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!! 

First of all, you are asking questions which any doctor experienced with CH should be able to handle. IF your doc cannot, then please do your best to find a headache specialist.
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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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If that is not possible, please print out the following medical materials and give to your present doc. One of our collective strengths here is that we can provide good medical information which too many docs simply lack. Many docs, even neurologists, simply do not have education and/or experience with complex headache disorders.
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Cluster headache.
From: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE (Orphanet Journal of Rare Diseases)
[Easy to read; one of the better overview articles I've seen. Suggest printing the full length article--link, line above--if you are serious about keeping a good medical library on the subject.]

Leroux E, Ducros A.

ABSTRACT: Cluster headache (CH) is a primary headache disease characterized by recurrent short-lasting attacks (15 to 180 minutes) of excruciating unilateral periorbital pain accompanied by ipsilateral autonomic signs (lacrimation, nasal congestion, ptosis, miosis, lid edema, redness of the eye). It affects young adults, predominantly males. Prevalence is estimated at 0.5-1.0/1,000. CH has a circannual and circadian periodicity, attacks being clustered (hence the name) in bouts that can occur during specific months of the year. ALCOHOL IS THE ONLY DIETARY TRIGGER OF CH, STRONG ODORS (MAINLY SOLVENTS AND CIGARETTE SMOKE) AND NAPPING MAY ALSO TRIGGER CH ATTACKS. During bouts, attacks may happen at precise hours, especially during the night. During the attacks, patients tend to be restless. CH may be episodic or chronic, depending on the presence of remission periods. CH IS ASSOCIATED WITH TRIGEMINOVASCULAR ACTIVATION AND NEUROENDOCRINE AND VEGETATIVE DISTURBANCES, HOWEVER, THE PRECISE CAUSATIVE MECHANISMS REMAIN UNKNOWN. Involvement of the hypothalamus (a structure regulating endocrine function and sleep-wake rhythms) has been confirmed, explaining, at least in part, the cyclic aspects of CH. The disease is familial in about 10% of cases. Genetic factors play a role in CH susceptibility, and a causative role has been suggested for the hypocretin receptor gene. Diagnosis is clinical. Differential diagnoses include other primary headache diseases such as migraine, paroxysmal hemicrania and SUNCT syndrome. At present, there is no curative treatment. There are efficient treatments to shorten the painful attacks (acute treatments) and to reduce the number of daily attacks (prophylactic treatments). Acute treatment is based on subcutaneous administration of sumatriptan and high-flow oxygen. Verapamil, lithium, methysergide, prednisone, greater occipital nerve blocks and topiramate may be used for prophylaxis. In refractory cases, deep-brain stimulation of the hypothalamus and greater occipital nerve stimulators have been tried in experimental settings.THE DISEASE COURSE OVER A LIFETIME IS UNPREDICTABLE. Some patients have only one period of attacks, while in others the disease evolves from episodic to chronic form.

PMID: 18651939 [PubMed]
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And the PDF article, below.
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To your questions: stop alcohol in any form or amount until this cycle has stopped for a few weeks!

Pred. will abort a cycle quickly BUT you should be starting, at the same time, one of the long acting preventive meds (in the two articles). You cannot use Pred for more than a couple of weeks--safely. This is why the long term preventive should be building up in your body.
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As you have time, start reading the buttons, left, starting with the OUCH site and its many internal links. Our collective experience says that we must learn how to care for ourselves because it's so difficult to find good docs. Besides, self-knowledge yields confidence, reduces anxiety, and helps you to cope.

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(copied from my reply to your same topic/question over in the Getting To Know ya message board):

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.

Big article in sundays paper about bone loss in men and women. One of the top risk factors for bone less was long term use of prednisone. I know there are numerous other side effects ro worry about, just happened to read that one.

Like you, prednisone at levels as low as 30 mg a day provides almost 100% relief from CH for me. But if I go off pred with nothing else on board they come back with a vengeance.

I use a 10-14 day prednisone taper at the start of a cycle while I ramp up on my prevent, lithium. Bob is right, the first order of business is to try and find you a knowledgeable doc. Good luck with that, it makes all the difference in the world.

Joe

I've used steroids for the past 10 years and they do help with stemming the clusters. My first dose of prednisone was 60mg for 10 days then 5mg taper every 3. If your cycle is not over they will come back.
I have also used methylprednisone and am currently on dexamethasone, along with 1200mg lithium and verapamil, and O2.
Same as you if I stop the roids the beast comes back.
Put more emphasis on a SPECIALIST, not the alcohol.

I was prescribed Prednisone to stop my cycle this year (for the first time) and it did halt my cycle (thankfully!).  I was on 30mg, 3 times a day for 7 days.

I have also taken Prednisone in the past for a back injury and was on it for at least 4-5 months.  I don't know about all of the side effects - but one thing I can say for sure is that it can definitely irritate your stomach in any sort of prolonged dose - so be extra sure you are taking it with food.  May not be a bad idea to modify your diet to reduce any sort of acidic foods during this time too - just to be on the safe side.

Another and far more dramatic side effect was weight gain.  The thought of weight gain had not occurred to me when I was on it the first time and I can tell you I packed on pounds at an alarming rate because I was not closely monitoring my food intake (it also increases your appetite).  So just beware and you should be fine!

As for the alcohol - unfortunately I can say that I can't touch a SINGLE DROP for at least a few weeks after my cycle is done, otherwise I'll spiral right back into it.  Alcohol is like kryptonite until you are well past any possible headaches.  It sucks, I know - but it's just not worth it...

Good luck!

Prednisone is a transitional treatment and it is almost certain that the attacks return upon tapering down below the 20-30mg mark. It should be taken in combination with a prevent. Notwithstanding, occasionally Pred can break a cycle entirely.

A healthy body should be able to manage Pred once or twice a year at these dosages. The more serious risks of Pred pertain to sustained long-term usage and not necessarily to one-off treatment courses.

Side effects include insomnia (therefore take it in the morning after food) and weight gain but most importantly Pred weakens the immune system, even after short-term use. Consequently, you are more susceptible to infections, flus etc. The weight gain is merely water and therefore should came back down after you are off it.

It's in my opinion not advisable to stay on pred for the entire cycle but to use it at the onset of a cycle for the time it takes for your preventatives to kick in.

I share mcharlson's view on alcohol. Although we all know that it can trigger attacks, I further believe that it has the ability to alter or prolong a cycle. Not worth the risk in my opinion.