Hello, I suffer with daily chronic clusters and it has been 7 years now, I don't see my neurologist very much anymore because he feels he can not do anything further, so my PCP manages my meds and keeps an eye on me. 
I have not seen anything new on treatments of chronic phase clusters for some time, has anyone heard of new treatments out there over the past year or so? currently all I do is nutrition, supplements, Varapamil, and valium for the worst of the worst, much better to be sedated than the alternative.

Thank you

Under the medss ection, read the thread, "123 pain free days and I think I know why."

A vitamin/mineral/anti inflammatory regimen that's been helping many.


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Read this, if you're not already using oxygen, you're missing out on one of the cheapest, most natural, most efficient methods of aborting CH attacks.

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Our sister site, deals in non traditional methods of dealing with CH, some amazing success stories coming outta that board.

Joe

Edited to fix my clusterbusters gaff! :D

Here's the link to the sister site:

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Quote:

valium for the worst of the worst, much better to be sedated than the alternative.

I'm not at all sure how sedated can help.  When I am in the throes of agony I need all my wits about me and being sedated to the point where I can't do what I need to do to abort,  would seem counter-productive to me.  Have you tried pure oxygen?   The link with all you need to know in attaining it and using is in yellow to the left of here.  Sometimes when I run out of one tank and need to switch regulator and mask to a fresh tank,  takes some thought when I'm in pain.  Anything that slows me down in that, is a big No-No.

Surgical treatments are what I'm seeing in the literature.
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Ther Adv Neurol Disord. 2010 May;3(3):187-195.

Hypothalamic deep brain stimulation in the treatment of chronic cluster headache.
Leone M, Franzini A, Cecchini AP, Broggi G, Bussone G.

Headache Centre, Neuromodulation and Neurological Department, Fondazione Istituto Neurologico Carlo Besta, via Celoria 11, 20133 Milano, Italy.

Abstract
Cluster headache (CH) is a short-lasting unilateral headache associated with ipsilateral craniofacial autonomic manifestations. A POSITRON EMISSION TOMOGRAPHY (PET) STUDY HAS SHOWN THAT THE POSTERIOR HYPOTHALAMUS IS ACTIVATED DURING CH ATTACKS, SUGGESTING THAT HYPOTHALAMIC HYPERACTIVITY PLAYS A KEY ROLE IN CH PATHOPHYSIOLOGY. ON THIS BASIS, STIMULATION OF THE IPSILATERAL POSTERIOR HYPOTHALAMUS WAS HYPOTHESIZED TO COUNTERACT SUCH HYPERACTIVITY TO PREVENT INTRACTABLE CH. TEN YEARS AFTER ITS INTRODUCTION, HYPOTHALAMIC STIMULATION HAS BEEN PROVED TO SUCCESSFULLY PREVENT ATTACKS IN MORE THAN 60% OF 58 HYPOTHALAMIC IMPLANTED DRUG-RESISTANT CHRONIC CH PATIENTS. The implantation procedure has generally been proved to be safe, although it carries a small risk of brain haemorrhage. Long-term stimulation is safe, and nonsymptomatic impairment of orthostatic adaptation is the only noteworthy change. Microrecording studies will make it possible to better identify the target site. Neuroimaging investigations have shown that hypothalamic stimulation activates ipsilateral trigeminal complex, but with no immediate perceived sensation within the trigeminal distribution. Other studies on the pain threshold in chronically stimulated patients showed increased threshold for cold pain in the distribution of the first trigeminal branch ipsilateral to stimulation. These studies suggest that activation of the hypothalamus and of the trigeminal system are both necessary, but not sufficient to generate CH attacks. IN ADDITION TO THE HYPOTHALAMUS, OTHER UNKNOWN BRAIN AREAS ARE LIKELY TO PLAY A ROLE IN THE PATHOPHYSIOLOGY OF THIS ILLNESS. HYPOTHALAMUS IMPLANTATION IS ASSOCIATED WITH A SMALL RISK OF INTRACEREBRAL HAEMORRHAGE AND MUST BE PERFORMED BY AN EXPERT NEUROSURGICAL TEAM, IN SELECTED PATIENTS.

