Hi and welcome to the site.  Sorry to hear you are in a bad way.  Let's see if we can't get that straightened out

Some of what you describe is spot on.  Other stuff is a bit different from the 'classic experience'.  Don't let that put you off though.  We are all a bit different.

1st try taking the cluster quiz on the left <=  That should give you some idea if you are in the right neighborhood.

2nd start keeping a headache diary.  Recording time, duration, pain level, location, where you leak from, etc...  Also note what you did to try and relieve the pain.

Is your current Dr perscribing anything?  The typcial medical approach is two pronged: abortive and preventative.

An abortive medication is one which will quickly (one hopes) kill the pain.  These include Oxygen therapy, triptan injections or nasal sprays to name a few.

Preventative medications are used to prevent attacks from occuring in the first place.  These can take some number of weeks to become effective.

There is also the possibility of using a steroid taper to stave off the attacks while the preventative medication builds up in your system.

In addition to these methods there are also other "non traditional" methods explored at Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or .

Take a lot of time and read through everything on this site.  There are many years of experience to be found on these pages.  The collective knowledge is often more than you find at a Dr's office.  And I find that the best single weapon in this fight is a well educated clusterhead.

-Dennis-

You've received to great pieces of advice!! A headache specialist neuro is critical to an accurate diagnosis and an effective treatment regimen.

An educated patient VASTLY improves ones chances at a correct diagnosis and a good treatment regimen.

If it does turn out to be CH.....and my amateur, uneducated guess is leaning that way.....insist on oxygen, with a home set up. I went from 90 minute attacks to aborting in 6-8 minutes, just by huffing oxygen. Read the oxygen info tab on the left, a wealth of knowledge and critical to using it correctly.

Good luck on your journey, this is the tough part, once you figure out for sure what you have, you'll have an easier time figuring out how to fight it.

Joe

You like your GP as much as I do my primary care doc--but I would not give him control over treatment of my cancer because, for all his good intentions, he doesn't know enough about that area of medicine.

What you have said about your GP's treatment says that he does not know how to treat Cluster. The approach for migraine and cluster can be quite different.

None of the meds you are using for are useful for Cluster. The Imitrex is the closest but the pill form doesn't work quickly enough to be helpfu. The injection is excellent but any doc will have to work with the insurance co. to get more approved (explore this question in the OUCH site, left buttons).

With two complex, if related, disorders, you really need a headache specialist.

To give you some background on Cluster treatments--to help see what you should be receiving--see the PDF file below and print out a full version of the abstract below.
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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]

I missed your mention of seeing a neurologist in a couple of days. We have too many members who have found neurologists as poorly trained/experienced in headache as any docs. (And there is research to demonstrate the low level training they receive.)

After you see the neuro, compare his treatments with those in the articles I gave you. There should be a strong parallel; if not, please get back with details of what he has advised/Rx.

Please don't take pain medication for what you think is a cluster headache.  It doesn't work and can become a much worse problem than even a cluster HA.

If the Pred. taper doesn't block attacks within a few days you may have to start another round at a higher startin dose. Commonly, 60 to 80mg is used.

Not to be concerned: just part of the trial and error business of treating CH.

I'm with Kevin, hang on to that doc with both hands. He sounds like he knows some about cH, and the offer to "just call him" if you have nay problems, WOW!

Steroids work at doses as low as 30 mg a day for me to block 100% of my hits. For most, it'll block the beast while you're taking it. For a small percentage, it'll actually halt a cycle! Hoping you're one of the lucky ones.

I didn't see a mention of oxygen, do read up on that, print out the material and talk to the doc. If the steroids don't abort your cycle, 02 will be your new best friend, I promise!

Joe