 23rd, 2005, 9:35am
The 3rd paragraph would explain why I have been so successful over the years.

The other stuff is well recorded. What about what isn't?
Title: Re: Commonality
Post by Sean_C on Feb 23rd, 2005, 10:13am

on 02/23/05 at 08:59:47, floridian wrote:
Intense pain.  ;)

More likely than the average joe to have sleep apnea, impaired circulation/PFO heart problems, use tobacco and caffeine, low melatonin, and have a history of head/jaw trauma and/or sinus disease.  

Also all male, highly intelligent, rich, good looking, a sense of humor, athletic, musical, and good with children ;)


I think that just about sums it up in a nut shell  [smiley=laugh.gif]
Title: Re: Commonality
Post by floridian on Feb 23rd, 2005, 10:14am
On a more serious note,


Quote:
Psychol Rep. 2000 Oct;87(2):555-8.

   Increased prevalence of sensing types in men with cluster headaches.

   Mueller L, Gallahger RM, Steer RA, Ciervo CA. University of Medicine and Dentistry of New Jersey, School of Osteopathic Medicine, Department of Family Medicine, USA.

   To ascertain whether the percentage of men who suffer with cluster headaches and are classified as sensing types according to Jung's theory of psychological types was comparable to the percentage (74%) of Sensing types that was found by Gallagher, et al. among women who experience migraine headaches, the Myers-Briggs Type Indicator was administered to 25 male cluster-headache patients. There were 19 (76%) male Sensing types, and this was comparable to the percentage of Sensing types for migrainous women. The results are discussed as supporting previous contentions that Sensing types may be prone to developing psychosomatic symptoms related to stress.



Quote:
Headache. 1992 Mar;32(3):119-25.      

   Episodic cluster headache. I: Personality and some neuropsychological characteristics in male patients.

   Levi R, Edman GV, Ekbom K, Waldenlind E.  Department of Neurology, Soder Hospital, Stockholm, Sweden.

   The etiology and pathogenesis of cluster headache remain largely unknown. Some previous studies have focused on personality characteristics in cluster headache. However, no consistent personality profile has been found. The present study applied two personality inventories, the Karolinska Scales of Personality (KSP) and the Heart and Lifestyle Type A Measure (HALTAM), that have not previously been used in the context of cluster headache. A correlation has been suggested between left-handedness and early learning difficulties, and cluster headache. Thus, these variables were included and measured by inventory techniques. Forty-nine out of 51 consecutive male patients with episodic cluster headache participated in the present study. As compared to controls, the cluster headache patients were significantly more anxiety-prone (higher scores in the KSP Somatic anxiety and Muscular tension subscales), less successfully socialized (low scores in the KSP Socialization scale), and had a more hostile attitude towards others (higher scores in the HALTAM Hostility scale). No relationships between left-handedness or early learning difficulties, and cluster headache disease were found. The implications of the personality differences for the etiology of cluster headache disease are discussed.
Title: Re: Commonality
Post by Ellick on Feb 23rd, 2005, 11:56am
I was thinking along a more 'nuts and bolts' line. Any survey using analytical theories will engender opposite views 'depending on the relationship with your mother, your waste system and your genitals'. The survey from Sweden looks like an old paradigm psychological kind of study which in effect is have a hunch then set up an experiment or study to prove it.

I was hopeful of something like physiology, health history, metabolism. Haven't thought it through properly yet but it would seem a good idea to have something so maybe we could tell young people who have the disposition what to expect to take Kudzu regularly (for example) Maybe, just maybe, outside of the presentation there is a commonanlity that leads somewhere else. From my own experiences and from reading these boards for a few days it feels like we are fire fighting. Speaking of which my current shadow has just come asking for a incessant walk round the house.
Title: Re: Commonality
Post by floridian on Feb 23rd, 2005, 1:19pm
Serotonin problems.  Activated hypothalamus when in cycle or chronic.  Low levels of choline.  Plus those other things I mentioned between the wit and sarcasm:

More likely than the average joe to have sleep apnea, impaired circulation/PFO heart problems, use tobacco and caffeine, low melatonin, and have a history of head/jaw trauma and/or sinus disease.  


Title: Re: Commonality
Post by Bob P on Feb 23rd, 2005, 2:09pm

Quote:
depending on the relationship with your mother, your waste system and your genitals

No wonder Jonny has clusters!
Title: Re: Commonality
Post by Ellick on Feb 23rd, 2005, 2:22pm
I realise that many people have been involved in looking at why and what CHs are. I think I have probably expressed myself badly here.

