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

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Have your son take this quiz.

Get a good neurologist or pain management specialist to be properly diagnosed.

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. 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.

5. 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.  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. 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.

Thanks @ Chad. He took the quiz already, results 'suggest' clusters although some questions are hard to answer when this is the first time this has happened so I'm not sure

@ 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.

Hang in there...

You may want to check with the folks at OUCH UK at START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

There's a lot of experience there...

Take care,

V/R, Batch

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

@ 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.

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.

This material is a bit messy because it's a collection of elements from different messages--but....
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Message: "Dyno", Tenby, Wales, UK, Aug 9, '09:
[Bob-excludes Wales per Dyno]
looking at their website it looks like a better alternative  START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Why not ask to see the top man in the country - Dr. Manjit Matharu at UCL. Under Patient Choice - look at the link below - you have the right to choose who you see.

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and this - copied from the OUCH(UK) website

Quote:

You can ask your GP to refer you to one of our hospitals for treatment
Central to the government’s healthcare policy is that patients should be given the opportunity to be more involved in making decisions about their healthcare. If you and your GP agree that you need to be referred to see a specialist, then you have a choice of at least four local hospitals or clinics. Since May 2006, that choice has been extended. You can now also choose to go to any Foundation Trust in the country, including UCLH. Whether you’re from Cornwall or Camden, as a patient you now have the right to choose UCLH. You can ask your GP to refer you to one of our hospitals for treatment.

[Source: UCL website]
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City of London Migraine Clinic [and other types]  START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE
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Suggest you contact OUCH-UK for assistance: wonderful group.

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