When getting diagnosed, most of us will have had a CT or MRI scan of our brain to rule out other possible causes for the same symptoms. The news story below highlights one example where someone who was suspected of having CH found out that CH wasn't the cause.

Whilst it won't help the person concerned, it could help others get a chance to survive.

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Haven't been on here for a while and missed this.

Mike, you are spot on with this. The importance of an MRI/CT scan cannot be over emphasized. Years ago on this board, we had a newbie asking for help in dealing with his HA's. I was foolish enough to recommend energy drinks and O2 right away when another clusterhead, more wise than I, asked if he had been diagnosed by an HA specialist and if he had had an MRI. The guy had self-diagnosed based on his symptoms, and they were all right down the line classic CH symptoms. The other clusterhead told him not to try any of the pain relief recommendations he had been given until he had had an MRI and a definitive diagnosis by an HA specialist.

The gentleman went to his doctor and insisted on an MRI based on this advice and they found an aneurysm that had he followed my advice probably would have killed him. I have never since recommended ANY relief factors until I know the patient has had the requisite scans.

Thanks for posting this. We all need a reminder periodically.

jlc

Thanks for posting that...and the message Mike....

....and.... it would be IMPOSSIBLE for Jerry to be MORE right!


.....I suspect that folks new to the website roll their eyes and get annoyed by the near unanimous
reply they get here: "we don't and won't diagnose....we are NOT Doctors....get thee to a headache specialist....come back with your diagnosis and we will hoop jump to help" It even used to annoy me.....UNTIL:

The customer of a colleague related CLASSIC CH symtoms...this colleague being the ONLY civilian (non clusterhead or supporter) I've ever met who really "got" CH....he  thought I could help....

Another time.....probably previous to ch.com...I would've spouted off a bunch of "do this-es!")...and probably still do a little too much. This time, I offered some vague advice (headache diary for one) without any specifics (like O2 or caffeine)...and insisted he go to a neuro for evaluation. He did...the wise neuro did a scan (CT or MRI) and FOUND a brain tumor. If I had advised...and he believed advice from an experienced clusterhead......he might be dead...it STILL gives me chills...

I've said it before....I will always believe.....the gentleman who started this site is a man among men..... and has LITERALLY SAVED LIVES! His name is DJ...thanks man!!!!

Best

Jon

What Jon said! DJ has saved lives, mine probably among them.

jlc

CH looks easy to diagnose, even looking at the official diagnostic criteria - START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE.


A. At least five attacks fulfilling criteria B-D
B. Severe or very severe unilateral orbital, supraorbital and/or temporal pain lasting 15-180 minutes (when untreated)
C. Either or both of the following:
  1. at least one of the following symptoms or signs, ipsilateral to the headache:   
      – conjunctival injection and/or lacrimation
      – nasal congestion and/or rhinorrhoea
      – eyelid oedema
      – forehead and facial sweating
      – miosis and/or ptosis
  2. a sense of restlessness or agitation
D. Occurring with a frequency between one every other day and 8 per day
E. Not better accounted for by another ICHD-3 diagnosis.

It doesn't even need a doctor to tick off A, B, C and D, other than perhaps Googling some of the word meanings for C 1.

But #E is really, really hard.

A few years ago I was in communication with someone, a neurologist, who had been seen by several highly experienced neurologist who had a good background in headaches, and it still took over a year to get an accurate diagnosis.

So there is no way that even as expert patients we can even try to do a diagnosis without risking getting it wrong with potentially significant ramifications.

Once there is a diagnosis we can do a lot to help which can include things like challenging how a doctor is treating CH to providing emotional support.

DJ plus people who post here hasn't just saved lives, he will have saved marriages, relationships, jobs and so much more.

True that. ^^^^