Hello all

Let me introduce myself. My name is Lars and I live in Seattle, Wa. I am 64 years old and am experiencing my second bout of cluster headaches. About 7 years ago, I was diagnosed with Horner’s syndrome and along with this came severe headaches involving my left eye. While in some cases it is possible to diagnose a cause, in mine, there was not. Working with a neurologist using Depakote  and then Lithium, they finally went away (just in time too as the Lithium gave me a tremor that was unwanted). I thought that that was that and had no inkling that they could reappear.

To bring you up to the present, my wife and I took a trip to  Vietnam in January and while there I began experiencing headaches behind my eyes every time I coughed during the time that I had a cold. The cold went away but the headaches remained. They continued at a low level til my return to Seattle in February.  As they had gone on for several weeks and I feared some tropical disease, I scheduled an appointment with my PCP. The night before the appointment I was awakened at 2:30am with a headache that was 6-7 on the scale around my left eye. This went on for about 2 hours. My PCP was very concerned and ordered an immediate MRI which was negative for other possibly more serious sources for the pain. These headaches have continued tho the times of onset have varied, sometimes to 4:00am and sometimes to 6:00am. During the last 3 weeks I have traveled for  work to the east  coast so some of that could be due to the time zone change. Sometimes the  attacked now has lasted 4hrs.

I am so glad to have found this website for the information and support that is offered. About 8 days ago I started the Vitamin D-3 regimen and it seemed to be helping until I flew home. Boy was that a set back. Last night was the first one in 4 nights w/o being awakened at 2:00am with a level 7 headache. Hope springs eternal. It is interesting that this time the way it has occurred is so different. While the overwhelming pain is around the left  eye, it has also occurred behind and around the right eye, the right eye brow, the right temple, the left  temple, the jaw, the left side of the face, and often bilaterally in the frontal area of my head.

Tomorrow I see both my PCP and the neurologist I saw last time. I will seek to get the blood test for my D-3 levels and hope that  tonight continues the trend if  one can call it that from last night. I will continue to check this site and use it to seek and give support. Thanks all

There are two sufferer recommended docs in the Seattle area, docs other CH'ers have used who are familiar with CH and how to treat it:

Seattle:
Dr. Sheena K. Aurora
Swedish Headache Center

Dr. Sylvia Lucas
Neurology Headache and Multiple Sclerosis Clinic at UWMC

If your doc is not familiar with current treatments on CH these might be an option. Wishing you some pain free time soon.

Joe

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
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Onset of a new Cluster picture at you age changes the picture somewhat. Late onset may signal one of a number of disorders which mimic Cluster but which are not true headache disorders.

The diagnostic task in such situations demands a doc with deep knowledge and skills in headache, something often/usually lacking in primary care docs and general neurologists.

If at all possible, find a headache specialist.
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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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And print out the following and drop on any doc you see. If he can't at least appreciate the potential, time to move on. If he's curious, might be a good sign for you.
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Link to: cluster-LIKE headache.
Section, "Medications, Treatments, Therapies --> "Important Topics" --> "Cluster-LIKE headache"

I have noticed that people refer to experiencing shadows and I'm not sure what a shadow refers to. Is it short transient spikes of pain that zings in and is gone? That is part of what I experience throughout the day with the intensity being mild and other times incredibly painful. Just curious as to what is meant by shadows.

Lars