Hi, i'm Ty. Episodic... went 2 years without a headache this past break, compared to the usual year and 1/2. The beast has been back for 3 months now. This episode started on the right side. A week ago, just when I thought the coast was clear, it hit the left side like a freight train gone off the tracks(much worse than right side). Meds include Verapamil ER 240 mgs once a day, Imitrex nasal spray 5 mgs, and O2. Also I started the vitamin D regiment shortly after the start of this episode, which seemed to help.

Thought I was out of the woods as my episodes usually only last 3-4 months and I hadn't had anything more than the ocassional shadow for about a week, so I stopped taking the verapamil and vitamin D regiment.

That's when it switched sides  :-/ My worst fear is to go chronic and am hoping that isn't the case. I am taking the verapamil and vitamin D thing again but so far getting hit 4- 7 times a day with kip 8-9 monsters. I thought I was all used up after the 3 months of right side attacks... Somehow i'm still here  :o

Thanks so much to everyone who makes this site and message board possible. No one else could begin to understand what it's like, and it's nice to be able to communicate with people who do.

- Ty

Ty: Sorry about the surprise but surely one of the defining qualities of Cluster.

Since you have proven success with Verap, consider getting back on, even increasing the dose, and staying on for months after the current cycle ends. There is no disadvantage with this approach and some folks, who have rapid cycles, stay on 100% of the time.
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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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Predicting a move to chronic is not possible; simplyl no decent studies of identify if/how/under what conditions. And, perhaps as bad, trying to predict the future is futile and the source of chronic anxiety.

Hope you have a good doc with headache skills/experience. Surely, one of the larger problems around here is not have skill in your camp.

Hi Ty and welcome

Your verapamil dose of 240mg a day is fairly low, so since you're still getting hit multiple times a day there is the option of the dose being increased (working with your doctor). For many a dose of 260-480mg a day works well, some need up to 1000mg a day.

It also might be worth changing the timing of the dose too so if you're mainly being hit in the evening, taking the dose a few hours before may be better than taking it in the morning. Or possibly splitting the dose between morning / evening.

Some people, including myself, react best to the ER form, however for others with more predictable CH times can do better with the standard release form taken just before the normal CH times.

But before you change anything in your medication, do discuss this with your doctor plus do allow time for any changes to take effect, which with verapamil can be about 10 days. If you change things too quickly you'll not know what really is working or not.

Ty,

Glad to see you here, although the reason you're here sucks mightily. The Beast is a worm that can turn and does often. I'm a leftie myself, since I was 13 in fact. As the Marines say, ever faithful. No one knows why it changes, when it will change, but that's one thing the Beast does well -- adapt. For me it took a long time. I was on Verapamil 240 once a day for 16 years before the full-blown attacks returned on their own. Until then it was only if I missed a dose. I've had the Verapamil upped and I seem to be doing OK, but how long that will last is anyone's guess. Once again, glad you're here and sorry you were blind-sided. Good luck with the new regimen.

Rep

repguy2020 wrote:

Quote:

I was on Verapamil 240 once a day for 16 years before the full-blown attacks returned on their own. Until then it was only if I missed a dose. I've had the Verapamil upped and I seem to be doing OK, but how long that will last is anyone's guess.

Yeah, that's my story as well. Except I'm chronic. I've since gone up to 640mg/day verapamil and 300mg/day lithium, plus imitrex, migranal, O2 and Monster. Melatonin at night and tons of vitamins and supplements (see D3 regimen). Holding my own and the beast is managed, if not caged.

Ty, don't give up no matter how discouraging it gets. You gotta keep workin' at it. You'll find a path, I guarantee. God bless. lance