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Topic: Long Time Sufferer - First Time Posting (Read 461 times) |
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bothofus
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Long Time Sufferer - First Time Posting
« on: Jan 16th, 2004, 4:22pm » |
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Hello everybody ! I have been here a few times looking around, well actually my wife found the site about 2 or 3 o'clock one morning trying to see if there was anything new to control them. I am 43 and have had clusters since I was about 18. This last bout started about 1 1/2 months ago. Thought they were getting better but.......
Currently taking beta blockers that seemed to help in the past, but I'm beginning to have my doubts this time on this merry-go-round. Episodic type, though they seem to be different this time. I still have to get vertical, but now it seems best to just sit real still till the beast has had his say. Some last longer than others.
Well, just wanted to say HI ! and give ya"ll a little info.
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Sean_C
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Re: Long Time Sufferer - First Time Posting
« Reply #1 on: Jan 16th, 2004, 4:34pm » |
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Sorry to hear about your bout with the beast.......hopefully it will pass sooner than later. Have you tried trex and O2.. sometimes they can abort the cluster and give you needed relief.
Glad you stopped by anyway, we'll leave the light on for ya. 
PFDAN
Sean...................
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bothofus
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Re: Long Time Sufferer - First Time Posting
« Reply #2 on: Jan 16th, 2004, 4:41pm » |
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Thanks !
Yeah I've used imitrex injections for a few years and they work great. Kinda in-between insurance companies right now though. I was hoping the blockers would prevent them like they have in the past. Haven't tried the O2 yet. Steroids worked well a few years back also, but I didn't like the side affects.
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Charlie
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Re: Long Time Sufferer - First Time Posting
« Reply #3 on: Jan 16th, 2004, 4:57pm » |
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Welcome aboard. I had good luck with beta blockers but then that was all I had when I was getting hit. Worked most of the time.
This is a link to a technique that worked most of the time too:
http://www.netsync.net/users/charlies/
Charlie
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bothofus
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Re: Long Time Sufferer - First Time Posting
« Reply #4 on: Jan 16th, 2004, 5:16pm » |
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Thanks for that bit of reading, I believe I have tried that too. Way back I couldn't be still at all. Constantly moving, rocking, wringing my hands, praying, crying, wondering....
Sure am glad for some better relief nowadays. I took cafergot until I was afraid of getting gangrene of the intestines, didn't seem to work much anyway. And the fiorinal(guess I spelled that right) with codeine only made it where I couldn't hardly walk with the clusters, so I told the doc not to waste his time with it. That was about 11 yrs ago. These is the first bout in about 2 yrs now. Waiting to see what happens tonight.
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TxBasslady
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Re: Long Time Sufferer - First Time Posting
« Reply #5 on: Jan 16th, 2004, 7:00pm » |
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Hi Both,
Welcome to the board.
Sure hope you find the meds you need to fight the beast. You might read the threads on the melatonin. It seems to work for quite a few. One thing you'll see here is that not all things work for everyone.
Keep posting and let us know how you are getting along.
By the way...I see that you live in Texas. We are having a meet and greet Feb 28th in the Dallas area. You might go to that thread and read it and see if maybe you and your wife would be interested in meeting others who suffer with CH.
Sending you PF vibes,
Jean
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K.
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Re: Long Time Sufferer - First Time Posting
« Reply #6 on: Jan 17th, 2004, 12:49am » |
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Welcome and sorry you're suffering. Calcium channel blockers seem to work better for clusters then beta blockers...I think those are more for migraines or so I hear. I've tried both...Verapamil works best for me and my O2 of course. Couldn't live without that! Hang in there. PF vibes being sent your way.
K.
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Callico
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Re: Long Time Sufferer - First Time Posting
« Reply #7 on: Jan 17th, 2004, 1:05am » |
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Glad Bothofyou found us and you let us know.
Calcium channel blockers are more effective than beta blockers as someone else said. you might talk to your dr about trying Verapamil and then try adding Lithium to it. Also, get a scrip for O2. It works for a lot of us. There is a lot of good info in the button on the left.
I'm not in Tx, but I would recommend highly the meet and greet in Dallas. We just had one up in Davenport IA that was one of the best things to happen to me. To meet another clusterhead and supporters was awesome! After almost 25 years with these things to meet someone else who knew what I was going through and understood was awesome.
Hang around and get involved,
Jerry
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bothofus
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Re: Long Time Sufferer - First Time Posting
« Reply #8 on: Jan 17th, 2004, 2:45am » |
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Thanks to all of Ya'll for the support.
