Well after a 3 year remission the devil has come to visit me again. They started a week ago after I had a couple of glasses of wine and I felt the shadow. I have not had a drink since because I know that is guaranteed to bring on a carpet biter. In the past I have tried Verapimil without success to stop them and then Triptans to try and abort them with some success. At the moment I am managing to keep a lid on them using plenty of caffeine and a frozen pack of peas. I use the peas to cool my head and neck down as soon as I feel a shadow and I seem to be able to abort them. My theory is cluster pain is caused by blood vessels expanding onto the trigeminal nerve and my ice (pea) pack is constricting those same vessels stopping them pressing on the nerves. Caffeine has the same effect.

Anyway my home remedy seems to be working better than anything the Doctor has prescribed in the past and I just hope to God it continues to work because the thought of having full blown attacks again petrefies me.

I hope you all find some relief because I know what you are going through.

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Read this link! I'm a 33 year episodic sufferer, and nothing compares to the speed, consistent effectiveness, ease of use, and cost of oxygen. I go from "oh crap here comes the beast" to completely pain free in less then 8 minutes. Most report similar success.

I use lithium as my prevent, at 1200 mg a day it blocks 60-70% of my hits, with very little in the way of side effects. Worth chatting with the doc about.

As fas as vascular vs. something else, the most current research is leaning away from that! As Bob so eloquently put it, it seems the more we know about CH, the more we realize we don't know! ;)

Go to the meds section of this board and read the post, "123 pain free days and I think I know why." It's a simple daily vitamin and mineral supplement that's providing an amazing amount of relief to many CH'ers.

Glad you found us, read like crazy, an educated CH'er hurts a lot less! :)

Joe

Welcome David!  Listen to Joe.  Good advice there.

Much has changed in 3 years so read read read!.  And do let us know how we can help....


Guiseppi wrote on Oct 5^th, 2011 at 9:01am:

As fas as vascular vs. something else, the most current research is leaning away from that! As Bob so eloquently put it, it seems the more we know about CH, the more we realize we don't know! ;)

I hadn't heard that Joe.  Have any useful links handy?

-Dennis-

No it was a Bob link that had to do with brain scans during attacks..........said they were leaning away from the vascular theory......

Joe

Hey David O,

Glad you're keeping a lid on 'em.  :)

What Giussepi/Joe said about the O2 and the D3 regimen, plus you can supercharge your caffeine remedy by going with an energy drink that also contains plenty of taurine.  8-)

Another vote for oxygen here.

You mentioned you'd used verapamil and it was not effective. How high a dose were you on? It typically needs a dose of 360-480mg to be effective (some go higher) however many doctors put people on a lot lower doses. It also takes about 7-10 days for a dose level to become effective, so don't expect instant results.

Interesting to note that he is saying that the primary mode of action is NOT as a vasoconstrictor but on its effect on the central nervous system. Doesn't change our appreciation of this class of meds but suggests we need to change how we think about the nature of CH.
==============================
Handb Exp Pharmacol. 2007;(177):129-43.   


Serotonin receptor ligands: treatments of acute migraine and cluster headache.


Goadsby PJ.

Institute of Neurology, Queen Square, London WC1N 3BG, UK. peterg@ion.ucl.ac.uk

Fuelled by the development of the serotonin 5-HT(1B/1D) receptor agonists, the triptans, the last 15 years has seen an explosion of interest in the treatment of acute migraine and cluster headache. Sumatriptan was the first of these agonists, and it launched a wave of therapeutic advances. These medicines are effective and safe. Triptans were developed as cranial vasoconstrictors to mimic the desirable effects of serotonin, while avoiding its side-effects. IT HAS SUBSEQUENTLY BEEN SHOWN THAT THE TRIPTANS' MAJOR ACTION IS NEURONAL, WITH BOTH PERIPHERAL AND CENTRAL TRIGEMINAL INHIBITORY EFFECTS, AS WELL AS ACTIONS IN THE THALAMUS AND AT CENTRAL MODULATORY SITES, SUCH AS THE PERIAQUEDUCTAL GREY MATTER. Further refinements may be possible as the 5-HT(1D) and 5-HT(1F) receptor agonists are explored. Serotonin receptor pharmacology has contributed much to the better management of patients with primary headache disorders.

PMID: 17087122 [PubMed]
=================================================================
J Clin Neurosci. 2010 Mar 11.

What has functional neuroimaging done for primary headache ... and for the clinical neurologist?
Sprenger T, Goadsby PJ.

UCSF Headache Centre, Department of Neurology, University of California, 1701 Divisadero St, Suite 480, San Francisco, CA 94115, USA.

Our understanding of mechanisms involved in primary headache syndromes has been substantially advanced using functional neuroimaging.

THE DATA HAVE HELPED ESTABLISH THE NOW-PREVAILING VIEW OF PRIMARY HEADACHE SYNDROMES, SUCH AS MIGRAINE AND CLUSTER HEADACHE, AS BRAIN DISORDERS WITH NEUROVASCULAR MANIFESTATIONS, NOT AS DISORDERS OF BLOOD VESSELS.

PMID: 20227279 [PubMed]

Guiseppi wrote on Oct 5^th, 2011 at 1:04pm:

No it was a Bob link that had to do with brain scans during attacks..........said they were leaning away from the vascular theory...... Joe

I read that as *bobolink* and I was wondering why in the hell a bird was posting on here.

Thank goodness our own "Bob-O-Link" posted and cleared that up for you! :P

Joe ;)