Hi my names Rich im 35 normally a fairly fit guy ex army now doing similar public services job , around one and a half months ago I suddenly encountered extreme anger and then it felt like a switch had been turned on whilst at work , this created pain in my head a feeling of detachment and an inability to remember my training for the job.
At the time I thought I was going mad and had typical migraine symptoms with vision disturbance , painful left temple to the touch and feeling of sharp pain behind my left eyeball.
At the time colleagues thought I was having a stroke , after a  trip to hospital all they could find was raised blood pressure and diagnosed migraine.
The migraine persisted for around a week so did the feeling of detachment , nausea at fake lighting and difficulty in concentrating or using computers or phones. I was prescribed sumatriptin this failed massively I  then re attended and got prescribed amogran which only alleviated symptoms but never removed them. Finally I was told I had a cluster headache , the damn thing lasted for nearly two weeks however a month and a half later I still don't feel the normally bubbly happy self. Yesterday at work I got irritable , pain started to build up throughout the day and after falling asleep in my car for 30 minutes I awoke to the sharp splitting pain of the cluster headache , by now it was night it was really hard to drive home , my face felt funny almost saggy and I had a fuzzy crackly buzzing feeling of an aura. I had an almost electrical sensation on my tongue so I tried Almogran again. I slept had bad nightmares awoke went to work where the artificial lights made me feel ill, supervisors sent me home im awaiting the doctor again ... hope this sorts its self out I feel for my wife who is scared by it all

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.

Hey Rich,

Welcome aboard CH.com and thank you for your service.  You've come to the right place.

Although we know what you're going through, we're not doctors so we don't diagnose...  What we do suggest is finding a qualified neurologist who treats cluster headache sufferers on a regular basis.  If you'll tell us where you live, a CH.com member may be able to help with a list of neurologists in your area.

In all of your medical consults, did you have an MRI or CT Scan to rule out physical abnormalities?  This is an important step in the differential diagnosis of cluster headache.

Over the past four years, we've found that nearly all cluster headache sufferers (CH'ers) with active CH are vitamin D3 deficient.  That makes a trip to your PCP for the 25(OH)D lab test a good idea and good gouge.

The normal reference range for this lab test is a 25(OH)D serum concentration of 30 to 100 ng/mL.  Most CH'ers need to take enough vitamin D3 (10,000 IU/day) to elevate their 25(OH)D to around 80 ng/mL in order to prevent their CH.

You can find out more about vitamin D3 and the anti-inflammatory regimen at the following links:

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Be sure to discuss this regimen with your PCP or neurologist once you've had the lab test for 25(OH)D.

Take care and again, welcome to CH.com

V/R, Batch

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

4. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE 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. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE 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.

Hi Rich and welcome

That sounds like a pretty horrible headache you're having, with all sorts of symptoms thrown in. You really do need to work with a headache specialist to figure out exactly what is happening as most doctors, even most neurologists just don't have the skills or the experience to figure out an accurate diagnosis. This is critical to getting the right treatment for you.

If it is CH then you've found a great place to learn about them from lots of people who also have them too, so we can offer knowledge and support.

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

Congrats on the neuro appointment, Rich. Let's just hope he's worth his salt because diagnosing the different headache types can honestly be difficult.

You can help him a lot by immediately starting a headache journal and keeping notes on each attack: time and date, how long it lasted, intensity (see our Kip scale and give him a copy) possible triggers, anything you can think of to help him in his task.

Also important is any medication you've taken, whether it worked or not, so he can make a complete picture.

Stick with it, mate, because only good can happen from here on in.

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

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

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.

GPs are rarely trained to treat complex headache disorders. IF you have Cluster you need some sophisticataion in your doc. Why we keep recommending a headache specialist.

That sumatriptan didn't help--and it's one of the most effective abotive meds we have--raises a red flag. Possibility of having a cluster-mimic, a headache which appears to be Cluster but which presents many of the same symptoms but whic is not a headache disorder.
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Link to: cluster-LIKE headache:

IN: "Medications, Treatments, Therapies --> "Important Topics" --> "Cluster-LIKE headache"
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The cluster quiz (left) is only a fast sca of major symptoms and cannot be used as a final diagnosis.

Bottom line: you are not in a position to make your own diagnosis and to decide what treatment you need.

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?

As a group, neurologists have limited training in headache. If you are to see a generalist neuro, then ask for his "credentials" around headache: special training?, amount of experience dealing with complex headache disorders?

Why we advise a headache specialist, if at all possible.