Long term use of steroids is not wise and folks with other Dx who must be on them for long periods do have some serious side effects. It works well, as you understand, for sort burts to stop a CH cycle while getting on better long term preventive meds.

Having a real expert doc is critical. If you have not identified such a soul start here:

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.
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There are a few surgical procedures which are being tested but I don't have a sense that any of them are sufficiently safe and/or effective--but it's not an area which I monitor closely. This is why you need a real headache expert doc.

There seems to be a small percentage of CH'ers who can actually abort a cycle of CH with a short "Burst" of steroids. For the rest of us, they are an effective short term break from CH while we wait for our prevents kick in. Like you, I use lithium as my prevent. It takes about 2 weeks to reach s therapeudic level in my body. I use a 2 week prednisone taper to get me over the hump while I wait for the lithium to provide relief.

Like Bob said, prednisone is not a medication to play fast and loose with, but an effective componenent in an overall management strategy.

Joe

Just finished my steroid taper.  Verap in charge now.  Only a few light breakouts at night which I abort with O2. Hope the trend continues.

Steve G

Thanks everyone. 

Other info:  I have the chronic kind.  They stink.  They are exacerbated by sunlight, flashing lights, etc., so I pretty much live in a blacked-out house at night and do not go anywhere.  If prednisone might help that, then yippie; however, if it does not, then I guess I tried it.  The thing is that steroids make my heart race, jump, and skip beats bad so I hate them.  Also, I seem to be on the CH bonus program because I have atypical "trigeminal" neuralgia on the top branch-the cluster branch.  This makes it slightly sting to hurt all the time.  I also do have a good neurologist who has other cluster sufferers (some from out of state), but he thinks I got a "bum deal" with mine.

Say Ellenjoanne, could you also give me input on the pattern of your headaches, as in, what kip scale they usually are without treating them and with treating? how often and at what times are they happening?

Thank you in advance.

Any more people that their headaches has been stopped for long time when using steroids? I especially wonder if they stop shadowing, because I have consant (pressure on my eye on the side that gets pain, and electricity 'pinching' every now and then) which is annoying, very.