Oxygen provided abortive value early on in my CH life.  Unfortunately after long-term use Oxygen began aborting attacks only to have them return within minutes at increased severity/duration with each application.

Zomig, Imitrex, Caffergot, etc. all came up bust (no value or bad side effects).  I ride attacks out and have stopped abortive therapies.

My base consists of 1200mg Lithium Carbonate, 720mg Verapamil and 12mg Melatonin daily.  This mix reduces the number of attacks and their severity.  Missing a dose or being two hour or more late with a dose will remind me how useful these are in controlling attacks even though it fails to stop them.  It’s not safest or greatest but I’m not currently experiencing bad side effects and am kind of stuck here.
   
Over the years Prednisone, Depakote, and a host of others sometimes showed promise only to have CH morph its way around any effectiveness they appeared to have.  My frustrated Neurologist has on several occasions recommended medically induced coma with intravenous D.H.E. but we've always shelved this because of previous severe side effects with ergotamine.
   
My Neurologist and I are attempting to figure out where to go from here.  Every new option we discuss comes with potentially nastier and nastier side effects.  Sparing everyone more detail of a decade and a half of research/treatments, I have a basic question.
   
Has anyone experiencing long cycles, Chronic and/or Semi-Chronic CH ever found anything that consistently works without the threat of mental/physical disaster?  (Sorry, but the mushrooms won’t be a big hit in my work life).

burnt-toast
(Tom)             

There is nothing new on the pike to us but, I'm with Joni, in suggesting you try Zyprexa. A number of us have had excellent results and, with the low doses/frequency we need, the side effect profile is not an issue.
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Headache 2001 Sep;41(8):813-6 

Olanzapine as an Abortive Agent for Cluster Headache.

Rozen TD.

Department of Neurology, Jefferson Headache Center/Thomas Jefferson University Hospital, Philadelphia, Pa.

OBJECTIVE: To evaluate olanzapine as a cluster headache abortive agent in an open-label trial. BACKGROUND: Cluster headache is the most painful headache syndrome known. There are very few recognized abortive therapies for cluster headache and fewer for patients who have contraindications to vasoconstrictive drugs. METHODS: Olanzapine was given as an abortive agent to five patients with cluster headache in an open-label trial. THE INITIAL OLANZAPINE DOSE WAS 5 MG, AND THE DOSE WAS INCREASED TO 10 MG IF THERE WAS NO PAIN RELIEF. THE DOSAGE WAS DECREASED TO 2.5 MG IF THE 5-MG DOSE WAS EFFECTIVE BUT CAUSED ADVERSE EFFECTS. To be included in the study, each patient had to treat at least two attacks with either an effective dose or the highest tolerated dose. RESULTS: Five patients completed the investigation (four men, one woman; four with chronic cluster, one with episodic cluster). Olanzapine reduced cluster pain by at least 80% in four of five patients, and TWO PATIENTS BECAME HEADACHE-FREE AFTER TAKING THE DRUG. Olanzapine typically alleviated pain within 20 minutes after oral dosing and treatment response was consistent across multiple treated attacks. The only adverse event was sleepiness. CONCLUSIONS: Olanzapine appears to be a good abortive agent for cluster headache. IT ALLEVIATES PAIN QUICKLY AND HAS A CONSISTENT RESPONSE ACROSS MULTIPLE TREATED ATTACKS. IT APPEARS TO WORK IN BOTH EPISODIC AND CHRONIC CLUSTER HEADACHE.

PMID 11576207 PubMed

--------------------------------------------------------------------------------


Olanzapine has a brand name of "Zyprexa" and is a antipsychotic. Don't be put off by this primary usage. Several of the drugs used to treat CH are cross over applications, that is, drugs approved by the FDA for one purpose which are found to be effective with unrelated conditions--BJ.
==============

There is nothing special in this report, largely confirms what we talk about here, but your doc might like to get a copy for his benefit/ relief??.....

"Evidence Base for the Medical Treatments Used in Cluster Headache." Alok Tyagi, M.D, et al. In: Current Pain and Headache Reports 2009, 13:168-178. Pub: Current Medicine Group ISSN 1531-3433
----

(I can send a PDF file of this article if you will send your e-mail address to me.)

Thanks Joni and Bob,

I’ll look into Zyprexa (Olanzapine) , it’s an option I haven’t heard of.  Not sure if my Neurologist is familiar with it but we’ll find out.
 
Is anyone familiar with Neurontin (Gabapentin)?   I have a number of reservations about this drug but would welcome input from anyone with first-hand experience with it.

Dennis,

Appreciate the curiosity.  You got me digging through years of notes but my Neurologist prescribed 10lpm/nonrebreather we never altered this flow rate.  I’m not certain what you mean by methods tried.

To clarify, the reason Oxygen therapy was discontinued wasn’t that Oxygen failed to abort attacks.  Its use began to increase the number of follow up attacks.

