My name is Steff, I live in Omaha, NE with my boyfriend and "hopeful-soon-to-be husband" of 2 years.  Though I am not a cluster headache sufferer and don't claim to know their pain, Rob (my bf) is a sufferer, chronic sufferer to top it off!  He has had them for about 3 years.  He has been to numerous specialists from "Headache" specialists, to ear nose and throat and neurologists.  He has even been trying chiropractic treatment, with no relief of the headaches.  We will be trying scupuncture next.  If that is unsuccessful, we may consider the last resort, deep brain stimulation.  It is still experimental for Cluster Headache sufferers and is shown successful in people with Parkinson's Disease.  He doesn't have the time or patience to research and join forums such as this one, so I am being proactive in finding every possible treatment.  We are desperate for help!

None of the brain surgeries have a well established track record yet. Suggest you exhaust the well established treatments before making this jump.

It's essential to work with a headache specialist. Many of our folks have received poor treatment because so many docs don't have training/experience with complex headache disorders.
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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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See the PDF file, below.

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Cluster headache.
From: Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or (Orphanet Journal of Rare Diseases)
[Easy to read; one of the better overview articles I've seen. Suggest printing the full length article--link, line above--if you are serious about keeping a good medical library on the subject.]

Leroux E, Ducros A.

ABSTRACT: Cluster headache (CH) is a primary headache disease characterized by recurrent short-lasting attacks (15 to 180 minutes) of excruciating unilateral periorbital pain accompanied by ipsilateral autonomic signs (lacrimation, nasal congestion, ptosis, miosis, lid edema, redness of the eye). It affects young adults, predominantly males. Prevalence is estimated at 0.5-1.0/1,000. CH has a circannual and circadian periodicity, attacks being clustered (hence the name) in bouts that can occur during specific months of the year. ALCOHOL IS THE ONLY DIETARY TRIGGER OF CH, STRONG ODORS (MAINLY SOLVENTS AND CIGARETTE SMOKE) AND NAPPING MAY ALSO TRIGGER CH ATTACKS. During bouts, attacks may happen at precise hours, especially during the night. During the attacks, patients tend to be restless. CH may be episodic or chronic, depending on the presence of remission periods. CH IS ASSOCIATED WITH TRIGEMINOVASCULAR ACTIVATION AND NEUROENDOCRINE AND VEGETATIVE DISTURBANCES, HOWEVER, THE PRECISE CAUSATIVE MECHANISMS REMAIN UNKNOWN. Involvement of the hypothalamus (a structure regulating endocrine function and sleep-wake rhythms) has been confirmed, explaining, at least in part, the cyclic aspects of CH. The disease is familial in about 10% of cases. Genetic factors play a role in CH susceptibility, and a causative role has been suggested for the hypocretin receptor gene. Diagnosis is clinical. Differential diagnoses include other primary headache diseases such as migraine, paroxysmal hemicrania and SUNCT syndrome. At present, there is no curative treatment. There are efficient treatments to shorten the painful attacks (acute treatments) and to reduce the number of daily attacks (prophylactic treatments). Acute treatment is based on subcutaneous administration of sumatriptan and high-flow oxygen. Verapamil, lithium, methysergide, prednisone, greater occipital nerve blocks and topiramate may be used for prophylaxis. In refractory cases, deep-brain stimulation of the hypothalamus and greater occipital nerve stimulators have been tried in experimental settings.THE DISEASE COURSE OVER A LIFETIME IS UNPREDICTABLE. Some patients have only one period of attacks, while in others the disease evolves from episodic to chronic form.

PMID: 18651939 [PubMed]

Hi Steff,

Glad you came here, that was a smart thing to do, because folks researching and asking questions here typically start finding better ways to relieve CH.

I'm also happy to see that you've received real good advice already in this thread that could lead you in the right direction. All of us replying here are CH'ers and we are NOT screwing around, we have very seriously sought out the most effective relief, have been successful, and we want to make sure others hear about it here.

We've seen some chronic sufferers that weren't being helped at all by the medical professionals get a lot of relief using the preventative clusterbusters protocols that ShaggyParasol recommends checking out, as do I. Here's a video talk on the subject by one of Rob's brothers in CH:Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

I will also concur that the oxygen info link on the left of this page is an immediate must read.

I'm a big fan of accupunture for various ailments, but not CH - we haven't seen much in the way of results with it.

We're pulling for you and Rob - there is real hope! IMO - try the powerful, non toxic approaches outlined here before even thinking of submitting to the knife.

Hey Steff,  what a wonderful girlfriend you are!!  Looks like everyone else has stepped in and offered some great advice.  I agree that oxygen is definately worth a try - and there are plenty of good meds to try before resorting to surgery!  Would be great if he'd take a peak over here - no one knows the pain like another clusterhead!!

He's very lucky to have you! 

Wishin' you both all the best,

Kate

Just a "hey" from me, and welcome. Check your emails when you get a chance. lance