Yeah the decisions about HOW you treat your CH...that's about as personal and intimate as decisions get. I'm not much at giving advice, I understand my limitations! You'll find some on the board, like Bob Johnson, are very learned men with a great deal of medical knowledge. others, like Monty, are researchers, everytime something new is posted, he will post all the recent useages and trials that have been published.

About all I can offer is my personal experience, maybe it'll help shed light on your treatment path. Unlike you, a fireman, I was a cop, a TRUE hero!!!(for the un initiated, go to youtube, cops vs. firemen, starring Jake the fireman puppet..long running debate! ) So I had some of the same limitations as you regarding the alternate treatments and the dificulties having 02 at the ready, here is what I ended up with.

A cycle starts, I go on a 10-14 day prednisone taper. Like you, it blocks 100% of my attacks. At the same time I start on Lithium, building up to 1200 mg a day. At that dose if I didn't tell you I was taking it, you wouldn't know it. It blocks about 60-70% of my attacks. For some, a short burst of prednisone will actually abort an entire cycle, hard to tell but from what you posted that may have been what happened to you. If it was me I'd sure want to try that route again

So now I'm on 1200 mg a day of lithium, I'm only getting hit every few days instead of 2X a day. For attacks my first abortive is oxygen. I kept an E-Tank in the trunk of my cruiser for many years, and would just send an MDC message to my beat partners I was out of service for 10-15 minutes and they'd cover for me.

For times when that wasn't an option, the imitrex injectables would save me. Expensive, and I HATE needles, but they never failed to abort an attack.

On cycle I'd always have some sugar free Red Bulls stashed as they'd stop shadows and also seemed to speed the abort times for me when combined with oxygen. Got me thru a 30 year career.

And as you know, God only made cops so firemen could have heroes too!

Joe

I can only tell you waht works for me.

2 weeks of verapamil at 720 MG then;

Prednisone taper while continuing the verapamil.

Imitrex injections for breakthrough attacks

I continue the verapamil regimen until I have gone 2 full weeks without an attack.

All while avoiding known triggers.

Linda_Howell wrote on Oct 25^th, 2010 at 11:59am:


Puppet SHOWS!!! Plural, I think there are over 30 now!

Joe

When dealing with an ego-filled doc it's useful to give him MEDICAL materials from sources he will recognize and, one hopes, accepts. Thowing a couple of pieces giving current therapies for CH which he may respect.
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See the PDF file 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]
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Print out....

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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Bob, that is a wealth of excellent info. . .thank you!! You were definitely reading my mind. I like the fact that my doctor is a bit arrogant, at least he's confident. . .but I don't want a guy who thinks he knows everything there is to know, and isn't open to ALL of the information out there!

Thanks Jerry! Not to take this off on a tangent, and I will spend some time reading the other thread on the subject, but out of curiosity. . .how much attention has been paid to testosterone? I ask only because, back before I knew what this affliction was, the only serious relief I had was when I was taking massive amounts of DHEA and tribulus while training for a serious athletic endeavor. The end result was higher testosterone levels, increased strength and endurance, etc. But I was also headache-free. What gives? Is there a correlation, or was that a placebo effect? Strange. I am not averse to going back to that regimen!

In this same section, Medications, treatments and therapies..look at the topic  "why don't we pay attention to this?"   a LONG thread that has been active since December of 2008. On the testosterone replacement therapy and the role low test. may play in CH. LOT's of reading but lots of good info too.

Joe

Linda_Howell wrote on Oct 25^th, 2010 at 4:32pm:


Don't let all our banter fool you, firefighters and police officers are brothers. It's all in good fun!

Wow. . .just from this one little thread, I've found another possible option to explore. If I had found this place six months ago, it could have saved me an awful lot of aggravation! Thanks, all!

You might also read the topic a few south of yours: "Time for the 75-80% to stand up and be counted," started by pinkfloyd.