Thank you batch. I've just joined OUCHUK and registered for the forum. I'll give them a call at a more sociable time tomorrow.

I'm even more annoyed with my GP now. When he gave me a prescription for Sumatriptan injections I looked at it and remarked it was for only two injections and not on repeat but he insisted it was 20 injections. My brother went to collect the prescription for me and came back with guess what, two injections. What part of 3-4 attacks every day is hard for these Doctors to understand!

I hope your GP at least gave you verapamil to get started on.  My GP is the one who 1st prescribed me this.  It took about 2 weeks to start working, but after that my cycle ended, and I went through a 2-year remission period compared to the 1 year that had been my pattern for years. 

I understand your frustration with doctors.  I think most of us can relate.  It seems like sometimes they just don't get it or understand what we are going through.  Just keep pressing; that's what I do, and eventually something good comes about. 

Have you tried calling around to different neurologists in your area and explaining to them your headaches and that you need an appointment ASAP?  I know it took me like 2 months to get my 1st appointment, but you might get lucky and find an office who will schedule you quick.  I thought about going to the ER when nothing was working for me and asking them to have a neurologist see me.  I don't know if that would work or not, but they more than likely have a neurologist staffed at the hospital.

Okay, well that is my 2 cents.  Other than that, listen to the good people on this board.  They sure have helped me out a great deal.

I wish you the best.

So, we know that your GP is inadequate to the cause--but until you can get referred to a headache clinic (hope you contacted OUCH-UK) print out the PDF file, below, and give to your GP.

At the very least, it's a medical source of information which he will recognize and the evaluations of meds may give him some push to get you on Verapamil.

Print out this article in addition to the PDF file.
---
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.

Pleased for you that some helpful action is in process!

B

Hi Paul. I'm in East Yorkshire and travel that far is problematic due to other health conditions. I have made some further progress though...

My GP spoke to the Neuro who is going to see me sooner. He said he wanted to see me before Verapamil and O2 were prescribed but he did agree to a pednisone taper which I started this afternoon. Hopefully now between that and eking out my Sumatriptan injections for my four regular attacks and the more urgent appointment, I'm on my way to better managing the beast!