Hi folks,

As I am in cycle I went to the Doctors today to obtain some more Codeine Phosphate 30mg tablets and he also gave me Sumatriptan Succinate nasal spray(I have tried this spray before and it did seem to kill the pain after about 10 mins).

He also gave me a preventative called Verapamil Hydrochloride 40mg Tablets. I have have started taking these and I will report back to let you know if they stop the CH from returning during this cycle.  

All the best and I hope we all kill this beast!

Nige

Hi Nigel,

May I respectfully recommend you find a new Dr. that knows something about CH?  Codeine will do nothing for CH, but will get you dependent.  Verap is a good preventative, but 40mg/day won't come close to touching it.  When I was using it a few years ago, before I got tired of the side effects I was up to 720mg/day before it even started helping.  My starting dose was 480mg/day.

Find a Dr tht will prescribe O2 for you at the rates and methods described in the yellow "oxygen info" button on the left of your screen.

All the best,
Jerry

These are lists of the currently accepted meds for CH--or those used the most commonly:

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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)
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Michigan Headache & Neurological Institute for another list of treatments and other articles:

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Hi Jerry,

I am kind of thinking about finding a quack who does know about these as mine does not seem to atall. When I said to him "the devil is back" he gave no sympathy and just said "well it will do that is CH's for you". Also when I asked him if there were any other forms of medication he did not know so he looked them up on his computer which did not fill me with confidence.

The 40mg Verapamil tablets I take twice a day equaling 80mg a day. What side effects did they give you?
I have also put myself on the water medicine (good job I like the taste of H2O).

As for the O2 I have been on that for a good few years now and keep cylinders with me wherever I go.

Bob, thanks for the link I will print that off in a moment.

Oh, and just a thought, has anyone ever had accupunture to prevent or even abort CH's?

Cheers

Nige

This is a limited, informal survey of patients but it gives some notion of what is worth pursuing. Basicallly, explore the well established treatments first and only plow new ground if they don't work. Building on the experience of multiple others has some read advantages.
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Complement Ther Med. 2008 Aug;16(4):220-7.  
USE OF COMPLEMENTARY AND ALTERNATIVE MEDICINE BY PATIENTS WITH CLUSTER HEADACHE: results of a multi-centre headache clinic survey.

Rossi P, Torelli P, Di Lorenzo C, Sances G, Manzoni GC, Tassorelli C, Nappi G.

Headache Centre, INI Grottaferrata, Rome, Italy. paolo.rossi90@alice.it

OBJECTIVES: To evaluate the rates, pattern, satisfaction with, and presence of predictors of complementary and alternative medicine (CAM) use in a clinical population of patients with cluster headache (CH). DESIGN AND SETTING: One hundred CH patients attending one of three headache clinics were asked to undergo a physician-administered structured interview designed to gather information on CAM use.

RESULTS: PAST USE OF CAM THERAPIES WAS REPORTED BY 29% OF THE PATIENTS SURVEYED, WITH 10% HAVING USED CAM IN THE PREVIOUS YEAR. ONLY 8% OF THE THERAPIES USED WERE PERCEIVED AS EFFECTIVE, WHILE A PARTIAL EFFECTIVENESS WAS REPORTED IN 28% OF CAM TREATMENTS.

The most common source of recommendation of CAM was a friend or relative (54%). APPROXIMATELY 62% OF CAM USERS HAD NOT INFORMED THEIR MEDICAL DOCTORS OF THEIR CAM USE. The most common reason for deciding to try a CAM therapy was that it offered a "potential improvement of headache" (44.8%). UNIVARIATE ANALYSIS SHOWED THAT CAM USERS HAD A HIGHER INCOME, HAD A HIGHER LIFETIME NUMBER OF CONVENTIONAL MEDICAL DOCTOR VISITS, HAD CONSULTED MORE HEADACHE SPECIALISTS, HAD A HIGHER NUMBER OF CH ATTACKS PER YEAR, AND HAD A SIGNIFICANTLY HIGHER PROPORTION OF CHRONIC CH VERSUS EPISODIC CH. A binary logistic regression analysis was performed and two variables remained as significant predictors of CAM use: income level (OR=5.7, CI=1.6-9.1, p=0.01), and number of attacks per year (OR=3.08, CI=1.64-6.7, p<0.0001).

CONCLUSION: OUR FINDINGS SUGGEST THAT CH PATIENTS, IN THEIR NEED OF AND QUEST FOR CARE, SEEK AND EXPLORE BOTH CONVENTIONAL AND CAM APPROACHES, EVEN THOUGH ONLY A VERY SMALL MINORITY FINDS THEM VERY SATISFACTORY.

PMID: 18638713 [PubMed]

This approach has been in use for a number of years.
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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).

Nigel Noone wrote on Jun 20^th, 2009 at 8:22am:

Hi Jerry, Also when I asked him if there were any other forms of medication he did not know so he looked them up on his computer which did not fill me with confidence.

I wish more doctors did that - too many pretend they know everything, and they bluff the patient into going along.  It's good to have a doc that is honest about that - there really is too much information for one person to hold in their head.  Better to work with someone that is open to learning. Educate yourself, and take articles in to educate the doctor.  I would not dump one for prescribing too little verapamil, but it is too low ... work with them to get an appropriate dose. If they won't do that, then time for a change.

Nige,

It has been a few years, and I don't remember all that well anymore, but short term memory loss was one of them.  I also got tremors in my hands and tinnitus.  I'm not sure whether they were caused when I added Lithium to the mix, but I dropped both.  I ended up strting Kudzu after that, and it seemed I got as much relief from it as from the Verap, without the side effects.  

I'm not telling you not to do the Verapamil at all.  It has worked well for many, and if it works for you I would definitely say go for it.  My concern for you was that the dosage is WAY to low!  I understand the Dr is trying not to overdose you, and will probably increase it over time to see how you tolerate it.  Most of us have found that we have quite a higher tolerance of medications than "normal" people.  (Why should I settle for being normal?  Normal is only average, and I don't want to demean myself! :D)

Jerry