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Cluster Headache Help and Support >> Getting to Know Ya >> Any Irish sufferers out there?
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Message started by DeSelby on Oct 7th, 2011 at 12:11pm

Title: Any Irish sufferers out there?
Post by DeSelby on Oct 7th, 2011 at 12:11pm
Hi everybody,

46 y/o male, Dublin Ireland. Nearly 10 year sufferer, long term forum lurker, first time poster.

I have no idea why, but I feel the need to share. I was a chronic sufferer for almost 8 years, every day, usually twice a day, and absolutely typical comparing myself to fellow sufferers on here. A classic case even.

I found relief about 10 months ago, when a new doctor (the only one who ever seemed to understand actually) prescribed me 240 mg Isoptin per day. And I have had 10 months stress free, fear free, depression free and pain free. A few shadows, a few small ones, but essentially free.

And then, three days ago, they came back. Just like that. 5 in three days now. Ranging from standard and just sore and somehow bearable, to mind bendingly excruciating and oh my God, here we go again!

And I'm not happy about this. Not one little bit. 

But I will get through it. And they WILL go away again. 

But I am so annoyed. Really really annoyed. How dare they come back like this. 

Anyway. That's pretty much all. I really felt the need to vent. And I want to put out a call to any Irish sufferers out there. I would be very interested in joining or forming an Irish support group to educate our doctors about our condition. And obviously to share any funny anecdotes we have about cluster headaches. In the pub. .... NOT!

Love and stuff
DeSelby

Title: Re: Any Irish sufferers out there?
Post by Bob Johnson on Oct 7th, 2011 at 12:36pm
You've found a home!

But you may also wish to contact your excellent support group:    START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE

It would be helpful if you would give us two kinds of information: what specific treatments have you tried in the past (generic med name [if you can], dose and duration of use.); do you have access to a headache clinic?; and, then ask specific questions about the kinds of help/information you wish.
==============================
A couple of interesting items...

Neurol Surg. 2011;24:126-32. Epub 2011 Mar 21.
Peripheral nerve stimulation in chronic cluster headache.
Magis D, Schoenen J.
SourceHeadache Research Unit, University Department of Neurology, CHR Citadelle, Liège, Belgium.

Abstract
Cluster headache is well known as one of the most painful primary neurovascular headache. Since 1% of chronic cluster headache patients become refractory to all existing pharmacological treatments, various invasive and sometimes mutilating procedures have been tempted in the last decades. Recently, neurostimulation methods have raised new hope for drug-resistant chronic cluster headache patients. The main focus of this chapter is on stimulation of the great occipital nerve, which has been the best evaluated peripheral nerve stimulation technique in drug-resistant chronic cluster headache, providing the most convincing results so far. Other peripheral nerve stimulation approaches used for this indication are also reviewed in detail. Although available studies are limited to a relatively small number of patients and placebo-controlled trials are lacking, existent clinical data suggest that occipital nerve stimulation should nonetheless be recommended for intractable chronic cluster headache patients before more invasive deep brain stimulation surgery. More studies are needed to evaluate the usefulness of supraorbital nerve stimulation and of vagus nerve stimulation in management of cluster headaches.

Copyright © 2011 S. Karger AG, Basel.
=====================
PMID:21422783[PubMed]
Curr Treat Options Neurol. 2011 Feb;13(1):56-70.
MANAGEMENT OF CHRONIC CLUSTER HEADACHE.
Leone M, Franzini A, Proietti Cecchini A, Mea E, Broggi G, Bussone G.
SourcePain Neuromodulation Unit, Department of Neurology, Headache Center, Carlo Besta Neurological Institute Foundation, Via Celoria 11, 20133, Milano, Italy, leone@istituto-besta.it.

Abstract
OPINION STATEMENT: Primary cluster headache (CH) is an excruciatingly severe pain condition. Several pharmacologic agents are available to treat chronic CH, but few double-blind, randomized clinical trials have been conducted on these agents in recent years, and the quality of the evidence supporting their use is often low, particularly for preventive agents. We recommend sumatriptan or oxygen to abort ongoing headaches; the evidence available to support their use is good (Class I). Ergotamine also appears to be an effective abortive agent, on the basis of experience rather than trials. We consider verapamil and lithium to be first-line preventives for chronic CH, although the trial evidence is at best Class II. Steroids are clearly the most effective and quick-acting preventive agents for chronic CH, but long-term steroid use carries a risk of several severe adverse effects. We therefore recommend steroids only if verapamil, lithium, and other preventive agents are ineffective. In rare cases, patients experience multiple daily cluster headaches for years and are also refractory to all medications. These patients almost always develop severe adverse effects from chronic steroid use. Such patients should be considered for neurostimulation. Occipital nerve stimulation is the newest and least invasive neurostimulation technique and should be tried first; the evidence supporting its use is encouraging. Hypothalamic stimulation is more invasive and can be performed only in specialist neurosurgical centers. Published experience suggests that about 60% of patients with chronic CH obtain long-term benefit with hypothalamic stimulation.

PMID:21107766[PubMed]

Title: Re: Any Irish sufferers out there?
Post by Batch on Oct 7th, 2011 at 1:02pm
DeSelby,

The "where We live" tab at the left indicates 36 members of CH.com living in Ireland.  14 live in Dublin...  Check them out.

Take care,

V/R, Batch

Title: Re: Any Irish sufferers out there?
Post by Guiseppi on Oct 7th, 2011 at 3:05pm
Welcome to the group Deselby, take a second and read this link:

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE

It's changed how I view the beast, and has helped a LOT of people. Glad you found us.

Joe

Title: Re: Any Irish sufferers out there?
Post by Mike NZ on Oct 7th, 2011 at 3:54pm
Hi DeSelby

Another vote for oxygen here, it is simply amazing at killing of CHs quickly.

Also your dose for isotopin (verapamil SR) is fairly low as many people need 360-480mg a day with some going to 1000mg. Discuss this with your doctor.

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