My story, as best as I can remember.

59 years old.  Got first cluster headache in my early 20's.  Did the whole neuro thing (thought I had a brain tumor the first time ha ha) and they diagnosed ch.  Didn't know a lot about them back then.  Was mostly treating with huge amounts of OTC pain relievers.  Stopped after a few months.  Had episodic events for next 10 to 12 years with remissions lasting a couple to 5 years.  I believe the last time they were treating me with inderal for preventative and fiorinal for pain.

Around 1988 I went into remission and unbelievably, they never came back.  I thought the line of out growing them was true.  Life is GOLDEN!

This September I got a very bad cold that I just couldn't shake.  Took about a month and ended up with a sinus infection (on my cluster side).  Did the 10 day antibiotic and seamed to clear all the drainage but was still getting a little headache.  Not bad, just woke me up and cleared with one or two tylenol a couple of times a day.  This kept going on for a couple of weeks.  Just figured it was left over from the infection.  One Saturday, I drank 1 beer and instantly got a headache.  This started me thinking, but I stayed in denial.  It couldn't possibly be (THOSE) coming back.

Last Wednesday night got hit with the kip 10 and nothing to treat except OTC.  Almost ER, but got thru it in about 2 hours.  No question now, there is no mistake about this pain.

Saw my family Dr on Thursday.  I'm probably the first cluster he ever saw, but, they are a very good health system and he looked up on their intranet and put me on 80 X 3 verapamil and Imitrex 100 MG tabs.  Offered to refer me to headache specialist, but, from what I researched before I went in, looked right and thought I would give this a try.  I realize the injections or spray work better but pills work in about 20 minutes if I don't piss around and think I don't need them.  It's been a week and may be a little better.  One about 1 1/2 hour after bed and sometimes one during the day.  Shadows vary during the day. Found out I could cut the pills in half so they go longer.  However, insurance will only approve 9 per month.  Had to buy six for $98.00 the other day.  I just got a phone number yesterday to call and get approval for more until verapamil starts to work.

Should the verapamil start working within 2 to 3 weeks?

As I read thru other experiences, I feel for every one of you.  There is some comfort in knowing others are going thru the same thing (unfortunately).  I have only ever met one other person with ch.  People that haven't experienced, just don't understand.

One of the main reasons I have posted is maybe I can give you some hope.  25 years pf, I have been very, very lucky and hope you can also be pf for a very long time.

At 59, if I get 25 more years, I'm good to go.

Thank You for your reply.

Doc mentioned may need to increase the dose.  I'm on day 8 @ 240.  How long do you think I go before I request increased dose?

They have kinda settled into a pattern of one after bed and one around 4:30 PM. Shadow (great term) mid morning and have 2 cups of coffee at lunch and seams to take it away until 4:30 or so, then it hits.

I have been reading about the O2 and D3 and will try if I don't get some results soon.

You're right, couldn't believe when they came back after so long.  I completely forgot about them except for once in a great while I would think, "Thank God I don't have them anymore".

Given that 240mg a day is a low dose and you're on day 8 when it typically takes 7-10 days for a dose to become effective but you're still getting regular CHs I'd look at changing it in the next few days in consultation with your doctor.

You're using a split dose of 80, 80, 80, so when the dose increases a good strategy is for the increased doses to be given a few hours before your regular CHs, so potentially going to 80,120,120 as the next step as this will maximise the verapamil dose for when your regular CHs happen.

With coffee working well for shadowns, you might also want to look at energy drinks, like Red Bull or Monster which have both caffeine and taurine. Gulping one of these down can work to kill off shadows and it will help with a CH for many, reducing duration and intensity. However I'd limit them to 1 or 2 a day since the taurine is a calcium channel antagonist just like verapamil, so it is effectively increasing the dose you get from the verapamil.

For the oxygen I'd start to look into it now, so if the verapamil still isn't helping then you'll have the oxygen sooner. Once you've got it you'll love being able to kill off CHs instead of riding the torture sessions out.

Similarly for the D3, it is easy to get going and it too can make a huge difference.

I assume they have this info but I'd print the PDF file, below, and drop it on their lap.

Ditto for this approach to using Verapamil. Many docs who are not used to treating Cluster get nervous at these doses--but it's standard practice. The side effects articles are for their eyes so don't reject consideration of using this dosing approach without discussing with them.
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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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J Headache Pain. 2011 Apr;12(2):173-6. Epub 2011 Jan 22.
Cardiac safety in cluster headache patients using the very high dose of verapamil (=720 mg/day).
Lanteri-Minet M, Silhol F, Piano V, Donnet A.
SourceDépartement d'Evaluation et traitement de la Douleur Médecine palliative, Pôle Neurosciences Cliniques du CHU de Nice, Hôpital Pasteur Avenue de la Voie Romaine, 06002 Nice Cedex, France. lanteri-minet.m@chu-nice.fr

Abstract
Use of high doses of verapamil in preventive treatment of cluster headache (CH) is limited by cardiac toxicity. We systematically assess the cardiac safety of the very high dose of verapamil (verapamil VHD) in CH patients. Our work was a study performed in two French headache centers (Marseilles-Nice) from 12/2005 to 12/2008. CH patients treated with verapamil VHD (=720 mg) were considered with a systematic electrocardiogram (EKG) monitoring. Among 200 CH patients, 29 (14.8%) used verapamil VHD (877±227 mg/day). Incidence of EKG changes was 38% (11/29). Seven (24%) patients presented bradycardia considered as nonserious adverse event (NSAE) and four (14%) patients presented arrhythmia (heart block) considered as serious adverse event (SAE). Patients with EKG changes (1,003±295 mg/day) were taking higher doses than those without EKG changes (800±143 mg/day), but doses were similar in patients with SAE (990±316 mg/day) and those with NSAE (1,011±309 mg/day). Around three-quarters (8/11) of patients presented a delayed-onset cardiac adverse event (delay =2 years). Our work confirms the need for systematic EKG monitoring in CH patients treated with verapamil. Such cardiac safety assessment must be continued even for patients using VHD without any adverse event for a long time.

PMID:21258839[PubMed]

Hi rafe,
Thats quite a low dose of verapamil your on, so if you take
it first thing in the morning, then again around lunchtime,
you can then take the vitamin D3 regime with your evening
meal, then take verapamil before going to bed.

                        10,000iu Vitamin D3.
                        400mg Calcium Citrate.
                        500mg Magnesium Citrate.
                        1000 Fish Oil EPA 400mg/ DHA 200mg.
                        1 Centrum Silver Multivitamin.