I suspect that this will not apply to you--BUT--when you have long experience of nothing really working well, it's time to look at the extremes. (The faliure of comonly used CH meds is an important sign that you may not have Cluster.)


Link to: cluster-LIKE headache.

Section, "Medications, Treatments, Therapies --> "Important Topics" --> "Cluster-LIKE headache"
=====
Imitrex pills are the least effective form to use; injection is 90% effective and works quickly.

An alternative to Imitrex which has good worked well for some of us:

Headache 2001 Sep;41(8):813-6 

Olanzapine as an Abortive Agent for Cluster Headache.

Rozen TD.

Department of Neurology, Jefferson Headache Center/Thomas Jefferson University Hospital, Philadelphia, Pa.

OBJECTIVE: To evaluate olanzapine as a cluster headache abortive agent in an open-label trial. BACKGROUND: Cluster headache is the most painful headache syndrome known. There are very few recognized abortive therapies for cluster headache and fewer for patients who have contraindications to vasoconstrictive drugs. METHODS: Olanzapine was given as an abortive agent to five patients with cluster headache in an open-label trial. THE INITIAL OLANZAPINE DOSE WAS 5 MG, AND THE DOSE WAS INCREASED TO 10 MG IF THERE WAS NO PAIN RELIEF. THE DOSAGE WAS DECREASED TO 2.5 MG IF THE 5-MG DOSE WAS EFFECTIVE BUT CAUSED ADVERSE EFFECTS. To be included in the study, each patient had to treat at least two attacks with either an effective dose or the highest tolerated dose. RESULTS: Five patients completed the investigation (four men, one woman; four with chronic cluster, one with episodic cluster). Olanzapine reduced cluster pain by at least 80% in four of five patients, and TWO PATIENTS BECAME HEADACHE-FREE AFTER TAKING THE DRUG. Olanzapine typically alleviated pain within 20 minutes after oral dosing and treatment response was consistent across multiple treated attacks. The only adverse event was sleepiness. CONCLUSIONS: Olanzapine appears to be a good abortive agent for cluster headache. IT ALLEVIATES PAIN QUICKLY AND HAS A CONSISTENT RESPONSE ACROSS MULTIPLE TREATED ATTACKS. IT APPEARS TO WORK IN BOTH EPISODIC AND CHRONIC CLUSTER HEADACHE.

PMID 11576207 PubMed

--------------------------------------------------------------------------------


Olanzapine has a brand name of "Zyprexa" and is a antipsychotic. Don't be put off by this primary usage. Several of the drugs used to treat CH are cross over applications, that is, drugs approved by the FDA for one purpose which are found to be effective with unrelated conditions--BJ.
------
Since this abstract was first posted Zyprexa has appeared in some lists of recommended meds for CH. [BJ]
=====
Headache. 2006 Jun;46(6):925-33. 


Testosterone replacement therapy for treatment refractory cluster headache.

Stillman MJ.

Objectives.-To describe the clinical characteristics and laboratory findings of cluster headache patients whose headaches responded to testosterone replacement therapy. Background.-Current evidence points to hypothalamic dysfunction, with increased metabolic hyperactivity in the region of the suprachiasmatic nucleus, as being important in the genesis of cluster headaches. This is clinically borne out in the circadian and diurnal behavior of these headaches. For years it has been recognized that male cluster headache patients appear overmasculinized. Recent neuroendocrine and sleep studies now point to an association between gonadotropin and corticotropin levels and hypothalamically entrained pineal secretion of melatonin. Results.-Seven male and 2 female patients, seen between July 2004 and February 2005, and between the ages of 32 and 56, are reported with histories of treatment resistant cluster headaches accompanied by borderline low or low serum testosterone levels. The patients failed to respond to individually tailored medical regimens, including melatonin doses of 12 mg a day or higher, high flow oxygen, maximally tolerated verapamil, antiepileptic agents, and parenteral serotonin agonists. Seven of the 9 patients met 2004 International Classification for the Diagnosis of Headache criteria for chronic cluster headaches; the other 2 patients had episodic cluster headaches of several months duration. After neurological and physical examination all patients had laboratory investigations including fasting lipid panel, PSA (where indicated), LH, FSH, and testosterone levels (both free and total). All 9 patients demonstrated either abnormally low or low, normal testosterone levels. After supplementation with either pure testosterone in 5 of 7 male patients or combination testosterone/estrogen therapy in both female patients, the patients achieved cluster headache freedom for the first 24 hours. Four male chronic cluster patients, all with abnormally low testosterone levels, achieved remission. Conclusions.-Abnormal testosterone levels in patients with episodic or chronic cluster headaches refractory to maximal medical management may predict a therapeutic response to testosterone replacement therapy. In the described cases, diurnal variation of attacks, a seasonal cluster pattern, and previous, transient responsiveness to melatonin therapy pointed to the hypothalamus as the site of neurological dysfunction. Prospective studies pairing hormone levels and polysomnographic data are needed.

