just returned home from vancouver after seeing a neurologist who likes the idea of me trying the occipital nerve stimulation, the first part is a test which lasts a week and involves inserting a wire and small pacemaker under my skin. the wire is connected to the occipital nerve (if i got that right) and when i get a cluster i am to activate the stimulator. if there is pronounced reduction in pain then the next step would be to have the full surgery and install the whole shebang, my thoughts after talking with him was that this is a fairly new procedure, and that results can be 50/50, i need to be mid cluster season to do the testing, and go from there. are there any thoughts on this procedure and has anyone tried it with good/poor results and if you had good results and have the pacemaker installed how does it affect daily life if at all
thanks
chris

Overall, this approach is best left as a last chance, after the usual medical approaches have failed--my judgment.

Medical literature is mixed, overall still cautious  (degree varies with the technique involved).
=== This is interesting article--if it's onthe specific approach is is considering.

Lancet Neurol. 2006 Oct;5(10):873-877.
Deep brain stimulation in headache.

Leone M.

Department of Neurology and Headache Centre, Istituto Nazionale Neurologico 'Carlo Besta', via Celoria 11, 20133 Milano, Italy.

BACKGROUND: The therapeutic use of deep brain stimulation to relieve intractable pain began in the 1950s. In some patients, stimulation of the periaqueductal grey matter induced headache with migrainous features, indicating a pathophysiological link between neuromodulation of certain brain structures and headache. RECENT DEVELOPMENTS: Neuroimaging studies have revealed specific activation patterns in various primary headaches. In the trigeminal autonomic cephalgias, neuroimaging findings support the hypothesis that activation of posterior hypothalamic neurons have a pivotal role in the pathophysiology and prompted the idea that hypothalamic stimulation might inhibit this activation to improve or eliminate the pain in intractable chronic cluster headache and other trigeminal autonomic cephalgias. Over the past 6 years, hypothalamic implants have been used in various centres in patients with intractable chronic cluster headache. The results are encouraging: most patients achieved stable and notable pain reduction and many became pain free. All deep-brain-electrode implantation procedures carry a small risk of mortality due to intracerebral haemorrhage. Before implantation, all patients must undergo complete preoperative neuroimaging to exclude disorders associated with increased haemorrhagic risk. No substantial changes in hypothalamus-controlled functions have been reported during hypothalamic stimulation. Hypothalamic stimulation may also be beneficial in patients with SUNCT (short-lasting, unilateral, neuralgiform headache attacks with conjunctival injection and tearing)-a disorder with close clinical and neuroimaging similarities to the cluster headache. WHERE NEXT?: Neuroimaging findings in patients undergoing posterior hypothalamic stimulation have shown activation of the trigeminal nucleus and ganglion. This evidence supports the hypothesis that hypothalamic stimulation exerts its effect by modulating the activity of the trigeminal nucleus caudalis, which in turn might control the brainstem trigeminofacial reflex-thought to cause cluster headache pain. Future studies might determine whether other areas of the pain matrix are suitable targets for neuromodulation in patients with cluster headache who do not respond to hypothalamic modulation.

PMID: 16987734 [PubMed

I had a 'bi-lateral Occipital Nerve Stimulator" trial in March 2004 at MHNI under Dr. Todd Rozen, Dr. Saper, & Dr. Rogers (surgeon). My instructions sounded the same as yours. The stim did NOTHING to help me to reduce the frequency or intensity of attacks. After having the trial implant removed (a week later), a kept trying different options and therapies, meds, etc.
Years later I am told that the trial implant was useless because the stimulator "Has to be" implanted for 3 - 6 months to see if any benefit can be gained from it.
Now that I had done that 'surgery', I am no longer able to participate in future studies, trials, surgeries, etc... all because I tried that stim.

Good Luck. I doubt it will help anything but I hope it does help you if you do it !
Best Wishes

I4B

DEEP BRAIN STIMULATION
Edited to add: Just FYI ...The DBS surgery for CH, as far as neurosurgeons at the Cleveland Clinic are concerned, would certainly be life threatening, MOST LIKELY (90%+) cause paralysis, and MOST LIKELY WILL NOT HELP AT ALL. I went there to DO IT and was talked out of it by the surgeon and a team of doctors with him that had NO OPTIMISTIC VIEW about DBS and cluster headache. They said to return "...Right before suicide" as this surgery might produce the same result, although they
Quote:

"...Had not killed anyone YET."