I have what I think is a genuine question. My understanding is that some scientific knowledge is available i.e uneven circadian rythm of the hypothalmus, seretonin imbalance, restriction within the carotoid artery, cafeine/ tobacco/ alcohol influences, apnea and so on and that these are commonalities. However no-one knows why CH occur and why some things work for some and not others.

I am new to this site and I do not mean to sound challenging or disrespectful. I have suffered most of my life with bad headaches and since coming on here many things have fallen in to place. I have started to reflect on the whole history of my own condition and began to wonder if there were commonalities within that history that might match other people's i.e. I had some sort of blood problem when I was 11 which took 9 months to resolve. I am very allergic to house dust. I remember often through my childhood that one nasal passage was always blocked but not from a cold and so on. Whilst a neurologist diagnosed CHs 2 years ago, no-one told me what this meant. It is only since I found this wonderful site that I realised what it is.

I get the impression that I have irritated you. If this is the case I am truly sorry. I had no intention of doing so.

I have in mind working out a survey of some sort but wanted to check out if it had been done already. These are only loose thoughts at the moment and may remain so.
Title: Re: Commonality
Post by Tiannia on Feb 23rd, 2005, 2:27pm
Dont take it wrong but this question gets asked a lot here espeically when there is someone new. Not saying that your question is not valid, but you might want to start with a search of Polls. There have been a lot here (granted all unscientific but still a good place to start) on different medical conditions or childhood illnesses, trama, what not.  

Good Luck and while I wish you did not have to be here, glad you found us.

PF Wishes,
-Tia
Title: Re: Commonality
Post by Ellick on Feb 23rd, 2005, 2:35pm
Thankyou Tiannia that is helpful and no I dont take it wrong. Where do I find the poll information?

Ellick.
Title: Re: Commonality
Post by floridian on Feb 23rd, 2005, 2:58pm

on 02/23/05 at 14:22:48, Ellick wrote:
I get the impression that I have irritated you. If this is the case I am truly sorry. I had no intention of doing so.


No, it can be hard to get a straight answer here sometimes - I don't think anyone is irritated with you, just joking around.  Don't take it personally.  You are asking reasonable questions.
Title: Re: Commonality
Post by Ellick on Feb 23rd, 2005, 3:28pm
Thankyou Floridian. I have ideas. Dont want to bore people with replication but do want to keep on asking questions.
Title: Re: Commonality
Post by Sean_C on Feb 23rd, 2005, 3:43pm
My cluster headaches started at age 13 shortly after a severe concussion. I was hit with a pipe that was swung like a baseball bat on my lower right base of skull. I lost vision for three days, not to mention a severe constant headache for two weeks. However I was misdiagnosed for ten years so the relevance is slim in relation to my cluster headache.

Sean.....................
Title: Re: Commonality
Post by Ellick on Feb 23rd, 2005, 4:04pm
I have had 3 quite strong bangs to the head. Ist one was in 1974 (wher I was knocked out and another two in 1979.
I read somewhere that the average time between Head trauma and onset of CHs is 9 years. An osteopath once told me that I had a callousing under the skull which was due to the knocks. At that time a neurologist told me I had migraines. At that time I used to feel as though my right eye was being pushed in towards the centre of my face and I had terrible headaches. They were not like the Chs I get now. The osteopath fixed that problem in 20 minutes. He said he'd make my system work round the problem. I had terrible headaches again in mid 1980s and was diagnosed  as having Cluster migraine and was prescribed cafergot.
I have always had very bad headaches but not the typical CH type until the last ten years. I have gone for osteopathic treatment on many ocassions but it has not stopped an episode of CH. It may seem like Head traumas could be responsible for Ch, but not everyone has that history. My pains are in general rlated to the area where I was knocked.
Title: Re: Commonality
Post by don on Feb 23rd, 2005, 6:08pm
Sure and they all come to the same conclusion:

Everybodies differant except the pain hurts like hell.
Title: Re: Commonality
Post by Ellick on Feb 23rd, 2005, 6:19pm
The one thing we all share. This abominal intense pain.
I am 5 weeks into a cycle. Some days just hurt so much.
Title: Re: Commonality
Post by BobG on Feb 23rd, 2005, 6:20pm
Commonality? About the only thing we have in common is that we all different.

And the only thing we all agree on is it is OK to ask any question you want.

And the answer to your next question is........

