That sounds really horrible, Rich, so it's no wonder you're casting around the net seeking answers.

Top left of your screen is a button for 'Cluster Quiz'.

Take it seriously, and regardless the result we'll help you every inch of the way.

All headaches are horrible.

Who diagnosed you as having Cluster is important. Large # of docs lack training/skill/experience with complex headche disorders.

Before looking around for a treatment, suggest you, if at all possible, find a headache specialist for a good diagnostic work-up.
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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.

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Self-diagnosis and self-treatment can lead to much lost time and mislead any doc you see.

Diagnosed by two different GP`s however they are not specialists  , scary thing is I answered yes to a few of the questions so if its not a cluster headache what the hell is it ?

Questions were do you feel sick well yes around artificial light
And the headache lasts up to two weeks

MRI scan was negative nothing on there and medication wont budge it.

Lucky im booked to see a nurologist

Good move on getting the neuro appointment as this is a step forward to getting the answers you need.

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

That has the standard definition of what the diagnostic criteria are for CH:

A. At least 5 attacks fulfilling criteria B-D
B. Severe or very severe unilateral orbital, supraorbital and/or temporal pain lasting 15-180 minutes if untreated
C. Headache is accompanied by at least one of the following:
        ipsilateral conjunctival injection and/or lacrimation
        ipsilateral nasal congestion and/or rhinorrhoea
        ipsilateral eyelid oedema
        ipsilateral forehead and facial sweating
        ipsilateral miosis and/or ptosis
        a sense of restlessness or agitation
D. Attacks have a frequency from one every other day to 8 per day
E. Not attributed to another disorder

Where it gets tricky is E, where the person doing the diagnosis has to rule out every other potential cause. If you look around the IHS site I linked you'll see that there is a whole load of different headaches types plus there are multiple other causes of the same symptoms, although the negative MRI scan rules most of them out.

Also in the above definition, the numbers are just for typical durations, so if a headache lasts 181 minutes or even 200 minutes it doesn't exclude it from being CH. However two weeks sounds rather long for a CH, however from experience any headache going on that long is a form of torture.

It is also possible to have multiple headache types at once, with the migraine / CH combination being a common combination. This is where a good doctor really is needed.

Hope you get to see the neuro soon.

Interesting a lot of the symptoms do match CH and the attacks do come in waves throughout the day getting progressively worse then easing off. The temple area is also tender to the touch a and I have a painful left nostril where its been running also eye watering in one eye when concentrating like driving.

I was re prescribed Almotriptan , it works a bit better relives the pain but does not remove it completely . Its now day 5 , still feel a throb but the second wave seems easier than the first set I had two months ago.

One thing im investigating is like an idiot to cope with shifts I took sleeping pills once or twice a week to sleep for 6 years. After I binned those I had a severe withdrawal off them that gave me depression for 1 week and a feeling of detachment and not being myself. Bearing in mind those pills are basically tranquilizers they can do bad damage to the head after advice I gave them up around 6 months ago. At cluster headache two for 1 day I felt detached and depressed could this all be from those pills?