Click this link to read a post I like on the clusterheadaches.com message board...

CherubSpeck

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Rockin in the free world.

Posts: 5
Northwest Arkansas, USA
Gender: male

New to the board, old with the pain
Jun 25^th, 2009 at 2:44pm

Hello all my fellow Clusterheads. What a relief to find a board like this. Anyway, my name is Matt, and I am 4 years into my fight with the beast. I am one of the lucky Chronic daily CH'ers. I have had no more than one pain free day a month for 4 years. I live in AR and there is not much help here. I've been through SO much medical testing before they finally said Cluster Headaches. Most of mine are about a 5-7 kip but about 3 times a week i go all the way to 10, screaming, crying, banging head.

My CH's are random, no set time for them to happen. Night, day, morning, afternoon, i get them all the time. Just got over one at work, it was only a 4 but still sucks.

Anyway, just wanted to say hello and thank you for this wonderful website. It is nice to be able to talk to people who actually understand it's not just a "little headache you should just get over" or "suck it up". The worst for me is "I've had one of those once"...ONCE, well then it's not a CH my friend...

With Love,
Cherub

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First comes smiles,
Then lies,
Last is gunfire.
-Roland
Stephen King "The Dark Tower"

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CherubSpeck CH.com Newbie Offline Rockin in the free world. Posts: 5 Northwest Arkansas, USA Gender:	Re: New to the board, old with the pain Reply #1 - Jun 25^th, 2009 at 2:50pm Sorry, forgot to mention 25yr old Male with very supportive wife who hates this as much as I do
Back to top	First comes smiles, Then lies, Last is gunfire. -Roland Stephen King "The Dark Tower" IP Logged

thebbz

Ex Member

Re: New to the board, old with the pain
Reply #2 - Jun 25^th, 2009 at 2:54pm

Hi and welcome
I had one of those once. Cheesy

Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

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Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

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Ouch.org
Dont forget the tabs to the left, very good information.
all the best
the bb

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Bob Johnson

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"Only the educated are
free." -Epictetus

Posts: 5965
Kennett Square, PA (USA)
Gender: male

Re: New to the board, old with the pain
Reply #3 - Jun 25^th, 2009 at 3:03pm

Headache. 2008 Sep 9. [Epub ahead of print]
Sphenopalatine Ganglion Radiofrequency Ablation for the Management of Chronic Cluster Headache.

Narouze S, Kapural L, Casanova J, Mekhail N.

Cleveland Clinic Foundation-Pain Management Department, Cleveland, OH, USA.

Objectives.- Chronic cluster headache patients are often resistant to pharmacological management. Percutaneous radiofrequency ablation (RFA) of the sphenopalatine ganglion (SPG) was shown before to improve episodic cluster headache but not chronic cluster headache. We were interested to examine the effect of such intervention in patients with intractable chronic cluster headache who failed pharmacological management. Methods.- Fifteen patients with chronic cluster headache, who experienced temporary pain relief following SPG block, underwent percutaneous RFA via the infrazygomatic approach under fluoroscopic guidance. Collected data include demographic variables, onset and duration of the headache, mean attack intensity (MAI), mean attack frequency (MAF), and pain disability index (PDI) before and up to 18 months after procedure. Results.- At 1-, 3-, 6-, 12-, 18-month follow-up, the MAI was 2.6, 3.2, 3.2, 3.4, 4.2, respectively (P < .0001, P < .0001, P < .0001, P < .0005, P < .003, respectively). The PDI improved from 55 (baseline) to 17.2 and 25.6 at 6 and 12 months respectively (P < .001). The MAF improved from 17 attacks/week to 5.4, 6.4, 7.8, 8.6, 8.3 at 1-, 3-, 6-, 12-, 18-month follow-up visits (P < .0001, P < .0001, P < .0001, P < .002, P < .004, respectively). Conclusion.- OUR DATA SHOWED THAT PERCUTANEOUS RFA OF THE SPG IS AN EFFECTIVE MODALITY OF TREATMENT FOR PATIENTS WITH INTRACTABLE CHRONIC CLUSTER HEADACHES. PRECISE NEEDLE PLACEMENT WITH THE USE OF REAL-TIME FLUOROSCOPY AND ELECTRICAL STIMULATION PRIOR TO ATTEMPTING RADIOFREQUENCY LESIONING MAY REDUCE THE INCIDENCE OF ADVERSE EVENTS.

PMID: 18783451 [PubMed]-

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Bob Johnson

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CherubSpeck

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Rockin in the free world.