PMID: 16732838 
===================
Consider dropping your other blood pressure med so that you can boost the Verap dosing. This protocol is widely used and the constipation can be managed.
--
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).

=======================================
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.
====

If you are not working with a headache specialist, suggest you consider it. The training received by most docs, including neurologists, is meager re. headache. This is a far more complex area of medicine than is commonly appreciated.

Many Many thanks for taking the time to reply to my post.  Going back to the neurologist Monday 6/13.  We'll see how that goes.... I will for sure read the the thread you pointed out to me.  And I dont use the mask for the O2, I use the cannula.  Did I spell that right?  It's kinda cold and burns a little, but thats what the neuro recommended, so thats what I use.  But I'll suggest the mask to her Monday.  I also wake up in the morning feeling horrible.  Feels like I got a hangover.  Plus my eyes hurt like hell and the bridge of my nose is in pain too every morning.

Great info Joe thanks again.  I believe Monday the Infusion people will be calling to replace my 02 tank anyway.  So I will make sure that I tell them what you told me about the mask AND the regulator.  Man, even while I'm on the sumatriptan (like now), it does give me 7 1/2 to 8 hours relief, but the eye still burns just a bit and I cant look at the computer screen too long or watch tv too long.  That just irritates it more.

Thanks Brew.  I'm going to have the Infusion people bring me one when they deliver the next O2 tank.

Brew wrote on Jun 12^th, 2011 at 11:35am:


Another vote for the O₂ptimask. I've used the cheap disposable masks and I've got two of the O₂ptimask. The difference is huge and well worth the extra $ to obtain.

Thanks Lance.  Yeah, todays visit went better.  She is FINALLY taking me off that USELESS topomax, and getting me on Verapamil, and in the near future Lithium as well, which a few people here recommended to me.  I pray that will help.  As far as the masks go, I did get some regular, and the non re-breathable ones today from the infusion people when they delivered the new O2 tank to my house.  I'll be calling the O2 therapist tomorrow to just get some instructions on how to use the Non-re mask.  She'll probably have to come to the house, and thats fine.  When she does, I'll run the Opt-mask by her as well.  Luckily I dont have to pay for any of this stuff.....so far anyway.  Now I just gotta talk to my primary care doc about how to manage the constipation that goes right along with the verapamil.

Do NOT expect the Therapist to know anything about the O2PTI mask, it is beyond common medical knowledge. The O2PTI is only for CH and I know of no other use in medicine.

The only thing you need to know about using a NON-REBREATHER mask is, turn on the O2 and breathe. If you haven't, pls read thru the "oxygen info" link on the left, the link that Guiseppi gave you earlier in this thread.

Don

Mike NZ wrote on Jun 14^th, 2011 at 7:09am:


S'funny. I had an argument with a nurse about my rig. She was denying I had a regulator that went to 25lpm on my portable E tank. It was sitting a few feet away as we talked, and regardless of how I tried to get her to just look at it, she would not accept it as real world truth. She, too, tried to convince me any such flow would be dangerous. Sigh. But the beast needs no such convincing as it goes down in flames, reluctantly, to the blessed intervention of pure O2. I am so sorry for those for whom it does not work. Blessing. lance