Comments on: Does occipital nerve stimulation work? http://www.clusterattack.com/blog/treatment-of-intractable-chronic-cluster-headache-by-occipital-nerve-stimulation-in-fourteen-patients/ Thu, 19 Apr 2012 11:28:48 +0000 hourly 1 http://wordpress.org/?v=3.3.1 By: Cythia Nuara http://www.clusterattack.com/blog/treatment-of-intractable-chronic-cluster-headache-by-occipital-nerve-stimulation-in-fourteen-patients/comment-page-1/#comment-444 Cythia Nuara Sat, 10 Sep 2011 11:26:36 +0000 http://clusterattack.com/?p=42#comment-444 Hi there Cythia Nuara right here, wonderful article relating to Cluster Attack - Bringing Cluster Headache Researchers and Patients Together. There appear to be an issue with your web web-site while visited with ie, a few details did not load up appropriately… Internet explorer still is industry leader and a large portion of people will lose your great posting due to this problem. Hi there Cythia Nuara right here, wonderful article relating to Cluster Attack – Bringing Cluster Headache Researchers and Patients Together. There appear to be an issue with your web web-site while visited with ie, a few details did not load up appropriately… Internet explorer still is industry leader and a large portion of people will lose your great posting due to this problem.

]]> By: me http://www.clusterattack.com/blog/treatment-of-intractable-chronic-cluster-headache-by-occipital-nerve-stimulation-in-fourteen-patients/comment-page-1/#comment-230 me Wed, 02 Jun 2010 01:34:31 +0000 http://clusterattack.com/?p=42#comment-230 if the shot is givien in the wrong spot what would happen? can anthting happen? if the shot is givien in the wrong spot what would happen? can anthting happen?

]]> By: Phil http://www.clusterattack.com/blog/treatment-of-intractable-chronic-cluster-headache-by-occipital-nerve-stimulation-in-fourteen-patients/comment-page-1/#comment-215 Phil Fri, 21 May 2010 15:44:41 +0000 http://clusterattack.com/?p=42#comment-215 I would like to tell you about my understanding of the medications used by ONSI patients. ONSI patients here in the UK have openly posted about their use of medications. By their own admission they were using medications (abortive and preventative) right up to the day of their operation and continued to afterwards. So I struggle to understand the authors claims that they only operate on the intractable. I have yet to hear of one ONSI recipient who has stopped all other medications. I know of a handfull who continue with medications and oxygen. Of course my word is only anecdotal (although you can find posts by these sufferers with a few minutes searching) but then so are the claims of the authors who, it has been suggested, have not conducted any systematic post-operation research. I am told their research comprised of a phone call to each sufferer. This claim is second/third hand and I would welcome being corrected. I would like to tell you about my understanding of the medications used by ONSI patients. ONSI patients here in the UK have openly posted about their use of medications. By their own admission they were using medications (abortive and preventative) right up to the day of their operation and continued to afterwards. So I struggle to understand the authors claims that they only operate on the intractable.

I have yet to hear of one ONSI recipient who has stopped all other medications. I know of a handfull who continue with medications and oxygen.

Of course my word is only anecdotal (although you can find posts by these sufferers with a few minutes searching) but then so are the claims of the authors who, it has been suggested, have not conducted any systematic post-operation research. I am told their research comprised of a phone call to each sufferer. This claim is second/third hand and I would welcome being corrected.

]]> By: Friedrich http://www.clusterattack.com/blog/treatment-of-intractable-chronic-cluster-headache-by-occipital-nerve-stimulation-in-fourteen-patients/comment-page-1/#comment-44 Friedrich Thu, 12 Nov 2009 22:33:26 +0000 http://clusterattack.com/?p=42#comment-44 Please don’t fall of the chair again, my intention for the previous comment was just to add some information about research regarding the relationship between the neck and head pain. Joe Public knows that there is a relationship, but research hasn’t found the cause and the reason yet? Some comments about the paper from Burns et al.: I am glad to read, that three out of 14 patients (21%) noticed a marked improvement of 90% or better. But in total only five of the 14 patients (36%) reported an improvement of more than 50%. In some other studies placebo did have a better efficacy than 36%. Please see: http://www.ncbi.nlm.nih.gov/pubmed/12950375 Furthermore the patients were not asked to use headache diaries for the study. In my opinion the data reported by the authors is questionable, at least regarding the "mild improvement of 20–30% (20%, 20%, 25%, and 30%)." - Quote: "Follow-up and data collection. Data were collected from patient records, outpatient visits, and mail and telephone by one investigator (B.B.). Patients retrospectively compared their attacks before and after the procedure; patient diaries were not used." – End of quote. Source of the quote: Burns B, Watkins L, Goadsby PJ.: Treatment of intractable chronic cluster headache by occipital nerve stimulation in 14 patients. Neurology. 2009 Jan 27; 72: 341-5. What would a patient “retrospectively“ say about such a treatment as ONS, being asked by the Doctor? Btw: A data sheet with the ONS settings used and a list of the complications is available at: http://www.neurology.org/cgi/content/full/72/4/341/DC1 In the paper from Burns et al. I could not find a statement about the preventive medications taken by the patients, only the sentence: "Patients who improved did so without the addition of new therapy, other than patient 8, who occasionally used intermittent dexamethasone." Have all the other patients been treated with ONS only, or did they receive any additional preventive medication? All patients were intractable, according to the authors, having tried and failed or being unable to tolerate at least four of the most commonly used preventive medications. But does that mean that they didn’t take any preventive medication? Please don’t fall of the chair again, my intention for the previous comment was just to add some information about research regarding the relationship between the neck and head pain. Joe Public knows that there is a relationship, but research hasn’t found the cause and the reason yet?

