Well i went from a dose of 20 mg a day to 80 mg a day.  This medication takes the edge off for the day but by the time i wake up the next morning the throbbing behind the eye is back.  It seems like a never ending cycle.  It sounds for some that they get a break from there cluster, but I dont... It needs to be broken somehow.  It has been two years ago the last time I had one and was given Decadron.  I took 3 4mg pills in one dose and it was gone.  By the next day I seemed to have a complete personality change, so he doesnt want to put me on it again.  Has anyone one else had a bad reaction to decadron?  I am also on Verapamil, third day at 160 and will increase it to two pills in two days.  Will the verapamil begin to break it or does it need to be broke before that will effect any change?

I have never taken Decodron....so I can't help you there. Prednisone at doses as low as 30 mg a day will usually provide me relief while I wait for my prevent to kick in. The dosing of verapamil sometimes needs to go pretty high before it gives you relief. Some findd relief in the 300 mg range, some go over 900 before they find relief. The doc is taking it up slowly so he can monitor you. It can cause dangerously low blood pressure so it's not something you play fast and loose with. Stay with your doc on the dosing, hope it gives you some relief soon.

Joe

Hi,

I can't speak about stroid tapers as I've never done one.  But I can talk about Verapamil.

It takes a week or two for the Verpamil to really become effective.  Some folks see quicker results.  For me it takes almost the full two weeks.  Part of that is ramp up and part of that is time for it to get into your system and do its thing.

320mg is a good starting dose.  My magic # is 400mg.  I did find that the regular release (3/day) worked much better than the sustained release (1/day).  It let me target the highest dose ahead of my worst time of the day/night.

This is a study that Bob Johnson posted before.  It was a tremendous help to me in getting the dosage right.  If your first attempt with Verapamil doesn't work, bring this info to your Dr.

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Titre du document / Document title Individualizing treatment with verapamil for cluster Headache patients Auteur(s) / Author(s) BLAU Joseph N. (1) ; ENGEL Hans O. (1) ; Affiliation(s) du ou des auteurs / Author(s) Affiliation(s) (1) City of London Migraine Clinic, ROYAUME-UNI Résumé / Abstract Background.-Verapamil is currently the best available prophylactic drug for patients experiencing cluster headaches (CHs). Published papers usually state 240 to 480 mg taken in three divided doses give good results, ranging from 50% to 80%; others mention higher doses-720, even 1200 mg per day. In clinical practice we found we needed to adapt dosage to individual's time of attacks, in particular giving higher doses before going to bed to suppress severe nocturnal episodes. A few only required 120 mg daily. We therefore evolved a scheme for steady and progressive drug increase until satisfactory control had been achieved. Objective.-To find the minimum dose of verapamil required to prevent episodic and chronic cluster headaches by supervising each individual and adjusting the dosage accordingly. Methods.-Consecutive patients with episodic or chronic CH (satisfying International Headache Society (IHS) criteria) were started on verapamil 40 mg in the morning, 80 mg early afternoon, and 80 mg before going to bed. Patients kept a diary of all attacks, recording times of onset, duration, and severity. They were advised, verbally and in writing, to add 40 mg verapamil on alternate days, depending on their attack timing: with nocturnal episodes the first increase was the evening dose and next the afternoon one; when attacks occurred on or soon after waking, we advised setting an alarm clock 2 hours before the usual waking time and then taking the medication. Patients were followed-up at weekly intervals until attacks were controlled. They were also reviewed when a cluster period had ended, and advised to continue on the same dose For a further 2 weeks before starting systematic reduction. Chronic cluster patients were reviewed as often as necessary. Results.-Seventy consecutive patients, 52 with episodic CH during cluster periods and 18 with chronic CH, were all treated with verapamil as above. Complete relief from headaches was obtained in 49 (94%) of 52 with episodic, and 10 (55%) of 18 with chronic CH; the majority needed 200 to 480 mg, but 9 in the episodic, and 3 in the chronic group, needed 520 to 960 mg for control. Ten, 2 in the episodic and 8 in the chronic group, with incomplete relief, required additional therapy-lithium, sumatriptan, or sodium valproate. One patient withdrew because verapamil made her too tired, another developed Stevens-Johnson syndrome, and the drug was withdrawn. Conclusions.-Providing the dosage for each individual is adequate, preventing CH with verapamil is highly effective, taken three (occasionally with higher doses, four) times a day. In the majority (94%) with episodic CH steady dose increase under supervision, totally suppressed attacks. However in the chronic variety only 55% were completely relieved, 69% men, but only 20% women. In both groups, for those with partial attack suppression, additional prophylactic drugs or acute treatment was necessary.

Both Decadron and Prednisone are steroids. I weigh 155lbs. and at 80mgs of Pred. I became a creature from another planet within a week.

I did take 80mgs for a lot longer than I recommend for anyone, 3 weeks, then a long tapper off. It did keep the CH at bay but caused me some health issues. Dangerous stuff.

If you have a partner, please have them monitor you for personallity changes. I thought I was fine, but I now know I was not. During several cycles I begged my Doc to leave me on Prednisone for long periods at less mgs.

My last cycle in '08 it didn't help much at all. It was helpful many times in the past when I really needed the break but it never ended the cycle. It does for some though.

DHE given in a Hospital setting has been known to break cycles for some. There are home injections but they are not for everyone.

If you haven't tried Oxygen with modern techniques you may be missing the best treament.

Don