Welcome,

Just my opinion and surely others with far more experience will soon be responding. One thing I'm sure of: Get another opinion. You need to be seen by a headache specialist or a neurologist or a pain specialist who treats cluster headache. The hand tremor and confusion seem to point to some other neurological disorder. If the drugs you were given (migraine medicine, anti-inflammatory and narcotic) work, you probably don't have CH. First order of business: Get a proper diagnosis. Read enough here that you're knowledgeable about CH. You may find that you'll have to educate your doctors.

Good luck,

Ron

Hi, GD,

When you were initially hospitalized, were you given a diagnosis?

I agree with what Ron said: you need to see a good neurologist, preferably a headache specialist, to get a proper diagnosis and better meds.  You may have a couple different things going on.  The symptoms you say started 3 weeks ago do sound like CH, but the initial symptoms you describe (pressure headache, numbness, and confusion) are not typical CH symptoms and need to be checked out by a specialist to make sure nothing more serious is going on.

I also agree with Ron that the meds you were prescribed are not the typical meds prescribed for CH.  If you have CH, you need to get different meds.  Cocodamol contains codeine and acetaminophen.  Narcotics are an extremely bad choice for CH pain control; they are slow, not very effective, and addictive.  The acetaminophen is useless for CH and will to bad things to you if you take too much too long.  If you have CH, oxygen and imitrex shots are the abortive meds of choice, and you will need to work with a neurologist to get a preventive medication that works for you.

Regards,
Laurie

Although CH has a tendency of sometimes taking years before crystalizing the classic hallmark symptoms, your initial symptoms do appear unusual.

Right call to have it diagnosed by a neurologist (who hopefully specialises in headaches) or better still a headache specialist.

The O.U.C.H. website can help you to locate a specialist near you (in the US and UK). Perhaps that will be a quicker way to get an appointment.

In preparation of your appointment I would keep a detailed diary of all your attacks and their length, pain level, possible triggers, medication that worked or didn't etc.

Best of luck.

Folks,

Thanks for the kind words and support so far - very grateful. (And slightly appalled at the treatment/scepticism some CH sufferers appear to suffer at the hands of trained medics.)

I should probably have been clearer on a few things first time round:

In terms of meds, I have now stopped taking Cocodamol and Diclofenac, although I do still take Propranolol - this is for tremor but the doc thinks this is unrelated to the headaches.

In terms of the confusion, this stopped around 5 weeks ago and has only reared it's head twice since then - but not in the last three weeks or so.

Upon leaving the hospital first time round, I was not given any diagnosis or attempt at an explanation - just sent out the door with a prescription for codeine, and the promise of a follow up appmnt with a Neurologist.  (This shook me up slightly as this is the first time I have ever been admitted to hospital in my life, I also hadn't been to see a Doctor for around six years leading up to this.)

I then went to see my GP, she nodded complacently as I told her what happened - she then prescribed Diclofenac/Propranolol - as well as Cocodamol.  (I have now been off the Cocodamol and Diclofenac for around 2-3 weeks, could be a rebound headache but from what I've read they don't last that long, are not recurring and don't exhibit many of the symptoms of CH.)

So after all of this, I then began to experience the CH symptoms, intense localised pain, waking up at the same time every night, tearing etc.  I booked a follow on appmointment with my GP but as mentioned, it was not my usual Doctor and she seemed to think the symptoms exhibited were close to those associated with CH.  (The tremor appears to be unrelated.)

She gave me a prescription for Sumatriptran, which thankfully, I have not had to use yet as most of the attacks since seeing her have been shadows or low-medium grade.

The Doctor is also in the process of chasing up my appointment with the Neurologist, this is at the Southern General Hospital, Glasgow, Scotland.  This place is actually quite well renowned for it's Neurological work - I believe there's some sort of Neurology institute on the campus.  I'm pretty loathe to go searching for someone else at the moment but I think if this drags on for any more than another couple of weeks at present condition, I could be sorely tempted.

Re: Red Bull - any alternative energy drinks you could recommend that have the same effect? (Had a bad experience with Red Bull [mixed with Vodka and Tequila incidentally] in my younger days - haven't been able to look at the stuff since...) 

All, once again - thanks for your help and input.

Relentless tropical - the green one tastes like lilt and has the required ingredients and amounts, and it's cheaper than red bull.

Nigel