PMID: 21179610 [PubMed]
==============
Headache. 2008 Sep 9. [Epub ahead of print]
Sphenopalatine Ganglion Radiofrequency Ablation for the Management of Chronic Cluster Headache.

Narouze S, Kapural L, Casanova J, Mekhail N.

Cleveland Clinic Foundation-Pain Management Department, Cleveland, OH, USA.

Objectives.- Chronic cluster headache patients are often resistant to pharmacological management. Percutaneous radiofrequency ablation (RFA) of the sphenopalatine ganglion (SPG) was shown before to improve episodic cluster headache but not chronic cluster headache. We were interested to examine the effect of such intervention in patients with intractable chronic cluster headache who failed pharmacological management. Methods.- Fifteen patients with chronic cluster headache, who experienced temporary pain relief following SPG block, underwent percutaneous RFA via the infrazygomatic approach under fluoroscopic guidance. Collected data include demographic variables, onset and duration of the headache, mean attack intensity (MAI), mean attack frequency (MAF), and pain disability index (PDI) before and up to 18 months after procedure. Results.- At 1-, 3-, 6-, 12-, 18-month follow-up, the MAI was 2.6, 3.2, 3.2, 3.4, 4.2, respectively (P < .0001, P < .0001, P < .0001, P < .0005, P < .003, respectively). The PDI improved from 55 (baseline) to 17.2 and 25.6 at 6 and 12 months respectively (P < .001). The MAF improved from 17 attacks/week to 5.4, 6.4, 7.8, 8.6, 8.3 at 1-, 3-, 6-, 12-, 18-month follow-up visits (P < .0001, P < .0001, P < .0001, P < .002, P < .004, respectively). Conclusion.- OUR DATA SHOWED THAT PERCUTANEOUS RFA OF THE SPG IS AN EFFECTIVE MODALITY OF TREATMENT FOR PATIENTS WITH INTRACTABLE CHRONIC CLUSTER HEADACHES. PRECISE NEEDLE PLACEMENT WITH THE USE OF REAL-TIME FLUOROSCOPY AND ELECTRICAL STIMULATION PRIOR TO ATTEMPTING RADIOFREQUENCY LESIONING MAY REDUCE THE INCIDENCE OF ADVERSE EVENTS.

PMID: 18783451 [PubMed]-
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Curr Treat Options Neurol. 2011 Feb;13(1):56-70.
MANAGEMENT OF CHRONIC CLUSTER HEADACHE.
Leone M, Franzini A, Proietti Cecchini A, Mea E, Broggi G, Bussone G.
SourcePain 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]
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Prog Neurol Surg. 2011;24:126-32. Epub 2011 Mar 21.
Peripheral nerve stimulation in chronic cluster headache.
Magis D, Schoenen J.
SourceHeadache Research Unit, University Department of Neurology, CHR Citadelle, Liège, Belgium.

Abstract
Cluster headache is well known as one of the most painful primary neurovascular headache. Since 1% of chronic cluster headache patients become refractory to all existing pharmacological treatments, various invasive and sometimes mutilating procedures have been tempted in the last decades. Recently, neurostimulation methods have raised new hope for drug-resistant chronic cluster headache patients. The main focus of this chapter is on stimulation of the great occipital nerve, which has been the best evaluated peripheral nerve stimulation technique in drug-resistant chronic cluster headache, providing the most convincing results so far. Other peripheral nerve stimulation approaches used for this indication are also reviewed in detail. Although available studies are limited to a relatively small number of patients and placebo-controlled trials are lacking, existent clinical data suggest that occipital nerve stimulation should nonetheless be recommended for intractable chronic cluster headache patients before more invasive deep brain stimulation surgery. More studies are needed to evaluate the usefulness of supraorbital nerve stimulation and of vagus nerve stimulation in management of cluster headaches.

Copyright © 2011 S. Karger AG, Basel.

