Please give this a read and consider whether we should start using this approach to helping new sufferers.
========================

PREMATURE ABORTIVE TREATMENT

We are all drawn here to learn and, to a great extent, to share our experiences with coping with CH. The urge to offer relief to people, most especially to the new souls who in the great stress of experiencing the unknown, pushes us to offer our best ideas/experiences on understanding and coping.

With success comes appreciation and inner satisfaction that we have been of benefit.

The concern I'm raising is that we can mislead by offering a solution to the pain which, because it works, may draw the suffer away from exams which would reveal a more serious medical condition. Cluster-LIKE headaches (definition below) often respond to the abortives which we find effective. The subtle clue that this may not be CH is that the action of the abortive is briefer and recurrence of the attack develops more quickly. (Of course, the new sufferer does not have the experience to make this judgment and is primarily in love with the new found relief.)

Very directly: I'm suggesting that we do not recommend specific abortives unless we know that a formal diagnosis of CH has been made. Masking a more serious problem is a greater "sin" than not offering immediate relief to headache.


Cephalalgia. 2010 Apr;30(4):399-412. Epub 2010 Feb 15.

Cluster-like headache. A comprehensive reappraisal.
Mainardi F, Trucco M, Maggioni F, Palestini C, Dainese F, Zanchin G.

Headache Centre, Neurological Division, SS. Giovanni e Paolo Hospital, Venice, Italy. federico.mainardi@ulss12.ve.it

Abstract
Among the primary headaches, cluster headache (CH) presents very particular features allowing a relatively easy diagnosis based on criteria listed in Chapter 3 of the International Classification of Headache Disorders (ICHD-II). However, as in all primary headaches, possible underlying causal conditions must be excluded to rule out a secondary cluster-like headache (CLH). THE OBSERVATION OF SOME CASES WITH CLINICAL FEATURES MIMICKING PRIMARY CH, BUT OF SECONDARY ORIGIN, led us to perform an extended review of CLH reports in the literature. We identified 156 CLH cases published from 1975 to 2008. THE MORE FREQUENT PATHOLOGIES IN ASSOCIATION WITH CLH WERE THE VASCULAR ONES (38.5%, N = 57), FOLLOWED BY TUMOURS (25.7%, N = 38) AND INFLAMMATORY INFECTIOUS DISEASES (13.5%, N = 20). Eighty were excluded from further analysis, because of inadequate information. The remaining 76 were divided into two groups: those that satisfied the ICHD-II diagnostic criteria for CH, 'fulfilling' group (F), n = 38; and those with a symptomatology in disagreement with one or more ICHD-II criteria, 'not fulfilling' group (NF), n = 38. Among the aims of this study was the possible identification of clinical features leading to the suspicion of a symptomatic origin. In the differential diagnosis with CH, red flags resulted both for F and NF, older age at onset; for NF, abnormal neurological/general examination (73.6%), duration (34.2%), frequency (15.8%) and localization (10.5%) of the attacks.

WE STRESS THE FACT THAT, ON FIRST OBSERVATION, 50% OF CLH PRESENTED AS F CASES, PERFECTLY MIMICKING CH. THEREFORE, THE IMPORTANCE OF ACCURATE, CLINICAL EVALUATION AND OF NEUROIMAGING CANNOT BE OVERESTIMATED.

PMID: 19735480 [PubMed]

A very complex issue to wrestle with.

On the one hand we're in suce a hurry to point people to the relief that we've experienced.

On the other hand, what if we are helping them to mask a more serious issue with a temporary fix?

A tough issue indeed.

Joe

Thought provoking.  Good post.

Jerry

So is DJ gonna require a prescription from their Doctor before joining.

      Potter

Bob Johnson wrote on Oct 9^th, 2010 at 10:17am:

Cluster-like headache. A comprehensive reappraisal. Abstract THE IMPORTANCE OF ACCURATE, CLINICAL EVALUATION AND OF NEUROIMAGING CANNOT BE OVERESTIMATED.

One aspect of difficulty is when someone expresses the immense, continual pain ruining their lives, followed by, "I have no insurance."

Many here are aware of different possibilities, yet we are not rocks.

Do we have a concise document that someone could print and take to their doctor that describes CH, and mentions the conventional treatment options that would could caveot the information should be discussed with a doctor upon diagnosis?  I know we have a collection of docs, but maybe one brief PDF, to Bob's point, that doesn't steer them directly to a treatment plan but to their doctor wtih some resource information for both.

Thoughts?

The way I see it, there is a little gray area here.

On one hand people often benefit from having the most accurate diagnosis possible.

