4.7 Honest Overall Assessment for a Person With Chronic Daily CH

1. The therapy with the best trial evidence (SPG stimulation) is the one you cannot get. Two positive sham-controlled RCTs, a strong EAN recommendation, and no manufacturer. That is the defining absurdity of this field.
2. nVNS is realistically available to you in Australia, and the acute evidence in chronic CH is null. ACT1 and ACT2 both put chronic patients numerically below sham for acute treatment. The case for trying it rests on PREVA — an open-label preventive trial — and on real-world series where 43% of refractory chronic patients hit ≥50% reduction at 3 months. NICE’s “stop at 3 months if no reduction” rule is a sensible personal protocol, particularly given there is no Australian subsidy and the refill card counts down whether you use it or not.
3. Two independent controlled designs have now failed to show that ONS’s electricity is the active ingredient (ICON’s equal dose arms; Fogh-Andersen’s placebo beating burst ONS). Long-term open-label outcomes are nonetheless good and 81% of L-ICON patients would recommend it. Both facts are real. If considering ONS, the surgeon’s technique matters enormously — modern tined-lead technique produced zero lead migrations in 45 patients over 6 years, versus 25% in a 2003–2007 series.
4. DBS should be treated as a last resort with a real, documented mortality. One death in 108 published cases, 16.67% major complications, two patients left with irreversible neurological deficits, and the only randomised trial was negative. Leone’s disease-modification finding is genuinely interesting and genuinely unreplicated.
5. Destructive surgery is history for good reasons, and the reasons — a numb face, anaesthesia dolorosa, corneal ulceration, contralateral recurrence — are worth knowing so you can recognise them if anyone ever proposes a variant.
6. Verify the community sentiment gap: there is essentially no structured citizen-science data on any of these devices in the CH community. The forum record is thin, and the loudest patient voices in the literature (Möllmann-Bohle, White) are about company abandonment, not efficacy. Anyone quoting confident “what patients say” figures about CH neuromodulation is likely extrapolating from very little.