Hi,

My name is John and I have evidently turned chronic this year. I am on a 60 mg Pred taper and 480 mg verap.  I just got my first O2 setup going and it has been a life saver.  I also have a stock pile of Imitrex to abort if I need to.


My doctor suggested Zonegran as the prednisone is no longer working for me now.  I tried doing a search of the message board, but cannot find anything recent.

If anyone has any knowledge or experience with Zonegran, I would greatly appreciated it.  I generally don't do well with the anti epiletic/anti convulsant meds as they turn me into a zombie.

Again, thanks for any input or suggestions that you may have.

John

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

I could not find any medical literature linking Cluster and zonisamide (Zonagran)--so don't have any idea where your doc is coming from

It's not unusual for Pred to stop working, or fail to work on first use. Routine is to start another series with a higher starting dose.

And your Verap dose is modest so that considering a high dose is a reasonable reasponse.
---
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).

=======================================
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.
=====
Are you working with a headache specialist or someone who you know has experience treating headache?

Wow, thanks for the information Bob. I really appreciate it.  And thank you too Las Vegas.

I was not aware of the preference for short acting over sustained release.  I am currently on the 480 mg, extended release.  I had my first PF night in over a month last night.

One interesting thing is the dose timing.  I just switched taking my Pred and Verap from bed time to dinner and it seemed to work much better.



Bob Johnson wrote on Jan 2^nd, 2012 at 8:02am:

Are you working with a headache specialist or someone who you know has experience treating headache?

Unfortunately no.  I am currently working with my GP's Nurse Practitioner.  She has been pretty reasonable and helped me get my O2.  The last neurologist I saw said that O2 would not work for me because I am a smoker.  I took the O2 info from the link here and brought it to her. She had no problem with it.  The issue with the zonegran came up because she was treating another patient with daily migraine and thought I may want to research it.

thanks for posting the article on Verapamil.  I will definitely print it out and go over it with her.

Let increase the pressure a bit: Print out the PDF file and give to her, also.

---

IndianaJohn wrote on Jan 2^nd, 2012 at 1:39pm:

I was not aware of the preference for short acting over sustained release.  I am currently on the 480 mg, extended release.  I had my first PF night in over a month last night.

Some people, myself included, do a lot better on the sustained release version, so it can be a matter of experimenting to find out what works best for you.

Hi John,
Great news you had a PF night, awesome! ;)

For more Verapamil info, lots of it, on this Medications/Treatments board there is a lengthy thread titled "Verapamil Dosage", check it out, should be very helpful to you.