Yes. Don does.
Title: Re: Commonality
Post by Ellick on Feb 23rd, 2005, 6:30pm
Thankyou I will. My next question was not about Don!
Title: Re: Commonality
Post by Ellick on Feb 23rd, 2005, 6:52pm
[smiley=mellow.gif]
Title: Re: Commonality
Post by LeLimey on Feb 23rd, 2005, 6:55pm
Your next question wasn't about Don?
Oh well.. that was the only commonality you'll find matey and you blew it!




Made a change from poor old Don though!!  ;)
Title: Re: Commonality
Post by Ellick on Feb 23rd, 2005, 7:20pm
[smiley=beer.gif]
Title: Re: Commonality
Post by TonyG1 on Feb 23rd, 2005, 8:30pm

on 02/23/05 at 19:20:02, Ellick wrote:
[smiley=beer.gif]


Thats a commonality ... :)  No beer while in the CH cycle... <sigh>
Title: Re: Commonality
Post by Ellick on Feb 24th, 2005, 3:49am
I am going to try and work out an historical survey. I will try to get help from a couple of Drs, a stats person, sociologists, psychologist and 'uncle tom cobley' I can probably put an hour in a day, so will be some time before (a few months) it is ready. Would you all be willing? Any help, sugestions will be humbly and gratefully accepted.

Thankyou for your tolerances of a much asked question.

I wish each and everyone of you release from this terrible pain. There has to be an answer somewhere.

Love

Ellick. x
Title: Re: Commonality
Post by Frank_W on Feb 24th, 2005, 10:30pm
Ellick, welcome to the board. Never never stop asking questions. It feels like we're all fumbling around with an intricate lock, and someday, someone's going to ask the right questions and the tumblers will all fall into place, freeing us.

Again, welcome. Sorry you have reason to be here, but glad you found us.

-Frank
Title: Re: Commonality
Post by BlueMeanie on Feb 24th, 2005, 11:07pm
Welcome Ellick,

That's funny you should ask about commonalities. I have been either doing surveys or responding to surveys for over 1 1/2 years now. There is NO commonalities !!!!!

CH'ers are a strange breed all by itself that nothing compares to. No matter what the question, you will get a zillion different answers everytime.

Don't let me stop you though, ask away. I never posted the results from an informal survey of Clusterhead types from awhile back..... guess I better get that finished soon.

Take care. PFDAN
Title: Re: Commonality
Post by Ellick on Feb 25th, 2005, 4:49am
Blue meanies always say No.

I know you are right on the main commonality that we are all different and nothing appears the same, BUT we must and do have something in common in the way the process of CH gets us all.

I am not a DR so would not try to suss it out that way. I do however have some training in sociology and psychology which leads me to look at our histories and see if there is anything there.

It may well be a blind alley like so many others but I have to do something. I want to fight this bastard.

Ellick
Title: Re: Commonality
Post by BarbaraD on Feb 25th, 2005, 6:12am
Ellick,

Since this MB has been here we've run hundreds of surveys trying to find a commonality. So far it's come up nada.

We have changed the theory that WOMEN don't get CH. That's about the only thing we've accomplished with the surveys.

We've even had a few docs in on writing the questions, but we just can't find anything we all have in common. We even tried the longitude and latitude one.

But ask away - who knows there may be a question that hasn't been asked.

Check the archives for the questionaires that have already been run.

About the only thing that's ever come out (and this wasn't on the survey) is that we all have some type of artistic ability (writing, music.....).

Good luck....

Hugs BD
Title: Re: Commonality
Post by floridian on Feb 25th, 2005, 9:45am

on 02/23/05 at 11:56:58, Ellick wrote:
I was thinking along a more 'nuts and bolts' line. Any survey using analytical theories will engender opposite views 'depending on the relationship with your mother, your waste system and your genitals'.


Was thinking about your response to the two psych studies quoted -  while the Jungian stuff is humanistic/intepretive and maybe not medical, I think that measures of anxiety and hostility traits may point to physical or biochemical states of the body.  Asking someone if they have experienced panic attacks or if they obsessively wash their hands is not linked to toilet training and the oedipus complex, except in the movies.  There is a clear role for neurotransmitters in most of the modern behavior assessment scales, although attitudes and environment play a role and complicate things.
Title: Re: Commonality
Post by TomM on Feb 25th, 2005, 10:04am

on 02/25/05 at 06:12:57, BarbaraD wrote:
We have changed the theory that WOMEN don't get CH. That's about the only thing we've accomplished with the surveys.
Barb--you've been hanging out with Don & Bob too much!
LOL....sorta.

