Afriend of mine here in London UK, has told me about an operation for cluster sufferers called Deep Brain Stimulation. Has anyone got any info on this and availability and success rate? anything atall would be much appreciated!

This is unbelievable to me. Your doc won't prescribe O2, but your health care system has you thinking about having a doctor crack your noggin open.

I don't fault you for this. But when a system gets people to thinking about plunging an electrode deep into your gray matter before they think about something as simple and wholesome as breathing pure oxygen, well, then something is seriously wrong.

DBS was originally researched for Parkinson's patients, and they have had some really radical successes with it. There is another procedure called the Occipital Nerve Stimulator Implant, or ONSI. It is done subcutaneously on the scalp (this side of the skull). I would certainly look into that before I let anybody go digging around in my brain.

There is little literature on it for CH and unclear results being reported.

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Cephalalgia. 2008 Mar;28(3):285-95.
Hypothalamic deep brain stimulation for cluster headache: experience from a new multicase series.

Bartsch T, Pinsker MO, Rasche D, Kinfe T, Hertel F, Diener HC, Tronnier V, Mehdorn HM, Volkmann J, Deuschl G, Krauss JK.

Department of Neurology, University Hospital Schleswig-Holstein, Kiel, Germany. t.bartsch@neurologie.uni-kiel.de

Deep brain stimulation (DBS) of the posterior hypothalamus was found to be effective in the treatment of drug-resistant chronic cluster headache. We report the results of a multicentre case series of six patients with chronic cluster headache in whom a DBS in the posterior hypothalamus was performed. Electrodes were implanted stereotactically in the ipsilateral posterior hypothalamus according to published coordinates 2 mm lateral, 3 mm posterior and 5 mm inferior referenced to the mid-AC-PC line. Microelectrode recordings at the target revealed single unit activity with a mean discharge rate of 17 Hz (range 13-35 Hz, n = 4).
OUT OF SIX PATIENTS, FOUR SHOWED A PROFOUND DECREASE OF THEIR ATTACK FREQUENCY AND PAIN INTENSITY ON THE VISUAL ANALOGUE SCALE DURING THE FIRST 6 MONTHS. OF THESE, ONE PATIENT WAS ATTACK FREE FOR 6 MONTHS UNDER NEUROSTIMULATION BEFORE RETURNING TO THE BASELINE WHICH LED TO ABORTION OF THE DBS. TWO PATIENTS HAD EXPERIENCED ONLY A MARGINAL, NON-SIGNIFICANT DECREASE WITHIN THE FIRST WEEKS UNDER NEUROSTIMULATION BEFORE RETURNING TO THEIR FORMER ATTACK FREQUENCY. AFTER A MEAN FOLLOW-UP OF 17 MONTHS, THREE PATIENTS ARE ALMOST COMPLETELY ATTACK FREE, WHEREAS THREE PATIENTS CAN BE CONSIDERED AS TREATMENT FAILURES.
The stimulation was well tolerated and stimulation-related side-effects were not observed on long term. DBS of the posterior inferior hypothalamus is an effective therapeutic option in a subset of patients. Future controlled multicentre trials will need to confirm this open-label experience and should help to better define predictive factors for non-responders.

PMID: 18254897 [PubMed]
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Recent report re. Chronic Cluster:

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]

Jamsie,

Although they show promise, neither Deep Brain Stimulation (DBS) nor Occipital Nerve Stimulation (ONS) are ready for prime time.  The success rate in preventing and controlling cluster headaches for either of these two very invasive neurosurgery procedures is spotty at best between 10% and 20%. 

On top of that there's a very significant expense in out of pocket money over and above medical insurance, time, and lots of discomfort between cluster headaches that make the risk reward ratio for either of these two procedures unfavorable to all but the most determined cluster headache sufferers with the money and discipline to try them.

These aren't my words.  They come from Michael Berger, a.k.a. Wildhaus here on CH.com.  He chronicled his experiences with ONS in a lengthy thread you can read at the following link:

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Michael is a dear friend and colleague.  I've visited with him and his beautiful family in Wildhaus, Switzerland on many occasions both before the ONS surgery and after.  What I can tell you at this point is even two years after the ONS surgery, Michael and I would frequently meet at his oxygen therapy system in the middle of the night to abort our cluster headaches.

If you haven't tried oxygen therapy, see your PCP or neurologist and ask for a prescription.  If you've already tried oxygen therapy and didn't find it effective in aborting your cluster headaches in an average of 7 minutes or less, read the material in the "Oxygen Info" tab highlighted in yellow at the left.

If you've gone through these links and are still having problems aborting your cluster headaches with oxygen therapy, shoot me a PM.  I'll be happy to work with you. 

Oxygen therapy is the safest, most effective, and least expensive abortive available to cluster headache sufferers.

CH'ers who use oxygen therapy at flow rates that support hyperventilation and follow the procedures correctly, enjoy a 99% success rate with this method of oxygen therapy.

We've also found that even using high enough flow rates, the right equipment and proper procedures, there can still be occasions when abort times are longer than usual or so long it appears this method of oxygen therapy isn't working.  When that happens, there is likely a good reason or reasons. 

The following two links will take you to posts that discuss why this can happen and what you can do to improve the efficacy of oxygen therapy.

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Hope this helps.

Take care,

V/R, Batch

I'm with them, it's a high risk, low chance of benefit treatment at this time. I would certainly want to exhaust every other possible treatment, before considering any type of invasive brain surgery.

Batch is serious about his offer to help, if you struggle with the use of oxygen, Batch is your go to guy.

Joe

After posting this yesterday,I decided to push a bit harder with my doc to get O2 at home,I've been refused before as I'm a smoker! So today I attended my doc's appointment and after a blood test (new on lithium)I told her I now had a designated room in my house which is ventilated to the exterior,to be used only for my O2 therapy,and that   nobody smokes in the house anyway because I have a young daughter, if I or anyone else wants a cig they have to go outside. She told me to take it up with my neurologist as O2 is their dept,Itold her neurology had referred me back to her for O2, she says,no its their job. Funny thing (or tragic) is, they both agree O2 would be of great benefit to me. So here Iam again,at home in pain, on morphine etc.and probably going to have to call out an ambulance so I can get to hosp for some O2 releif.Aint life grand!! To sum up,today Ihave been let down by my doc and neurology and then get avisit from the beast and his brother called despair.

Deep brain stimulation AND Morphine before 02,  while all the time you sit there and suffer.

   Marvelous, just marvelous.  >:(

Like Brew, I'm not faulting you but you DO need to be a bit more proactive with these morons.

Linda_Howell wrote on Jan 28^th, 2011 at 4:30pm:

Deep brain stimulation AND Morphine before 02,  while all the time you sit there and suffer.    Marvelous, just marvelous.  >:( Like Brew, I'm not faulting you but you DO need to be a bit more proactive with these morons.

Echoing Linda's post.

If you had a broken leg would they have the disagreement about who should treat you?

Oxygen is simple, cheap and very effective which is a huge contrast to deep brain stimulation, so pushing that just doesn't make sense. Or is the neurologist also a neurosurgeon and they see that surgery is the way to fix things?

As to morphine, it's not likely to do too much to help with the pain plus it can lead to a whole host of problems with addiction.

I'd consider changing doctors to get some effective treatment.

Plus I'd look at going down the route of using welding oxygen so at least you get effective relief whilst they argue who should be writing the perscription.