Hi Torry

Sorry to hear your suffering, but welcome to the club. I have to say its essential you get onto the prevent meds. It may well be a week or two before it really helps, but its better late than never.
Clearly the injections are doing a job, but you'll be limited to what you can take. You might do well to ask your doc / neuro about the possibility of getting onto O2. It seems to work for the vast majority of people on the board. I only came on line recently and following the O2 advice from these guys has made a massive difference to me. Take a look at the yellow link to the left of your screen, its well worthwhile reading. Also look at the Imitrex tips, its possible to stretch out and make the most of your limited dosage.
Well I hope your episode is soon over and you get PF
All the best

Andrew

Hi, Torry, and ditto the above. I understand your reluctance to join forums. I belong to a total of two...and this site is very compelling in its depth of knowledge and support. No, there is no cure...but there is help as you've heard above. Is your doc a headache specialist who cares about CHs? I ask this because so many are not, and the fact you were not prescribed O2 right off tells me he may not be up on the most current methods of treatment.

I also want to encourage you to read the threads on Batch's diet (123 days pain free and I think I know why) as well as the various threads on melatonin. OTC help is found here.

Let us know how you progress in battling this most unrighteous beast.  Blessings. lance

Please! A remarkable % of people never fill Rx given by their doc or use the med. Both patient and doc have failed expectations.

Verap does not have a powerful effect on BP and its use by Cluster  folks does not often produce a problematic drop in pressure. Worse outcome: you stop using it.

But it is the leading med used to prevent/reduce Cluster attacks and you need something more than Imitrex to gain control. And since it takes a number of days to become effective, and dose adjustments may be needed, sooner you start the better.

Following outlines its use. This is a widely used approach for Verap and you might print it to share with your doc.
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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.

Thanks for the responding so quickly! I'm just going to answer people's questions in one fell swoop =P

I don't think my doctor is a headache specialist, I've looked around and there are none in my area that I can find. However, he does seem to be relatively knowledgable. He's from Russia and apparently they've had more studies on CH's there than they do here. He initially wanted to prescribe me with Lithium but I have Anxiety Disorder so he wanted to hold off on the Lithium.

About the oxygen. I think he wanted to try this route first because, let's face it, I'm young. I'm only 21 years old, in school, living on my own, working two jobs just to get by...chances are I can't afford the oxygen lol. However if it comes to it, I'm hoping my insurance will cover it. I know most don't but I have pretty good medical insurance. Does anyone know if Cigna covers O2 tanks?

Haven't read the links yet but I will today, as am I starting the meds =P I'd read them now but I've got e shadow and I know it's coming...wish me luck =/