You need to see a headache specialist.

        Potter

Amy, you are dealing with a couple of issues:

1. When Clusters are first developing the signs & symptoms are often vague, changing, inconsistent with the standard diagnostic description. It's possible that a new case might take months to several years to settle down into a stable picture.

2. There are dozens of types of headaches some of which may appear to be clusters but which arise from some other disease/disorder. Sorting thru the options takes someone with skill/experience.

If you have the options, suggest you find a headache specialist. Far too many docs, even neurologists, lack training and experience in this area, leading some poor souls to wander around for years trying to find out what's going on.
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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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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]

Welcome to the board Amy, you've already been given some excellent advice. Mine started some 32 years ago and they were not at all classic CH attacks. Wasn't until I hit 20 they started to develop the classic CH patterns.

But like Bob said, there are hundreds of headache types, and meds helpful for some are worthless for others. Best to get the legwork done now to confirm what ya got before it does develop into anything more significant. I know  when I'm getting hit hard by CH attacks I can't reason enough to make sensible decisions about anything!

Good luck on your journey.

Joe

Welcome to the board Amy. I remember oh so long ago that when mine started they weren't that bad.
I would just lie still and they would go away in around 15 minutes.

Like Joe said, the next couple of times they started gettting worse. Why don't you try chugging down a red bull and see if it helps when you first feel it starting. It sounds like clusters to me but until you see a neuro, you can't be sure.

Hi Amy,
Welcome! I am a newbie as well. I lived with migraines nearly all my life and this year my glucose, heart rate/rhythm, and blood pressure went haywire. In January, I had an episode that seemed like a combination between a stroke and an MI.  I was hospitalized and put on many drugs.  It was suggested that I have a pace maker implanted and I was tested for brain abnormalities as well.  Over the next couple of months I recovered and thankfully did not have the pacemaker implanted.
In June I took a trip to help my daughter with my newborn grandson and I began having short lived pains in the left side of my head and eye much like you described. I had four or five a day and treated them by drinking coffee, spraying my nose with antihistamine, putting my face on the air conditioner vent, and using an ice pack. The pain was intense, but short ,only about 20 minutes and bearable. Around the beginning of June everything changed and I was getting KIP 8-10s daily and 3 attacks at the same times every night. I had a normal MRI of the brain except for a small area of stroke and compression of my spinal cord at C3-C7. The neurologist was not concerned except for the cluster attacks. I was exhausted and hadn't slept for weeks. He began treating me for CH and here I am. So for me, it started with mild symptoms and quickly progressed.  Hope this helps!  lib
p.s.  You’ll love this group!

Hi Amy and Welcome!

I agree with all who suggested you seek a Headache specialist.  Your Doc may have been right years ago.  Best to be on the safe side and seek a Doc's opinion.  Keep a headache journal, looks like you have one or at least a good start on one and take that in with you when you go.

If you are diagnosed with CH make sure to request O2 therapy for your CH!!!  See the O2 info. on the left.