So my neuro refused to up my verapamil, instead wanting me to wean off it and use this anti depressant instead. Got it today, but want to run it through here and see if anyone has given it a shot before I use it tonight...I'm just kinda reluctant...

Since lowering my verapamil, CH have slowly been getting worse, 2 big hits the last 2 days (4:15pm first day, 3:15pm second day) and a burning/heat sensation in my eye, along with a very droopy eye which I've never had before since I started on the verapamil before I'd set into a regular pattern. The good thing is that now I can record everything and go back to the neuro and demand oxygen (which she's been refusing the whole time since I wasn't presenting with regular pattern).

Clearly the verapamil was working but she wouldn't give me enough to actually end the daily shadows I was getting. I'm getting a second opinion from another neuro hopefully soon but any thoughts on Endep??

It's almost never mentioned here for Cluster although still on the list as a preventive for migraine.

I guess that if you had exhausted all the standard meds it would be a sort of last try

What was you final Verap. dose?

This may not work <sigh> but at least this comes from a well known authority in the field. Print out and give her.
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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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Title:  Double Blind Comparison of Lithium and Verapamil in Cluster Headache Prophylaxis 
Author: Bussone G, Leone M, et al.
Date:  Posted: January 2010
Source:  Headache  30:411-417, 1990
Chronic Cluster Headache (CCH) treatment is troublesome; since there are no pain-free periods, it must be continuous. The most effective CCH prophylactic drug today is lithium carbonate but long-term use of this drug is limited by the possibility of side effects. Recently, calcium antagonists have been successfully employed to prevent migraine, and preliminary studies also indicate that verapamil in particular is an efficacious treatment for CCH. We have conducted a multicenter trial employing a double-dummy, double blind, cross-over protocol, comparing verapamil with the established efficacy of lithium carbonate, in preventing CCH attacks. BOTH LITHIUM CARBONATE AND VERAPAMIL WERE EFFECTIVE IN PREVENTING CCH BUT VERAPAMIL CAUSED FEWER SIDE EFFECTS and had a shorter latency period. We did not observe any correlation between plasma levels of the two drugs and their clinical efficacy. Both the drugs tested here may exert their effect by restoring a normal inhibitory tone to the pain modulating pathways from the trigemino-vascular system, a circuit putatively implicated in CCH.

///// Bingo! Almost forgot this one. This is the latest evaluation of cluster meds from a source which she cannot refute. Print it out.   PDF file, below.

Hey,

I take amitryptyline at night (120mg) and I think it does work for cluster headaches.  My gp in the states had me try because nothing else worked.  It helped, not in the amount of pain but in the length between sessions. I had also tried verapamil which also worked but I couldn't take both and I felt that amitrypt worked better.  The negative thing with amitryptaline is that if you miss even one dose on any amount of medication you will definitely get a rebound headache and withdrawal symptoms that are easily two or three times what your headaches were before you started it.

  If your gp doesn't think verapamil works, you might try the other one so you can see how well it works compared to what you are on now.  After that If ami works best I would suggest getting a repeat prescription of ami and try to never run out... trust me it hurts...

Zen

Amanda07 wrote on Jun 5^th, 2011 at 4:58am:


No, I have not had any side effects from it, but I recommend that you take it as you are turning out the lights at night.  It will cause sleepiness and sometimes fatigue in the day, but no side effects when taken at night.  It also helps you sleep and usually protects you from those night attacks, or atleast it does that for me most of the time. 

Let me know how it works for you.

Zen

Yep the neuro has told me to take them at night for the same reason...

Thanks so much for all your info, it was really helpful! I feel better starting something after chatting to someone who's tried it. Guess I'll give it a shot and see how it goes. I'll make sure not to run out without a back up!! Appreciate your help!