I've just looked at three of the best, current lists of therapies for Cluster and Propranolol is not listed. It's used for migraine but hasn't been used for Cluster for 30-years. (That there is a random, individual success does not alter the general picture and opens the door to a person who has a mixed migraine/cluster disorder where it might work.

Unless there is a migraine component, I'd suggest not using it--especially when we have hard evidence of so much success with other meds.

If your husband has a true, pure Cluster disorder, a doc who Rx Prop. suggests to me that he is decades out of touch--and that's not at all unusual for many/most general practice docs who likely have not had any training in headache in years. Most especially with cluster, for this is such a minority population that docs won't get training exposure given the competition for staying current in the mass of common diseases which they see. (One of the major reasons for working with a headache specialist.)

Prednisone: ususal is 50 to 80mg starting, tapering to zero over 10-12 days.

Pred will ususally stop a cycle cold in a few hours to a day. BUT a standard preventive (for long term use) should be started at the same time the Pred is started. The take several days to become effective so--the Pred give quick relief while the long term med is bulding up.

The increase of propranolol to 20mg x 2 was first prescribed by our PCP and then again by the neurologist since Pete hadn’t actually increased the dose yet per the PCP instructions.

His PCP diagnoses are Migraine and Cluster Headache. 

I picked up the paperwork (FMLA and short term disability for when he misses work) from the neurologist this afternoon.  Yesterday he’s talking ch’s and migraines, but the paperwork says “intractable headache & left facial pain”.  Ugh!

Pete took the Cluster Headache Quiz.  The first 8 he answered no to.  He also answered no to 2 of the next 8.  One no answer was to “Do your headaches normally occur at the same time of the year and same times each day?”  This is only his second cycle.  The first started in the fall and this one started the beginning of February. As far as the same time of day, yeah they kind of do for a few days and then the time changes, but he will have them around that time for a while. The second question he answered no to was “Do you normally go from totally debilitated to totally pain free in 5-10 minutes?”  He is not pain free in 5-10 minutes, but describes the pain more as being sore when the attack is over.

I guess bottom line is we think he is suffering from ch’s, but the doctors don’t.  But, what do they know?  Or do they?  We’re not trying to tell them what he has, but from what I’ve read, that’s pretty much what is required unless you’ve got a good doctor. 

I guess for the time being we’ll “use” the neurologist.   He did mention other meds to try if the propranolol didn’t work.  Pete says he’ll give it a week and if he hasn’t improved he’ll go back and try for the Verapamil.  He did mentioned Imitrex, but Pete doesn’t want to go there yet.  The O2 is still effective and hopefully will work even better with the higher flow rate.  For now his work is allowing him to go to his truck for the O2, but will reevaluate it if it interferes too much.  He is a fork truck operator in a factory.  He hasn’t had to use O2 during the day lately, only at night.  He does take Excedrin during the day.

I’m searching for a headache doctor.  Even if they don’t diagnose ch’s, hopefully they will know what is going on and get him to a more pf state.

O2, for many of us is only helpful at a flow rate of a minimum of 15 lpm and not up to. You may want to consider this when you procure your oxygen set up.

Prednisone is a transitional treatment and mainly used to abort a cycle (within 1-2 days) and to allow preventative meds to take effect. Oral dosages are often in the 60-80 mg or so per day range and are tapered down over 10 days. In very severe cases it is also prescribed as IVs over the course of 2-3 days. Without preventatives, the cycle generally returns several days after tapering off, although there are cases where the cycles has been aborted completely by the prednisone course. Side effects can include difficulty sleeping or some temporary weight gain. I take 1/2 - 1mg of Melatonin at night, which works quite well.

Prednisone is not recommended for too frequent use, for (aside of the reasonable caution that has to be exercised with the use of steroids in general) it has a tendency to become less effective the more often it is used.

Skyhawk5 wrote on Mar 25^th, 2010 at 11:30pm:


Thanks.  I went there several times, but could never find the search box.  It would be sweet to have a good doctor closer than 100+ miles.

I know we aren't set up with the O2 as good as we should be, but we're getting closer.  He still gets relief from the machine, it just takes longer.  We're going to do a practice run with the new setup in a little while. 

I guess saving the prednisone is best for when it's really bad.  Right now it's shadows during the day and a hit or two at night.  I'll get some Melatonin and have him try that.  Does it start working right away or does it take a while to kick in?

I don't think we'll get what he needs until we have a good doctor.  The two he has dealt with just won't prescribe a dose high enough to do anything.

But he is in a better place than he was a month ago.  I just hope it stays that way until he can see someone that understands what it takes to get the most relief.

Demonh8r, you probably already have, but may want to reconfirm the Verapamil dosage with your specialist to make sure you are maximising its effect.

Many of us find that Verapamil requires a dosage in the 480 mg a day range (taken in three installments throughout the day) to be most effective. With that said, many favour the fast-acting formula over the sustained-release version.

I am not suggesting that this is your dosage, but you might want to check with your doctor.

Just to add. I am currently also taking TOPAMAX with Propranolol and it works quite well for me. After the TOPAMAX started working was the last time my doctor tried removing the Propranolol. Maybe I am the rare case but I don't think Propranolol should be dismissed. It has given me years of help.