On the other hand the vast majority of doctors just suck really really bad when it comes to treating CH, and I know we consistently bring up effective treatment options such as hi flow non rebreather O2  that clueless MDs  simply do not.

Everyone with suspected CH should go to a headache specialist, but even if the CH'er actually has insurance, headache specialists, in all of their supreme arrogance and callousness, routinely require CH patients to wait months for an appointment.

I believe the ones who really need to catch on to the "Do No Harm" concept regarding CH are the doctors, and in the meantime, in their miserable aftermath, it's important on the front lines here to let others who may find relief with O2 etc. know about it ASAP.

there is a disclaimer always down the page and a title over it called clusterheadaches.com
what else need to be said?

QnHeartmm
there is one i have found which is good but unfortunately in greek and i think it was released this May which makes it brand new.

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Rashmi Halker, M.D., 1 Bert Vargas, M.D. 1 και David W. Dodick, M.D. 1

CLUSTER HEADACHE: DIAGNOSIS AND TREATMENT

Now the only thing it says about cluster headache mimics is this part

Quote:

Αν και η παθοφυσιολογία της αθροιστικής κεφαλαλγίας δεν έχει προς το παρόν διευκρινιστεί πλήρως, υπάρχει ένας αριθμός πρόσφατων σημαντικών παρατηρήσεων. Προκειμένου να αποκλειστούν διαταραχές δομικής φύσης που μιμούνται την αθροιστική κεφαλαλγία, οι ασθενείς που εκδηλώνουν συμπτώματα τα οποία υποδηλώνουν την τελευταία θα πρέπει να υποβάλλονται τουλάχιστον σε απεικόνιση μέσω μαγνητικής τομογραφίας εγκεφάλου (MRI), στα πλαίσια της αξιολόγησής τους.

which translates according to google translator like this

Quote:

Although the pathophysiology of cluster headache is not currently fully elucidated, there is a significant number of recent observations. In order to exclude disorders that mimic the structural nature of cluster headache, patients who develop symptoms that suggest the latter should be subjected to at least display by brain magnetic resonance imaging (MRI), as part of their assessment.

also a comparison inbetween tac headaches

Table 2. Cluster headache: a comparison with other headaches of autonomic tridymikes


1Average duration of crisis (minutes)
2Frequency of seizures
3Treatment of choice

Ch     /    Chronic paroxysmal  / SUNCT
60 minutes    15 minutes           60 seconds
1 to 8 / Day    1 - 40 / day       1 / day to 30 per hour
Verapamil     Indomethacin         Lamotrigine

if someone can find it in english pdf with the help of the authors names and title i think it would be a good start.(the translator unfortunately can't help that much in being always accurate.)

How about finishing up any post suggesting treatments , be it red bull O2 or any of the other more regulated drugs, with " even if you do find relief from one of these suggestions you must get your self to see a headache specialist to rule out any other possible cause for your headaches " or words to the effect of.

I don't believe with holding information would be the right thing to do  as it can literally save lives , but I do agree that the need for ruling out any thing else can't be stressed enough.

Nigel

I wonder if it would help if we produced a document that was emailed to everyone on registration (as about 20% of people who register never post, so waiting until people post might be too late). This document would include some of the main advice that we see in so many posts like:

• Get a diagnosis from a neurologist who specializes in headaches
  
• Take a preventitive - verapamil / topomax / lithium or similar
  
• Have abortives - imitrex / oxygen (with a link to the oxygen info)
  
• Energy drinks
  
• Common triggers like alcohol
  
• A discussion about pain medication, especially around narcotics with the pros and cons
  
• Links to online resources like clusterbusters, OUCH, OUCH UK, etc
  
• Links to journal articles and scientific papers that can be given to doctors to "educate" them about CHs
  

This is likely to be a huge help to people in getting a good start with good, accurate information.

Good idear Mike!  :)

The probem with getting advice out to people is they won't read and take seriously any volumes of documents you provide them. That's what the medical community keeps doing to them. The biggest asset this site offers is real people, Jimi, Bill, Linda, Lance......real people with real CH. When they say, "I tried this and it worked" it has real credibility and gives people hope again.

The problem, how do we continue to provide this first person advice...without potentially doing more harm then good. I don't suspect there'll be an easy answer to this one. :-/

Joe

If we provide the information ,it is then up to the individual reading it to make an informed decision and act accordingly .

If they decide to take our advice on treatments and not on getting properly diagnosed then surely that is there look out. We've don our part in helping and cannot be responsible for peoples lack of common sense.

Nigel

Quote:

If they decide to take our advice on treatments and not on getting properly diagnosed then surely that is there look out. We've don our part in helping and cannot be responsible for peoples lack of common sense.

you are right.

and something else
i was just reading the cluster headache specific details.


