This joy of my life started when I was 13. I always have them on the right side of my head. I know when they are coming and have about 15 min to get home. First the eye, the nose and then the teeth. I would try anything to make the pain stop. Chock myself with a bandanna, Inflickt pain someware else to make it stop. One day I layed on the floor and was curling my toes and after the ch stopped I did not realize I peeled off 5 of my toenails. When I was 20 I went to doctors and was given medicine for migraines. This did nothing. My cycles would start in the summer and last for three or four months and I would have them every day. Finally found a doctor that new what I had and put me on lithium and verapamil and o2. This help out a lot, masked the pain down. Now that I am 47 I been on the medication to long. I have 1-4 a day. And vary morning noon and night. What really bad is the duration has changed from 1-2 hours to 6-8 hours. It's so bad my wife hide all the guns, after a 6 hour ch I can't stand up my legs shack and I am drained.

Your story is all too common: well intended doc but limited knowledge/experience dealing with a disorder which is rarel the basis of good training in med school.

Your present treatments are standards BUT there are others to be explored. We often have to tailor a package which works for us, i.e., need a guide who will help develop this package.

So, if at all possible, seek a headche specialist:

LOCATING HEADACHE SPECIALIST

1. Search the OUCH site (button on left) for a list of recommended M.D.s.

2. 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.

3.  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.

4. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE; On-line screen to find a physician.

5. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE 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.

6. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE 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.
===
See the PDF file, below. It's an outline of the most common treatments which you should expect a good doc to be using. Suggest you print it and use as a tool to discuss (prod!) your options with any doc you see.

Personal knowledge is essential for us since we must often have to make judgments on the quality of care we are receiving (a major argument for working with a headacche specialist). So, read and mine this site for basic medical literature to give you a knowledge base.
===



Cluster headache.
From: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE (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]
===
Explore buttons, left, starting with the OUCH site.

Two things. First, you mention common interventions but not the doses. It is possible you are on the low range of intevention effectiveness. Don't know but as Bob said, there are altenatives. Second, while 6-8 hour attacks are not "uncommon," they are not the norm for CHs. I think I've had two such in the three + decades of these. I should think this ought to be explored by a headache specialist as well. Let us know what's going on with you as you explore ways to beat back the beastie. Blessings. lance

Welcome to the board, only a couple things to add to the excellent advice you've already been given:

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Read this link to make sure you're getting the maximum effectiveness from your 02. Many who stopped getting any relief at lower flow rates, 15 LPM or so, found relief jumping up to 25 and even 45 LPM.

Go to the medications section of this board and read the post "123 pain free days and I think I know why" A daily vitamin/anti inflammatory regimen, all over the counter stuff, that's providing a lot of pain relief for a lot of people. Cheap, seems to be effective, worth a shot.

Finally, visit our sister site:

Clusterbusters.com

It explores the use of alternative treatments, outside of mainstream medicine, to treat CH. Several close friends of mine on this board have gone this route and after 10, 20 or more years of CH, they are now pain free.

Just don't give up. As Bob and Lance have already said, there is so much now available to treat this demon. We'll help you any way we can.

Joe

In 32 years of Cluster Headaches, I don't think I ever had a 5 hours long one. I would say three hours was the most before falling into some sort of coma-sleep. Of course, after such a heavy crisis, I'm on the headache hangover for the next day or so and pain is there but so smooth compared to the crisis...
What you describe seems worst than what I ever went through.

I read earlier today on a very scientific Web page that no one should ever take more than 480 mg of Verapamil in a day, and my neurologist has prescribed me much more, that is 720 mg daily. So I would say what wimsey1 points out might be relevant. Maybe you are on the "low range of intervention effectiveness".