Posts: 5
Northwest Arkansas, USA
Gender: male

Re: New to the board, old with the pain
Reply #4 - Jun 25^th, 2009 at 3:07pm

Wow, that is a brain buster. Thanks for the information. I will have to print that and take it to someone who can translate it for me. If you have info on it can you answer a question or two?

1. Is this a permanent fix or just a month or two release of pain?

2. Short/long term problems from this. I didn't fully understand the post but it sounded like surgery or something like that. Sorry for sounding stupid Embarrassed

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First comes smiles,
Then lies,
Last is gunfire.
-Roland
Stephen King "The Dark Tower"

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CherubSpeck

CH.com Newbie

Offline

Rockin in the free world.

Posts: 5
Northwest Arkansas, USA
Gender: male

Re: New to the board, old with the pain
Reply #5 - Jun 25^th, 2009 at 3:24pm

To Thebbz
Thank you for the links. From them i found a local dr who said they handle cluster headaches regulary and set up an apptmnt. Hopefully this one will be the one who stops telling me to just deal with it, or stops putting me on narcotics or other medicine that doesn't help. July 2cd is the date, can't wait.

With Love,
Cherub

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First comes smiles,
Then lies,
Last is gunfire.
-Roland
Stephen King "The Dark Tower"

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thebbz

Ex Member

Re: New to the board, old with the pain
Reply #6 - Jun 25^th, 2009 at 3:33pm

Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

or

try this one. When these become intractable, more invasive treatments are used. If your drug resistant and cannot mangage the headaches some resort to these. Certianly an option once all other treatments are tried and fail. Information is key as Bob demonstrated.
Study all you can about your condition, the more you know....
Your just getting started, some chronics here have been battling many years...you will too
all the best
the bb

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BarbaraD

CH.com Alumnus

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Hugs to ya

Posts: 8333
Douglasville, TX
Gender: female

Re: New to the board, old with the pain
Reply #7 - Jun 26^th, 2009 at 7:03am

You really didn't say what you'd tried. Have you tried O2 on a high flow rate (15-25 liters per minute with a NON rebreather mask)? Anything less is useless. DO TRY IT. It works for about 70% of us to abort the headache without drugs (usually).

You said they'd given you narcs for the pain -- forget that one - they DO NOT work on CH. And they can cause rebounds which hurt worse (if possible). A cup of coffee works better than a narc. You might try a can of Red Bull or an energy drink if you're at work at the first sign of a CH (get to it when it first starts) - Chug it. That helps some of us.

Melatonin at night before bed helps a lot of us get thru the night hits. I take 15-18mg and sleep thru the night without a hit.

Where do you live in AR - I'm about 40 miles S of Texarkana. We've got some CHers in AR (not real sure where they live) but we might set up a meet and greet (where a bunch meets for dinner and you get to meet other CHers in person). It's a real experience and you go away with a different attitude knowing you're really not ALONE with this illness. Also there's a convention in ST. Louis in July that's a great experience for any CHer.

But we're here to help... Remember that.

Hugs BD Kiss

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What don't kill ya, Makes ya stronger!

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CherubSpeck

CH.com Newbie

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Rockin in the free world.

Posts: 5
Northwest Arkansas, USA
Gender: male

Re: New to the board, old with the pain
Reply #8 - Jun 26^th, 2009 at 10:31am

I'm in the Northwest AR area, rogers, bentonville, fayetville area. I haven't tried the O2 but i will definitly ask the new DR i'm going to about it, it seems like that will be something to at least TRY.

I have tried a lot of triptan drugs, narcotics (which like you said DIDN'T work at all), what i usually do is try to take like 4 or 5 shots of expresso at the first signs and that seems to help, but it also seems like it just delays them, and if i do that i'll get hit later in the day with one even worse. Usually i can push them away until after work so i don't have to miss much. Thanks for the reply, and i definitly will try the O2 method, seems a LOT of people find relief on here with that. Thanks.

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First comes smiles,
Then lies,
Last is gunfire.
-Roland
Stephen King "The Dark Tower"

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Bob Johnson CH.com Alumnus Offline "Only the educated are free." -Epictetus Posts: 5965 Kennett Square, PA (USA) Gender:	Re: New to the board, old with the pain Reply #9 - Jun 26^th, 2009 at 11:47am Sorry! I threw that abstract up quickly and should have said: I don't understand it either except that it has a positive cast as a treatment. Clearly, something of such complexity that you can only print it out and give to your doc.
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