Hi my son (age 22) is currently in hospital with what the docs suspect are cluster headaches. He got a headache 3 nights ago, took painkillers and went to bed, was woken up in the morning with HUGE pain in his head, it eased a little around lunchtime and by 3.30pm he was crying with the pain and thats when he called me. Doc took one look at him and sent him to hospital as a precaution. He's had an MRI done and that was clear. His symptoms are basically....of course a huge pain, in left temple and along the side of his head just past his ear. Swollen red eye that is streaming, very little balance and cant manage basic coordination tasks like touching docs finger then his own nose. 3 days later he's still in pain although not quite as much. The pain hasn't completely gone but changes in severity. He's more comfortable wearing sunglasses as the light bothers him. He says the pain is worst at night and in the early hours of the morning it is making him vomit too. They tried him on O2 but it didnt help so they took it off after 15 mins and havent tried him again since. The docs say they strongly suspect cluster headaches but were concerned as they say that wouldnt explain the coordination issues he was/is having.
I'm not asking anyone here to diagnose him but i would like to know if others have suffered the coordination issues with their Clusters and some advice on what we should/could now be expecting from the medicos and the future. We are in England by the way so I'd especially love to hear from anyone with experience of the NHS system with regard to clusters.
Would appreciate any and all replies/advice/suggestions
Thanks

This does not taste like classic Cluster--BUT there are dozens of headache disorders and many other problem which appear to be Cluster.

I'd strongly encourage you to find a headache specialist to work on the diagnosis. If you have a neurologist on board now, ask about his experience with headache. Both our collective experience and medical literature show how poor is the education and experience (in headache) of many neurologists.
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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.  Call 1-800-643-5552; 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.

@ Bob, Thank you but with us being in England and subject to NHS treatment, it makes doctor choices somewhat less likely...you get sent where you are sent and get very little choice in the matter.

Enigma44 wrote on Feb 26^th, 2010 at 9:22pm:


That's not exactly what we've heard from some other english CH'ers on this message board. I believe some have been able to see the top specialist in the country, if not the world, in fact. Stay tuned, if none of your english compatriots see this and contribute a response here soon, I'll look into rounding someone up.