Welcome to the board, so glad you found us. yes it's rare, yes it's currently incurable, but the good news is by educating yourself, it's very very manageable.

It's now your job to educate yourself, form a partnership with your doctor, and plan a treatment program. The good news is you don't have to do it alone. Welcome to your new second home!

Joe

Hi Angela,

Welcome.   You may want to find a doctor that specializes in headaches.  There are doctors that know about CH.  And, there are also doctors that are willing to learn.  The trick is finding one.

Joe is right.... You can live with CH.  Read all you can here.  The more you know the better   prepared you'll be to help your doctor find the right treatment for you.

Jeannie

Hi Angela & Welcome to the nut hut.

The others have given you good advice & I'm sure Lelimey will be along soon & being a Britt she will set you right on where to look over there, if she cant sort things out then the whole world is stuffed.

Cheers
Barry

Some find that drinking an energy drink at the onset of a HA helps to stop the attack.  Red Bull or anything with caffeine and taurine should do the trick.   Drink it as fast as you can at the very first sign of a hit.   It has helped me in the past.

Jeannie

might try a coffee flavored energy drink, less carbonation and funky taste.
they go down smoother and faster there by give a little faster relief.
just a thought.
its what i found to be most helpful.
examples in the US are monster
mean bean, locha mocha, russian varieties

Have you only got a diagnosis from your GP Angela?
They don't have the capacity to diagnose this. You need to see a HA specialist neurologist as with this kind of pain, nothing can or should be ruled out. You NEED an MRI. If nothing else, the wrong meds can kill. As a for instance, there is a specific type of migraine called Basilar Arterial Migraine in which the pain is awful but triptans can kill.

CH is definitely recognised within the UK, there is OUCH UK for one thing which is the organisation for the understanding of cluster headaches. If you google CH they will show up.

I'm only in Notts, if you want to chat or need any more help please feel free to give me a shout!

Helen

Brew, here in the UK a GP can't order an MRI. That would have to be done by a neuro (or any other specialist that wants one)

That's great!   It sounds as if you have a doctor that is willing to learn.  You can work together to get your HAs under control.

Jeannie

There are over 600 types of headache many with cross over symptoms.

In your first post you said doctors don't like self diagnosis so from that I am deducing you went to them and asked them if that was what you had based on symptoms you'd read on the internet.

There is a very real danger with that. It is very easy to only relay certain symptoms or to predetermine that is what you have. THAT is why it is essential you see a headache specialist neurologist and have an MRI.

GP's spend approximately a day learning about headache in the course of their training. CH is not a common headache so it doesn't take much to work out that most of that one day is taken up with more common headache types.

I have a wonderful set of GP's at my surgery. They are all amazing and all agree with each other in saying their job is to treat the regular stuff and refer the stuff on that's outside their expertise.

I cannot stress highly enough the dangers of some of the meds we use on "wrong" conditions. Getting an MRI isn't an option, it's necessary. It is the only diagnostic "tool" as such for CH and is only really useful in that it shows up what isn't there. If nothing is there then it's more likely to be CH however as the BNF itself says, with pain of this morbidity, an MRI is necessary to rule out other conditions or tumours.

It's absolutely not a chance I would recommend you take.

Helen