Good results were achieved for approx. 10 months.  At the start of Oxygen therapy attacks were 3 to 4 per night and Oxygen typically aborted them in 5 to 30 minutes.  After an initial 10 months attacks escalated to 6 and 7 per night over the next few weeks.  We discontinued Oxygen and I returned the 3 to 4 range within a week.  I haven’t considered Oxygen since.

To be fair to Oxygen, I have since had simular experiences with other abortives.  Maybe it just me but when I find something that works CH seems to find ways around it.

burnt-toast
(Tom)            

The previous reference was to this treatment....

Headache. 2006 Jun;46(6):925-33. 


Testosterone replacement therapy for treatment refractory cluster headache.

Stillman MJ.

Objectives.-To describe the clinical characteristics and laboratory findings of cluster headache patients whose headaches responded to testosterone replacement therapy. Background.-Current evidence points to hypothalamic dysfunction, with increased metabolic hyperactivity in the region of the suprachiasmatic nucleus, as being important in the genesis of cluster headaches. This is clinically borne out in the circadian and diurnal behavior of these headaches. For years it has been recognized that male cluster headache patients appear overmasculinized. Recent neuroendocrine and sleep studies now point to an association between gonadotropin and corticotropin levels and hypothalamically entrained pineal secretion of melatonin. Results.-Seven male and 2 female patients, seen between July 2004 and February 2005, and between the ages of 32 and 56, are reported with histories of treatment resistant cluster headaches accompanied by borderline low or low serum testosterone levels. The patients failed to respond to individually tailored medical regimens, including melatonin doses of 12 mg a day or higher, high flow oxygen, maximally tolerated verapamil, antiepileptic agents, and parenteral serotonin agonists. Seven of the 9 patients met 2004 International Classification for the Diagnosis of Headache criteria for chronic cluster headaches; the other 2 patients had episodic cluster headaches of several months duration. After neurological and physical examination all patients had laboratory investigations including fasting lipid panel, PSA (where indicated), LH, FSH, and testosterone levels (both free and total). All 9 patients demonstrated either abnormally low or low, normal testosterone levels. After supplementation with either pure testosterone in 5 of 7 male patients or combination testosterone/estrogen therapy in both female patients, the patients achieved cluster headache freedom for the first 24 hours. Four male chronic cluster patients, all with abnormally low testosterone levels, achieved remission. Conclusions.-Abnormal testosterone levels in patients with episodic or chronic cluster headaches refractory to maximal medical management may predict a therapeutic response to testosterone replacement therapy. In the described cases, diurnal variation of attacks, a seasonal cluster pattern, and previous, transient responsiveness to melatonin therapy pointed to the hypothalamus as the site of neurological dysfunction. Prospective studies pairing hormone levels and polysomnographic data are needed.

PMID: 16732838 

Try RC seeds if feel that you must avoid mushrooms at all costs.

You should definitely try amitriptyline. I had clusters for years and had a crazy episode in 2005 that lasted for a year. 50 mg per day of amitriptyline every day for 4 months and I was cured - I never had another.

I hope you feel better soon, I know how terrible it can be.

If you are asking about Amitriptaline, I take 10mg every night all the time.  When I first started it, I went 3 years without a headache but I don't know if that is why although that was unusual for me.  I was also using Nasonex every day all the time, too, which is a steroid.  Anyway, it only lasted 3 years and coincidentally the only thing I stopped was the Nasonex....I probably should have increased the Amitriptaline but I don't like the side effects of constipation and tiredness, so I haven't.  My doctor wanted me to take 40mg.  I may try it someday.  For me, it is such a balancing act between relief, side effects, and not being able to stop a med due to the return of HA's.  I am constantly a detective!

Jerry,

Thanks for the reply,

Not searching for the Hope Diamond - just looking for anything I've managed to overlook or something recent that I haven't looked into yet.

I've got a couple new directions to look into and with Oxygen an old one - I'll be sure to keep everyone up to date with any progress.


burnt-toast
(Tom)

Thanks Mike,

I’m happy to hear that you are getting some benefit from Prednisone.

Essentially I had a running script for two week-520mg tapers, always one on hand and one in the queue.  When flair-ups occurred (recognizable increases in frequency & severity) I would start a taper.  Typically a taper was necessary two to three times per year.  It worked reasonable well for a few years and held attacks to levels I could cope with.

When the effectiveness of this schedule began to decrease, we (my Neuro. and I) found that tapering the same 520mg over three weeks was effective.  I did this for about another year or so but after that Prednisone became very ineffective.

Attempts to adjust dosages/length of tapers failed to produce recognizable value so the use of this drug was discontinued.
 
It doesn’t sound like an issue in your case but a word of caution, there are potential serious side effects from long-term Prednisone use.  It’s a commonly prescribed drug and helps folks with a variety of disorders but typically as a short-term treatment.  Long-term use is usually reserved for treating serious and/or life threatening illnesses.  Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or provides some good information on this prescription drug if you find it being prescribed with increasing frequency.

burnt-toast
(Tom)