Continuous use of Pred. carries too much risk of side effects. (Those few conditions where it's necessary present troubling management issues.)

Standard response to your situation is to start another Pred series but with a high starting dose. Range runs roughly from 60 to 100mg starting dose.

Then may have to increase the Verap dose (which should be started at the same time as the Pred starts).

This is a widely used protocol:

Headache. 2004 Nov;44(10):1013-8.   

Individualizing treatment with verapamil for cluster headache patients.

Blau JN, Engel HO.


    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. (Headache 2004;44:1013-1018).

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SLOW-RELEASE VERAPAMIL

Dr. Sheftell applauded the protocol for verapamil used by Dr. Goadsby and colleagues, which entailed use of short-acting verapamil in increments of 80 mg. “This method was suggested by Lee Kudrow, MD, 20 years ago as an alternative to slow-release verapamil,” Dr. Sheftell noted.

“I would agree with using short-acting verapamil, rather than the sustained-release formulation, in cluster headache,” he said. “I prefer the short-acting formulation with regard to ability to titrate more accurately and safely. My clinical experience anecdotally demonstrates improved responses when patients are switched from sustained-release verapamil to short-acting verapamil.”

Dr. Goadsby agreed that his clinical experience was similar. “There are no well-controlled, placebo-controlled, dose-ranging studies to direct treatment. This is one of those areas where clinicians who treat cluster headache have to combine what modicum of evidence is available with their own clinical experience,” Dr. Sheftell commented.
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Print out the PDF file, below, one for each of you. It's a good guide to discuss treatments options.

I'm with Bob, several other members will probably chime in with horror stories of their personal experiences with extended pred use. It's a miracle drug for short term when you just HAVE to have a break but bad news long term.

Joe

I do a taper at the beginning of every cycle. I get irritable, constantly hungry, it's tough to sleep as it makes me a bit hyper. But it provides a 100% break from beasty so it's an ok trade for me. When I come off of it my back breaks out with acne like a 15 year olds face! (Apologies to any 15 year olds fighting acne) I get back aches coming off of it and muscle spasms but easily handled with motrin.  This is a 14 day pred taper, 80 mg to zero.

Joe

8 weeks is a LONG time to be on prednisone. That's not a treatment regimen I've seen anyone use. I suspect if the doc follows the verapamil protocol Bob posted, you won't need pred that long. Which is a long way of saying that while I hate to contradict doctors.....8 weeks is WAYYY long...

Joe

I did a 10 day regimen.  5 days at 60, then 50, 40, 30, 20, 10.  I had shadows during the taper and by 10 was feeling quite unwell.  The beast came back.  My dr. suggested re-doing the same 10 day taper, but I haven't filled the prescription as I am nervous to use too much of this drug.

Maybe a 14 day regimen would work better next time?  Can someone tell me what they specifically do for a 2 week taper?

Another vote on 8 weeks sounding like a long, long, long time to be on prednisone as a CH taper dose. However we are not medical doctors so there may be something else in your medical history that your doctor is also taking notice of when doing this.

Or it could be that he doesn't know what he is doing.

Are you working with a headache specialist who has the skills and training to deal with CHs?

My previous prednisone tapers have been over about 10-14 days at the most whilst I've built up on a longer term preventive.

It worked well, but I didn't feel great, other than CH free, and would eat anything and everything in the house, which didn't do much good for my weight.

So glad to have found this site.  Such amazing information and personal experiences.  Thanks all!

...or you can have Chewy look it up for you.

Well, I decided against another prednisone taper in the end.  Dr. upped my verapamil from 360 to 480.  It seems to be helping and I will talk to him about upping to it 600 pending another ECG.

I take 120 in the a.m. and afternoon, then 240 at night, which keeps me sane all night long.  Last night I had one mild attack at 2 a.m....the night before, I was good all night.  The days are harder so I'm hoping a 240 hit in the a.m. will eliminate most of the painful attacks during the day.

Thanks for everyones input.  I would have probably done the prednisone over the increase in verapamil and I'm so glad I didn't.

The link in #14 would have been helpful to the original writer's concern if it had noted this line from the abstract:

"Evidence is conflicting on the relative importance of peak dose, daily dose, or cumulative dose, and most likely all three represent "high dose" corticosteroid administration and play a role in AVN. "

In practice, the short periods we use pred, with high initial dose and fast taper, is designed to reduce risk.