Everyone on my mother's side of the family gets either, very bad HA's or Migranes; EVERYONE. Me, I'm special...the only one with CH.  :)
TomM
Title: Re: Commonality
Post by Ellick on Feb 25th, 2005, 12:14pm

on 02/25/05 at 09:45:52, floridian wrote:
Was thinking about your response to the two psych studies quoted -  while the Jungian stuff is humanistic/intepretive and maybe not medical, I think that measures of anxiety and hostility traits may point to physical or biochemical states of the body.  Asking someone if they have experienced panic attacks or if they obsessively wash their hands is not linked to toilet training and the oedipus complex, except in the movies.  There is a clear role for neurotransmitters in most of the modern behavior assessment scales, although attitudes and environment play a role and complicate things.


I agree and disagree. Although my response was  flippant, I think from my own experience and knowledge that Freud would most likely have reached a conclusion that panic attacks and either or obssessive behaviour could be linked to oedipal or anal stages. Yung might have seen it as Social constructs that were transmuted into a collective unconscious that while we obeyed would not have been comfortable. Ideas which perhaps later influenced Lang's work on schizophrenia. Alternatively Perls would have concluded that Gestalt was the pattern from which to observe.
Given all of the above I agree that there is a clear role in the study of the impact of neuro transmitters, which I think needs to include genetics , learned behaviour, environment and social groups. I think it is the endless nature versus nuture debate. I also think  if you are in the position of analysing, it can be chicken and egg because for example if you know you are going to experience shed loads of pain at intolerable levels it is most likely going to increase your presentation of anxiety. Catcher 22 sane or insane.

As you may have gathered, I think any commonality, however reached or found may take us a step nearer to seeing something underneath. I am not averse to any thread, I just have a tendency to be hunch driven and run down blind alleys a lot.

Incidentally,have you seen much information in relation to nasal mucous membranes, their inflammation and secretions correlated to antecedents, pain episode and pain cessation in CH. Today my hunches have driven me right up my nose! Good job Freud is in the first paragraph! ;)

Best wishes

Ellick.
Title: Re: Commonality
Post by Tiannia on Feb 25th, 2005, 12:33pm

on 02/25/05 at 12:14:29, Ellick wrote:
Given all of the above I agree that there is a clear role in the study of the impact of neuro transmitters, which I think needs to include genetics , learned behaviour, environment and social groups. I think it is the endless nature versus nuture debate.


The issues that you will have in the nature -vs- nurture debate is how many people are misdiagnosed for so long... Getting a clear idea of when CH first started is scetchy at best for many people. Also, why are there some people who have been having CH since a young child, others since adolesents, still others in their 20's, or like me who in my early 30's ended up with clusters and never had them before.  Others have them stop for no appearant reason and how can that be nurture....  There are endless possibilities in debating this theory.

Please ask your questions, but it seems that you are looking in a lot of directions at once. You can never see a clear yes or no unleass you start somewhere.  You will get a hazy overview which will tell you nothing.  (while I sucked at the clinical side of psych, I do know enough and used enough counseling styles to know that you cant start everywhere at once to discover a single truth.)
Title: Re: Commonality
Post by Ellick on Feb 25th, 2005, 12:46pm

on 02/25/05 at 12:33:47, Tiannia wrote:
The issues that you will have in the nature -vs- nurture debate is how many people are misdiagnosed for so long... Getting a clear idea of when CH first started is scetchy at best for many people. Also, why are there some people who have been having CH since a young child, others since adolesents, still others in their 20's, or like me who in my early 30's ended up with clusters and never had them before.  Others have them stop for no appearant reason and how can that be nurture....  There are endless possibilities in debating this theory.

Please ask your questions, but it seems that you are looking in a lot of directions at once. You can never see a clear yes or no unleass you start somewhere.  You will get a hazy overview which will tell you nothing.  (while I sucked at the clinical side of psych, I do know enough and used enough counseling styles to know that you cant start everywhere at once to discover a single truth.)


Thanks I think you are right. It is probably as a result of having a rush of energy finding I wasn't alone after such along time of being so.
Hopefully I will achieve a better focus.

ET
Title: Re: Commonality
Post by floridian on Feb 25th, 2005, 1:30pm

on 02/25/05 at 12:14:29, Ellick wrote:
Incidentally,have you seen much information in relation to nasal mucous membranes, their inflammation and secretions correlated to antecedents, pain episode and pain cessation in CH. Today my hunches have driven me right up my nose! Good job Freud is in the first paragraph! ;)

Best wishes

Ellick.


