Obviously, I'm new here. . .and I've been lurking and reading and learning. I'll try to keep this short, but this is my dilemma. I need to decide exactly how I'm going to attack this problem, and this decision is complicated:

I have battled a "cycle" for close to 6 months, and there seemed to be no end in sight. Average of 3-4 attacks per day, nothing touched it (until I got the right diagnosis). My new doc put me on a 9-day Prednisone taper, and they stopped immediately. That was four weeks ago. I've had a few shadows, but no full-blown attacks. I was popping some left-over indomethacin for the shadows, life was good. Three days ago, it started again. I've had three attacks in three days, two of them being very strong (8-ish).

Now, it's time to go back to my doctor and decide exactly how I'm going to handle this. He's confident and arrogant, which I kinda like in a doctor. He likes to "play with" intermittent cycles of Prednisone, calcium-channel blockers, and ergotamines, among others. I trust him, but I need to empower myself to get this right.

No offense to the CH community, but there are no fewer than about 40 different preventives and abortives suggested throughout boards like this one, and I am not about to randomly try them all. I would prefer not to be held hostage to strong prescription drugs, but there may be no alternative. I'd like to narrow down some of the alternative options and pick a course of action. Then, if that doesn't work, I'll let my doctor run with it. Here's where I'd like some experiential advice:

Oxygen as an abortive isn't really practical for me. I'm a firefighter, so I have total access to it. . .I'm just incredibly active and constantly on the go, so carrying a cylinder around isn't really practical.

I would look into the route suggested via "clusterbusters", but there is the little issue of work-related urine testing. (I know that's not a topic for this forum.)

Some people seem to be using kudzu with decent results, so it's on my short list.

Oddly enough, I was feeling good while I was taking massive doses of DHEA for other reasons, I'm wondering if there's a correllation?

I tried a butterbur/feverfew regimen back before I knew what this was, it seemed to help, then stopped helping. Might be worth considering again.

I'd like to rule out all of the fringe/quack treatments just to narrow it down. So, based on this information, what do you all think? Should I just let my doctor do his thing, or is it worth establishing my own regimen and trying to self-medicate? Thanks for listening to this rant. . .I'm really just trying to empower myself and make an informed decision (as I think most of us are!)

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! :P

Joe

Thanks for the info, G! That's the kind of thing I need to take to my doctor so I can speak intelligently about what works and what doesn't. I don't want to be totally at his mercy!

And funny you should mention the Jake and Perry videos, those are HILARIOUS! Kinda seems like Perry is always on the short end of the stick, though. . .so I probably find them funnier than you do. But it's ok, you know what we always say: If you can't take the heat, become a police officer!    ;D

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.

LMAO at you two.  and here I thought smack-talk was only for sports entusiasts and pool players. 

Going to U-tube now to see the puppet show.

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

LMAO at you two.  and here I thought smack-talk was only for sports entusiasts and pool players.  Going to U-tube now to see the puppet show.

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

Joe

Yeah...So I found out Joe.  LOL   I watched about 6 of them.  Hilarious.

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: 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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Print out....

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

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
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Linda_Howell wrote on Oct 25^th, 2010 at 1:45pm:

Yeah...So I found out Joe.  LOL   I watched about 6 of them.  Hilarious.

But Linda, have you noticed a general theme in them?   :)

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!

You are going about this in the right way.  Someone has as a tagline that if you wait for your Dr to make you ok you are in for a world of hurt.  (my paraphrase)

There are a number of options out there, and you MAY have to try them all.  Some of us have been through a number of different regimens before (if) we found we found something that worked. 

I'm one who tried quite a few different prevents with poor results.  The one that worked for me for a while was Verapamil 780 mg and Lithium, 480 mg I think.  However, I didn't have as good results as do some and had to drop it after a while because the side effects were to much.  They killed the HA's, but life wasn't worth it.  I'm one who switched to Kudzu, and I've done as well or better with it than with Verap and Lith AND without the side effects.  I get a little gas once in a while, but if I work it right I can blame it on someone else. :D  One other thing I added to the mix a couple of years ago that also made a big difference was Testosterone.  See the rather extensive thread "Why don't we pay atttention to this" in the Meds and Therapies section.

Joe mentioned Red Bull.  It works for me also, but I've started using 5hr Energy instead because I don't have to drink as much and it doesn't tear up my stomach as badly.  It is also easier to carry one of those in your pocket if you think you will need one.  Oxygen is still my abortive of choice.  I can't always have it right with me, but I try to have it where I can get to it most of the time.  I use the 5hr Energy for the times I can't use O2.

Jerry

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!

Quote:

But Linda, have you noticed a general theme in them?

Sure have, but 2 of my good friends here are retired cops and my oldest son is one, sooooooooo.  ;D
Actually I have nothing but the utmost respect for both professions.   

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

I think there may be a big corelation to this.  You will find Paul has been PF for months now, and Dennis has had quite good success also.  Mine has been moderate, but combined with the Kudzu I'm doing pretty well.

Jerry

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

Sure have, but 2 of my good friends here are retired cops and my oldest son is one, sooooooooo.  ;D Actually I have nothing but the utmost respect for both professions.

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!

If you don't find the relief you're seeking here, do look into START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE. Good luck. Glad you found the board.

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.