I feel for you Andrew, I started out just like you, well behaved cycles, easily handled by the drugs I had dialed in.
Since then I have it change in many ways. The marathon cycles... my last year... 5 months high cycle, followed by a three week break and right back on it. So it is not unusual, just means it is time to mix it up. A new doc is always the best way to do that... but find a "headache specialist", and one who specializes in CH as well as migraines.
As for the O2, it just may be you need better flow. If you don't have it, order the O2ptimask from this site, and make sure to get a regulator that puts out 25lpm.
Be sure to check the sister site Clusterbusters.com for non traditional treatments, if you are comfortable with that kind of thing, I highly recommend it.

Thanks very much.  It's at least a bit of comfort for me to know that others have had cycles change in frequency/duration much like what I'm experiencing now.   It used to be some light at the end of the tunnel that I could cling to, much like each individual HA, I would know at least an approximate timing for the end. But now, I have no clue when the end is... maybe tomorrow, maybe next month, maybe next year... 

I've seen you refer to the demand valve for o2 in the past.  I do currently use the optimask, but have been thinking about getting a demand valve system.  I know it can cost quite a bit more, but if it helps more... I'm all for it.   I'd cut off a finger if someone told me it would stop my headaches... so what's a few bucks.   Given the higher flow rate, yet "conserving" nature of the apparatus - I'm wondering if you've noticed that an o2 tank lasts longer for you, or goes quicker.   At 12-15 lpm, when riding a higher hit rate, I burn through an H-tank in about 2 weeks.   An H-tank at that rate is about 8 hrs worth.  Do you think the key to the demand valve is the much higher flow rate?

I did start trying Batch's regimen, can't say that I noticed any improvement from it.  But I think I need to give it another try, perhaps with ramping up the dosages a bit.   I've also just started to give melatonin another try.  Gave it a shot a few years ago and it seemed to actually bring on more wake-up hits.    I guess I'll keep trying anything/everything, including a different Dr.  If anyone has any opinion on the three Dr's I mentioned, the input would be appreciated.   

thanks again.

Andrew

If you are moving into a chronic pattern it's surely time to get with a headache specialist and review your treatment program with fresh eyes.
====
J Headache Pain. 2005 Feb;6(1):3-9. Epub 2005 Jan 25.

Chronic cluster headache: a review.

Favier I, Haan J, Ferrari MD.


Department of Neurology, K5-Q Leiden University Medical Centre, 9600, 2300 RC Leiden, The Netherlands.

Cluster headache (CH) is a rare but severe headache disorder characterised by repeated unilateral head pain attacks accompanied by ipsilateral autonomic features. In episodic CH, there are periods of headache attacks with pain-free intervals of weeks, months or years in between. A minority of patients have the chronic form, without pain-free intervals between the headache attacks. Chronic CH can occur as primary or secondary chronic CH; the rarest form is episodic CH arising from chronic CH. In this article, we give a review of the chronic forms of CH and focus on demographics, clinical manifestations, social habits, predictive factors, head injury, genetics, neuroimaging and therapy. IT IS REMARKABLE THAT LITTLE IS KNOWN ABOUT RISK FACTORS THAT MAKE CH CHRONIC.

Publication Types:
Review

PMID: 16362185 [PubMed] 
=====
Curr Treat Options Neurol. 2010 Nov 24.

Management of Chronic Cluster Headache.
Leone M, Franzini A, Proietti Cecchini A, Mea E, Broggi G, Bussone G.

Pain Neuromodulation Unit, Department of Neurology, Headache Center, Carlo Besta Neurological Institute Foundation, Via Celoria 11, 20133, Milano, Italy, leone@istituto-besta.it.

Abstract
OPINION STATEMENT: Primary cluster headache (CH) is an excruciatingly severe pain condition. Several pharmacologic agents are available to treat chronic CH, but few double-blind, randomized clinical trials have been conducted on these agents in recent years, and the quality of the evidence supporting their use is often low, particularly for preventive agents. We recommend sumatriptan or oxygen to abort ongoing headaches; the evidence available to support their use is good (Class I). Ergotamine also appears to be an effective abortive agent, on the basis of experience rather than trials. We consider verapamil and lithium to be first-line preventives for chronic CH, although the trial evidence is at best Class II. Steroids are clearly the most effective and quick-acting preventive agents for chronic CH, but long-term steroid use carries a risk of several severe adverse effects. We therefore recommend steroids only if verapamil, lithium, and other preventive agents are ineffective. In rare cases, patients experience multiple daily cluster headaches for years and are also refractory to all medications. These patients almost always develop severe adverse effects from chronic steroid use. Such patients should be considered for neurostimulation. Occipital nerve stimulation is the newest and least invasive neurostimulation technique and should be tried first; the evidence supporting its use is encouraging. Hypothalamic stimulation is more invasive and can be performed only in specialist neurosurgical centers. Published experience suggests that about 60% of patients with chronic CH obtain long-term benefit with hypothalamic stimulation.

PMID: 21107766 [PubMed]
===
Title:  Double Blind Comparison of Lithium and Verapamil in Cluster Headache Prophylaxis 
Author: Bussone G, Leone M, et al.
Date:  Posted: January 2010
Source:  Headache  30:411-417, 1990
Chronic Cluster Headache (CCH) treatment is troublesome; since there are no pain-free periods, it must be continuous. The most effective CCH prophylactic drug today is lithium carbonate but long-term use of this drug is limited by the possibility of side effects. Recently, calcium antagonists have been successfully employed to prevent migraine, and preliminary studies also indicate that verapamil in particular is an efficacious treatment for CCH. We have conducted a multicenter trial employing a double-dummy, double blind, cross-over protocol, comparing verapamil with the established efficacy of lithium carbonate, in preventing CCH attacks. BOTH LITHIUM CARBONATE AND VERAPAMIL WERE EFFECTIVE IN PREVENTING CCH BUT VERAPAMIL CAUSED FEWER SIDE EFFECTS and had a shorter latency period. We did not observe any correlation between plasma levels of the two drugs and their clinical efficacy. Both the drugs tested here may exert their effect by restoring a normal inhibitory tone to the pain modulating pathways from the trigemino-vascular system, a circuit putatively implicated in CCH.

amct15,
The only flow rate I read you referenced was 12-15 lpm, is this correct?  If so, you will find faster aborts with higher flow rates. 

To hyperventilate, one needs at least 25 lpm.  I use 40 lpm sometimes.  Then to avoid a re-attack, stay on the o2 AFTER the abort for an addtl 5 or 10 minutes breathing normally at lower flow rates such as 15 lpm or 10 lpm.

Search the board archives on Dr. Newman.  I recall seeing posts by NY'ers discussing his office and believe it was favorable.

Good Luck!

Gregg in Las Vegas

Thank you for the additional input.  Yes, I've predominantly been utilizing a flow at 12-15 lpm.  My current regulator only goes up to 15 lpm - although it does seem to dial past it a bit.  I think I will be doing some "shopping" for a demand valve system.  Just got a price today from Linde/Lifegas - $150 for the regulator and $500 for the valve.  You mentioned the energy drink, I've not yet given any of those a try.  My concern is the caffeine actually keeping me awake and throwing off my sleep pattern.    I have to keep a pretty regular sleep schedule or the beast really gets angry.   As for the "green monster"... I fondly refer to my tank as the ballistic missile...

Lance,
You are very supportive of others despite suffering so much.  I have much respect for you, Hang tough!
-Gregg in Las Vegas