There is some research on sinuses - my take is that sinus problems are more common in clusterheads than the general public, and that sinus problems can aggravate clusters.  They do not explain clusters.
Title: Re: Commonality
Post by seasonalboomer on Feb 25th, 2005, 1:46pm

The only trigger that I have that I haven't seen very prevalent is the aroma trigger. There are certain blooming shrubs (usually early spring in south) that have a sharp floral smell, and if I go by these (usually when out walking or running) and get a whiff through my nose during a cycle, I can feel a CH start. There's a huge bush at the end of our road that has gotten the name "the BAD bush" for its noxious effects on me. Nothing political in that statement - really.

We also this wonderfully fragrant vine in our yard that one time, outside of a cycle, thrust me directly into a Kip 6-7. We don't have that vine anymore. With the right conditions (humid and still) honeysuckle flowers can do the same thing.
Title: Re: Commonality
Post by TomM on Feb 25th, 2005, 2:19pm

on 02/25/05 at 13:30:58, floridian wrote:
There is some research on sinuses - my take is that sinus problems are more common in clusterheads than the general public, and that sinus problems can aggravate clusters.  They do not explain clusters.

I do not have any sinus issues but would like to read the research on sinuses to which you refer. Please e-mail me.
TomM
Title: Re: Commonality
Post by Frank_W on Feb 25th, 2005, 2:29pm

on 02/25/05 at 13:46:48, seasonalboomer wrote:
The only trigger that I have that I haven't seen very prevalent is the aroma trigger. There are certain blooming shrubs (usually early spring in south) that have a sharp floral smell, and if I go by these (usually when out walking or running) and get a whiff through my nose during a cycle, I can feel a CH start. There's a huge bush at the end of our road that has gotten the name "the BAD bush" for its noxious effects on me. Nothing political in that statement - really.

We also this wonderfully fragrant vine in our yard that one time, outside of a cycle, thrust me directly into a Kip 6-7. We don't have that vine anymore. With the right conditions (humid and still) honeysuckle flowers can do the same thing.


Very interesting: Where we used to live, I was getting hit every autumn. The treeline at the back of our property was FULL of honeysuckle, jasmine, and blackberry vines, and I spent quite a lot of time chopping that stuff down.

We moved from that house to the other end of town, and our new place has none of those plants/vines. The year that we moved, we moved in October, and I didn't get an autumn cycle. (Which used to ordinarily hit in September) Instead, I got hit last February. So far, this year, with the exception of a couple of shadows over the past few days, I have yet to go into cycle at all. Very odd....
Title: Re: Commonality
Post by TomM on Feb 25th, 2005, 2:44pm
Hey Frank. My cycle from this fall did not hit until a few weeks ago.
Maybe the shifting of the earth's orbit b/c of the tsunami is to blame?   :)
Smells trigger a CH when I am in cycle--garlic and olive oil.
Alcohol triggers a CH when I am in cycle--Corona® or Yuengling®.  :'(
http://www.yuengling.com/images/nav_logo.gif

Sounds trigger a CH when I am in cycle--squeaky floors.

TomM
Title: Re: Commonality
Post by seasonalboomer on Feb 25th, 2005, 2:45pm
Sad thing was that when the landscape architect asked if we had any particular "wants" when she was designing our back yard. (This was prior to drawing this personal correlation). My answer was, "Let's just make sure that we use lots or wonderful FRAGRANT, flowering shrubs, boxwoods are boring". :P
Title: Re: Commonality
Post by Ellick on Feb 26th, 2005, 5:43am
I dont have any experience of aroma setting off an attack. I do have strong allergic reaction to housedust mite. I often have short high intense sneezing fits. I do not have them during acluster cycle. This sneezing is often unexplainable and can occur anywhere. I cannot bear being in front of fans they tend to cause my nasal passage to block. To much household heat does the same.

I have noticed that when I and being hit my nasal passage block up like they are squeezed shut. When an attack in lessening I often get arunny nose. I get this also from a walk in the cold air or from exercise.

Ellick
Title: Re: Commonality
Post by yikes-another-one on Feb 26th, 2005, 1:44pm
must remember how many docotors reccommend removing teeth to alleviate the pain....

andhow many were scheduled to have
sinus surgery....

no one ever tests for bacterial infections
that crossed the blood-brain-barrier.

wouldn't that be a great place to start???

