Hi Mary and welcome. You've found somewhere where we all really understand the impacts of headaches, no matter what they are as all headaches can be horrible.

The most important thing which you are working on is to get an accurate diagnosis of what the headache type (or types as you can have more than one) is, this will lead to treatment which should include a preventive to cut down the number of headaches plus abortive(s) to kill off a headache if you get one.

Part of this process is to find a headache specialist as GPs and even most neurologists just don't have the skills and experience to work with complex headache types.

With CH it is simply not possible to sleep you just don't have a choice, however when CH first starts it can take a while, weeks or months, for it to settle down to the classical CH symptoms, so this might not rule out CH for you. But for some other headache types, like migraines, sleeping can be a great way to handle them (sleep is my best option for migraine).

Oxycodone is a narcotic pain killer and this is probably not helping you. If you use pain killers more than about 3 days a week or 9 days a month you're likely to be getting medication rebound headaches just from the medication itself. And it is quite possible that it isn't touching the pain (it won't if it is CH). You're also at risk of dependency issues too, which is all too easy even from just following a doctors instructions (been there myself so talking from personal experience).

Are you keeping a headache diary where you record details of each headache (when, where, duration, pain level, possible triggers, symptoms and anything else). This can help with the diagnosis.

I hope this helps. Good luck in getting your diagnosis.

The problem with diagnosing Cluster vis-a-vis other headache like disorders is that it's a rare disorder. Means that very few doc, even neurologists, have adequate education/training in treating it.

If at all possible, seek a headache specialist. (Note the last sentence in the following.
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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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Comes down to a trusthworthy diagnosis froma skilled doc before you get into the rat race of what treatments to use.

Mary M wrote on Jan 19^th, 2015 at 1:17am:

In the words of a wonderful woman, we're not doctors here but we're expert patients.

Do what you must to get a true diagnosis and let us know each step of your journey.

We'll help in every way we can.

Thanks, Max. Problem is on the weekends I do not check that email. I found a doctor that takes my insurance though and I have an appointment.