I also forgot to mention that I take a lot of Excedrin to help out, and have found .15% Capsaicin Topical Analgesic Liquid applied to my right temple (nearest my pain) to be a bit effective, even at a hit or miss chance.

Joe,
  Thanks for the info!  I am going to talk to my doc about oxygen and push that hard, also will talk to him about upping my Verapamil dosage.  I tried the vitamin/mineral/fish oil remedy a while back but it didn't do anything for me.  I really want to get the oxygen thing going though because it seems to be the most effective treatment out there, and shouldn't cost the VA much of anything.  Thanks again!

-Luke

A widely used protocol. print this oout and bring it with you to the VA. Your doc will recognize the source and author, it might help in your discussions with your doc :

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


Joe

I only wanted to add two things to all of the advice you've been given so far. First, see the imitrex tip at the left. It allows you to use an autoinjector while still breaking up the dose into two or three doses. Typically we do not need the entire 6ml but find 2 or 3ml will do it instead. That stretches out the life of a single vial. Second, we have found that when caffeine is coupled with taurine (as in energy drinks) it can reduce the severity and rebound of an attack, especially if chugged at the start of a hit. I prefer Monster but others prefer Red Bull, Rock Star, etc. Do explore the O2. It is the best! blessings. lance

Thanks to everyone for the advice!  I am going to start back up on the batch treatment (possibly at higher doses than last time I tried) tomorrow.  Samiam, I have done the ice packs and hyperventilation tactic with surprising results.  I hyperventilated myself to the point where I couldn't functionally use my arms anymore and it actually killed that headache.  I am printing out all the info you guys have given me and will be grilling my doc for either much better treatment or a referral to someone who will.

You guys are the best!

-Luke

Luke,

I have a friend who has VA benefits, and about the O2, you need to get in to see a pulmonologist. Get your primary care doc to refer you. They will prescribe O2 for  you, and they will do it for CH. They will deliver tanks, once prescribed, to your house, and supply you with a 15 LPM regulator. Read the oxygen info over to the left, and you will find a 25 LPM regulator works best, you will have to buy a 25 LPM, as the VA won't supply it, they currently don't have the research and proof that it works. We've taken the info to the O2 guy, and he read it, and agreed, but it's not in their protocol.

Get your primary care doc to refer you to a neurologist. They can get you verapamil, and imitrex injections. Read the imitrex tip to see how to split the shots. Pills are worthless, they don't work fast enough. The whole thing with the VA is getting referred to the right doc (specialties), as  your primary care isn't the expert (he/ she may think they are, but that's another story).

Using Batch's suggested regimen may be the way to go if you aren't having luck with the VA. They can be slow about things, and you have to keep bugging them sometimes.

As always, when trying a new regimen, as this one, it's a good idea to run it by your doc. We CH'ers take larger amounts of some things to make our lives easier to manage. You want to be sure you don't have any adverse reactions to anything.

Good luck with the VA.

I'd get the 25(OH)D serum test asap to find out where you're at. Then, if it shows what I suspect it'll show (not in the therapeutic range yet), I'd go for increasing your daily intake to 20,000 iu/day with a loading dose of 50,000 iu once per week.

These intake levels are still way below what you'd need to do to hit toxicity.

LukeC wrote on Jan 30^th, 2013 at 11:00am:

Exactly. You wouldn't want to take 50,000 iu every day for an extended period, but it helps get your serum concentration up quicker.

Don't wait - If you keep notes as to when you start and how much you're taking, and when you have the serum test done, Batch can help you calculate how long it might be before you start seeing lasting results.

Don't wait. Unless you're into the pain...in which case you wouldn't be here anyhow.

I'm going to be very firm with my doc and if I don't get what I need, I will demand a new doc.  I'm tired of the games.  I feel so much better now that I am loaded up with all this info and support!

Just wanted to give everybody an update.  Since re-starting the batch regimen on January 31st with double the D3 dosage, I haven't had a full on cluster attack (I still feel the shadow, but nothing more).  I met with my VA doc and he tested my 25(OH)D serum level, haven't gotten the results back yet however.  We talked about how the injections work, pills don't and that I wanted to get on oxygen therapy, and he was all for it!  He even set me up with a CT scan and an appointment to meet with a neurologist (he is the one who will prescribe me the O2).  I'm am very hopeful now that I can go back to pain free in the future.  A huge thank you to all my friends on here who helped me with info and support, I don't know what I would have done without you guys!

Yeah when I do get my supplies from the VA, that will be my number 1 priority, since I know they are going to give me a 15 lpm regulator and crap mask.  I am going to get the 25 lpm regulator