Hi all. My parter suffers with cluster headaches. The doctors are clueless and we are on the one millionth lot of tablets. He is suffering from one to four attacks a day and is to the point he can not take any more. I don't know what to do and feel so so helpless our quality of life is more or less non existent due to these poxy things taking over everything. Does anyone have any advice or recommendations of what works best please. We will try anything.

Hi and welcome. You've found somewhere where people understand just what you're both going through as we all either have CH or support someone with it.

First off you need to find a doctor who has the skills and experience to work with a complex headache like CH. Most GPs and even many neurologists just don't have what is needed to work with CH, so you really need to work with an experienced headache specialist.

They will need to confirm the diagnosis of CH as it is possible that the other doctors haven't got it right, which could explain also why various medications aren't working (it might not be CH) or it could just be that they are not prescribing medication suitable for CH or if they are, at the right doses.

With CH the first medication needed is an effective preventive which will cut down how many CHs he gets, this will typically be verapamil, lithium or topamax.

The second is medication to abort a CH when it starts which is typically oxygen (read all about it at START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE) and injections or nasal spray imitrex (sumatriptan / imigran). Both can kill off CHs in minutes.

Energy drinks like Red Bull, Monster, etc. with caffeine and taurine can help with a CH too, just have him drink it quickly when one starts and it'll help reduce the intensity and duration of the CH.

Also read up on how many of us are using vitamin D3 as a preventive, I've gone over 3 years CH pain free plus it helps over 80% of people.

The combination of cutting down how many CHs he gets and being able to kill off any CH that get through can make a massive difference.

What medication is he on now and with what doses?

Also read everything you can find here, there is a lot of advice to be had, then ask all the questions you can think of.

Wandering around in the dark is not the way to find home base! Let's get organized....
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It will help us to direct you to good sources of assistance if you will tell us where you live (city & state, if U.S. or country). At the Home page: Help button-->Edit & Profile --> Location. (This will add your location, just below your name, every time you post a message.
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Self-diagnosis an self-treatment is no safe.
First, you need to find a doc who knows Cluster so that it's clear what is the source of the headaches. Without that basic infro. finding a good treatment is a random search. So,
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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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Give us an outlline of the headache experience; what have you tried re. getting treatment & outcomes (and include medication/dosing/during of use) which you have tried.