So I went to see the doc seeking some medication changes and became even more frustrated when I left his office.
I asked him how familiar he was with clusters and he informed me that yes, he knew how to treat migraines. I broke out into tears for my fears of eliminating the pain was not anywhere in sight.
Luckily I did bring ALOT of literature with me and I gave it to him (he did not even look at it, atleast while I was there).
I have been taking verapamil 240mg and do have o2, and finally was able to get my hands on a non rebreather mask. I am also taking 6mg of melatonin 1 hour before I go to sleep every night.
The doctor would not change my verapamil to a higher dose, however I asked for prednisone and he did give me a script for that (of course this was against his opinion).
My doctor informed me that if he increased my verapamil that would open an entire other door of possible medical complications. My response to him was that if I dont get some relief from these clusters, I wont have a future.
Anyway I am not sure if it is the melatonin or the prednisone is kicking the cycle off schedule. Since this bout started over a month a ago, the clusters came like clockwork at 1:30ish am and sometimes during the day while I was awake. But now the demon comes at 6am, and with the o2 I am getting very quick relief from the immediate pain, however throughout the day the Shadow kicks me down.

Any suggestions about dealing with the doctors?

A steroid taper is usually effective at arresting a cycle temporarily.  Unfortunately without an adjustment in your prevent the beast will come back even stronger once the taper is done or near done.

Your Doctor is right about high doses of verapamil requiring extra care.  Bradacardia is a complication that can come from extended use of high doses of verapamil.  So he does have a clue.  

High dose verapamil requires an annual EKG with an additional EKG every time the dose is increased to a new level.  This is a good way to keep an eye on the side effects and make sure your ticker is in good shape.  The good news is that once verapamil is stopped the symptoms do go away.

How many days have you been on the tapern now?  It can take three days to take effect.  Also, make sure you take the entire dose with your morning breakfast.

Doctors do care.  Unfortunately finding a Doctor you can work with can be difficult.  They typically don't have the training for treating CH and need to be willing to learn a few new tricks.  This is a rare combination.

My advice on the Doctor front is to make another appointment and ask that he review what you gave him on high dose verapamil.  If he still hasn't read it or still resists, then it is time to try again with a different Doctor.

I know it is frustrating.  Some of us look for a while before finding the right one.  Just be persistent and know that you are your best advocate.  It sounds like you are doing all the right things.  Just keep at it...

-Dennis-

Can we assume this is your Family practice/Internal medical/Primary care physician?

If so, I would get the name of a good headache specialist.  There is nothing better than a doctor who actually is up on clusters.  My PCP tried a bunch of things with me, but when I first saw my current Headache specialist, he was amazing.  

Doctors do care, it's just that CH is not something that they understand, they look it up and go with what they find.  A friend of mine who is a Fam Prac dr was in shock at the dosage of verapomil I was on.  The just dont know.

Agree with Dennis about a second visit. BUT I'd also start looking for a new doc, with experience, if this one can't accommodate to your questions.

Suggest you give him Rozen's article, the one on Verap. dosing-and see how he responds.

The last one is self-evident.
-------
START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Here is a link to read and print and take to your doctor.  It describes preventive, transitional, abortive and surgical treatments for CH. Written by one of the better headache docs in the U.S.  (2002)
================
Michigan Headache & Neurological Institute for another list of treatments and other articles:

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE
============
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).
=============
1. Search the OUCH site (button on left) for a list of recommended M.D.s.

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. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE  On-line screen to find a physician.

5. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE Look for "Physician Finder" search box.  Call 1-800-643-5552; 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.

Thanks for following up with the right articles Bob!  You are the man  8-)

-Dennis-