Well just wanted to start by sayin Hi.. I am a mother of 4, my girls are 10 & 14 and my step-kids are 12 & 14. I also have 2 four legged kids a Min Pin (Tiny) & a Doberman (Brutus). We recently bought a new a house in Nov. so when my headaches started in Dec. I thought maybe something in the house was causing them. My headaches started December 28th 2009 & since they were so severe & i had a history of epilepsy when I was younger I figured I'd better get to a nerologist...saw him late February...diagnosed me with cluster headaches...never heard of them before that day.He put me on Indomethicin & a steroid (dexamethasone)?..the day I started the meds my headaches went away so, for 13 days (which is how long the steroids pk lasted) I was headache free...it was wonderful..about a week after the steroids were finished the Beast returned. I am currently on the last 2 1/2 hours of my 72 hour EEG...can't wait to get this crap off my head...when I go back @ 2pm I am going to beg for some kind of medication...I know steroids aren't good taken long term but i need something...Wish me luck guys.

Joe is suggesting that your doc has given you incomplete treatment. This is not unusual for even neurologists, in our collective experience, have little EFFECTIVE knowledge about CH. We know from formal studies that their medical education is terrible around headache.

His Dx of cluster, plus using Indo. tends to confirm this for me. Indo. is only effective for a very uncommon subset of headaches but not for Cluster. And, as Joe suggests, you should have been put on a preventive med to take the place of the steriod which, as you have experienced, stop a cycle dead but it comes back as soon as the med is stopped.

Suggest you print out the entire article, which follows (link on line 2), as a start in your learning. Print out the next links and use the list of treatments to use as discussion tool when you see him next. As you have time, explore the OUCH site (buttons left) where you will find a mass of good information.
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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 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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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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Sorry to hear that the Beast has enter your life.

As Mel said you have been given the nessesary arms to fight.

There is lots of info on this site  to educate yourself and in turn educate the various "MDs" you will come across.

The only good MD is the one who is willing to open his or her's mind to something that they  do not understand.

All the best .

Thanks to all who have responded to me...since I got the "medusa wires" ( EEG cap off my head). I have been doing ok...my doc got me back on steroids just until I see him on the 20th..except now there is a little problem...he said..."well if all the tests look good we will see you on the 20th of April.".. well guess what?...his recep. called me Monday & said can you come in on Thursday the 2nd?...I was like "What?"..my heart sank , what should I make of this...I know I'm probably reading way more into it than I should but what am I supposed to think when they give me the last appt of the week...Thursday @ 4pm...they are closed on friday  ?....If they say I need more tests I will scream!!!

Abolutely you say YEAH!!!!!!!!!


To me it means they want to take you off the pred. and on to something that will be a lot less dangerous to your body and will work.   Ask for 0xygen.

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PLEASE keep us updated.  We want to know how it went.

Linda

Your complex history puts us out of your league in terms of suggesting treatment responses.

But it's also a lesson for all of us that cluster can be a secondary problem (arising from some other disorder). Sorting all of these issues out is often a difficult process, taking much time and commitment. A clue that such an issue is going on is when conventional CH treatments don't work--even when the symptoms are CH--it's time to look some more re. causation.