Hi Everyone,
A brief background;
Cluster headache sufferer.
Date of onset-Fall 1970 15 years old. Began treatments around 1980 when the pain became more than I could handle. Took various meds which I can't remember what they even were. Always episodic. Longest period without being in a cycle 5 years. Spent hours dealing with the excruciating pain that you all know so well. Around 1994 I was given Imitrex cartridges. This was my salvation! Whether I was awoken in a full blown headache, one shot eliminated the pain within 5 minutes. If during the day when I felt the aura of the headache to follow, one shot prevented the pain from coming. In conjunction with prednisone and verapimil, my cycles lasted usually 2 months. Also tried oxygen treatments both at home and in the hospital, but to no avail or relief. Was changed from prednisone to Lithium Carbonate 300 mg 2x daily with Verapimil ER 240 MG 1x daily in 1999. Recent cycles 1998, 2002, 2006-usually lasting 2, sometime 3 months. Am in a cycle now which began 5-1-09. Began same course of treatment as before and tried oxygen again-didn't work. Now, the Imitrex is no longer working. Am back to pacing, hot-cold showers, pounding my temple area, neck rotations, having my wife walk up my back, lifting a chair over my head, cursing the pain, jumping into my cold pool, etc. I am getting at least one 2 1/2 - 3 hour headache per day, and about every 3 days I am getting 2. I see a neurologist in 2 days. Because the Imitrex had prevented these painful episodes for me for the last 15 years, I haven't kept up on any advances. The computer screen is hurting my eyes, so any advice, help, suggestions from those of you who know probably more than the neuro I will be seeing will be greatly appreciated. I just can't concentrate or process and research all of the info out there. Haven't slept for nearly 3 days, and am having those thoughts again about where the highest bridge is located.
With Much Appreciation,
Jay

Hi Jay.

Sorry to hear you've been a club member for almost 40 years.  Doubly sorry that your usual tools aren't working any more.  I'm not an oxygen expert, but ditto to Dennis' comments.  I often read threads like yours where folks say that O2 didn't work for them, only to find out that it wasn't administered in what is now considered the optimum flow rate.  As for other therapies, Imitrex tabs work for me, and Lithium worked for me in the past; haven't used it in years.  My new neuro is trying me on Topomax this year as an alternative to the Lithium so we don't have to monitor Lithium toxicity levels.

Hope you find relief of a medical nature soon.  No resorting to gravity!

Scott.

Let me throw some reading to get you up to speed on current therapies.....
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Cluster headache.
From: Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or (Orphanet Journal of Rare Diseases)
[Easy to read; one of the better overview articles I've seen. Suggest printing the full length article--link, line above--if you are serious about keeping a good medical library on the subject.]

Leroux E, Ducros A.

ABSTRACT: Cluster headache (CH) is a primary headache disease characterized by recurrent short-lasting attacks (15 to 180 minutes) of excruciating unilateral periorbital pain accompanied by ipsilateral autonomic signs (lacrimation, nasal congestion, ptosis, miosis, lid edema, redness of the eye). It affects young adults, predominantly males. Prevalence is estimated at 0.5-1.0/1,000. CH has a circannual and circadian periodicity, attacks being clustered (hence the name) in bouts that can occur during specific months of the year. ALCOHOL IS THE ONLY DIETARY TRIGGER OF CH, STRONG ODORS (MAINLY SOLVENTS AND CIGARETTE SMOKE) AND NAPPING MAY ALSO TRIGGER CH ATTACKS. During bouts, attacks may happen at precise hours, especially during the night. During the attacks, patients tend to be restless. CH may be episodic or chronic, depending on the presence of remission periods. CH IS ASSOCIATED WITH TRIGEMINOVASCULAR ACTIVATION AND NEUROENDOCRINE AND VEGETATIVE DISTURBANCES, HOWEVER, THE PRECISE CAUSATIVE MECHANISMS REMAIN UNKNOWN. Involvement of the hypothalamus (a structure regulating endocrine function and sleep-wake rhythms) has been confirmed, explaining, at least in part, the cyclic aspects of CH. The disease is familial in about 10% of cases. Genetic factors play a role in CH susceptibility, and a causative role has been suggested for the hypocretin receptor gene. Diagnosis is clinical. Differential diagnoses include other primary headache diseases such as migraine, paroxysmal hemicrania and SUNCT syndrome. At present, there is no curative treatment. There are efficient treatments to shorten the painful attacks (acute treatments) and to reduce the number of daily attacks (prophylactic treatments). Acute treatment is based on subcutaneous administration of sumatriptan and high-flow oxygen. Verapamil, lithium, methysergide, prednisone, greater occipital nerve blocks and topiramate may be used for prophylaxis. In refractory cases, deep-brain stimulation of the hypothalamus and greater occipital nerve stimulators have been tried in experimental settings.THE DISEASE COURSE OVER A LIFETIME IS UNPREDICTABLE. Some patients have only one period of attacks, while in others the disease evolves from episodic to chronic form.

PMID: 18651939 [PubMed]
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Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

Here is a link to read and print and take to your doctor.  It describes preventive, transitional, abortive and surgical treatments for CH. Written by one of the better headache docs in the U.S.  (2002)
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Michigan Headache & Neurological Institute for another list of treatments and other articles:

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or
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As you have time, explore buttons, left, starting with OUCH and the multiple internal links.
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Hope your doc is a headache specialist vs. a neurologist with little experience/training in headache--a too often picture. If you haven't done so, I'd ask directly about your doc's background. If you want leads to finding a new doc, drop a line.
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As questions arise, let us know. Easier to respond to specific requests which meet your needs directly.

Thank you Bob an Charlie. Bob, I appreciate all the current info., and will print out that cite and bring it to my neuro. He is not a headache specialist as so few are. However he is in the same group with a Dr. who is a headache specialist but is primarily involved with research now. I used to see him years ago and he is dedicated beyond belief.    Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or  I have already contacted him to let him know I will be in tomorrow to see one of his partners, and asked if he would object consulting if necessary. When I awoke this morning, he had already written me back and stated he would do what he could do. I have another appointment set up with a nuerologist that specializes in CH's, but that is a month away. I appreciate your offer on providing leads for new docs & I may take you up on that if necessary. I know that I am going to have to become involved with reading up on what is new, and thank you for giving me some starting places. For 14 years I was fine with my regime, and the old adage if it ain't broke, don't fix it, but that seems to have changed now. I knew you sufferers, and those in long term remissions would be the best people to contact and am very glad that I found this forum and have met great new people in just 24 hours.
Charlie, your idea is certainly unique but plausable.  Blood vessels become vasodilated during CH's. The trigeminal nerve is activated. This causes many things such as the drooping eye, nasal discharge, and pain. Some people get twitches. Considering we are all born with the "fight or flight" within our autonomic nervous system, what you describe sounds like a way to practice or somewhat contol it.  During a dangerous situation such as physical harm, a mugging, a fight, etc. our autonomic nervous system kicks in. It is unvoluntary. The brain recognizes the danger and prepares the body for what is called the fight or flight reflex. Blood is quickly drained from the face and brain and transported to the extremities. Adrenalin is rapidly produced. The body is prepared to stay and fight or run away-flight.
When I read your info. it sounded as if it could be similar, an alternate way of decreasing the blood flow in the face and brain and carrying it to your extremities. This in theory should reduce the pain as the blood vessels would constrict. I'll save this for future reference. With all that is going on so suddenly, I can't do everything. But allow me to express my gratitude for this info. and the time it took you for writing it, And also for taking an interest in my situation.