Hi there
So glad to have found this site, having been doing some research for my dad.  My dad was told he has 'parkinsonisms', which is not Parkinson's disease itself, but many of the symptoms.   His biggest symptom is a tremor in his jaw which is causing cluster headaches.  Or at least we've been told that's the cause - it's his trialgia nerve which is irritated and he's been in almost constant pain for weeks now.

He's seeing a Botox specialist soon, with the hope that if they can stop the tremor, they can stop the pain.  But right now he's at home, mostly just sleeping having been diagnosed oral morphine.  Horrendous to see him in such agony, telling us he just doesn't want to live.

Has anyone got any experience of this rather rare condition?  I can find very little online and it'd be great to hear from others who understand a little of this awful suffering.

Welcome to the site ExtraGrace. Your support of your dad is admirable. We're not doctors so no diagnosis can be offered. To me it doesn't sound like cluster headaches. Is your dad seeing a neurologist that has special training with headaches? Most neurologists and/or GP's do not have much training in that field.

Hi ExtraGrace and welcome

I agree with Bob, the constant pain symptom sounds unlike the classical CH symptoms, but we're not doctors, so you need to work with a headache specialist to get a definitive diagnosis which will lead to the best treatment for him.

Hope you get answers soon and do let us know how you get on.

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. 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.

4. 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.

5. 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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WHY A HEADACHE SPECIALIST IS RECOMMENDED


Headache. 2012 Jan;52(1):99-113.
Cluster headache in the United States of America: demographics, clinical characteristics, triggers, suicidality, and personal burden.
Rozen TD, Fishman RS.

THERE REMAINS A SIGNIFICANT DIAGNOSTIC DELAY FOR CLUSTER HEADACHE PATIENTS ON AVERAGE 5+ YEARS WITH ONLY 21% RECEIVING A CORRECT DIAGNOSIS AT TIME OF INITIAL PRESENTATION.