Wow, you've got a lot going on there. First off, visit your local group, Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or ;   They will have a lot of area specific information for working your medical care over there.

Then take a look at this regimen:

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

It's a simple vitamin/anti-inflammatory regimen that's bringing a lot of relief to a lot of CH sufferers. Cheap, good for you even wihtout CH, certainly worth a shot.

It sounds to me like you may be suffering from multiple headache types, which of course makes the diagnosis and treatment that much more complicated. Are you working with a headache specialist neurologist? Most GP's and even your garden variety neuros just don't have the background and experience to deal with the more complex headache types.

Wishing you some pain free time soon.

Joe

Jools, when you don't know what your problem is, it's most unwise to start self-treatment. None of us are in a position to diagnose, much less safely treat you!

Background note: so much of our correspondence from GB focuses on the poor level of health care around headache. So, finding good sources of care is your first, essential step, regardless of what the docs you have seen have advise. It appears that they don't know what your problem is.

Urge you to contact your excellent support group and start this discussion with them.   Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or
They can steer you to an excellent headache center in London, one of the best in the world. (Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or )

From your description, I assume that you don't have Cluster. However, there are a number of disorders, some quite serious, which MIMIC cluster but which are not primary headache disorders. This is a real source of confusion for the doc unless they appreciate this fact.
(Just for your information: 
Link to: cluster-LIKE headache.
Section, "Medications, Treatments, Therapies --> "Important Topics" --> "Cluster-LIKE headache")

I can appreciate that, sinec you are seeing a headache doc, it will be uncomfortable talking about a referral. However, it's not unreasonable to discuss the wisdom of such a move--and it is your pain!

Thanks so much guys, re doses, I had all drugs titrated upto the maximum dose from the UK disease management guidelines, this (along with me just not having the runny nose/tearing/restlessness etc) lack of response has been what is really make me question my diagnosis, I have asked for a referral to a new neurologist and 'start over': this is great advice, I feel I have seen my present so many times we probably can't see the wood for the trees, probably like all of you guys, hope of a quick fix faded some time ago but I cannot accept this quality of life I have at present will be like this forever, even Morphine Oral had no effect on my eye/head pain- so determined to get this improved
cheers and once again, thanks
Jools

Hi Lance
Thanks for that, really struggled on Verapamil- I am a runner/keep fit etc etc, having been on the drug for just under 3 weeks my resting pulse was less than 30 beats a minute, to be honest I was worried I wouldn't be around the following day, that was the drug I had the highest hopes for but like I say, I had to come off it
cheers all
Jools