In the last few months eagerness to help has begun to stimulate treatment suggestions before a clear diagnosis has been made. Especially for new folks, this can lead them down the wrong pathway.
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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]

I do believe I voiced this very concern in Vegas at the CB convention.  Seems to have fallen on deaf ears.

                  Potter

I wrestle with this issue to. On one hand, you're afraid of giving someone a tool to relieve pain, which will make them stop their search for a thorough workup, possibly masking a more serious issue.

On the other hand, people who show up here have already elected to handle their own research and treatment, and will continue to suffer the pain of whatever is hurting them.

Factor in that the majority of GP's and even most neuros are woefully uneducated in headches, and going to them is about as efective as surfing the net, you end up with so many people who are hurting so much.

So what percentage of people that we give suggestions to are actually going to mask a more serious condition? Given the fact they have chosen NOT to seek medical care on their own, are we really hurting them?  Compare this with the other 98-99% who will finally have relief from the most horrific pain the mind can imagine?

I will continue to preface all of my suggestions with the directive that a qualified headche specialist neuro is your best bet at getting an accurate diagnosis and an effective treatment regimen. Then I will tell them how to stop hurting.

Joe

Bob,

Excellent post, and we (experienced) long timers with CH should really be careful with our recommendations for relief from pain and encourage people to see a headache specialist. I see your post has been "stuck" to the top of the Medication Board, as it should.

For people who have a hard time finding a specialist, or neuro who will treat, or listen, print off that thread by Bob, and mail it to your doc several days BEFORE your appt., so he or she has time to read it and maybe do some research and have a plan by the time you get there. Don't take it with you, the doc won't have time while you are there.

Also, I'm sure we are aware of the nice people who send out treatments to hurting souls, with all good intentions, of course. But, do we know the person who is getting these gifts has been diagnosed properly by an experienced doctor, or at least one who is well versed in different treatments for CH, and for CH-LIKE headaches? I know a couple of people who died from brain conditions that the pain was so bad, they thought it was like the normal headaches they used to get, but it wasn't. Get a brain scan, and work with your doc.

Even though most docs are uneducated when it comes to CH, more and more doctors are starting to know what it is. I've run into more docs now that understand at least what they are, as opposed to several years ago, when they sounded more along the lines of "cluster headaches? Take some ibuprofen..." Recently I was in the ER, and the doctor asked me why my right eye was so bloodshot, and I told him cluster headaches, and he nodded his head, asked me a couple more questions, then we focused on why I was there. He knew more than the average box of rocks!

Joe, you are right, it's a good idea to preface suggestions with get a diagnosis and treatment plan from a specialist and then suggest some "tricks and tips" of how to stop hurting. How can we be sure someone has been to a doc, and isn't just reading the internet? It's a catch 22. But, we are here to help. It's a matter of how much info we give out, and then who's gonna be reading it? What to do, what to do?