Good evening all,

Just probing for any snippets of information.

I was recently (March) diagnosed with CH. My attacks lasted between 4 to 6 hours and were almost always severe.

Thanks to help from this site I got onto the right treatment vey quickly.

However, now everyday I have a muted version of an attack. Almost as if the attacks are carrying on as normal, but the drugs are masking them. They last much the same time span and I can tell where they are at and how bad they would have been.

These muted attacks are at headache to migraine level, which is a massive improvement, but still uncomfortable and make normal functioning difficult.

Abortives are no solution as using them provokes a more serious attack.

I have changed my work hours to avoid the time of the now muted attacks, however, fatigue from headache time followed by recovery time, followed by work time is wearing me down.

Today my employers emailed a letter basically telling me they've been nice enough and giving me a deadline to get better by.

I have asked the Neuro for another appointment to discuss, but any input from you good people would be appreciated. I am taking 120mg of Verapamil daily and wonder if this is a low dose?

Best wishes to you all
Stephen

hi, Sprog. It does seem that that is a low dose but a lot of docs start low, especially if you have low blood pressure or a heart irregularity. My doc won't let me go over 320.

Is it helping? If it isn't, you may want to contact your doc and ask to double it.

Also, a question for you.  When you say 4 to 6 hours, does the headache ramp up and down, with pain free periods, even of a short duration? That is what happens to me during slam time.

I am really sorry about your deadline from employers. That has always been my nightmare. Good luck. I had a tendency to overcompensate which is hard to maintain.

Also, the way they word it or handle it may be tricky. I don't think you can be fired because you are sick, but if there are specific physical requirements that can not be met, then they could do it. Pay attention to how they word it in case you need to hire a lawyer to keep your job.

I also know what you mean by covering the pain but the ch still happens. That also happens to me.  There are several times during the work day that are a real stuggle.

I haven't found anything that makes them stop happening, but I have managed to hold down the same job for 23 years, with a wide variety of assignments, so it is possible.

Charlotte

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I suspect the Verap dose could be usefully increased. You are at a rather low level, unless there are other medical conditions which require it.

Suggest you print out this abstract and use it as a discussion tool with your doc. Many doc, lacking in experience/knowlege of Cluster, don't appreciate the unusually high doses we need.
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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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Hello Bob and Charlotte,

I live in Auckland, New Zealand - not far from Mike NZ. I am essentially healthy and take no other medication for anything other than CH.

Verapamil took effect very quickly after I started taking it, noticeably within a week.

Charlotte, my headaches do not pulse or have any breaks. They ramp up like someone is turning a dial, then ramp down until they return to the starting point.

As to my employers, I am working harder than ever and achieving more, but apparently Managers must be available from 8:00am to 5:00pm just in case the GM needs some loving - even though we are a 24 hour operation.

Thank you Bob, I'll take your extract to the Neurologist.

Best regards
Stephen

Sprog, since you're verapamil is at such a low dose for CH (range can go as high as 960mg/day) I am now curious as to what abortives you have tried and in what doses?  Occasionally an abortive will have little to no effect, or may even cause the hit to ramp up a notch or two at first.  Still, there may be one or two tricks you have not tried yet, or perhaps you need to tweak the abortives to see if that would help. Just wonderin'. Blessings. lance

I'd be asking Kiri about increasing your Verapamil as 120mg is a pretty low dose and although it's been effective to a degree there is a room for improvement.

My own experience was that 240mg had some effect, 360mg did a lot better and 480mg was the dose that cut out most of my CHs.

However that may be something else in your medical history that will prevent you going to too high a dose, which is why you need to work with your doctors on what dose is right for you.

Thank you guys,

I am pretty healthy, so no reason not to have a higher dose as far as I can see.

Abortives range from Red Bull at very early signs, also Aspirin. Imigran shots, but these are bad news if a CH is not properly in effect - so I wait until I am sure. And of course, oxygen.

None of the above have worked on what I have heard the rest of you describe as heavy shadows, punctuated with ice pick stabs. All of the above have effect on a CH in full swing.

I'm in limbo right now.

The Neuro is booked out until late May - too late for my June 1st deadline. My GP won't up my dose of Verapamil without the go ahead from the Neuro. I've requested an increased dose via email.

I'm sure it will all work out.