Yeah, I need to do something different with the meds. Definitely should have worked by now. As I said though, I am between insurance companies right now. Their customer support says one thing and their letter says another.
I had read about the meet in Texas before on the boards. I'll see what's up around that time.
I'm certainly up now. 1:40 am here, tired, sleepy and NO WAY can I lay down. Will try again later.
Thanks again Ya'll
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Jackie
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Re: Long Time Sufferer - First Time Posting
« Reply #9 on: Jan 17th, 2004, 7:36am » |
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Welcome to the board, Both....
There's a wealth of information and support here.
Read, read and then read some more....knowledge is power when fighting the beast. If ya can't find what you're looking for just ask...there are lots of smart folks here.
Keep us posted on how you're doing....
Jacks 
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bothofus
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Re: Long Time Sufferer - First Time Posting
« Reply #10 on: Jan 17th, 2004, 8:33am » |
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You are exactly right, there is a lot of info here. I'm need to talk to doc Monday about some other meds. Managed about 3 hrs sleep last night, between the interruptions. It sure was nice to go 2 yrs without them.
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Bob_Johnson
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Re: Long Time Sufferer - First Time Posting
« Reply #11 on: Jan 17th, 2004, 9:11am » |
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Ask you doc for a trial of this as a cost saving replacement for imitrex. I've had excellent results with it.
------------
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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Bob Johnson
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Prense
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Re: Long Time Sufferer - First Time Posting
« Reply #12 on: Jan 17th, 2004, 11:25am » |
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Welcome aboard Both!
You are getting some outstanding advice from this gang.
I only wanted to add my greetings.
Regards!
Chris
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Paigelle
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Re: Long Time Sufferer - First Time Posting
« Reply #13 on: Jan 17th, 2004, 12:57pm » |
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Welcome to the club! I am so glad your wife found this site, it is a wonderful place for support for both of you. She will find that many family members don't suffer from CH but are supporting someone in their household that does.
As for the beta blockers, they worked for me once before, but with this cycle they did not. We have all discovered the CH is a strange "disease" to deal with and it changes its tune with meds pretty often.
Good luck in finding something to help and remember we are all here to listen, support and you can really get cracked up around here too.
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Cerberus
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Re: Long Time Sufferer - First Time Posting
« Reply #14 on: Jan 17th, 2004, 1:30pm » |
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Welcome to bothofye 
I also can't offer too much more than the others, but definately insist on the Oxygen its amazing in result for alot of us here myself included.
Ramon
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bothofus
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Re: Long Time Sufferer - First Time Posting
« Reply #15 on: Jan 17th, 2004, 5:19pm » |
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Thanks again everybody, I'll see what can be done about the other meds and O2 ya'll mentioned. I have taken myself off the beta blockers as of today. My body is telling me something and I feel the need to listen. We'll see what happens tonight and go from there.
Great site and ya'll seem like a great bunch of cluster heads. I thought about starting a thread of favorite aggie jokes. What do ya'll think?
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thomas
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Re: Long Time Sufferer - First Time Posting
« Reply #16 on: Jan 17th, 2004, 6:38pm » |
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welcome aboard 
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Renee
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Re: Long Time Sufferer - First Time Posting
« Reply #17 on: Jan 17th, 2004, 9:44pm » |
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aggie jokes?
are you a 12th man or a tea sipper?
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BlueMeanie
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Re: Long Time Sufferer - First Time Posting
« Reply #18 on: Jan 18th, 2004, 12:12am » |
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PF VIBES COMING YOUR WAY.
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ClusterChuck
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Re: Long Time Sufferer - First Time Posting
« Reply #19 on: Jan 18th, 2004, 12:22am » |
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Sorry you have to be here, but glad you found us!
Welcome aboard!
By the way, has anyone mentioned OXYGEN?
Heehee!!!!
Check out Oxygen!
Chuck
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bothofus
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Re: Long Time Sufferer - First Time Posting
« Reply #20 on: Jan 18th, 2004, 8:41am » |
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on Jan 17th, 2004, 9:44pm, Renee wrote:aggie jokes?
are you a 12th man or a tea sipper? |
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I'm neither, I just like aggie jokes. Short story here:
A few years ago while talking to customer service about having a doctor or dentist( I forget which) in the Bryan- College Station area , she stated she didn't know where that was. I tried to help by mentioning it was the home of the TX A&M Aggies. Silence there was. "You know, the aggie jokes." "No" was the reply.
I couldn't believe she had never heard an aggie joke!!!!!
I'll never forget that phone conversation.
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