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New CH.com Forum › Cluster Headache Help and Support › Getting to Know Ya › Hello fellow sufferers

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Hello fellow sufferers (Read 1844 times)

David O

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Hello fellow sufferers
Oct 5^th, 2011 at 8:21am

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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Guiseppi

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San Diego to Florida 05-16-2011

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Re: Hello fellow sufferers
Reply #1 - Oct 5^th, 2011 at 9:01am

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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! Wink

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

"Somebody had to say it" is usually a piss poor excuse to be mean.

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DennisM1045

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One wave at a time!

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Haverhill, Massachusetts, USA
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Re: Hello fellow sufferers
Reply #2 - Oct 5^th, 2011 at 12:34pm

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! Wink

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

-Dennis-

Where there is life, there is hope.
Where there is Oxygen, you must use proper caution.
So be safe, don't smoke while using O2. Kill the pain and not yourself.

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Guiseppi CH.com Moderator CH.com Alumnus Offline San Diego to Florida 05-16-2011 Posts: 12063 SAN DIEGO, CALIFORNIA USA Gender:	Re: Hello fellow sufferers Reply #3 - 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
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bejeeber

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Re: Hello fellow sufferers
Reply #4 - Oct 5^th, 2011 at 1:38pm

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. Cool

CH according to Bejeeber:

Strictly relying on doctors for CH treatment is often a prescription that will keep you in a whole lot of PAIN. Doctors are WAY behind in many respects, and they are usually completely unaware of the benefits of high flow 100% O2.

There are lots of effective treatments documented at this site. Take matters into your own hands, learn as much as you can here and at clusterbusters.com, put it into practice, then tell this CH beast Jeebs said hello right before you bash him so hard with a swift uppercut knockout punch that his stupid horns go flinging right off.

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Mike NZ

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Oxygen rocks! D3 too!

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Auckland, New Zealand
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Re: Hello fellow sufferers
Reply #5 - Oct 5^th, 2011 at 2:30pm

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.

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Bob Johnson

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"Only the educated are
free." -Epictetus

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Kennett Square, PA (USA)
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Re: Hello fellow sufferers
Reply #6 - Oct 6^th, 2011 at 11:12am

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]

Bob Johnson

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deltadarlin CH.com Alumnus Offline I love YaBB 1G - SP1! Posts: 3823 Downsville LA Gender:	Re: Hello fellow sufferers Reply #7 - Oct 6^th, 2011 at 5:00pm 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.
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Guiseppi CH.com Moderator CH.com Alumnus Offline San Diego to Florida 05-16-2011 Posts: 12063 SAN DIEGO, CALIFORNIA USA Gender:	Re: Hello fellow sufferers Reply #8 - Oct 6^th, 2011 at 6:00pm Thank goodness our own "Bob-O-Link" posted and cleared that up for you! Joe
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