Imitrex 4 Breakfast

34 years chronic intractable CH, 70, yes you read it right, 70 drug trials. ONS candidate, Electronics engineer.

I did 3 hard years research on this device and it's "outcomes" in CH. I've spoken to many specialists in many disciplines and CHers about it. Written many, many hundreds of pages of my opinion. Don't get me started on ONS.

In summary:
It's a "crap shoot", as is said on here often...
Manufacturers say it works with little proof.
The clinical trials are badly conducted and data selectively collated for specific outcomes.
Efficacy is overstated.
(Even a non-responder in clinical trials was reported to have achieved 50% relief, without participating in the survey - neat trick...)
Surgeons stand to make a buck out of putting it in.
The complications, like lead migration and infection are understated.
The Battery life in this application is grossly understated.
Follow-up in recipients is short and in small numbers.
It is not yet correctly engineered for it's end-use application in CH.
It has no better reported efficacy than the allowable margin for placebo response, but all the risks of invasive surgery. (Ask your surgeon just exactly what he has to do for lead placement in and around the nerves in the Cervical spine)
Some trial participants reported immediate CH relief, only to have their stimulators turned on WEEKS after implant surgery...

IMO, the books are cooked on effective outcomes.
I used to manufacture class 3 electronics (like this device), we cooked the books for certain outcomes all the time...
It's "Black Magic" said a leading CH specialist.

Not for me.

I took the Vitamin D regimen and had the pleasure of telling the surgeon (on the way to his Coroner's inquest hearing...) just exactly where he could stick this.

As Neurostimulation techniques go in CH, the SPG implant looks FAR more promising.

Go the D3 before the scalpel, any day!

End rant.

Cheers, Ben.

I totally agree with CH BRAIN ... The books are cooked !!

Long go, before DBS was ever tried in the US, they were doing it on a small number of patients in Italy. I wanted to pack up and go to Italy to try this because frankly, I was getting HAMMERED day in and day out by '10's' and I was tired. I was not allowed to participate.

Later, Dr. Black from the Mayo Clinic was about to select the first 2 patients for the first DBS trials I the US. Again, I would not get selected for this trial as I was 'too difficult of a case'. I stayed in touch with Dr. Black through e-mails, inquiring about the patients and their progress (if any). The news back to me was never good. Neither of these patients were being helped and 1 had developed an infection. It sounded as if all hope was lost with this trial.

Then, I see a published report on this same trial that claimed a TOTALLY DIFFERENT OUTCOME !?! WTH ??!! The report stated that both patients were benefitting from the DBS and such good results warranted further trials and testing. --> BS !! I know what the doctor told me. I remembered it all too well. Why would they say it was a promising new treatment that needed more attention and trials ??  $$ MONEY $$ !!

My 2 cents worth !

I4B

Imitrex4Breakfast wrote on Nov 11^th, 2013 at 1:44pm:

Later, Dr. Black from the Mayo Clinic was about to select the first 2 patients for the first DBS trials I the US. Again, I would not get selected for this trial as I was 'too difficult of a case'. I stayed in touch with Dr. Black through e-mails, inquiring about the patients and their progress (if any). The news back to me was never good. Neither of these patients were being helped and 1 had developed an infection. It sounded as if all hope was lost with this trial. Then, I see a published report on this same trial that claimed a TOTALLY DIFFERENT OUTCOME !?! WTH ??!! The report stated that both patients were benefitting from the DBS and such good results warranted further trials and testing. --> BS !! I know what the doctor told me. I remembered it all too well. Why would they say it was a promising new treatment that needed more attention and trials ??  $$ MONEY $$ !!

Are you serious?!

That's just... well quite frankly, I find it quite disturbing and frightening, even. I mean, sometimes clinical trials can be frustrating because they can take a long time... but ultimately it's for safety. This makes me wonder how many clinical trials have truthful results published. Not only is that completely unethical, but it's hazardous! Unbelievable...

Search this web site. Large selection of articles which may be useful.

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE. Two books, one free, available as an e-book; second aimed as professionals. Section of many journal articles. Site worth exploring. Robbins is one of the leading headache docs in the Chicago area.