hey there, my name is robert im from north dakota. im 26 and have been experiencing this headaches for about 7 years now. i just got them again, and i just got over one.  i usually get them about every half year or so, they come on for a couple days and thats about all the longer they last. when i do get them i usually go the the walk in clinic and get a shot for pain which helps with imediate pain, and a small scrip for tramadol. the tramadol helped for a while, now its starting to not do a thing. i work in a body shop with a bunch of guys that basically dont believe this whole "cluster" thing, and i get made fun of for it. ive tried printing off info from the website for them to read but they just dont get it.  i tried oxycodene that my mom had one time and it seemed to help, but everytime i go to the doctor they think im just trying to score drugs so they just give me tramadol, which isnt very strong. theyre even starting to give me sobriety tests basically, like standing up and closing my eyes, touching my nose then the doctors fingers, stuff like that.  my mom, dad, sister, and fiance are the only ones that have really seen me haveing an attack, so i can see how other people have a hard time understanding it.
well thats about enough for now, i can feel it coming on again.

Your problemis finding a doc who knows headache. Present treatments (pain meds) are of no real value for Cluster.

See if you have the option of finding a skilled doc....

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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Start learning. Many of us have had to teach our docs on how to effectively treat us. Requires a doc with an open ego who will receive from you and so I suggest you print out these materials to give to whatever doc you use and use this information as a tool for discussing your options.

1. PDF file, below.

2.


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]

3. 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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4. Explore the buttons, left, starting with the OUCH site.

5.
A new (for me) site which is worth your attention: medical literature, films, plus the expected information
about CH.

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or



 

Hang in there! There are many things that you can get without a prescription- in fact the prescription my husband uses is LESS effective than welding O2 treatment and melatonin. EVERYONE is different, and it can't be stressed enough to get to a knowledgeable doctor, but there are so many things you can try that you don't have to wait for a prescription.

Our family and friends for the most part don't understand this condition ("Headaches, yeah, I get those too!") but everyone here does- it's an amazing feeling isn't it?

I'm a supporter, my husband is the clusterhead, and I say send us your fiance! Let us help her help you! We're here for her too, because we all know that you'll need to lean on her through this and she can lean on us!

And I will say this, because it was the info that almost dropped me to my knees it was so shocking to realize: after YEARS of thinking there was nothing else available to try to help my husband's headaches we came here and realized there are not enough years in a lifetime to try every treatment option available to us. To have that door of possibility and hope thrown open for us was one of the greatest feelings.

Some insurance plans require a referral to a neuro, others do not. Check with them first and then get in to see a neuro. He can diagnose you on or off cycle. It's pretty much a process of eliminating everything else.

For now, start a headache diary, when they start how fast they build, how high they build, how long they stay at peak, how fast they recede. Identify any triggers, foods, drinks, sleep cycles, etc., list what meds have and have not helped you. The more detailed it is the better chance you have of an accurate diagnosis. Good luck!

Joe