It would seem that our doctors are not 100% sure it is cluster headaches now, and we are awaiting a neurologist appointment. MS has been mentioned but so has a few things, so we are trying not to jump to conclusions. It sounds like Cluster headaches to us, but we are not the experts. He had one really bad attack where I had to call an ambulance because he collapsed, when he finally came round after morphine he said the pain was like being stabbed in the eye and the pain running to the back of his head and down his neck. Since then he has had a bad (but manageable) headache always centered around his right eye. CT scan and lumber punctures were clear. Never got a MRI scan. He was put on amitriptoline (hope thats spelt right) and is now on Solpadol and Topamax.
I have never seen my husband so delicate.
Any advice/opinions gratefully recieved.
Thankyou
Gill
x

Try the cluster quiz on the left side of the page. Good place to start.

All the best

NOT just any neurologist! Too many of them, as revealed by our collective experience and research reports, show that many of them have had little training and less experience dealing with complex headache disorders.

If you have time and the option, look for someone with experience.
--------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.

Hi Gill,

Being a new CH myself, positively diagnosed just yesterday, there isn't really much that I can add, other than that you should do your best to always be by his side. Your very existance next to him is what he needs as much as he needs the best medication.

Pls. tolerate his mood swings. His biggest fear would be to lose you at this point in time, regardless of his grumpiness. 

Good luck to the two of you.

Ashraf

That's the last thing my missus want's. She doesn't want anybody within spitting distance when she's having an attack.    

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My fault.. Next to him "Metaphorically speaking"..

Thanks Dyno..

It is great that Gill cares to this extent about her hubby.. I know wives who sleep through the whole ordeal, let alone sign up for a website and research..

Keep it up Gill.. He must be one hell of a great husband, coz you're one hell of a great wife..