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Cluster Headache Help and Support › Getting to Know Ya › Newbies, Help us...help you

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Your history around docs is SO to be mistrusted, and no info re. the source of the Cluster Dx, leaves me with only one immediate suggestion: Find a headache specialist and get a good work-up.

There are a number of disorders which mimic Cluster, some of which are serious. Why a trustworthy Dx is essential.
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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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Hi, no I'm not working with a headache specialist at the moment - my GP is trying on me some tablets to prevent the attacks and has given me 3 weeks to see an improvement. If these tablets don't won't he says he's going to refer me to a neurologist but has already told me that he doesn't think they'll be able to help me any more as no one understands what causes the headaches.

Hi

I've just started taking Verapamil a week ago so don't really know if they're working or not at the moment - I had a really bad attack the day after I started them but do realise that they will take longer than a day to start working. In the past I've been on propanolol, which worked for a number of years - still got attacks but nowhere near as often but I suddenly started having a bad reaction to them.

I've also tried imigran and sumatriptan - both of which did absolutely nothing for the pain.

Hi Karen

Verapamil takes about 7-10 days to become effective, so a week is still early. Plus you'll normally start on a low dose and build up, with 360-480mg a day being common and some people needing up to 1000mg.

Do contact your UK based group too, they will be able to help you with getting good CH treatment on the NHS.

Good morning, Karen (it's morning here, anyway) and sorry to hear of your experiences with the beast. Here's the thing: unless you hook up with someone who really knows CHs, your treatment plan will probably not rise to the level needed. The dosage strengths we need are off the charts for "normal" people and docs tend to be hesitant to go that far. You don't mention what strength verapamil? Most docs want to level off at 240mg/day when 460mg seems to be our starting point. The same is true with the triptans. If it was a pill, no it won't act fast enough. And please explore carefully, taking notes, and not missing any detail on the use of energy drinks and high flow O2. You may find it the same blessed Godsend I did. Blessings. lance