Hi,

About 4 months ago, I happily    found myself diagnosed with CH.

I stuffed myself with Verapamil 120's 4 times per day and 2 100mg Tegretol at doctors orders and it stopped it all in its tracks, except for minor shadows.

Lately, despite or part of all of the medications, the shadows are becoming larger and larger to the point of delerium.

I seem to spend all day with the my right cranium being crushed, my right eye being stabbed and my right sinus having a 2 foot steel ball stuffed up it.

Have I reached a point whereby the medication no longer functions?

Derek Northcote wrote on Jun 23^rd, 2009 at 4:36pm:

Now it's oxygen time.

            Potter

Many thanks.

Off to the Doc this afternoon...

Hi Derek,

It likes to keep us on our toes, that's for sure! Along with the o2, you may find either hot or cold (in the form of showers or ice packs) help with your shadows too. Unfortunately it's a 'suck-it-and-see' approach to find out if either help, but they certainly won't give you a heart attack trying them out.

Hope you get o2 ok. If you're going through Air Products, you'll need to make sure you request a non-breather mask as they don't automatically provide you with one.

Em
x

PS - Bore da! Croeso i CH.com.  Until not so long ago, I was just down the road from you in Bridgend!

This protocol has become widely accepted. Suggest you print out for your doc.

Not unusual to have to make dosing adjustments over time--both short and long term usage of one med.
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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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Your doc needs to be aware of this new side effect. Not common and is relatively easy to manage via regular EKGs.
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Source: American Academy of Neurology
Date: August 13, 2007
More on: Headache Research, Headaches, Pharmacology, Heart Disease, Diseases and Conditions, Vioxx

Drug For Cluster Headaches May Cause Heart Problems
Science Daily — A drug increasingly used to prevent cluster headaches can cause heart problems, according to a study published in the August 14, 2007, issue of Neurology®, the medical journal of the American Academy of Neurology. Those taking the drug verapamil for cluster headaches should be closely monitored with frequent electrocardiograms (EKGs) for potential development of irregular heartbeats.

Cluster headache is a rare, severe form of headache that is more common in men. The attacks usually occur in cyclical patterns, with frequent attacks over weeks or months generally followed by a period of remission when the headaches stop.

"The benefit of taking verapamil to alleviate the devastating pain of cluster headaches has to be balanced against the risk of causing a heart abnormality that could progress into a more serious problem," said study author Peter Goadsby, MD, PhD, DSc, of the National Hospital for Neurology and Neurosurgery in Queen Square, London, UK, and the University of California, San Francisco and a member of the American Academy of Neurology.

The study involved 108 people with an average age of 44. The participants started taking verapamil and then had an EKG and an increase in the dosage of the drug every two weeks until the headaches were stopped or they started having side effects.

A total of 21 patients, or 19 percent, had problems with the electrical activity of the heart, or irregular heartbeats, while taking the drug. Most of the cases were not considered serious; however, one person required a permanent pacemaker due to the problem. A total of 37 percent of the participants had slower than normal heart rates while on the drug, but the condition was severe enough to warrant stopping the use of the drug in only four cases.

Goadsby noted that 217 people taking the drug were initially supposed to take part in the study, but 42 percent of them did not have the EKGs done to monitor their heart activity. "Many of them said either they or their local services were reluctant to undertake such frequent tests, or they were not aware of the need for the heart monitoring," he said. "Since this drug is relatively new for use in cluster headaches, it's possible that some health care providers are not aware of the problems that can come with its use."

Note: This story has been adapted from a news release issued by American Academy of Neurology.