Hi-
I am not diagnosed yet with CH as I am seeing a neuro in one month.  But based on symptoms I have been having for several months. I feel that CH is what I am experiencing.  This is new for me as I am 48yr old male. Sever pain same times couple-several nights a week.  Left side neck head and behind the eye. Nothing stops the pain that can go 45m-3 hrs. Guess the good news is I never had this for the first 47 years of my life.  I feel for all of you, and may need your guidance and support.

;)

My immediate reaction was: hope you are seeing a headache specialist rather than a geneal neurologist.

Two reasons: 1. gen neu. have meager training/experience witwh complex headache disorders although we assume they are the folks to see. So, encourage a few direct questions with the doc to ask about his educaton/experience, especially with Cluster.

2. This comment reinforced by the possible onset of Cluster at your age. Usual onset is from late teens. At your age it's especially important to have a doc who appreciates that there are many disorders which MIMIC Cluster, but which are not headache disorders.

If any concern about this doc's background consider the following:

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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The issue of Cluster MIMIC headache:
(read and consider bringin the topic up with any doc you finally consult)..

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Link to: cluster-LIKE headache:

IN: "Medications, Treatments, Therapies --> "Important Topics" --> "Cluster-LIKE headache"
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While these cautions may concern you, a third consideration is that the rate of Cluster in women is so very low that we still have too many docs who simply don't understand the potential and even deny the possibility of Cluster in women! So, careful screening of your choice is important.

Hi RTJ and welcome

Echoing Bob's comments about it being important to see a headache specialist and not just a neuro as most neuros (and GPs) have insufficient skills and experience of complex headache types, so will often not give you the right diagnosis or treatment plans.

This is essential as until you get the right diagnosis, no matter what it is, you cannot get the right treatment.

This is something we've all gone through, starting with "headaches" and working through the hoops to get to where we are.

Do keep a headache diary and document when you get them, so time, day, duration, symptoms, pain level, possible triggers, etc. This can help with the diagnosis plus help you to identify what triggers them.

Thanks to both.  I have started a diary.  Also my GP feels it is cluster but wants to rule out neurological issues.  I am somewhat fortunate as I should be able to get decent care here in the Boston, MA area.  I want to rule out any vascular issues first.  TY all again!!

The standard criteria for diagnosing CH can be found at - START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE.

What makes it hard to diagnose is not just confirmation of the symptoms but in ruling out all other possible causes since there are quite a few other things that can result in CH symptoms which are not CH, hence the headache specialist recommendation.

Hello RTJ :) welcome to the hurt locker!  I would advise to get your vitamin D lvls checked with your normal doctor before seeing a specialist and then bring the results with you.  Try Batch's D-3 regiment.  I came a month ago with a new cycle and after being on the regiment for a about a week the attacks tapered off and I have continued to use the regiment and have been pain free since.  It may or may not work for you but I had my vitamin d lvls checked and they were below normal.  Batch I absolutely want to kiss you, just an FYI. 

Something else to look into is O2.  Not sure if the other post mentioned anything about it but it can abort an attack.  For me my insurance does not cover tanks of oxygen and they are far too expensive for me without insurance.  One thing you can try that I do is a hikers/climbers O2 canister for high altitude climbing.  It's the next best thing in my opinion.  You can find a 5 pack for $50 on Amazon.  Breathe normal and use one second burst for 5 mins or so to help abort the attack.   I hope you find some relief.  We all feel your pain ❤️ You are not alone.  I prefer more natural remedies that actually work as opposed to Rx.  As you search around you will find people use a lot of different methods.  Try the natural approach.  It's safer for your body in the long run.  Get you D levels checked soon and get the right diagnoses and then try batch's regiment