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

Thought provoking.  Good post.

Jerry

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



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.

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.

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

Good idear Mike! 

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

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

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!

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...

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

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

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

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


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