Just like the UFO phenom....we all have our theories,
but we just got to get the scientists
to get busy and start testing all the hypothesis.

How many would be willing to volenteer?  All of us
how many doctors want to give up their money
and time and energy to search for us?  Nada, None.

so we remain at square one.
Rocking/dancing and moaning....

this is one of the best and exciting boards.
because we are raising awareness and support funds
and gathering....

What you propose is awesome.
but getting it done.....
that is what will really be amazing.

waiting with baited breath....
Title: Re: Commonality
Post by floridian on Feb 27th, 2005, 12:45am

on 02/25/05 at 14:19:15, TomM wrote:
I do not have any sinus issues but would like to read the research on sinuses to which you refer. Please e-mail me.
TomM



Here's a draft article on sinuses and CH:

http://med-owl.com/clusterheadaches/tiki-index.php?page=Sinus+Problems

Still rough, but it gives an overview of the surgery studies.
Title: Re: Commonality
Post by Ellick on Feb 27th, 2005, 7:47am

on 02/27/05 at 00:45:51, floridian wrote:
Here's a draft article on sinuses and CH:

http://med-owl.com/clusterheadaches/tiki-index.php?page=Sinus+Problems

Still rough, but it gives an overview of the surgery studies.


Hi Floridian,

Read this and found it very interesting. Thankyou. I had sinus surgery which basically cut away inflamed tissue, straightened out a few bits and removed several nasal polyps. Hasn't stopped the CHs but improved my ability to breathe nasally.
I have always felt there is a link.
I have always had alergic rhinitis linked to allergy to house dust mite and some type of grass (can't remember which one).
I have had a bad couple of days. Today started having familiar sneezing fits and am definitely feeling a tapering effect. Strangely after one 'fit' I had a fleeting onset of CH in the opposite side to this year's attack. Since this I have definitely felt better, even thought about doing some work and was able to cook breakfast this morning.
My nasal passages are slightly inflamed in the typical fashion of allergic rhinitis,slightly restricted and runny.

I am also on verapermil and trying not to use Triptans (one in 48 hrs). I am using short bursts of O2 throughout the day. I read on the posts (cannot remember where) that someone always knew the end of a cycle because it began with a cold.

Just a thought but it is possible that a viral/bacterial link is possible linked through the sinus even though it may not present as sinusitis in everyone because some immune systems get to it better. Is it possible this could trigger a reaction from the Hypothalmus.

Garbled, I'm sorry. a bit elated at the thought that the end of this cycle might be in sight.

I am going to take the psilocybin route as a prevent at the end of this year, or soon as a treatment if this cycle continues. It grows wild in England and is widely available in Sept, Oct annually and I believe street druggies can usually get hold of the dried stuff.

Ellick.
Title: Re: Commonality
Post by godsjoy777 on Feb 27th, 2005, 4:27pm
OK.....Here is my history.....

At 10 years of age.....Knocked out in a go cart accident...

Had one bad HA that I would say was equivalent to a cluster when I was about 12 yrs old after being in the sun all day long.....maybe sun poisoning....

Age 35....graves disease....Had to chemically kill my Thyroid and start on the synthetic kind a year later.

Age 36.....Endo surgery....retreat of old...old root canal...up underneath the gingival flap.....yuck!

Later that year.....15 year ago.....my first cluster cycle starts.......OUCH!!!!!!!! Nighttime clusters....eye tearing etc......No diagnosis 'until the next year.....

The rest is history.....The last MRI and MRA I had a couple of months ago showed acute sinisitis.....You don't always know you have it.....

My cycles started at a couple of weeks long to a couple of months to 3 months for several years to last years 5 month long ordeal as I took verapamil.....yuck!

and this year I'm in my 6th month and counting....crap!

Hope it helps you figure anything out.....

Karen
Title: Re: Commonality
Post by LeeS on Feb 28th, 2005, 4:13am

on 02/27/05 at 07:47:26, Ellick wrote:
I am going to take the psilocybin route as a prevent at the end of this year, or soon as a treatment if this cycle continues. It grows wild in England and is widely available in Sept, Oct annually and I believe street druggies can usually get hold of the dried stuff.

Ellick.


Good luck Ellick.  Please be careful with our 'street druggies' though. There are however many reputable retailers available (whilst it is still legal of course). PM me if you would like further details.

