Brian, when a new, first time, picture of Cluster is emerging it's common for the symptom picture to be vague, changing, incomplete. It may take months, even a couple of years, for a firm picture to develop. So, this early period of one which requires patience and tolerance as you wait to see....

IF you have Cluster, there is no cure but we do have have decent ways of controlling. Most folks end up treating a chronic disorder but still having a good life.

Working with a doctor who has knowledge/skill with Cluster is essential. So many docs lack adequate education/experience. Having a heart-to-heart with your present doc is important: does he have the skills or should be seeking a headache specialist?

Many of us end up educating our doc on how to treat us--and if you are blessed to have a doc with a receptive ego, this can be a good arrangement, if you don't have the option of finding a headache specialist. (NOT any general neurologist!)
==
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.
====
Educating yourself is essential. Start with the buttons, left, with the OUCH button first. Then, print out the complete articles (next and the PDF file below).
--



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]
===
The PDF article is worth printing for your current doc and using as a discussion  tool with any doc you see.
===
Assuming that you do have Cluster (not yet solidly established diagnosis, understand), the Prednisone will instantly stop them--BUT it should not be used for more than 10-14 days. AT THE SAME TIME, a long acting preventive should be used (the PDF article) to kick in to give long term prevention.

There is much more good medical literature we can feed you as you begin to understand your situation, ask focused questions, and get established with a skilled doc.
===
Finally,
Please tell us where you live. Follow the next line to a message which explains why knowing your location and your medical history will help us to help you.

Cluster Headache Help and Support › Getting to Know Ya › Newbies, Help us...help you

You can add your location by editing your profile. CP Member --> profile
BUT, Please!, don't post your messages at this location. They won't get the attention you want: use the appropriate sections which follow.

WELCOME,

AS u have found out these clusters may require a little more than "nipping it's buds". U you the nukes.

You can go to Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or and read. click on the about  link on the left.

You better come ready to play...
Coach Bill

Yeah, that was the pain scale I usually use. I'd say my worst are about a 5 on the KIP scale and most are about 2-3. Thank you, I've been trying to soak up all I can and have been keeping a diary for quite awhile. Hopefully I can see someone this week about them.

menxili wrote on Mar 1^st, 2012 at 4:01am:


I know, an oxymoron. But I use such a category to describe low KIP hits and shadows. Blessings. lance

Yeah Mark I was like you in my teens. If I felt the early symptoms of an attack and could get to sleep, I could even dodge an attack. Chewing several aspirin would usually take care of them. Mine "blossomed" in my 20's. The good news is the 10's never got worse then 10. As you accept the fact that you have CH, and become rigid in your discipline to treat them, you find you suffer much less!

Joe