PMID:21422783[PubMed]

What they said. The high LPM 100% O2 mentioned is much more effective for many of us than the outdated low flow rebreather O2 still widely prescribed BTW.

I've seen a number of chronic CH'ers report going into remission via the clusterbusters route, and some with the newer, and very specific Vit D3 anti inflammatory regimen, so PLEASE take those seriously.

thank you all for these suggestions, I unfortunatly am one of those that no longer responds to  O2, it worked when I had episodic episodes, but the minute I became chronic nothing seemed to work, for years, Varapamil kept the pain levels at a low pain level with the occational pain level of 10. now that all seems to have stopped working, I have 5 tanks of O2 and it never works anymore. It has been suggested by my neurologist Dr. judy Lane here in Denver that she feels that severing the trigeminal nerve would provide the best results but will also make the right side of my face look like I have had a stroke for the rest of my life.
She is one of the best, but Clusters are not at the top of her list.
most of the treatments that have been mentioned have not worked, and the invasive ones I have not been able to get done, not that I would want to. I have been like this for 7 years and now they seem to be getting even more frequent and more severe if that is possible. today I had one that started at 11am and ended at about 8pm. one of the longest I have ever had. 
As for sedation, it does help, otherwise I am so adgitated that all I can do is scream, cry, and bang my head.  In fact I bang my head so much and so hard that I have a permenent sore on the spot I mostly bang. 
I do take nutrients, especially D3 and a bunch of others even vasodiolaters that should help a little, but so far nothing significant.
thank you all very much

I do understand as I am both chronic and for awhile at least the CHs were intractable. What turned the corner for me was dosage levels. You do not mention the dose levels you have taken for specific meds like verapamil (I'm at 640mg/day) or lithium. Nor am I clear about the O2 flow levels and techniques you have used. I used a regular nonrebreather at 15lpm and found some relief but kicking it up with a t-fitting or my demand flow valve was the key. Also, before any nerves are cut, I'd go the buster route. What have you got to lose by trying and it has been effective for so many. Good luck with this, and know you are in my prayers. Blessings. lance

What Lance said...give us a run down of the dosing on the verapamil......some go as high as 960 mg a day to get relief.....some have had to combine the high does verapamil AND lithium to get relief.......Oxygen...many have found at 15 LPM it stopped working, at 25 LPM or higher it worked again. And yes, visit the cluster buster site before letting them cut the trigeminal...that's awfully permanent. Wishing you some pain free time soon.

Joe

I suggest you try the other methods available (such as higher dose verapamil, different O2 delivery methods, even clusterbusters if you are comfortable with that) before the trigeminal surgery.

I’ve been chronic since I first got clusters 20 years ago.  Back about 15 years ago I had two radiofrequency rhizotomies of branches 1 and 2 of my trigeminal nerve on the affected side.  The first one gave me 4 completely pain free months (bliss), but, as you said I have no feeling on that side of my face.  For me there is no disfigurement, though, although the surgeon mentioned that that was possible.  By 6 months after the first surgery the headaches were back, not quite to their original intensity, but about 85-90% of their original intensity (still far from being anything I can sit still and tough it out through).

Soooo, they did another RF rhizotomy, from which I got zero relief (I still have absolutely no idea how that side of my face is numb but I still get the headaches, but I do.  But if anyone has a theory I’d love to hear it).  Down the road I found another neurologist and now we’ve got them under control all but maybe a month a year, which is tolerable.  I’m still on meds all year long, the headaches just decide to break through every late spring.

Having had the experience I have had with the trigeminal surgeries, if I were in your shoes I’d even research the hypothalamus stimulator surgery Dr. Goadsby in England is doing before I’d make up my mind on going through with the trigeminal surgery.  Like I said research it – I haven’t done that so I’m not suggesting the hypothalamus stimulator is the way to go, just consider looking into it.  My 2 cents worth.

My nuero put me on Carbamazapine which was 100% effective for me (at doses between 400 - 800mg daily) for 9 years.