My headache history began about 20 yrs ago...severe headaches w/sudden onset behind right eye... totally different from any headache I ever had before.  After the first time -with headaches coming and going for a week or so (can't remember that long ago) - nothing for about 3 yrs then nothing for 2 yrs then nothing for 7 yrs and then another 7 yrs ago was my most recent episode...up until about 3 weeks ago.  Most times it presents itself the same way...I can feel it coming on - sometimes for days and I know right away it's "that" type of headache.  The episodes in the past could not have lasted more than a week or two b/c otherwise I think I would remember.

So now to the present... about 1/2 of my mystery headaches occur in the night waking me up in severe pain - other half random throughout the day.  Lasting from approx 1 hr to 3 hrs. 

I have no weeping eyes or running nose... The pain is always behind my right eye and I cannot do anything but lie down, curl up and rub my feet together. 

After explaining all this to the dr. she thinks migraine...I asked how she could tell migraine vs cluster and she said "well it could be an a-typical migraine or even an a-typical cluster".  She gave me some drugs to try...which I've tried once with not much success...

I guess till I know for certain by narrowing things down - I'm kind of up in the air over these mysterious headaches.

I really have to try and force my self to lay down, but that usually only happens because I am completely exhausted from the "dance".

Jrcox

You're not being fair to yourself in not working with the doc to find meds/doses/combinations which work for you. Most of us have had to run trials of treatments  before finding those which work AND then face the frustration, which is not uncommon, for a successful treatment plan to stop working (and having to start again!)

The point being: patience and persistence are survival skills with complex headache disorders.
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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:

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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]

ScarlettFiesta wrote on Nov 11^th, 2009 at 6:28pm:



Not everyone has watery eyes and stuffy nose, but most have some sort of symptoms that involve the eyes and nose, My right eye burns, hurts, and turns blood red. The right side of my nose feels stiff, numb, tingles, and the outer skin has a strange tickle.

As for wanting to lay down and curl up, everyone has diff. symptoms but most tend to find it hard to lay down, we pace the floor, bang our heads against walls, cry, scream, throw stuff etc...

The diff. between a migraine and a cluster is the pain level, length of episodes, and sometimes alarm clock type episodes. When you have a migraine you suffer from pain and it not fun, but most people who suffer clusters find their self at some point weighing what life has to offer.

I think every Clusterhead has found them self in the ER at least once or twice, has seen anywhere from 5 to 25 diff. doctors.

I hope this helps you some. I wish you the best!

Good Luck

Jennie