I have been suffering with chronic cluster headaches since 2009. I have tried many options and can manage pretty well normally. I have never had a break in attacks more than 60 days. The frequency and intensity drop down to a very reasonable level 2-4 a day 1-6 in intensity. However I get "spikes" if you will throughout the year driving frequency to 6-12 attacks per day with intensity of 8-10. My attacks are mostly left sided unfortunately sometimes they shift left-right or even worse bi-lateral afflicting both sides at once. My neurologist thinks it may be due to a significant amount of concussive damage in my head mostly from sports. The attacks spike for me around dec-jan, mar-may, july-oct. The pain is so bad I blackout. Unfortunately they aren't alot of medication options for me due to side effects, no effect, or unacceptable risks. Rest assured I am not suicidal I am too stubborn for that. Some years have been worse than others in 2010 I had a very similar pattern to this cycle and I am afraid it will be like 2010 or worse. I spent almost 10 months in 2010 on oxycontin and coming off oxycontin was extremely unpleasant causing rebound headaches and withdrawal. I never want to go through that again. I am hoping someone can tell me how to manipulate or change a cycle of attacks. Any help would be awesome. I will be posting on this site with all my data I have gathered over the years including my own experiments/ studies on Cluster Headache preventive care and aborts. I have kept journals over the years documenting dates, times, diet, activity, etc. I am just hoping someone out there has tried something I haven't.

To bring you up to speed on my previous treatments I have tried the following
o2, triptans (caused complications), painkillers, diet modification and regulation, excercise modification and regulation, channel blockers (caused complications), melatonin, energy drinks (some work better than others), capsacin, Benadryl+DHE, meditation, electric stimulation, accupuncture, electric shock treatment, anti-depressants, Seroquel.

Please note that though I have tried these methods not all of them were effective or presented unwanted side effects or unacceptable risks. I do still use some of these treatment options to maintain my Headaches and the cycles.

Thanks for taking your time to read my thread. Any help is GREATLY appreciated.

Is your Neuro a headache specialist OR has deep experience/knowledge? Very clear that most gen Neuros lack adequate education/experience and, especially with the complex history you present, considering a consultation would be a good investment.
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LOCATING HEADACHE SPECIALIST

1. Yellow Pages phone book: look for "Headache Clinics" in the M.D. section and look under "neurologist" where some docs will list speciality areas of practice.

2.  Call your hospital/medical center. They often have an office to assist in finding a physician. You may have to ask for the social worker/patient advocate.

3. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or On-line screen to find a physician.

4. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or Look for "Physician Finder" search box. They will send a list of M.D.s for your state.I suggest using this source for several reasons: first, we have read several messages from people who, even seeing neurologists, are unhappy with the quality of care and ATTITUDES they have encountered; second, the clinical director of the Jefferson (Philadelphia) Headache Clinic said, in late 1999, that upwards of 40%+ of U.S. doctors have poor training in treating headache and/or hold attitudes about headache ("hysterical female disorder") which block them from sympathetic and effective work with the patient; third, it's necessary to find a doctor who has experience, skill, and a set of attitudes which give hope of success. This is the best method I know of to find such a physician.

5. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or NEW certification program for "Headache Medicine" by the United Council for Neurologic Subspecialties, an independent, non-profit, professional medical organization.
        Since this is a new program, the initial listing is limited and so it should be checked each time you have an interest in locating a headache doctor.
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What follows are alternatives to meds.

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Ther Adv Neurol Disord. 2010 May;3(3):187-195.

Hypothalamic deep brain stimulation in the treatment of chronic cluster headache.
Leone M, Franzini A, Cecchini AP, Broggi G, Bussone G.

Headache Centre, Neuromodulation and Neurological Department, Fondazione Istituto Neurologico Carlo Besta, via Celoria 11, 20133 Milano, Italy.