Quote:

This board is specifically for cluster headache related questions and support...

most posts there,in my opinion only, belong to the third section and as for the support among chers i feel the site....fails!
i am not quite sure how to put it but yesterday morning for example i had a 4 and half hour kip 9!
after  this nightmare ended i felt the need to log in
and find others who suffer as they are the only ones who maybe understand and yet after i was in it felt sort of inappropriate to even mention it.
does anyone ever feels like this?
Most people here are oldtimers and to tell the truth
even if i have been used to seeing the names on line and posts i don't even know most times who is episodic,chronic,who suffers current time,who doesn't.
i mean if all the effort is directing only the newbies to succesful treatments (there are not any chers anymore for whom the various treatments fail for one reason or another?)and to get right diagnosis only then where is the second part
of support among us?

so in other words
except the newbies(in site,posts number)i feel the rest here are very rarely in pain(i dont even mention suffering).

could someone define the term support
cause i dont really get it :-?

Black I understand what your saying and I know what you mean when you say it didn't seem appropriate to mention that you had a bad day with ch  cos it feels like your just moaning and others here are getting it worse. Please don't think that , and if your having a bad time and want to talk about it go for it , have a rant, tell us how you feel .

I don't know how much help the rest of us can be ,but prayers and sympathy are abundant here and some times it just helps to tell some one and get it off your chest.

prayers headed your way

God bless

Nigel

Black,

Many of us here, myself one of them, are chronic, but have dealt with the beast for so long we just deal with it.  Yes, we relate to the newbies and others going through a tough time, but how many times can we say we are hurting?  In some ways we have an advantage over episodics in that we know what to expect and when, whereas an episodic is always looking over his shoulder (I say "his" because everyone knows women don't get clusters! ;D  Right Linda?).

When you are having a particularly tough time it doesn't hurt to mention it.  I've done that more than once when I just had to vent and no one else can possibly understand.  Venting is good!  Whining is bad, but I've not seen you whine.

Hope this helps.

Jerry

Calico and black (toss in a tabby and it's a litter of kittens!) I think you're on to something! Why not a chronic corner? Seems oldtimers and chronics have different concerns and questions than newbies like my husband and me who two weeks ago didn't know red bull could help! Also, so many of you are so strong for us in the really dark times that brought us here; you need to be able to take off the super hero capes sometimes and admit you're hurting too without worrying it'll scare off the freshman class! Just don't take it to the point where you segregate the water fountains or anything, the newbies still need you all around!

A thought-provoking question, Bob, and well worth considering.  I'm glad you put this forth for discussion. 

In an attempt to narrow the focus a bit, you mention abortives specifically.   I presume we're talking about those abortive techniques that may be obtained without a prescription.  After all--abortives like imitrex can only be obtained by prescription, and the reasonable assumption would be that the person has received a diagnosis of CH--otherwise, it would not be available to him or her.

So it seems to me that the abortives in question would be things like oxygen, drinks containing caffeine and taurine, etc.  I'm guessing that we're talking more about oxygen than anything else, since most of the others I can think of are trivial. 

Yes--oxygen is obtainable without prescription, and it is a highly effective abortive.  A new person who has been given the information necessary to create his own oxygen setup, without a physician's intervention, could conceivably obtain the relief you describe, while masking a serious condition that has resulted in cluster-like headache.  That's a very real concern. 

In practice, however, it seems to me (as a mere observer--I have no statistics to back this up) that in most cases, people have been very careful to direct a newcomer who may have "self-diagnosed" to the care of a competent physician.  That's as it should be.

The information we provide on oxygen therapy is easily obtained from half the threads on this board.  A newcomer could create his own oxygen setup from posts that are available, without ever posting a question at all.

Nigel says it succinctly:


Headache Boy uk wrote on Oct 9^th, 2010 at 8:21pm:

If we provide the information ,it is then up to the individual reading it to make an informed decision and act accordingly .

I think it has been made abundantly clear by many, many people here that an "informed decision" includes a competent diagnosis from a medical professional.

Still--I have to say I'm not particularly impressed with some of the approaches that medical professionals take toward the treatment of CH.  How many posts do we see from newcomers who are given a goofy, misdirected treatment regimen from presumably "competent" physicians?  Things that don't work?  Things that do actual harm? 

The harm we, as non-physicians may do is very limited.  We can pass along the things we've learned, and people can take it or leave it.  The harm that doctors can do is immeasurably greater.  And I'll throw the ball back in their court--first, do no harm.