-Lee
Title: Re: Commonality
Post by rbmb on Feb 28th, 2005, 6:44pm
When I was being diagnosed for CHs some years ago, I had an MRI. They told me it "Looked pretty good", but they noted some inflamation or enlargement of the nasal cavities (I don't remember their exact words). I assumed that was the result of me being a smoker for many years (and I still believe that is the cause).
    There seems to be a disproportionate number of smokers among CH sufferers and also a large number of people with sinus problems (many of which could be attributed to smoking if the person with sinus problems is indeed a smoker) Could there be a cause and effect relationship with smoking, sinus problems and CH? The fact that some people with CH have never smoked would seem to shoot down that idea. On the other hand, many people here have reported having had a head injury at some point in their lives(but not everyone), so it would appear that there could be multiple factors that can lead to CH. Or that Ch is only one symtom of some underlying issue and that smoking, prior head injuries, low specific chemical levels, etc. have nothing to do with it. The analogy about people on this site fumbling with a combination lock trying to find the combination is a good one.
                            Rich
Title: Re: Commonality
Post by Frank_W on Feb 28th, 2005, 8:28pm
I think Dr. Goadsby is on the right track in his research in England. His theory seems to be that it has more to do with the way our brains are put together. I can't remember the way he said it exactly, but here's a link to a copy of the video on-line:

http://www.kdlltd.com/clusters_low.wmv
Title: Re: Commonality
Post by godsjoy777 on Feb 28th, 2005, 9:25pm
I don't smoke....only tried it a bit when a teenager and when I drank heavily shortly thereafter....but....I haven't smoked in decades......nor drank very much at all....a glass of wine once in a very long while....especially long now that the clusters are in such a long season....I don't often "feel" like I have sinusitis......BUT....my MRI and MRA showed very acute sinisitis.....who knew?

I'm definately not male, don't smoke....BUT...I DO have hazel eyes.....a comonality.....
Title: Re: Commonality
Post by Kim Y. on Mar 1st, 2005, 1:04am
When I got my first glimps of the beast I was studying in LPN school.  I would go to bed every night at 10pm but was back up anywhere from 3-4 am this sometimes included the weekends.  I started each morning with coffee.  Yah I know that is bad but getting up that early I needed it so that I could study.  First I thought I was getting a tension HA because my neck was driving my crazy and when I took everything under the sun OTC and nothing worked.  I have to admit I couldn't put two and two about the coffee and my HA or the lack of sleep that couldn't be prevented.

Unfortunatly the second go round I was drinking coffee but nothing like I did in school.  Of course I am working so if anything this is a different stress then school.  

For years I have developed the worst allergies to Cigarete smoke.  But never was a smoker myself just had relatives that do.  So if anything mine was 2nd hand.  Not sure if that could have built up in my system of the years.  

Don't know if that helps.
Title: Re: Commonality
Post by vig on Mar 1st, 2005, 9:48am
It may be that there are many different routes to clusterland...
Maybe there's no single commonality, maybe it'll take two or three of the traits (or 5 or 6!) , like head injury, smoking, or sinus allergies, for instance... nobody said this has to have a single, simple solution.

The only real commonality we all have is that we are all humans... who know extreme pain
Title: Re: Commonality
Post by Frank_W on Mar 1st, 2005, 11:17am
Hazel seems to be a common eye color among sufferers. Mine are gray. I also find driving on rainy nights to be sheer torture from oncoming headlights. FWIW...
Title: Re: Commonality
Post by thudpucker on Mar 1st, 2005, 1:38pm

on 03/01/05 at 11:17:30, Frank_W wrote:
I also find driving on rainy nights to be sheer torture from oncoming headlights. FWIW...

Hm.  I can see way better than most people under low light conditions.  I find driving at night tedious due not just to oncoming headlights or headlights reflected in the rearview mirror but also to today's huge taillights and stop lights right at eye level.  That tedium becomes torture on rainy nights.

I finally decided that my good low-light vision was probably due to irises that didn't contract as much as most people's do (I don't go out without sunglasses during the day, either).  It's possible that a sharp glint of reflected sunlight--such as from an automobile window, mirror, or chrome trim--can trigger an optical migraine syndrome (which otherwise seem to come and go with absolutely no rhyme or reason), but I've never had a glint of light trigger a CH.

