Hi Jess,
And welcome, this is a new one to me, it's not presenting
classic CH symptons, after saying that there other headaches
that mimic CH. Your best bet would be to make an appoitment
with a neuro and take it from their.                                             

Hoppy.

Jess, your story doesn't sound unusual at all to me. Most of us only noticed we had something going on when the CHs became too painful to ignore. Few begin with full blown attacks right off the bat. They do, over time, settle into both a time pattern (hence the name clusters) and a pain level. If you are getting at these early, good for you. I am concerned though about the treatment. Is the beta blocker propanalol? If so I am not enthusiastic about its effects if you do have CHs. Also, it will prevent you from taking a more effective med like verapamil. Follow up, read everything you can especially here. And ask questions. God bless. lance

There ared no tests--chemistry, etc.--to test for Cluster. Diasgnosis is largely by exclusion--of competing "claims".

Very common with newly emerging Cluster for the symptoms to vary in location, degee/type of pain, etc. for some months before settling into a firm/clear picture. Important to eliminate the competing possibilities, what the medical literature calls "cluster-LIKE" headaches--headaches which mimic Cluster but which are not primary headache disorders. (See:
Link to: cluster-LIKE headache= IN: "Medications, Treatments, Therapies --> "Important Topics" --> "Cluster-LIKE headache")

AND roughly 50% of new cases turned out to NOT be Cluster.

Point being: patience working thru this stage until you have a firm handle on the diagnosis.

Most neurologists lack skill in treating headache and so find a speicalist is a good move.
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LOCATING HEADACHE SPECIALIST

1. 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.

2.  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.

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

4. 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.

5. 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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While working on a good Dx, read for you benefit:


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]
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Three sites which are worth your attention: medical literature, films, plus the expected information
about CH.

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or
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Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or Search under "cluster headache"
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Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or
  Full of articles, blogs, book: written by one of the best headache docs in the Chicago area.
  Worth exploring. The latest book is in e-book edition, $10; comprehensive and worth buying for
  a careful read.
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Welcome Jess. As you can see from the few posts in this thread, The Beast presents a different face to everyone. There is no one way these headaches attack at the start. I was one of the ones with Kip 10's early on. (There's a link on the left to the Kip Scale.) I was about 14 when I started mine. I remember walking down the corridors of my junior high school with my mother holding me by the arm, while I screamed in pain and fell every few steps because I couldn't see well with my eyes covered. After that, the headaches fell into line for me. A three-month attack in the spring and another in the fall. I spent a good deal of my youth -- roughly half of it -- either in excruciating pain, or tender from the after-effects and very tired from a lack of sleep. It didn't help my grades any. My family doctor had diagnosed me when I was 16 and since then I have seen a neurologist or two. They ruled out epilepsy among other things and I was tagged with the diagnosis of cluster headache for good. I tried oxygen, imitrex, ergotamine and a few things that made as much sense as tying my shoes backward. It wasn't until I started taking Verapamil that I got any relief at all. That was about 17 years ago now. It worked well until two or three years ago. (Be warned The Beast can change.) I'm out of my cycle right now, but I know there's another coming ... sometime. I just hope what I'm doing will mitigate it somewhat. There are things that will work well for some, but not others. What my headaches are like, may not be what yours are like. There will be several common aspects, though. Extreme pain will be one, if it isn't already. Good luck and best wishes. There is a lot of good advice to be had here, but not all of it will work for you. There is a lot of support here though and you are among friends who understand.