Hi everybody.

I've been struggling with this for over a year now... but was just diagnosed two days ago.

I guess I'm pretty lucky... hear some people struggle for years without a proper diagnosis.

Anyway... I've just started treatment with Prednizone... will report back to neurologist about that.

So far, pain is moderated... although not gone.  It's nice to have it lessened, at least.

Just wanted to say hello.  Glad to know I'm not alone.

Had never even heard of this two days ago.

Dev

G'day Dev. Welcome home.

Welcome to the board, glad you found us. I've been chased by the beast for about 31 years, I've gotten the best results using a 2 pronged approach. When my cycles start up again,like you, I go on a prednisone taper for about 10 days. This gives my preventative med a chance to take hold.

1: A good preventative therapy. A med you take daily, while in cycle, to reduce the number and the intensity of your attacks. I use lithium at 1200 mg a day, Verapamil and Topomax are also popular prevents. For me, lithium will block 70-80% of my attacks.

2: A good abortive. An attack starts, now what? Your first line abortive should be oxygen. Sounds weird but I can abort an attack in 6-8 minutes just huffing oxygen. It's enjoying a huge success rate on the board. Read the link on the left "oxygen info" to understand how to use it.

Imitrex injectables and nasal sprays are also popular abortives. You have much reading to do, glad you found us, hope we can help you out.

Joe

Dev,

Prednisone is used as a "Transitional Strategy of Treatment."  It is normally prescribed in a taper over a 10 day to two week period.  Prednisone is often accompanied with a prescription for a preventative as they can take a week or more to titrate up to a therapeutic dosage, and a bail-out abortive (triptan nasal spray or injection) in case you have a burn through attack.

If you're only taking prednisone...  you're rolling the dice hoping for it to abort the cycle...  Most of us that have used prednisone tapers fond they worked effectively in reducing the frequency and intensity of our attacks.  Unfortunately, most of us also found the attacks came back with a vengeance when we completed the taper.

Neurologists most experienced in treating cluster headache sufferers will suggest oxygen therapy.  Ask for an Rx for oxygen therapy when you report back to your neurologist with the prednisone results.  Keep us posted.

Take care, good luck and welcome aboard.

V/R, Batch

A good introduction....
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Cluster headache.
From: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE (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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Explore articles on the Michigan site:

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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:

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE


 

Hi Dev,

Welcome home!!!
We spoke via email the other day having noticed you on another sight.

I'm glad you came here as you will find tons of people, information and support.

Best,

Eric

Thanks for all the info and replies... god this has been awful... but it does seem to be a little better, day 5 on the prednizone... but will definitely talk to the doctor about the suggestions made here.  So grateful to know what others' experiences are like... means a lot... really does.  Cheers!  -Dev