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Topic: Hello, (Read 332 times) |
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Ronny
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Hi, i'm Ronny, live in Belgium (Brugge).
I'm Almost 42 and maried for 22 years now. I have 5 kids. The oldest is 20, the youngest: 12. I've had these HA for almost 7 years now but i only know for about 4 weeks what it is. All these years, i had attacks and was a bit afraid of going to a doc. With a pain like this, i was sure it was very, very bad. From this year on, the number of attacks increased and they became longer too. Until now, they dissapeared after one or two weeks. I have them for three months now, 3 per day, average time 90 minutes.I had no choice but going to a doc. The neuro gave me Verapamil and Imitrex, it works. Either it works or the cycle is running at his end. Anyway, i'm glad to have found this site. Its good to know you're not alone.
Kisses to you all and i hope you all have many PF time. 
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Jayne
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Re: Hello,
« Reply #1 on: Jul 11th, 2004, 6:16pm » |
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welcome Ronnie. I hate that you have to be here though.
Stick around and see if you can help others to get to the place that you are at now.
Love Jayne
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Kris_in_SJ
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Re: Hello,
« Reply #2 on: Jul 11th, 2004, 8:27pm » |
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Hi Ronny,
Sorry you have to be here, but glad you found us.
Verapamil and Imitrex injects have been my best response treatment also (a little Prednisone taper helps too).
Stick around. There's alot of support, and info, to be found on this site.
Hugs and good wishes,
Kris
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Ronny
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Re: Hello,
« Reply #3 on: Jul 12th, 2004, 1:09am » |
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Hi again,
What exactly is a Prednisone taper?
I read about taper but dont really understand it. 
Cya
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buckeyescooter
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Re: Hello,
« Reply #4 on: Jul 12th, 2004, 2:04am » |
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Prednisone is a steroid. It seems to work best when you start out at a high dose, usually somewhere between 60-80 mgs. Then over a period of time, you slowly go down in dosage. My Doc usually has me do it in 2-3 weeks, (the amount of time depends on your Dr., although I think anything longer than a month can be VERY dangerous.) Welcome to this most amazing website.
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miapet
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Re: Hello,
« Reply #5 on: Jul 12th, 2004, 2:22am » |
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Welcome! Sorry you had to find this place, but glad you did . . .it is nice to know you aren't alone . . . and know there is a place where people understand . . .Hope your cycle ends soon and you have relief.
*positive light and energy*
miapet
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Clusterbusters Rock
www.clusterbusters.com
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don
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Here is one example of a taper;
20 mg 3 times a day (60mg a day) for 7,
then go down to 2 a day for 2 days
then 1 a day for 2 days
then 1/2 a day for 2 days.
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Kris_in_SJ
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Re: Hello,
« Reply #7 on: Jul 12th, 2004, 8:21pm » |
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Some cluster sufferers get complete and total relief from CH with Prednisone. That's usually only temporary though, and when the Prednisone is tapered down, the HA's return. For me, when I start taking Verapamil, it takes a couple weeks to kick in. The Prednisone helps with the headaches until then, and the Imitrex helps for the ones you just can't avoid.
I call it my "Cluster Cocktail."
Here's hoping you're on the downswing - hugs and good wishes,
Kris
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Ronny
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Re: Hello,
« Reply #8 on: Jul 13th, 2004, 1:27am » |
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Hi,
Thanks to all of you, it's been a great help.
Special thanks to DJ for this great place to be.
Ronny.
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floridian
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You may want to cross the street and visit the Netherlands - check out www.clusterbusters.com and talk to some of the people here who have used this method. Also, oxygen has helped many people. Prednisone works for one episode, but odds are good that they will be back.
Ok - it's not just across the street, but its only a few inches on my map.
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Ronny
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Re: Hello,
« Reply #10 on: Jul 14th, 2004, 3:44pm » |
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Hehe, only a quarter of an inch from where i live. 