All the best--and my greatest respect,

George

Good post Bob and George! 

I agree with George on this, from what I've seen most here do advise seeing a Neurologist or Headache specialist first.  What people do with that advise is up to them. Assuming they are in enough pain to come here and seek the advise to begin with the next step for them presumably would be to get a Dr's diagnosis.  Again, this leaves the ball in the advise seekers court.

On another area that concerns me is the advice given on Clusterbuster methods or to go to Clusterbusters site.  I understand this IF they have been diagnosed and are not getting any relief from standard treatments, but there have been a few times I've seen this jumped to a little to quickly.

Just My thoughts.
Ging...

Ethically and morally we have no right to to recommend any treatment.  I guess we just welcome them,  kiss them on the butt and wish them good luck.

           Potter

Marc wrote on Oct 10^th, 2010 at 12:30pm:

Potter wrote on Oct 10th, 2010 at 11:13am: Ethically and morally we have no right to to recommend any treatment.  I guess we just welcome them,  kiss them on the butt and wish them good luck.            Potter Nope and nope. People are responsible for their own actions. If we offer input based on decades of experience, it is THEIR call whether to follow advice that says "go see your doctor." You can lead a horse to water...... Marc

That's not a treatment that's sound advice.  I see folks pushing everything from Aspirin to Zomig.  I've never felt comfortable recommending a pill to take care of what ails ya and have never done so.  I do push oxygen thinking it was the least of all evils.  Guess maybe not.

        Potter

Recommending O2 can be just as harmful as recommending an melatonin or an allergy pill to someone.
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This topic comes down to the person who receives the advice and what they do with it.  Hopefully they are smart enough to ask their doctor before adding any medications be it melatonin, allergy pills or O2 .

What we do is offer advice based on our experiences with CH and almost always back that up with an "Ask your Doctor".   Lets face it if Doctors knew more about CH, how to treat CH and for that matter if there were a cure for it, there would be no need for this website or those of us who use it, at least as far as information and treatment goes.  The Added Support would always be needed.

Stopping before I ramble and repeat myself and others more than I already have  ::)

PF Wishes! -  But check with your physician 1st please  :)

When someone signs up on the board, don't they get some kind of auto-reply to their email address?  I can't remember, it's been a while since I signed up.

Couldn't this reply include some kind of easy to read information about how important it is to see a neurologist for proper diagnosis?

Lee Ann

Quote:

Some are here looking for help - others of us are here to try and help others avoid the horrors we have been through. That's a good combination in my view.

caution is the key and double check with what everyone says no matter if they are newbies or oldtimers on the board
a possible tumor doesn't really care about if one has insurance or not or if others feel like saviors and want only to help.By the way a newbie could no possibly add something useful and those who are here to help don't ever need help?!(this discrimanation between ch sufferers sorry but i find it a bit hypocrisy).ok more than a bit.
sometimes getting a horror like learning whether ch is primary or secondary is crucial in the after therapy earning time which is even crucial too.

better hands wash each other and both the face.
and i ve seen so much we speaking here instead of i which is... :P

black wrote on Oct 10^th, 2010 at 6:26pm:

and i ve seen so much we speaking here instead of i which is... :P

There is no 'i' in team and we all work together to try to provide the best information possible to those in need.   ;)

CH.com is a worldwide Cluster Headaches SUPPORT group. According to DJs design.

It is a community of individuals with individual opinions and ideas.

It is not intended to be a medical group offering diagnosis and medical prescriptions as I understand it. Some forget that.

Those not afflicted with CH will be quickly found out by the experiences here and nudged along. Time and again we have the new poster relay their symptoms. We dont and cant diagnose but there are enough of us with variable experiences that we can quickly make an educated personal quess if they should seek immediate medical help or pursue another direction. None seem shy about that. I have seen it time and again. Kudos to all.

We or most of us are simply suffering the same malfunctions and wish to be helped and help others in the same boat as there is no other place as good as this and very few others that understand.
If one of us found something to make the day a little brighter, be it a medication or an action, I dont think any of us should hold back no matter how ridiculous some might think it to be. At the same time if one found something to cause greater suffering say it out loud.

The reoccurring theme is we are all different and what helps one may or may not help another.

The fact of the internet is that many will find their own diagnosis today, some will misdiagnose just as a doctor can and often with better information.

With a massive percent of the population without insurance in the USA you cant blame them when it costs a few hundred bucks just to see a doc one time and then several hundreds more to see a neurologist who may again be misguided.

I personally havent been to a doc in over 15 years now for CH. Why would I ? As I never found a prescribed med to help.
Though if something were mentioned here and I researched further about it and thought maybe it would help I might go a doctoring for it.

