Oh my gosh, what a wonderful board - full of ideas - and support.  I can't believe it.  When I tell someone that my husband has cluster headaches, they associate it with a migraine.  No one understands.

My husband has had ch for 6 years.  Right after we were married, they became chronic.  We are very fortunite that he has a great job and good benefits.  He was able to go on short term disability with his first big round of prednizone.  He went 6 months without a ch!  But they are back now, and he is trying so hard to work and do another 8 week prednizone treatment.  Hopefully, it will be easier this time around.

The things that I wonder about is - do they ever really go away?  What do you do to be most helpful?  Who supports YOU?  What do YOU do to relieve the stress?

I am married to the most wonderful man in the world, and would do anything to help him feel better, but there just doesn't seem to be anything.  The medications seem to effect his "go get em" (and mine, too).  I can deal with that most of the time, but it really gets to me when he still has ch. 

It would be so helpful for me to hear from someone that knows what I am talking about.

<3

Melissa

The first step--which will benefit both of you--is to working with a doc who knows headaches. Most docs have little effective education/experience. If you have the option:

LOCATING HEADACHE SPECIALIST

1. Search the OUCH site (button on left) for a list of recommended M.D.s.


2. 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.

3.  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.

4. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or On-line screen to find a physician.

5. 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.

6. 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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Has he been given meds other than Prednisone? He should be on med which work to reduce frequency & intensity--for long term use. If not on such meds this signals his doc is missing the mark, seriously.
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Curr Treat Options Neurol. 2011 Feb;13(1):56-70.
MANAGEMENT OF CHRONIC CLUSTER HEADACHE.
Leone M, Franzini A, Proietti Cecchini A, Mea E, Broggi G, Bussone G.
SourcePain Neuromodulation Unit, Department of Neurology, Headache Center, Carlo Besta Neurological Institute Foundation, Via Celoria 11, 20133, Milano, Italy, leone@istituto-besta.it.

Abstract
OPINION STATEMENT: Primary cluster headache (CH) is an excruciatingly severe pain condition. Several pharmacologic agents are available to treat chronic CH, but few double-blind, randomized clinical trials have been conducted on these agents in recent years, and the quality of the evidence supporting their use is often low, particularly for preventive agents. We recommend sumatriptan or oxygen to abort ongoing headaches; the evidence available to support their use is good (Class I). Ergotamine also appears to be an effective abortive agent, on the basis of experience rather than trials. We consider verapamil and lithium to be first-line preventives for chronic CH, although the trial evidence is at best Class II. Steroids are clearly the most effective and quick-acting preventive agents for chronic CH, but long-term steroid use carries a risk of several severe adverse effects. We therefore recommend steroids only if verapamil, lithium, and other preventive agents are ineffective. In rare cases, patients experience multiple daily cluster headaches for years and are also refractory to all medications. These patients almost always develop severe adverse effects from chronic steroid use. Such patients should be considered for neurostimulation. Occipital nerve stimulation is the newest and least invasive neurostimulation technique and should be tried first; the evidence supporting its use is encouraging. Hypothalamic stimulation is more invasive and can be performed only in specialist neurosurgical centers. Published experience suggests that about 60% of patients with chronic CH obtain long-term benefit with hypothalamic stimulation.

PMID:21107766[PubMed]
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See the PDF file, below.
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Since there is no cure, learning how to cope is essential. When you have time, look and reflect on:

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

You will get lots of great advice and support on this board. None is as important as what Bob gave you. For some, CH does go away, we don't know why. Some in their 70's are still getting hit. So it's probably a long tetm, if not a life term issue, so the sooner you get hooked up with a Headache Spcialist Neurologist, the better. GP's and even your garden variety neuros do not have the esperience or background to effectively deal with CH.

My votes, in order, after 33 years of danicng with beasty:

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

Oxygen, used correctly, is my most consistently effctive abortive. Typically pain free in 6-8 minutes. But it must be used correclty or it will not work. A Non Re Breather Mask or a demand valve, a flow rate of at LEAST 15 LPM, started at the first sign of an attack.

A decent preventative medication. A med he will take daily to reduce the frequency and intensity of his attacks. I use lithium, Verapamil is the most popular and has the best track record.

Then visit our sister board for alternative treatments to mainstream medicine:

Clusterbusters.com

Thanks for supporting my CH brother. Supporters rock.

Joe

Thanks everyone for all your responses!  Last week I was a mess, this week is going much better! 

The more you learn, the better it gets!

Joe