It's been a while, need some advice. I've been chronic since the beast first came knocking over 2 years ago with very few pain free days since. Spring and fall are always worse. I've missed several months from work,thank god for short term disability,but I'm finding it impossible to keep working under these conditions ,2 to 5 headaches a day and it doesn't help that my job is dangerous and very stressful. I have been going to Duke university and we have ran the gamout of treatments. My kidneys are starting to give me trouble from all the drugs and I've been told my liver is now stressed. Has anyone been successful filing for disability benefits for clusters?

I did for 4 months even though my test levels for D3 were normal. Didn't work,was on O2 for a while,only a temporary reprieve,got to be a hassle with the insurance company and it wasn't fesable to try to use it at work. No prevetative has worked up to this point. I'm using the Imetrex injections way too often and they are becoming less effective. Can't work like this,he'll live like this.

I read all the messages you have posted. I hope that you are seeing a headache specialist at Duke or a neurologist who has experience/training re. headaches (a special weakness with neurologists, in general).

Duke is the best source of guidance about the odds of getting disability. Our collective experience is quite limited on the issue but, my impresion, is that is very difficult with Cluster.
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Suggest you print out the following and ask your doc for a trial. This med has not gained much attention but the few folks here have been very pleased with the results. After my first use, it became my only abortive. No side affects at the dosage we need; inexpensive, if you have to pay out of pocket. If you get some samples, you'll know, with 1-3 uses, whether it works for you.
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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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Print out the para. re. the med I suggeted. Just asking for it by name will probably get a quick "no!". Giving them the medical source for your reqest is more likely to get some attention.

There are a large number of disorders whch appear to be Cluster headache BUT which are not headache disorders.

Suggest you print this mateial and raise the question--have they considered such options.
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Yet another report on the need to work with a headache specialist if we are to obtain optimal treatment. A secondary lesson: use of abortives BEFORE a diagnosis is made can mislead the physician by masking important clinical signs.
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Cephalalgia. 2009 Sep 7. 
Cluster-like headache. A comprehensive reappraisal.

Mainardi F, Trucco M, Maggioni F, Palestini C, Dainese F, Zanchin G.

Headache Centre, Neurological Division, SS. Giovanni e Paolo Hospital, Venice, Italy.

Among the primary headaches, cluster headache (CH) presents very particular features allowing a relatively easy diagnosis based on criteria listed in Chapter 3 of the International Classification of Headache Disorders (ICHD-II). HOWEVER, AS IN ALL PRIMARY HEADACHES, POSSIBLE UNDERLYING CAUSAL CONDITIONS MUST BE EXCLUDED TO RULE OUT A SECONDARY CLUSTER-LIKE HEADACHE (CLH). The observation of some cases with clinical features mimicking primary CH, but of secondary origin, led us to perform an extended review of CLH reports in the literature. We identified 156 CLH cases published from 1975 to 2008. The more frequent pathologies in association with CLH were the vascular ones (38.5%, n = 57), followed by tumours (25.7%, n = 38) and inflammatory infectious diseases (13.5%, n = 20). Eighty were excluded from further analysis, because of inadequate information. The remaining 76 were divided into two groups: those that satisfied the ICHD-II diagnostic criteria for CH, 'fulfilling' group (F), n = 38; and those with a symptomatology in disagreement with one or more ICHD-II criteria, 'not fulfilling' group (NF), n = 38. Among the aims of this study was the possible identification of clinical features leading to the suspicion of a symptomatic origin. In the differential diagnosis with CH, red flags resulted both for F and NF, older age at onset; for NF, abnormal neurological/general examination (73.6%), duration (34.2%), frequency (15.8%) and localization (10.5%) of the attacks. WE STRESS THE FACT THAT, ON FIRST OBSERVATION, 50% OF CLH PRESENTED AS F CASES, PERFECTLY MIMICKING CH. THEREFORE, THE IMPORTANCE OF ACCURATE, CLINICAL EVALUATION AND OF NEUROIMAGING CANNOT BE OVERESTIMATED.

PMID: 19735480 [PubMed]
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Link to: cluster-LIKE headache:

IN: "Medications, Treatments, Therapies --> "Important Topics" --> "Cluster-LIKE headache"