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ClstrHeadSupport
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What worked for us for a long time....
« on: Jan 12th, 2005, 1:36pm »
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Hello all,
I haven't been around in while but I'm back so you've probably guessed it.  The cluster monster is back.  The medications (which I found because of all of you) worked for me for a long time.  I think a little over a year now.  For some reason they've stopped working so I'm here again for the much needed support, along with any new medications anyone can offer.  We're willing to try anything at this point.  
I'm also here to tell you what was working in hopes that maybe it will work for you too.  It may not be a permanent solution but I think any of you would agree that a year with nearly no clusters is worth is.  So here's what we've tried in the past (the ones I can remember off the top of my head - there have been sooo many), and the medications that helped us for so long.
 
What we've used in the past that didn't help:
Stadol - use to work well at making the cluster barable until it passed but it rarely actually aborted one
Topamax - saw no difference
Prednizone (not sure if I spelled that right) - worked for a few months really well but because it's a steroid there is a lot of weight gain and doctors don't like you to be on it for long
Nurontin - saw no difference
Imitrex tablets - didn't help (but thanks to you we found out about the injectables and those are a God send)
....that's all I can think of for now but I'm positive there are more...
 
Here's what worked for us for the year we had with literally few to no clusters:
Verapamil - preventative
Imitrex injectables - abortive
Predizone (when he started to get a few clusters here and there)
 
Tomorrow is my Cluster Head's appointment and I really could use any new medications that you guys have heard of or that have worked so we can ask his nuro about them!  I hope to find here what we found the last time!
 
Thank you all so much for your help.
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Sara Pope
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Re: What worked for us for a long time....
« Reply #1 on: Jan 12th, 2005, 3:01pm »
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Your experience of a med stopping being effective is not unusual; the medical literature is full of these reports.
 
Some of us have had excellent results with this one:
 
1: Headache 2001 Sep;41(Cool: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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Bob Johnson
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Re: What worked for us for a long time....
« Reply #2 on: Jan 12th, 2005, 3:14pm »
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Just a few:
 
O2
Triptans  
Verapamil
Lithium
Neurontin
Keppra
Zyprexa
Topamax
Lamictal
Indomethacin
DHE IV
Droperidol IV
Histamine Drip Therapy
Steriods
 
Have you tried:
An Occipital nerve block ?
 
 
 
 
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karma
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Re: What worked for us for a long time....
« Reply #3 on: Jan 12th, 2005, 3:17pm »
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Theres an interesting discussion on small doses of lithium that may be worth trying
read:
"Lithium as a prophylactic"
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vig
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CHit Happens

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Re: What worked for us for a long time....
« Reply #4 on: Jan 12th, 2005, 3:25pm »
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but also please be careful with Prednisone laugh
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broomhilda
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Re: What worked for us for a long time....
« Reply #5 on: Jan 12th, 2005, 4:08pm »
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Sorry to hear things are no longer working for your husband any longer, hope you both relief soon...
 
One question I thought of was how much of a doseage of verap has your husband taken, you may want to look at changing the dose levels.. just thinking out loud...
 
Best wishes
 
Andrea
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Suck it up Princess...

floridian
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Re: What worked for us for a long time....
« Reply #6 on: Jan 12th, 2005, 4:29pm »
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What they said, plus maybe melatonin.  
 
Chronic or episodic?
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don
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Re: What worked for us for a long time....
« Reply #7 on: Jan 12th, 2005, 6:56pm »
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Quote:
An Occipital nerve block ?  

 
I dont think an episodic would be a candidate for the block.
 
Could be wrong though.
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heprat
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Re: What worked for us for a long time....
« Reply #8 on: Jan 13th, 2005, 1:28pm »
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You didn't list it but the photo of your cluster head indicates he uses O2.   Great.
 
For me...O2 is the highest recommended abortive.  I use Imitrex injections only when O2 fails or is not available.  I know Imitrex seems like a god send...but for me it had a pretty ugly side as well.  I found and used it a lot on my previous episode.  For me, it significantly increased the severity of my headaches, the lenght of the episode, and the amount of my day time shadows...not to mention the expense and hassle with insurance.
 
Good luck.
There are also "alternatives" by the way.
check out http://www.clusterbusters.com/
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unsolved1
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Re: What worked for us for a long time....
« Reply #9 on: Jan 13th, 2005, 1:56pm »
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on Jan 12th, 2005, 6:56pm, don wrote:

 
I dont think an episodic would be a candidate for the block.
 
Could be wrong though.

 
Sure they would. It's really no big deal. Any pain management center can do this in just a few minutes.
Might even make an episodic skip the whole cycle ??
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