Emotional coping is surely the big issue with Cluster and you make that clear by noting your store of meds which don't protect you from your fearful anticipation of the next attack.

Wish you would look over this article and consider working with a counselor who could help you use this approach to gain control over your distress. This approach takes some commitment, patience and practice, but results are notably good.
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I read the article it is awesome!! I bbelieve I was thinking that way for years but I am more on the back to work profalactic, prepared for the the next outbreak mode, not that Im not scared to death. But I am preparered for what seems to work for me right now and thinking possitive.

Well first Im happy to find others who have same condition cause I feel alone. Most people dont take me serious when I explain I wanted to take a gun to my head to take the pain away till I found a neurologist who did understand the difference between migraines and clusters then the battle of finding the meds that work best i was on 2mg clonazapam twice a day (neuro/epileptic/anxiety) combo drug 120mg verapapamil day 100pmg topamax day 800mg motrin as needed and 10I mg ambian as needed to help sleep thru them and 6I mg sumatriptam inject as needed this was not working i was getting my clusters 18 weeks with three srtong headaches a da y with 2a week repreives so meds changed to 90pthe mg lithium daily 200 topamax same clonazapam same ambian same sumatriptan just allowed more shots a month and still hae my motrin just have to be more care ful with it since on lithium. I would like to know other treatments, i love lithium cause ive been free of a major cluster for 6 months and that is rare but i also lost my hair with it it has major side effects. Love my wigs but miss my hair

The mix of meds which you outline is rather at odds from what most of us would expect for Cluster. The question for me is: while you doc knows the difference between migraine and cluster, does he have experience in treating Cluster?

Print the PDF file, below, and share with him.
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A common mixture we would expect is along these lines.

1. Prednisone, high dose taping down over 10-days. It will break a Cluster cycle in hours.
2. At the SAME time, starting a long term preventive med. Verapamil is the first drug of choice in terms of effectiveness and frequency of use. It takes a couple of weeks to become fully effective (and dose admustments are common), but works to reduce the intensity & frequency of attacks. Print the following for your files and share with the 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.
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Notice the high dose used for Cluster. Many of our folks use 400-900mg and, while quite high compared to use with heart patients, is widely accepted (per article).
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The use of pain meds is a big no-no with Cluster. Not only ineffective but, regular use, can increase frequency of attacks.

This is basic info; doesn't cover the wide range of optional meds should these not be as effective as you need. But for now, suggest you ask your doc to consider the PDF file data as being mainline treatment as a starting point.

Ally, welcome to CH.com.

What type of O2 setup do you have? For the best results with O2 we need a NON-rebreather mask with a bag on it. A regulator that goes to at least 15LPM. Nasal canulas are no good. The proper mask must seal well, if any holes open, tape them shut.

Check out the link below about Oxygen. It has info that most Doctors don't. We MUST have a proper O2 setup for it to work well.

Oxygen concentrators are NOT good for CH.

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Don