my name is justin. i had my first attack over a year ago. i wont get into all the horror, im sure u all know. went through all the tests and medications and after about 4 wks they just stopped. i never did actually get a proper diagnosis but my gf at that time spent literally days researching and learned about ch. after the headaches stopped i tried to forget about it but the thought was always there that they may return. and they did, about 4 days ago. i woke up at around 3am and immediately knew what was happening. theyre worse this time. more intense, more frequent. but the worst part is the fear and anxiety of the next one. which i know is in about 6 or 7 hours if im lucky enough to make it that long. i have calls in to everyone i know trying to find some sort of O2 rig. even if its a welding bottle with a hose on it, i dont care. i dnt even know if O2 will work for me but everything i've read says its the best bet. right now ive been up since yesterday morning living on redbull and what little food i can choke down. im exhausted and i'm terrified. i know this isnt how an intro is supposed to go and i didnt do anything on my profile, but i read the title page of this site and started crying. i knew i needed to get some of this out and i think this is prolly the best place. my mom is the only one in my life that was around thru the first attack and everyone now is looking at me like ive lost my mind. which i suppose i have.

If I understand you, you are not seeing/or have been treated by a skilled doc.

It's not wise to assume you have Cluster and to start self-directed treatment without a good diagnosis. There are a number of disorders which mimic Cluster, some of which can be quite serious.

Seriously urge you to explore your access to a headache specialist. So many of us have spent years trying to find skilled medical care that findin a good guide is essential.
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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. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or ; On-line screen to find a physician.

5. 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.

6. 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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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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See the PDF file, below. These are the kinds of treatments which a skilled doc will be using. Good to print this article and use as a tool to discuss treatments with any doc you see.

i saw my gp today. she gave me imitrex nasal spray and referred me to a neurologist. the spray is way too expensive as i dont have any insurance right now. a very dear friend found an o2 tank and regulator and brought it to me this evening. i had one early this morning, around 4 i think. not sure. been pf all day though! right now i almost feel normal. i know i shouldnt assume these are ch but it sure seems like it. i am taking the right steps to get a proper diagnosis. i agree that its absolutely necessary to know exactly what is going on. i do know that i hate the taste of redbull! idk if its even helping but it makes me feel better and even if its only "in my head" (haha) im gonna have one when my eye starts watering or my temple gets hot. so ya, doing the dr thing, im in the middle of a disability determination for a mental illness, bipolar and social anxiety disorder, so hopefully medicade will kick in soon and i can get the help and treatment i need!!

Reference the bi-polar issue. I use lithium as my prevent medication for my CH. On cycle, I take 1200 mg a day. It blocks 60-70% of my attacks. I don't know if they are still using lithium as a front line med for the treatment of Bi-polar issues, might be worth discussing with your neuro. Could be a way to kill two birds with one stone.

Joe

Hang in there man. If you are indeed suffering from clusters, the worst is now behind you. You have access to wealth of information and an active community of fellow sufferers who can give you the tools and emotional support you need to deal with this. I've used this site and forums for years while dealing with my clusters, generally popping in when the beast is back and sort of disappearing when it goes into hibernation. From my own experience, it was the not knowing that was the worst by far. Hopefully in time you will feel the same.