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Charlie
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Re: Hello,
« Reply #11 on: Jul 14th, 2004, 8:03pm » |
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Welcome to the madhouse and sorry you had reason to find us. Still, I hope you stick around here and there. Lots of good ideas and support here.
Here's one:
Dr. Wright’s Circulatory Technique
What follows is a technique learned from a neurologist:
I am not sure what mechanism is triggered by this but whatever it is, at least indirectly helps kill the pain. I do know that this technique has nothing to do with meditation, relaxation, or psychic ability. It is entirely physical and takes some work. It involves concentrating on trying to redirect a little circulation to the arms, hands, or legs. It can described as a conscious circulatory flexing. Increased circulation will result in a reddening and warming of the hands. Try to think of it as filling your hands with redirected blood. The important and difficult part is that it has to be done without interruption through the pain. Do not give up in frustration. It may not work on the first try. Every now and then it will work almost immediately. I lived for those moments. Try experimenting between attacks. You will find that it gets easier with practice.
I was given less than five minutes instruction in the use of method. The doctor, while placing his arm on his desk, showed me that he could slightly increase his arm and hand circulation. After several attempts, I was able to repeat this procedure and use it successfully. I have had about a 75% success rate shortening these attacks. My 20 minute attacks were often reduced to 10 minutes or less. Once proven that I had a chance to effectively deal with this horror, I always gave it a try as I had nothing to lose but pain.
Perhaps it will help if you think of it as trying to fill the arm as if it is were an empty vessel. I used to try to imagine I was pushing blood away from my head into my arm. Use your imagination. There is one man who wrote that his standing barefoot on a concrete floor shortened his attacks. This may be similar as it draws some circulation away from the head. Cold water, exercise, or anything affecting circulation, seems to be worth a try. My suggestion is to not let up immediately when the pain goes. Waiting a minute is probably a good idea. So long as you do not slack off, this has a chance of working.
This technique is very useful while waiting for medication to take effect or when none is available. It costs nothing, is non-invasive, and can be used just about anywhere. It is not a miracle but it helped me deal with this horror. It can be a bit exhausting but the success rate was good enough for me and a cluster headache sufferer will do just about anything to end the pain. It gives us a fighting chance.
I hope this technique is helpful and I wish you the best of luck
Charlie
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UN_SOLVED
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I need a fully-automatic Imitrex injector !!
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Re: Hello,
« Reply #12 on: Jul 18th, 2004, 9:48pm » |
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Welcome to the boards Ronny.
It seems to me that you are not very familiar with CH meds. If you ever need answers about CH meds or treatments, this is a great place to ask about them.
PF Wishes,
Unsolved
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Ronny
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Re: Hello,
« Reply #13 on: Jul 19th, 2004, 7:00am » |
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Hello,
Thanks for all your great reply's.
I still have a question about taper, i know now it involves steroids. But wat exatcly is a taper?
Can you eat it?
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don
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Taper, the sequel.........................
Quote:Here is one example of a taper;
20 mg 3 times a day (60mg a day) for 7,
then go down to 2 a day for 2 days
then 1 a day for 2 days
then 1/2 a day for 2 days.
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Ronny
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Re: Hello,
« Reply #15 on: Jul 19th, 2004, 2:24pm » |
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Haha, yes, i know but what does the word "taper" mean?
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UN_SOLVED
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I need a fully-automatic Imitrex injector !!
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Re: Hello,
« Reply #16 on: Jul 19th, 2004, 10:34pm » |
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"taper" means to 'gradually diminish'.
Once you start Prednisone (or other steriods), you MUST NOT stop taking it all at once. You have to gradually cut down on the dose so your body's immune system can 'catch back up' or 'replenish' itself.
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| « Last Edit: Jul 19th, 2004, 10:34pm by UN_SOLVED » |
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Ronny
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Re: Hello,
« Reply #17 on: Jul 20th, 2004, 12:19am » |
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Great,
Now i understand.
Thank you for your patience.
Ronny.
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