More often than not it is like minded support commiseration that we all want. Just to know we are not alone in this world, that is the absolute greatest med of all. To this day certain stories bring tears to my eyes the same as when I first came here.
It is also a great place to compare meds, how they affect one or another, did they help or not, who got constipation or the runs (yuk). Things to ask the docs.

We cant and dont prescribe meds. We do often suggest alternates; abortives, energy products, welders oxygen, melatonin, excercise, kudzu, magnesium, etc... that is readily available to all the population. Its up to the people to know how these affect them. True some of these etceteras could be dangerous as well but all are warned.

There is no firm diagnosis of CH just experience and symptoms. With dilligence and thought we all can provide input  but never could we prescribe a med.

As allways though as Bob says its best to err on the side of caution if one must err.

my 2cents. Reread the other posts and its a large repeat ramble I wrote but I'm just here for the cookies anyways.

black wrote on Oct 9^th, 2010 at 9:32pm:

and as for the support among chers i feel the site....fails!

Thing is--we invent the content.  The site is a superstructure--a framework-- upon which we can build whatever we choose.  DJ doesn't define it.  The mods don't define it.  We do.

All of us.  Any one of us.

Want to change things?  Just begin.   :)

Best,

George

Callico wrote on Oct 9^th, 2010 at 12:18pm:

Thought provoking.  Good post. Jerry

I stand by my original post.  I believe Bob has provoked a lot of thought.  I know I have thought long and hard about this since I first responded.  Last night I tried to put a few ideas down on paper just to keep my thoughts organized.  (It didn't work)

Bob, while I agree with much of what you say, and I do believe we need to point newbies to have an MRI and an MRA to check for other issues I think we also need to (after hearing their symptoms and description of attacks) direct them toward some form of HA abortion.  We do need to direct them to an headache specialist who is versed in CH, but for much of this country they are not accessible.  Our GP's know squat all about CH.  My Chiropractor knows more about CH than does my GP.  He spent two weeks studying headache as opposed to 5 hours for my GP.

How many of us went through years of misdiagnosis or lack of diagnosis, or prescription of useless medications that have very negative consequences such as addiction or dependence. (My hand is raised)  How many of us have had teeth pulled, sinuses operated on, etc. etc. etc.

I realize we cannot diagnose, nor would I even attempt to, but when presented with often clear cut presentations of classic CH symptoms I feel we have a duty to direct the sufferer to a proper diagnosis and during the three to six months he will probably have to wait to see a Neuro, and then it is a crap shoot whether said Neuro knows a head from a hole in the . . .

Perhaps I'm a bit more sensitive to it tonight after having gone eight or nine weeks ( lost track and am to tired to figure it out) without having to use O2 I've been nailed 6 times today.  I had forgotten how badly they hurt.  I can't bear to let a newbie who doesn't have over 30yrs experience deal with these without some help.

JMHO

Jerry

It's a cluster headache support group. Once you're here you're treated like you have cluster headaches, period. It's not our responsibility to diagnois, it's our responsibility to support. To do less than we do would be to leave people in despair and darkness.

Let's not forget the WORST "side effect" possible from this condition, shall we? They aren't called Suicide Headaches for nothing! That's the "side effect" this support group actively works against. THAT is the reason people reach out to newbies from around the globe with hope and help and possibilities.

It's a thought provoking argument, Bob, and a part of me does agree with you- you raise a very good point. But the difference is a place like where we have now or one that just has a big SEE YOUR DOCTOR in flashing red letters on a white backround

This time last year when I first started suffering from CH , I was one of the lucky ones getting diagnosed within two weeks, finding this site was a game changer for me .

Some where to ask questions about what I was suffering from (no info what so ever from my GP). Some where to ask about the meds he'd put me on etc. Some where to ask how long this would take to clear up (didn't like that answer).

and some where to come to terms with what I'm suffering from.

With out the advise given freely on this board I would have no idea that I could go down to my local shop and get a energy drink out the fridge that could actually reduce the pain when OTC pain killers wouldn't touch it. I would have no idea that O2 could be so effective in aborting attacks or even sticking your head in front of the air con vent could help.

and that is just the start of the help that has been so freely given to me from this board.

It was from advise given to me on this board that I had an MRI scan done and saw a neurologist (wan**r) ... sorry that wasn't nice after the poor man made me wait 6 months for an appointment and then made me wait an hour and a half in the waiting room and then kicked me out 5 minutes later after not listening to a word I said  >:(

Any way all this stuff is essential and ALL of it is SUPPORT.


I just hope that I can return the favor and help some one else.

God bless

Nigel