Some comments about the paper from Burns et al.: I am glad to read, that three out of 14 patients (21%) noticed a marked improvement of 90% or better. But in total only five of the 14 patients (36%) reported an improvement of more than 50%. In some other studies placebo did have a better efficacy than 36%. Please see: http://www.ncbi.nlm.nih.gov/pubmed/12950375

Furthermore the patients were not asked to use headache diaries for the study. In my opinion the data reported by the authors is questionable, at least regarding the “mild improvement of 20–30% (20%, 20%, 25%, and 30%).”

– Quote:
“Follow-up and data collection.
Data were collected from patient records, outpatient visits, and mail and telephone by one investigator (B.B.).
Patients retrospectively compared their attacks before and after the procedure; patient diaries were not used.”
– End of quote.

Source of the quote: Burns B, Watkins L, Goadsby PJ.: Treatment of intractable chronic cluster headache by occipital nerve stimulation in 14 patients. Neurology. 2009 Jan 27; 72: 341-5.

What would a patient “retrospectively“ say about such a treatment as ONS, being asked by the Doctor?

Btw: A data sheet with the ONS settings used and a list of the complications is available at:
http://www.neurology.org/cgi/content/full/72/4/341/DC1

In the paper from Burns et al. I could not find a statement about the preventive medications taken by the patients, only the sentence: “Patients who improved did so without the addition of new therapy, other than patient 8, who occasionally used intermittent dexamethasone.”

Have all the other patients been treated with ONS only, or did they receive any additional preventive medication? All patients were intractable, according to the authors, having tried and failed or being unable to tolerate at least four of the most commonly used preventive medications. But does that mean that they didn’t take any preventive medication?

]]> By: asewell http://www.clusterattack.com/blog/treatment-of-intractable-chronic-cluster-headache-by-occipital-nerve-stimulation-in-fourteen-patients/comment-page-1/#comment-19 asewell Wed, 21 Oct 2009 14:54:00 +0000 http://clusterattack.com/?p=42#comment-19 Thank you for the references! I may do a short series exploring the links between the occipital and trigeminal nerves, since it's an interesting subject. Thank you for the references! I may do a short series exploring the links between the occipital and trigeminal nerves, since it’s an interesting subject.

]]> By: Friedrich http://www.clusterattack.com/blog/treatment-of-intractable-chronic-cluster-headache-by-occipital-nerve-stimulation-in-fourteen-patients/comment-page-1/#comment-15 Friedrich Thu, 08 Oct 2009 19:24:58 +0000 http://clusterattack.com/?p=42#comment-15 There were some reports about a "functional connectivity" between trigeminal and occipital nerves, e.g.: http://www.ncbi.nlm.nih.gov/pubmed/16396666 http://www.ncbi.nlm.nih.gov/pubmed/17850348 but see also: http://www.ncbi.nlm.nih.gov/pubmed/18513262 Another related article, free full text: http://brain.oxfordjournals.org/cgi/content/full/125/7/1496 There were some reports about a “functional connectivity” between trigeminal and occipital nerves, e.g.:

http://www.ncbi.nlm.nih.gov/pubmed/16396666

http://www.ncbi.nlm.nih.gov/pubmed/17850348

but see also:

http://www.ncbi.nlm.nih.gov/pubmed/18513262

Another related article, free full text:

http://brain.oxfordjournals.org/cgi/content/full/125/7/1496

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