Abstract
Cluster headache (CH) is a short-lasting unilateral headache associated with ipsilateral craniofacial autonomic manifestations. A POSITRON EMISSION TOMOGRAPHY (PET) STUDY HAS SHOWN THAT THE POSTERIOR HYPOTHALAMUS IS ACTIVATED DURING CH ATTACKS, SUGGESTING THAT HYPOTHALAMIC HYPERACTIVITY PLAYS A KEY ROLE IN CH PATHOPHYSIOLOGY. ON THIS BASIS, STIMULATION OF THE IPSILATERAL POSTERIOR HYPOTHALAMUS WAS HYPOTHESIZED TO COUNTERACT SUCH HYPERACTIVITY TO PREVENT INTRACTABLE CH. TEN YEARS AFTER ITS INTRODUCTION, HYPOTHALAMIC STIMULATION HAS BEEN PROVED TO SUCCESSFULLY PREVENT ATTACKS IN MORE THAN 60% OF 58 HYPOTHALAMIC IMPLANTED DRUG-RESISTANT CHRONIC CH PATIENTS. The implantation procedure has generally been proved to be safe, although it carries a small risk of brain haemorrhage. Long-term stimulation is safe, and nonsymptomatic impairment of orthostatic adaptation is the only noteworthy change. Microrecording studies will make it possible to better identify the target site. Neuroimaging investigations have shown that hypothalamic stimulation activates ipsilateral trigeminal complex, but with no immediate perceived sensation within the trigeminal distribution. Other studies on the pain threshold in chronically stimulated patients showed increased threshold for cold pain in the distribution of the first trigeminal branch ipsilateral to stimulation. These studies suggest that activation of the hypothalamus and of the trigeminal system are both necessary, but not sufficient to generate CH attacks. IN ADDITION TO THE HYPOTHALAMUS, OTHER UNKNOWN BRAIN AREAS ARE LIKELY TO PLAY A ROLE IN THE PATHOPHYSIOLOGY OF THIS ILLNESS. HYPOTHALAMUS IMPLANTATION IS ASSOCIATED WITH A SMALL RISK OF INTRACEREBRAL HAEMORRHAGE AND MUST BE PERFORMED BY AN EXPERT NEUROSURGICAL TEAM, IN SELECTED PATIENTS.

PMID: 21179610 [PubMed]
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Curr Treat Options Neurol. 2011 Feb;13(1):56-70.
MANAGEMENT OF CHRONIC CLUSTER HEADACHE.
Leone M, Franzini A, Proietti Cecchini A, Mea E, Broggi G, Bussone G.
SourcePain Neuromodulation Unit, Department of Neurology, Headache Center, Carlo Besta Neurological Institute Foundation, Via Celoria 11, 20133, Milano, Italy, leone@istituto-besta.it.

Abstract
OPINION STATEMENT: Primary cluster headache (CH) is an excruciatingly severe pain condition. Several pharmacologic agents are available to treat chronic CH, but few double-blind, randomized clinical trials have been conducted on these agents in recent years, and the quality of the evidence supporting their use is often low, particularly for preventive agents. We recommend sumatriptan or oxygen to abort ongoing headaches; the evidence available to support their use is good (Class I). Ergotamine also appears to be an effective abortive agent, on the basis of experience rather than trials. We consider verapamil and lithium to be first-line preventives for chronic CH, although the trial evidence is at best Class II. Steroids are clearly the most effective and quick-acting preventive agents for chronic CH, but long-term steroid use carries a risk of several severe adverse effects. We therefore recommend steroids only if verapamil, lithium, and other preventive agents are ineffective. In rare cases, patients experience multiple daily cluster headaches for years and are also refractory to all medications. These patients almost always develop severe adverse effects from chronic steroid use. Such patients should be considered for neurostimulation. Occipital nerve stimulation is the newest and least invasive neurostimulation technique and should be tried first; the evidence supporting its use is encouraging. Hypothalamic stimulation is more invasive and can be performed only in specialist neurosurgical centers. Published experience suggests that about 60% of patients with chronic CH obtain long-term benefit with hypothalamic stimulation.

PMID:21107766[PubMed]
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Neurology. 2006 Nov 28;67(10):1844-5. 
Acute hypothalamic stimulation and ongoing cluster headache attacks.

Leone M, Franzini A, Broggi G, Mea E, Cecchini AP, Bussone G.