Of course, when I'm having a CH, any light is intolerable, the brighter, the worse.

thudpucker
Title: Re: Commonality
Post by crazy_mj on Mar 2nd, 2005, 8:32pm
Before I was diagnosed, I went to an eye doctor thinking that it was my vision causing the monsters.  I was told that the nerves in my eyes were closer than the average persons, and was diagnosed with Photophobia.
Title: Re: Commonality
Post by SangReal on Mar 11th, 2005, 3:48am
Like everybody else, I would describe myself as artistic, creative...but then again, who doesn't?  I mean, can you imagine calling yourself uncreative?  So I don't know about that one.

On the other hand, I am sensitive to smells: specifically, the smell of cigarette smoke (even on a person's clothing) or the smell of alcohol on someone's breath are triggers.  I have noticed that drinking coffee makes me more likely to have an attack, but not drinking Coke or Dr. Pepper, so it's not caffeine related, at least for me.  What is it about coffee, then?  Trace elements?

And I am extremely sensitive to light at nighttime when driving.  It used to trigger my migraines before I "upgraded"  ::) to CHs.  Now light bothers me, but doesn't bring on a CH and doesn't bother me more than usual during one - ditto for sound.

My eyes are blue.  Very blue.  So no commonalities there.  Do CH sufferers have higher IQs?  Mine is 167.  I'm a genius and a member of MENSA.

Other medical problems I have: hypothyroidism, Tourette's syndrome, and seasonal affective disorder (winter depression at a clinically significant level).  No sinus problems.  I don't smoke or drink, and I never have.  But I did have a head trauma in December 2002, although MRIs and head CTs revealed no abnormalities.

Family history of mental illness, substance addiction, lung cancer, and diabetes.

If we find the commonality, we can find the cure.  Keep looking, people.

<3 Mary
Title: Re: Commonality
Post by Frank_W on Mar 11th, 2005, 7:56am

on 03/11/05 at 03:48:08, SangReal wrote:

My eyes are blue.  Very blue.  So no commonalities there.  Do CH sufferers have higher IQs?  Mine is 167.  I'm a genius and a member of MENSA.


I don't know if I'm a genius or not, but I tested out at 163 and am also a member of MENSA.
Title: Re: Commonality
Post by TomM on Mar 11th, 2005, 9:28am

on 03/11/05 at 07:56:49, Frank_W wrote:
I don't know if I'm a genius or not, but I tested out at 163 and am also a member of MENSA.

Pahlease! I think that's a stretch, Frank. Yours is in the neighborhood of 175; whereas mine is a solid 52 +/- .5.
Hmmm...my last test was 148...or was that my cholesterol?? I get them confused.  [smiley=huh.gif]

Kidding aside, I personally think IQ has NOTHING to do with this. I'm @ 126 and so frickin' what. My eyes are brown; dark brown. I have freckles that blend during the sun of summer that give me a nice wheat bread tan.

And Frank...I've had a very unusual, short, flaky cycle that I think is ending.  :-X
TomM
Title: Re: Commonality
Post by Frank_W on Mar 11th, 2005, 9:50am
Outstanding, Tom. I'm glad your cycle appears to be ending. Mine has been very unusual too.... I don't know what, if anything, this heralds. I'm not looking a gift horse in the mouth, though. I'm very grateful. PFDAN's to you, my friend.
Title: Re: Commonality
Post by Ellick on Mar 11th, 2005, 5:02pm
What if the commonality is an infection that has different reactions from different people and that this infection is as yet undetected. This infection could trigger the Hypothalmus or pineal gland so the outcome is the same. The infection can lay dormant for months or years at a time or become reacvtivated over a period of years. The infection could alter the way our neuron system worked so we have different orders of thinking and behaving.
What if the alkaloids in LSD and or psilocybin alter or kill off this infection.
I have been reading about this since.
Part of my reading has found that many people can have fungal infections of the sinuses but only a proportion display any symptoms. The ones that do have acute or chronic sinusitis maybe have an immune system thats a tad more feisty. One article I read stated that out of 220 odd sinus sufferers 212 were found to have fungal infection.

Some random thoughts I had  a week or so back as I was dropping of to sleep.

What does anyone else think of this?

ET.x
Title: Re: Commonality
Post by Redd715 on Mar 11th, 2005, 6:19pm
I'm not saying it is or isn't a factor here....BUT

Years back, one of the Dx's I had was that I was severly allergic to mold, and this was found out by a huge swab shoved up my nostrils.  My (then) husband worked in the waste water treatment plant at the mill all day long and he'd come home daily just soaked in the stench of mold.  

We've been divorced for 10 years now....and I have no contact with his mold soaked duds but still have the HA's.

[smiley=huh.gif]


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