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Topic: New to site- old sufferer (Read 331 times) |
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Chuck_I
New Board Newbie
Long-Time Clusterhead
 
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Posts: 3
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New to site- old sufferer
« on: Mar 31st, 2004, 3:10pm » |
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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
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Superpain
New Board Hall of Famer
GOT O2!?
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Posts: 1351
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Re: New to site- old sufferer
« Reply #1 on: Mar 31st, 2004, 3:20pm » |
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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!
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Chris
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Belle
New Board Veteran
Kiss Me You Fool!
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Posts: 146
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Re: New to site- old sufferer
« Reply #2 on: Mar 31st, 2004, 6:14pm » |
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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
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Take the time to stop and smell the roses!
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FZfan
New Board Old Timer
Not Insane
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Posts: 459
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Re: New to site- old sufferer
« Reply #3 on: Mar 31st, 2004, 6:47pm » |
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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!
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There is no such thing as a dirty word. Nor is there a word so powerful, that it's going to send the listener to the lake of fire upon hearing it. - FZ
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TxBasslady
CH.com Alumnus
New Board Hall of Famer
Bass fishin' is a h00t It's the catchin' that sux
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Re: New to site- old sufferer
« Reply #4 on: Apr 1st, 2004, 9:55pm » |
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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
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How lucky I am... to have known someone who was so hard to say goodbye too.
Take a kid fishin
www.takemefishin.org
I adopted a Vietnam POW/MIA from El Paso, Texas! 
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Bob_Johnson
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Re: New to site- old sufferer
« Reply #5 on: Apr 2nd, 2004, 5:56am » |
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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( :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.
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| « Last Edit: Apr 2nd, 2004, 5:58am by Bob_Johnson » |
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Bob Johnson
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