I've been reading about cluster headaches and most of my symptoms match up.  However, some of the "major/common" symptoms do not match mine.  One of my docs said that I have cluster headaches while another said he thought it might be allergies. 

Thankfully, from some of the stories I've read here mine do not seem quite as severe as, I typically do not do the dance or bang my head on the floor/wall.  However, I have bitten the side of my hand to the point of breaking the skin in an attempt to distract myself from the pain.  Also, I have nearly broken my hand punching myself in the head to distract from the pain.  My headaches are always on the right side located at the base of my skull.  At the beginning of each attack my right eye begins to "twitch" and close.  I can't focus or think straight.  They typically occur in the mid to late afternoon or early evening.  They come on quickly and usually last about 45 minutes -2 hours.  Sometimes, if I'm lucky, it is just a "shadow" headache which is a much less severe form of the same headache.

Light does not really bother me yet, I do prefer to be in a dimly lit or dark room.  Sound seems to be more of a nuisance than light.  I don't "dance" but I do tend to rock back and forth and groan in pain.  For some reason, this seems to help me cope.  Also, I have never been woken from sleep by an attack.  In addition, I have random pierces of blinding pain at the back of my eyes.  I never thought these were related as they do not occur together with the headaches and they only last a few seconds when they do occur.

As far as I can remember, they have been occurring for the last 5 years.  I think it has mostly been during the spring time (hence the allergy diagnosis) yet, I'm not 100% sure of that.    Any help or advice would be greatly appreciated.

Whitfield,
I've had CHs now for 11 years and have noticed that my headaches "morph" each time a cycle comes around. The major pain (behind my right of left eye) is the same but I have smaller pains in areas that do not occur in each cycle. On the left of page there is a tab that says "cluster quiz". Click on the tab, take the quiz, and see what it says. Also, are you seeing a general doctor or a neurologist and where do you live at? There are many members here that might be able to refer you to a headache specialist in your area that can diagnose you correctly.

I have only seen a general physician so far.  I live in Kennesaw, GA (Atlanta area).  From the cluster quiz I believe that I do have cluster headaches.  The only things that don't match up are that the headaches don't wake me up and they are at the back of my head, not the front.

Whitfield,
Rarely do I have have a CH that wakes me up at night, maybe 1 or 2 a cycle at the most. As far as having the pain at the back of your head, I haven't heard of that before but I'm not an expert. Some of the more experienced members will chime in here soon and help you out, as well as refer you to a neurologist in Atlanta. If no one gives the name of a doc here, go over to the medications, treatments section and ask for referrals there.

Whitfield,
Here is the link to the O.U.C.H. websites' list of doctors.

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

Also, don't know if you'd be able to attend or not, but we have our annual convention in  Nashville this year.  Here is the link to that information.

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

Carolyn

There are so many varities of headache that sorting thru to a correct diagnosis is not a self-help effort. Compounding the issue is the presence of a number of disorders which mimic Cluster but which are often quite serious.

The majority of docs, and this includes neurologists, have meager training in headache. These factors lead us to strongly recommend that you work with a headache specialist, if at all possible. (It may take more $ and be inconvenient, at times, but both our folks and research describe people taking years and multiple docs to find what is going on.)

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. 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. 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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And avoid the temptation to use OTC pain meds: they compound headache issues. Avoid alcohol for now and, above all, don't get into the snare of self-diagnosis and self-treatment.