Have you had it?
Was it a magical cure?
Were there side effects?
What was involved?
What are the risks involved?

I'm getting desperate and wondering whether I should push to have this done?

J x

The Lancet 2007; 369:1099-1106

Treatment of medically intractable cluster headache by occipital nerve stimulation: long-term follow-up of eight patients
Brian Burns MRCP a,   Laurence Watkins FRCS b   and   Prof Peter J Goadsby MD  a c

Summary
Background
Cluster headache is a form of primary headache that features repeated attacks of excruciatingly severe headache usually occurring several times a day. Patients with chronic cluster headache have unremitting illness that necessitates daily preventive medical treatment for years. When medically intractable, the condition has previously been treatable only with cranially invasive or neurally destructive methods.

Methods
Eight patients with medically intractable chronic cluster headache were implanted in the suboccipital region with electrodes for occipital nerve stimulation. Other than the first patient, who was initially stimulated unilaterally before being stimulated bilaterally, all patients were stimulated bilaterally during treatment.

Findings
At a median follow-up of 20 months (range 6–27 months for bilateral stimulation), six of eight patients reported responses that were sufficiently meaningful for them to recommend the treatment to similarly affected patients with chronic cluster headache. Two patients noticed a substantial improvement (90% and 95%) in their attacks; three patients noticed a moderate improvement (40%, 60%, and 20–80%) and one reported mild improvement (25%). Improvements occurred in both frequency and severity of attacks. These changes took place over weeks or months, although attacks returned in days when the device malfunctioned (eg, with battery depletion). Adverse events of concern were lead migrations in one patient and battery depletion requiring replacement in four.

Interpretation
Occipital nerve stimulation in cluster headache seems to offer a safe, effective treatment option that could begin a new era of neurostimulation therapy for primary headache syndromes.

Affiliations

a. Headache Group, Institute of Neurology, National Hospital for Neurology and Neurosurgery, London WC1N 3BG, UK
b. Division of Neurosurgery, Institute of Neurology, National Hospital for Neurology and Neurosurgery, London WC1N 3BG, UK
c. Department of Neurology, University of California, San Francisco, CA, USA
=====================

Neurology. 2009 Jan 27;72(4):341-5.
Treatment of intractable chronic cluster headache by occipital nerve stimulation in 14 patients.

Burns B, Watkins L, Goadsby PJ.

Headache Group, Department of Neurology, University of California San Francisco, San Francisco, CA 19143-0114, USA.

BACKGROUND: Cluster headache is a primary headache involving repeated attacks of excruciatingly severe headache usually occurring several times a day. Most patients with chronic cluster headache (CCH) have an unremitting illness requiring daily preventive therapy for years. OBJECTIVE: To describe the clinical outcome of occipital nerve stimulation (ONS) for 14 patients with intractable CCH. METHODS: Fourteen patients with medically intractable CCH were implanted with bilateral electrodes in the suboccipital region for ONS and a retrospective assessment of their clinical outcome obtained. RESULTS: At a median follow-up of 17.5 months (range 4-35 months), 10 of 14 patients reported improvement and 9 of these recommend ONS. Three patients noticed a marked improvement of 90% or better (90%, 90%, and 95%), 3 a moderate improvement of 40% or better (40%, 50%, and 60%), and 4 a mild improvement of 20-30% (20%, 20%, 25%, and 30%). Improvement occurred within days to weeks for those who responded most and patients consistently reported their attacks returned within hours to days when the device was off. One patient found that ONS helped abort acute attacks. Adverse events of concern were lead migrations and battery depletion. CONCLUSION: Intractable chronic cluster headache (CCH) is a devastating, disabling condition that has traditionally been treated with cranially invasive or neurally destructive procedures. ONS offers a safe, effective option for some patients with CCH. More work is required to evaluate and understand this novel therapy.

PMID: 19171831 [PubMed]

Oh give me a break, I'm on Dopeymax  ;D

Most of Bob's posts are cites from medical studies, and they are extremely helpful.

Get somebody to read it to you if you're having trouble. You'll most likely find some kernels of wisdom and truth contained therein.

Joeytastic wrote on Jul 31^st, 2009 at 11:43am:

Have you had it? YES Was it a magical cure? NO- CH has no cure that I know off Were there side effects? See the link I add What was involved? What are the risks involved? I'm getting desperate and wondering whether I should push to have this done? J x

Link to my posting about Occipital Nerve Block

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Michael

Hi Joey,

I had the occiptal nerve block injection last week under the recommendation that it had the potential to stop the cycle in its tracks...

The procedure wasn't bad (wasn't pleasant either) and was over pretty quickly. You feel some numbness creeping up your head on one side and thats pretty much it.

It didn't work for me but then everybody's different and I would defo give it a try if all other meds were failing the neuro suggests it. Good luck  :)

Hiya love

I've had a coupel of PF days so going to see how I go but if I get that bad again I think I might def consider it as last week was living hell.

Did you get your O2?
x

From what I was told by one of my neuro's, the occipital nerve injection will only be beneficial if you're having problems with the occipital nerve as a trigger.

Since I was having pain there, but am allergic to steroids, he did an injection with just lidocaine. It worked great for the 2 hours the lidocaine was effective, then because my nerves tend to get pissy if they're fucked with, all of the nerves in my head throbbed for the next 2 days.

I honestly think I'd have done a hell of a lot better with steroids, but my doctors and I were not willing to risk my life to try it.

Pixie-elf wrote on Aug 2^nd, 2009 at 11:02pm:

From what I was told by one of my neuro's, the occipital nerve injection will only be beneficial if you're having problems with the occipital nerve as a trigger.

Steriods works very well and very fast for me but obviously I can't keep taking them. Is this a good indictaion that a nerve block would be a sucess and that the problem is opccipital nerve related? I know it's to do with swelling but to be honest during an attack it's hard to tell if I am swollen or not because every blood vessel in the right hand side of my skull feels in danger of bursting.