You're nasty friend, I know him well, we've had an on again off again dating relationship for a little over 33 years. He kind of grows on ya.

I am not one of the research oriented types, not really educated as to all of the brain chemicals involved in CH and its treatment. There are many on the board who are, and go off on complicated tangents concerning potential cause and effect. It's all over my head. I stick with educating people about high percentage treatments that work for many.

Start by reading this link. Oxygen should be your first line abortive. I average 6-8 minutes per abort, has all but eliminated my use of triptans. It's critical to have it at home with you, by the time you drive to a hospital or clinic, the beast is firmly established and oxygen won't help much:

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

Go to the meds section of the board and read the link "123 pain free days and i think I know why". A daily vitamin anti inflammatory supplement that's been helping a lot of people on the board. A long read but worth the time.

Topomax...or dopey-max as many call it, has a reputation for scrambling the brains of many of its users. Had you tried verapamil in the past? Generally the first line prevent med for CH, but at dosing higher then most docs are used to. Might be worth talking to the doc about. Are you working with a headache specialist neuro? With a dual diagnosis of cluster and migrain, I'm afraid GP's and even most garden variety neuros will be a bit in over their heads.

As to changing location, I haven't seen anyone post success with that. We have a screwed up Hypothalamous. That's where the beasty lives.

Welcome to the board, you're not alone anymore.

Joe

1. Change in location: no evidence this affects Cluster in any consistent manner which would justify a move.
2. Your comments about difference in action of the two triptans: quite accurate. Several different ones on the market which, having different onset an duration times, can be tailored to the type headache you have. Generally, Imitrex injection is first choice for Cluster because of rapid onset--but whatever works....
3. Botox: medical literature continues to report exploratory trials but no reports of consistent good outcomes for Cluster.
4. Preventives: Top. is a new one for Cluster but I still regard it as an experiment in process. See the PDF file, below.
I'd suggest talking to the doc about Verapamil. Much longer track record for effectiveness and safety. Following is a widely used protocol:

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.

I live in Denver and recently spent 10 days in Arkansas. The headaches got much worse after several days there. They have gotten somewhat better since returning to Denver. Not sure if it was the altitude change or not...