Department of Neurology and Headache Centre, Istituto Nazionale Neurologico Carlo Besta, via Celoria 11, 20133 Milano, Italy. leone@istituto-besta.it

Long-term hypothalamic stimulation is effective in improving drug-resistant chronic cluster headache (CH). We assessed acute hypothalamic stimulation to resolve ongoing CH attacks in 16 patients implanted to prevent chronic CH, investigating 136 attacks. A pain intensity reduction of > or =50% occurred in 25 of 108 evaluable attacks (23.1%). Acute hypothalamic stimulation is not effective in resolving ongoing CH attacks, suggesting that hypothalamic stimulation acts by complex mechanisms in CH prevention.

Publication Types:
Evaluation Studies

PMID: 17130420 [PubMed]

Drew, your list of attempts to reign in the beast is impressive, although you don't tell us the dosage levels or what the complications were. Very often we find sufferer's use too low a dose for effective treatment, or call a normal side effect a "complication" and reject the drug. Everything is a tradeoff, and everything has some side effect or other. Still, if we assume you are intractable (as I am pretty much) I would draw your attention to what Bob wrote at the end of his post:

Quote:


Nor did you mention ONB. It's a logical place to start before going after the occipital nerve stimulation. And as was pointed out in your other post, your O2 regime is not tweaked to its best effect. Read up and you'll find this can be more effective with the suggested use pattern. God bless. lance

To clarify and add... The stim treatments I have received were external and due to damaged nerves and tissue it cause an immense amount of pain that wouldn't stop for hours. I was sedated after the last attempt at stim bbecuase of pain. My neuro does not want to risk minimally invasive procedures also due to my scar tissue. The scar tissue covers about 40-45% of my temporal lobe and 30-33% of my occipital lobe. Surgery would require removing part of my skull and even then the scar tissue presents a big problem. Also disturbing tissue around my hypothalamus risks increasing the size of the gap that has formed above my hypothalamus between my left and right hemispheres from previous head trauma. The further that gap opens the higher risk of permanent brain damage effecting my speech, sight, and motor skills/dexterity. In regards to ONB I have not discussed that with my neuro, but I will ask him next visit. I am sure there is a reason he hasn't brought it up. I will also check my journals to see if there is mention of a nerve block anywhere.

The pain killers were never prescribed as a cure. My neuro prescribed them to improve my quality of life and give me a crutch to keep myself up so to speak. At the time I was last prescribed painkillers I was having 8-14 attacks per 24 hrs and wasn't sleeping without medical aid and incapable of sleeping more than 3 hrs. I wasn't able to work or drive myself anywhere. After 6 months my attacks drastically dropped unexpectedly and I got off the pain meds. I then went through a terrible withdrawal and experienced excruciating rebound headaches which lasted about 2 months. That is why I don't want to go back on pain meds. My neuro specializes in traumatic injury which is why I see him. CH was chronic before the traumas but not nearly as intense as they were/are after my injuries. As a result of injury to my neck and lumbar I have random nerve misfires which can make me twitch, jump, feel numb, and feel pain randomly. I have had a 6 surgeries to correct most of the damage from when I was hit by a car which was the cause of most of my problems but I have had several sports injuries before that which is where most of my brain injuries came from. I go through regular electric stimulation for rehabilitation from being hit by the car, surgeries, and nerve therapy which for some reason more often than not triggers a CH or intensifies and existing CH. I have also tried electric shock treatment which failed miserably ( I am sure most of you reading that were like DDDUUUUUUHHHHHHH but desperate times call for desperate measures) I am going to start the D3 method Saturday and am anxious for results. It is the kind of treatment I am looking for so I really hope it works. If I can manage better on D3 I can start more aggressive treatment with nerve therapy and more intense physical therapy. If I am going to live with CH I might as well be healthy and able to do the things I love. I haven't kayaked, hiked, or climbed in 4 years. I can't even tell you guys how amazing it would be to be able to do those things again.

Thanks for the advice Batch I will hold off on D3 until I can get a test done. I have an appointment with my neuro wed I will ask if I can have the test done then or if I have to see my PCP. Do you know of any other options aside from the D3 that have been successful?