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                       CLUSTER HEADACHE HELP AND SUPPORT › GETTING TO KNOW YA › NEWBIES, HELP US...HELP YOU
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IN my judgment, a doc who uses ergotamine for any purpose with Cluster is 30-yrs out of date. It's a short acting abortive; never used as a preventive, with the exception of night time attacks; so out of date that even finding is difficult.
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LOCATING HEADACHE SPECIALIST

1. [DELETED]


2. Yellow Pages phone book: look for "Headache Clinics" in the M.D. section and look under "neurologist" where some docs will list speciality areas of practice.

3.  Call your hospital/medical center. They often have an office to assist in finding a physician. You may have to ask for the social worker/patient advocate.

4. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or ; On-line screen to find a physician.

5. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or Look for "Physician Finder" search box. They will send a list of M.D.s for your state.I suggest using this source for several reasons: first, we have read several messages from people who, even seeing neurologists, are unhappy with the quality of care and ATTITUDES they have encountered; second, the clinical director of the Jefferson (Philadelphia) Headache Clinic said, in late 1999, that upwards of 40%+ of U.S. doctors have poor training in treating headache and/or hold attitudes about headache ("hysterical female disorder") which block them from sympathetic and effective work with the patient; third, it's necessary to find a doctor who has experience, skill, and a set of attitudes which give hope of success. This is the best method I know of to find such a physician.

6. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or NEW certification program for "Headache Medicine" by the United Council for Neurologic Subspecialties, an independent, non-profit, professional medical organization.
        Since this is a new program, the initial listing is limited and so it should be checked each time you have an interest in locating a headache doctor.
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As a preventive, Verapamil is the  best in terms of effectiveness and safety.
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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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Suggest you print out the PDF file, below, using it as a discussion tool with any doc you see--and to guide your thinking about current meds.

Verap comes in two form, quick acting and longer duration. Reason for using the short form is noted in the article.

Print out the PDF file, as well as the Verap article, for your doc. If he is open to accepting it, the information will help him appreciate the need for using other meds. This article is the latest evaluation of the major meds used for Cluster. (Many of us have had to educate our doc so that they could take care of us! It's quite striking how little education doc receive in med school around the issue of complex headache disorders--specially around Cluster.

Hi ngl...welcome aboard...you are home!

I'll be brief....verapamil takes several weeks...and perhaps several incremental dosage increases to be effective....I've been as high as 960-1040 mg/dy...480 seems to be the dose most report as effective...then you can save the probable limited supply of maxalt for breakthroughs...

TOTALLY not understanding why O2 is not possible...a doctor who understands ch would be SMILING while writing the script for O2....and the birthplace of modern medical practice not having that available!!???...is astounding....

being away from home doesn't matter...I carry an e tank in my car...one in my office...or could cart it along if necessary...the FIRST time O2 aborts a seemingly inevitable agonizing hit...you will be bouncing off the frigging walls...and wondering...what took so long to get THAT?!!!!!!

...if ya can't get medical O2...then industrial...or perhaps the ubiquitous dive shops would be MY next stop.....


Best,

Jon

Verap takes several days to become effective and then you may have to adjust dosing to find what is effective for you.

Patience....

Ngl wrote on Nov 4^th, 2012 at 10:58am:


That is about the right rate to stick with.



Quote:


If the tablets have a line in the middle, they can be broken in half, but keep at three times a day with short-acting.




Quote:


The progress you are making is about right.  You'll see in Bob's article about 120mg a week can be added.  Just as gradual, 80mg every 4-5 days.  The very same guidelines my doc gave.

Bob Johnson wrote on Nov 4^th, 2012 at 1:06pm:


It has directions for 40mgs.

Quote:


Thanks Bob, the 40mgs on alternate days may be a better way to go.  I've never worked with that small a quanity before.

I postulated out 40 on alternate days = 80 every 4-5 days = 120/wk.