Ok, so this is my second time taking steroids to stop my cluster.  Last year i started the steroids half way through my cluster (which last for 4-6 weeks without treatment) and the cluster was stopped. This year I started the steroids at the onset of the cluster.  They seemed to work as long as I didnt drink any alcohol.  I started at 60mg for two days, 50mg for two days and then decrease 5mg every day.  When I reached 30mg a day, my headaches came back.  I reverted back to 35mg which I have been taking for four days now, no headaches.  How long do I stay on the steroids?  What side effects should I really be concerned about in the short term, and in the long term if I am taking steroids 5 weeks each year? Should I have started at a higher dose and tapered off slower?  Are calcium channel blockers a safer and effective treatment? Why can I still not drink alcohol if all other triggers seem to be kept at bay.  any advice to all these questions would be extremely helpful.  My doctors dont seem to be able to advise me well. Thanks!! 

Hey SM,

Man that's lousy that the docs aren't offering up good advice on the 'roids.

For now I'll assume we're talking abut prednisone here.

Here are a couple things I know:

The return of the attacks (for me with a vengeance) is very common upon taper down.

A sustained high dose of prednisone is incredibly dangerous in terms of the risk of severe, permanent side effects. I'm no medical professional, but if not tapered down from after 2 days or so at the high dose, it is easily the most dangerous drug I know of that some of us CH'ers use.

Is 35 mg a high enough dose to be dangerous like a 60 mg dose? Sorry I do not know, but I think it's a very good thing you're looking into this and I hope you'll find some good reliable info on it.

You just plain have to avoid alcohol entirely when in an episode. Well IMO anyway.

People around here have various amounts of success with other prevent drugs such as Verapamil, Topomax, Lithium, and once in awhile I see someone report success with old school old fashioned calcium channel blockers. They never did jack for me but they sure seemed a helluva lot safer than sustained prednisone.

Sigh, it's such a crazy mixed up world, here we are poisoning the heck out of ourselves with these toxic drugs with sketchy results when there is a non toxic plant that can just be eaten that is potentially much more effective! (this does have the attention of Harvard Medical researchers et al. BTW)

Here's a recent Newsweek article on that subject:
START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Also, when folks start piping in here about O2 etc., that's worth taking very seriously.

Oh man, that doesnt sound like such good news.  What side effects do people find when they stay on prednisone for a month or so?  If I take 35mg a day I am headache free but as soon as I go to 30mg I am getting them once a day (my regular).  O2 wasnt good for me.  I think i had the wrong mask,but it was also hard because I had to be home and I had to start it asap. 

Generally the steriods are taken for a short term on a decreasing dosage while you are ramping up with the other prescibed prevents (lithium, verapamil, etc). It isn't safe to stay on steroids for long periods of time, but they will work as a block while your other meds kick in. Then you use the 02 to abort any CH's that break through.

Key statement: you don't have a doc who "knows". Try and find one who does.....
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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. 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.
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See the PDF file, below.

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