December 1st will be 1 year for my current cycle. I had 2 1/2 weeks remission back in March(?), 2 days a few weeks ago, and 2 days last week. I'm now on 400mg Topomax and 600mg Lithium. I'm on the Lithium for almost 2 months. the doctor will consider raising the Lithium once I get my levels tested. the only "serious" side effects, which are more noticable in the cold weather, are numb hands and feet from Topo. All other side effects are virtually gone, except for the lack of appetite. I still get daily headaches, though not nearly as bad as before, and the 1AM headbangers have been little to nil. The constant dull pain is still there, and the occasion "Ouch" which I would call a K4, though I would say would have knocked me over in years past still occur. I'm finally getting back on an exercise regimen, as I found my VO2 max has dropped, causing a lack of O2 uptake making my HAs worse, of course. when I run, I feel fantastic, and when I don't exercise, I feel like crap.

Not sure where to go from here. My quality of life kind of sucks. not sure if I just leave things as they are, if I push my doc to do something else. he is considering sending me to a HA clinic. He is a HA specialist, but generally deals with episodic, not chronic CHers.

Thoughts?

Eve if a dosage adjustmen is needed, you'll know within a week if his works for you. Nearly as fast as Suma injection to abort.
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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

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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.
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Since this abstract was first posted Zyprexa has appeared in some lists of recommended meds for CH. [BJ]

Have you tried the vitamin D3/fish oil/calcium citrate/magnesium/zinc/other trace elements regimen?

Thanks. I'm on D3, 10,000IU daily, my D is up to 82. It was down around 45 or 50 at one point. I take a daily multiple since I have celiac and have to watch what I eat, get enough calcium, etc. since I have absorbtion issues, though I have been gluten free for 13 years. I will ask the doc about the other med and see what he says. I'll try anything at this point.

Mike - to be honest, personally I would rather try the ClusterBuster option before going on lithium. But say, did you ever try melatonin? If not than I think you should talk to your doctor about it. Also, ask him to test your free testosterone, cortisol and zinc.

Several research showed that CH'ers suffer from low testosterone and melatonin and higher than average cortisol. The most important building blocks for testosterone are D3, Zinc and cholesterol. With the right diet/supplementation and (moderate) exercise, you may eliminate some potential triggers and may find you are responding better to medicine.

Some people find Elatrol/Elavil to be surprisingly helpful. It's side effects are not as serious.   

Have you tried the O2 with a mouthpiece? The O2pti mask comes with one. We fight a tuff battle and whatever works can be hard to find.

Don

I do use melatonin. 15mg. It helps, but not enough. I never tried the mouthpiece. The o2 is ok, but not enough either.