I can't believe I never found this site before. I am 41 years old and have been suffering from CH since I was around 16. I had a severe injury to my right eye when I was 15 and when the headaches started, I thought they were related to the injury. Even the doctors assumed it was related. Interestingly, they were not as severe at that time and went away - or so I thought. 5 years later, I began having the headaches again but more severe. It seems I get them about every 5 or so years and each time they are worse than the last. I was never diagnosed and just dealt with the pain until about 8 years ago when I was sitting in my PCP's office dealing with another bout with the headaches and happened upon a pamphlet on headaches. I read the section on Clusters and OMG it was exactly what I was experiencing! When called in for my appointment, I handed the pamphlet to my PCP and said "THIS IS WHAT I HAVE". She was like, "oh, yeah, I think you're right". Idiots. So, like many of the posts I see on this site, I had to diagnose myself. Every single doctor I ever saw about these always acted like I was overreacting to a normal headache. Well, about 2 weeks ago the "monster" is  back. I guess I'm lucky I've went 8 years without an attack. Anyway, thought I'd share, sorry for the long post, and thanks to all of you who run this site and share your knowledge.

Your experience of getting a good Dx is very common and reflects the low level of education received by docs on headache. Research and our collective experience mirror your trip. Now, you start learning.

First, a good headache specialist--not any neurologist! They often lack training.
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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. 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.

5. 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.  Call 1-800-643-5552; 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.
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Start learning by exploring the buttons, left. Print out this entire article:

 
Cluster headache.
From: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE (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]
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As questions emerge for you, keep posting!

Thank you Bob for the info - this is very helpful. I have an appointment with a neuro at Cleveland Clinic in Ft Laud next week - we'll see what he's like. In the meantime, I can review the list per your message. Currently, I'm trying to get Imitrex nasal but my insurance company is giving me a hard time (surprise surprise). For now, I'm taking Tylenol, Ibuprofen and a sleeping pill to knock me out until it's over. Seems to be working so-so for now. It's really the sleeping pill that's saving me.

Your doc may have to intervene with ins. to get coverage; that's a common issue here. See the OUCH site (left) and some guidance for dealing with this issue.

Here are lists of the current therapies for CH. IF you get this diagnosis (ch) your doc should be using some meds from this listing. In the Rozen article, look for zyprexa (olanzapine) as an effecstive abortive, in convenience of a pill, as an alternative to Imitrex. Some of us have had excellent results with it.
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START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Here is a link to read and print and take to your doctor.  It describes preventive, transitional, abortive and surgical treatments for CH. Written by one of the better headache docs in the U.S.  (2002)
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Michigan Headache & Neurological Institute for another list of treatments and other articles:

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE


 

Definitely look into the oxygen info info on the left of your screen.  Sorry it took so long for you to find out what you are dealing with, but at least now you are where you can get the info you need to take with you to the doc.

If you want my advice, stay off the OTC pain killers.  They won't touch CH, and will just eat out your stomach and kill your liver and kidneys.  I used to take them by the hand full, but it did nothing for the HA.

sorry you have to deal with this now, but It will go away.

Jerry

Yeah, what he said! ;) Be careful with the OTC meds, they do so much damage to the internal organs and don't really help. When you see your neuro, discuss a 2 pronged approach.

1: A good prevent strategy. Amed you will take daily, while on cycle, to reduce the number and intensity of your hits. I use lithium, verapamil and topomax are both popular prevents. All take a couple of weeks to build up in your system and there's a lot of trial and error in figuring out the dosing. I use a 10-14 day prednisone taper to get me through the 2 weeks it takes for my lithium to kick in.

2: A good abortive. First line abort should be oxygen. I can baort in 6-8 minutes using oxygen. Read the link on the left to use it correctly. Imitrex injectables worked great but I hated the side effects. Oxygen has eliminated my trex useage.

For now, try chugging an energy drink at the first sign of an attack. Many can reduce a hit using those.

Welcome aboard!

Joe