You're in a good area to filnd a specialist. Avolid general neurologists unless you confirm they have good training and eperience with complex headache disorders. Studies show neuros. have meager training/experience.
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LOCATING HEADACHE SPECIALIST

1. Yellow Pages phone book: look for "Headache Clinics" in the M.D. section and look under "neurologist" where some docs will list speciality areas of practice.

2.  Call your hospital/medical center. They often have an office to assist in finding a physician. You may have to ask for the social worker/patient advocate.

3. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or ; On-line screen to find a physician.

4. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or Look for "Physician Finder" search box. They will send a list of M.D.s for your state.I suggest using this source for several reasons: first, we have read several messages from people who, even seeing neurologists, are unhappy with the quality of care and ATTITUDES they have encountered; second, the clinical director of the Jefferson (Philadelphia) Headache Clinic said, in late 1999, that upwards of 40%+ of U.S. doctors have poor training in treating headache and/or hold attitudes about headache ("hysterical female disorder") which block them from sympathetic and effective work with the patient; third, it's necessary to find a doctor who has experience, skill, and a set of attitudes which give hope of success. This is the best method I know of to find such a physician.

5. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or NEW certification program for "Headache Medicine" by the United Council for Neurologic Subspecialties, an independent, non-profit, professional medical organization.
        Since this is a new program, the initial listing is limited and so it should be checked each time you have an interest in locating a headache doctor.
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WHY A HEADACHE SPECIALIST IS RECOMMENDED


Headache. 2012 Jan;52(1):99-113.
Cluster headache in the United States of America: demographics, clinical characteristics, triggers, suicidality, and personal burden.
Rozen TD, Fishman RS.

THERE REMAINS A SIGNIFICANT DIAGNOSTIC DELAY FOR CLUSTER HEADACHE PATIENTS ON AVERAGE 5+ YEARS WITH ONLY 21% RECEIVING A CORRECT DIAGNOSIS AT TIME OF INITIAL PRESENTATION.

I too was on ergots for many years as an abortive, but
if I didn't catch the beast in time my CH would climb to
a kip 8-9 before it kicked in, they have now been taken
off the shelves here, and most developed countries around
the world because of their side effects. Maybe ask your
neuro when you get to see him about Verapamil as a
preventative and a Prednisone taper dose 7-10 days
until the Verapamil kicks in.


Cheers, Hoppy.

I appreciate the suggestions. It's not easy to find a qualified neurologist because the good ones (and probably most of the bad ones) tend to book many months out. The advice I received helps me focus on the solutions I need to explore.

As this is my second cluster attack -- the first was nearly 20 years ago -- one thing I have learned is that not all clusters are created equal. Things that might have worked the first time might not work this time. Also, there's a fairly predictable pattern: REM sleep triggers the cluster headache, and, all too often, the clusters trigger a migraine soon after I get up. Not always, but not uncommonly. The combination of these two simulataneous headaches is about as unbearable as any pain I have experienced. And what works for one doesn't work for the other. Once the worst of the pain fades, I almost always need an opiate to help with the hangover pain.

Sadly, while our health care system's business model works very well for highly specialized providers, it doesn't work very well for highly specialized pain. I suppose that if there was a critical mass of cluster victims, the resulting lucrative industry that would follow would help to provide solutions for clusterheads. Until that happens, we are left to our own devices...and to sort through the information and misinformation that the Internet so generously generates.

Welcome, and sorry you had to find us.
For now, its best you stop taking all those pain killers
as you could be making things worst as they do zilch
when it comes down to treating CHs. For now, try slugging
back a Red Bull the one that contains Taurine. Also, you can try soaking your head and the back of your neck with ice cubes wrapped in a hankie, this is known to relieve the pain, and in some folk abort the beast within 20mins.

Hoppy.

What you could try in the time being, instead of all those
drugs you are swallowing is Imigran 50mg tablets, you
can buy them from your local pharmacy there in the UK.
At the first sign of an attack swallow one down with a hot
cup of coffee, the injectors work the best, but you can only
get these on a script from your GP.

Hoppy.

Hi Mike

Thanks for the advice, you're right when the attacks become severe the pain killers / opiates have zero influence (other than possibly shortening the episode - I don't know?)

What I do know is the cocktail of drugs prescribed by the docs is turning me into a veg.

I took Hoppy's advice and went and got some Imigran - not cheap £8.79 for 2 but if they work I'll pay)

So waited for today's main event (4.10pm) and took one, the episode lasted over an hour and just as painful as usual so not too encouraged.

(Had background 1/2 headache  / migraine most of day)

Another attack is brewing (time now 22.40pm) so will use other pill if it turns out to be a proper bastard.

Intend to let tomorrow be painkiller / opiate free, I'll see how I go on. Funny how something like this can drain the last ounce of energy from you yet I'll still be wide awake (in pain or not at 4 / 5 am).

Top tip that may work for others - If I lay flat on my side in an attempt to go to sleep - full blown screaming ad dabs are on me in 5 minutes flat. Now sleep, when I can, sat propped up.

I'll let you know how I go on

Thanks Hoppy

Yes the ones I got were 50mg, I don't think 100mg were an option over the counter.

Taking at very first sign is a bit tricky for me, I have roughly 3 intensities (each in left half of head) 1) mild - moderate (background) 2) Moderate - severe (what I call migraine) and 3) (V Severe - screaming Ad Dabs - lasting 15mins to 1Hr 15mins). Very few calm periods, they are measured in minutes not hours.
Last Night and today not good, quit the painkillers and opiates and remembered my poo bottom hasn't been doing its job for the last week (several Senakot and Ducalease and a pint or two of sweat and blockage is mainly dealt with.
only 2 bad attacks, one a few minutes the other just over half an hour. But over all pain levels no worse than when I was taking the pills.
Not expecting too much sleep tonight

lancashire Lad wrote on Jan 16^th, 2015 at 5:55pm:


Good move on the pain killers, which will have taken courage to do. The constipation is a common side affect of the narcotics, so that should also ease as they clear your system. Your head will also be getting clearer too, other than the headache pain of course. But the key thing is that it is no worse than when it was with the pain killers. You're also likely to see a drop off in the frequency as the rebound headaches drop too.

Keep at it and then the next step is getting the diagnosis, which will let you get the right treatment for whatever headache type(s) you have.

Lancashire Lad wrote,
Anyway going in search of Indomethacin today (That which is to HC headaches that Krytonite is to Superman)

Yes, this is true, but it plays havoc with your stomach so
you may need some stomach settling medicine, ask your
GP about this when your there. That's the thing with all
the types of cluster headaches out there, theirs not one
fit all remedy for CH's, we are all different. Please keep in
touch on how ya going.

Cheers, Hoppy.