"Occipital nerve stimulation improves the quality of life in medically-intractable chronic cluster headache"

[CHfather]

Occipital nerve stimulation improves the quality of life in medically-intractable chronic cluster headache: Results of an observational prospective study; Fontaine D, Blond S, Lucas C, Regis J, Donnet A, Derrey S, Guegan-Massardier E, Jarraya B, Dang-Vu B, Bourdain F, Valade D, Roos C, Creach C, Chabardes S, Giraud P, Voirin J, Bloch J, Rocca A, Colnat-Coulbois S, Caire F, Roger C, Romettino S, Lanteri-Minet M; Cephalalgia (Oct 2016)

BACKGROUND Occipital nerve stimulation (ONS) has been proposed to treat chronic medically-intractable cluster headache (iCCH) in small series of cases without evaluation of its functional and emotional impacts.

METHODS We report the multidimensional outcome of a large observational study of iCCH patients, treated by ONS within a nationwide multidisciplinary network (https://clinicaltrials.gov NCT01842763), with a one-year follow-up. Prospective evaluation was performed before surgery, then three and 12 months after.

RESULTS One year after ONS, the attack frequency per week was decreased>30% in 64% and>50% in 59% of the 44 patients. Mean (Standard Deviation) weekly attack frequency decreased from 21.5 (16.3) to 10.7 (13.8) (p = 0.0002). About 70% of the patients responded to ONS, 47.8% being excellent responders. Prophylactic treatments could be decreased in 40% of patients. Functional (HIT-6 and MIDAS scales) and emotional (HAD scale) impacts were significantly improved, as well as the health-related quality of life (EQ-5D). The mean (SD) EQ-5D visual analogic scale score increased from 35.2 (23.6) to 51.9 (25.7) (p = 0.0037). Surgical minor complications were observed in 33% of the patients.

CONCLUSION ONS significantly reduced the attack frequency per week, as well as the functional and emotional headache impacts in iCCH patients, and dramatically improved the health-related quality of life of responders.

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ONS is an option of last resort for iCCHers who have tried all other means of controlling their CH.  The following link will take readers to the study results.  http://journals.sagepub.com/doi/full/10.1177/0333102416673206

 

What's significant about the results of this study is what the authors don't say or explain. There is no mention of the invasive nature or the ONS implant surgical procedure, complications, expense, user involvement in its functions, or where the benefits of ONS occur.  There's also no mention of medical evidence or its strength. 

 

I had the opportunity to work closely with an iCCHer in Switzerland, Michael Berger, a.k.a. "Wildhaus" at CH.com, as he went through the ONS surgical implant procedures and over four years of follow-up until he had the ONS stimulator surgically removed.  During that time I remained in constant contact with Michael and I made two trips to stay with him at his home in Wildhaus, Switzerland.  You can find his saga and first-hand account of his experience with ONS at the following link:

 

http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1221233650/98/#98

 

The following two links will take you to photographs of Michael's ONS hardware before the complete implant.

 

http://im1.shutterfly.com/media/47b8cf20b3127ccec5d7e748bd8500000040O00AbMmbFu4Y...

http://im1.shutterfly.com/media/47b8cf20b3127ccec5d6e9141ca200000040O00AbMmbFu4Y...

 

For ONS to be effective in halting/aborting CH attacks, the iCCHer must be aware of an approaching CH and trigger one or more of a collection of preset stimulation patterns with the remote control device before the CH pain level gets too high.  Nearly all CH abortives become less effective as the pain level increases and rarely work at and above Level-9 on the 10-Point Headache Pain Scale.

 

We all know how problematic CH can be when they occur during sleep.  In most cases, the CH pain is already at Level-5 or above and rising fast by the time we're awake enough to realize what's happening.  That puts ONS behind the 8-Ball when CH hit while sleeping... Unfortunately, the study data does not have the granularity to assign a level of effectiveness when CH hit while sleeping.

 

Michael has been on the anti-inflammatory regimen for nearly four years.  While not completely CH pain free, he does have a good quality of life and maintains an active work schedule with weekly travel.

 

Take care,

V/R, Batch