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        New Message Board Archives >> 2004-2005 Getting to Know Ya Posts >> New to site- old sufferer
        
(Message started by: Chuck_I on Mar 31^st, 2004, 3:10pm)

Title: New to site- old sufferer
Post by Chuck_I on Mar 31^st, 2004, 3:10pm

My name is Chuck_I, Started another bout with clusters on Valentine's Day. As of today I have just finished my 138 th cluster and used 14 Oxygen E tanks to date..I'm now 72 and my clusters began in 1981....The doctors told me "that as you get older, they will deminish...I was in my 60's then..Ugh....boy were they wrong...I take
Rx Calan 180 mg. but it doesn't seem to work very well. Oxygen helps to keep the pain and the duration to 10 to 15 min. and stays at a 7 or under.
I am new to the site and I want to read everyone's experience with clusters and what works for them...Thank you ...Chuck

Title: Re: New to site- old sufferer
Post by Superpain on Mar 31^st, 2004, 3:20pm

So they didn't start till you were 49?
It's interesting that you are able to keep count of all that... I can't even keep track of how many hits of O2 I take... I usually lose count around 15.
Welcome. Glad you found us! There's ton's of good info here!

Title: Re: New to site- old sufferer
Post by Belle on Mar 31^st, 2004, 6:14pm

Welcome to the board Chuck_I. Sorry you have to be here and that you have been suffering for so long. You are no longer alone in this fight we are here for you day and night (I made a rhyme). Do as you said, read, read, read and check out all the buttoms and stuff. There are tons of wonderful people here with good info and funny stories to add to help keep your spirits high.

Belle
::)

Title: Re: New to site- old sufferer
Post by FZfan on Mar 31^st, 2004, 6:47pm

Welcome Chuck.

Glad to hear you can get some relief from o2. Hopefully you'll find the information and support here to make them more bearable or even disappear.

23 years with the beast, huh? I gather from you're post that you're episodic. Have you always been episodic? What are your cycles like?

Let us know what you find here and how you're doing. Ask any question you like.

Are you retired? How horrible to make it to retirement and still have clusters.

I'd say it's high time that beast of yours retired, too!

Title: Re: New to site- old sufferer
Post by TxBasslady on Apr 1^st, 2004, 9:55pm

Hi Chuck,

Welcome to the board.

Lots to read ......lots of support.....and lots of friendships can be made here.

Sorry you're having a rough time. Stay with us....post and let us know how you're doing. Usually someone here 24/7.

PF vibes,

Jean

Title: Re: New to site- old sufferer
Post by Bob_Johnson on Apr 2^nd, 2004, 5:56am

Chuck, your Calan dose is rather low for cluster. It's not unusual to need 2 to 4x more to get relief.

If age or medical conditions make your doc nervous about increasing this much, look over the "med survey" (on left) for options.

I'm 68; have had excellent results with the following:

1: Headache 2001 Sep;41(8):813-6

Olanzapine as an Abortive Agent for Cluster Headache.

Rozen TD.

Department of Neurology, Jefferson Headache Center/Thomas Jefferson University Hospital, Philadelphia, Pa.

OBJECTIVE: To evaluate olanzapine as a cluster headache abortive agent in an open-label trial. BACKGROUND: Cluster headache is the most painful headache syndrome known. There are very few recognized abortive therapies for cluster headache and fewer for patients who have contraindications to vasoconstrictive drugs. METHODS: Olanzapine was given as an abortive agent to five patients with cluster headache in an open-label trial. The initial olanzapine dose was 5 mg, and the dose was increased to 10 mg if there was no pain relief. The dosage was decreased to 2.5 mg if the 5-mg dose was effective but caused adverse effects. To be included in the study, each patient had to treat at least two attacks with either an effective dose or the highest tolerated dose. RESULTS: Five patients completed the investigation (four men, one woman; four with chronic cluster, one with episodic cluster). Olanzapine reduced cluster pain by at least 80% in four of five patients, and two patients became headache-free after taking the drug. Olanzapine typically alleviated pain within 20 minutes after oral dosing and treatment response was consistent across multiple treated attacks. The only adverse event was sleepiness. CONCLUSIONS: Olanzapine appears to be a good abortive agent for cluster headache. It alleviates pain quickly and has a consistent response across multiple treated attacks. It appears to work in both episodic and chronic cluster headache.

--------------------------------------------------------------------------------

Olanzapine has a brand name of "Zyprexa" and is a antipsychotic. Don't be put off by this primary usage. Several of the drugs used to treat CH are cross over applications, that is, drugs approved by the FDA for one purpose which are found to be effective with unrelated conditions--BJ.