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Topic: Hello from Music City..... (Read 317 times) |
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JB1
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Hello from Music City.....
« on: Jan 14th, 2008, 10:30am » |
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I found this site in Dec. as my 2nd episodic bout of CH was going full bore and decided it was time to join and say hello as well as THANK YOU!
I'm a 55 year old male and had my first bout of CH five years ago. It lasted four months and scared the hell out of me. I won't try to describe the pain, since as another member pointed out, it's relevant only to the person experiencing it.
After the first episode, I was pain free as before for 5 years. Then in late Nov it returned (same time of year as the last). When I found this site and read all the info and mesages I could find I went to my doctor and came up with a treatment program that seems to have ended the cycle.
It is Frova and Lyrica twice a day for three days. It took three rounds of this to work over a two week period, but I have been pain free (with the exception of a mild (to me) sinus ache) for the last two weeks.
I hope this might help at least one other person!
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LeLimey
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OUCH-US - Less "ME" and more "WE"
 
 
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Re: Hello from Music City.....
« Reply #1 on: Jan 14th, 2008, 10:46am » |
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Hello JB
I'm glad you've found something that works for you!
Am I right in reading it took two weeks for this to kick in or do you mean it took three days for it to kick in?
If the first is the case have you considered a prednisone taper while you're waiting for the other meds to kick in?
Whether you do that or not depends on how long your cycle usually lasts too of course as pred is a pretty nasty drug and a definite double edged sword with CH. Do they usually last four months like the first one?
Have you ever tried O2? That is an absolute life saver as an abortive and no side effects!
I'm glad you have found us anyway!
Helen
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rocketman3104
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Fightin'em off, one at a time
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Re: Hello from Music City.....
« Reply #2 on: Jan 14th, 2008, 10:56am » |
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Welcome to the site. O2 is my first line. Glad you're here.
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Paul
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JB1
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I love YaBB 1G - SP1!
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Re: Hello from Music City.....
« Reply #3 on: Jan 14th, 2008, 11:00am » |
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Hi, Helen
I took the first dosage in the afternoon and had no pain that night or for the three days of the first round. I had rough nights for the 3 days I had to lay off. No pain during the second round and only one bad night during the three days off. No pain except for the sinus ache after the third round.
Haven't tried the prednizone and hope I don't have to.
The first did last 4 months and I was into the second month of this cycle when I started this treatment.
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LeLimey
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Re: Hello from Music City.....
« Reply #4 on: Jan 14th, 2008, 11:16am » |
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I hope you don't need the pred either - I feel honour bound to tell people about it but I would personally never use it again myself. Thats the thing though, give people the info and let them discuss it with their own docs!!
How often do you repeat your 3 day cycle? Is it 3 days on X days off or as needed?
I find frova incredibly useful as a preventative (too slow as an abortive) but - if I take it for more than two days in a row it kicks back with a vengeance. I've learned the hard way not to overuse it. Having said that I know other's who've used it daily for three-five weeks with no problems. We all differ.
I would definitely recommend you read up about O2 though and also high energy drinks/coffee and heat or ice as useful emergency abortives too. We can never have too many weapons sadly!
Helen
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JB1
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Re: Hello from Music City.....
« Reply #5 on: Jan 14th, 2008, 11:30am » |
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Did 3 days on, 3 days off, 3 times. The frova does have a kickback as the blood vessels get used to it, hence taking the break.
Read about 02, but haven't tried it.
Done the heat/ice together and seperatly during bouts along with speed walking, headbanging and crying/screaming.
I have been a coffeeaholic most of my adult life.
From all I've read, I think of myself as one of the lucky ones. This is only my second episode ever. The first came whe I was 50, lasted 4 months then went away. The next came at 55, this past November. I can only imagine having to go thru this every year, month or God forbid day.
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LeLimey
CH.com Alumnus
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Re: Hello from Music City.....
« Reply #6 on: Jan 14th, 2008, 11:39am » |
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You know it's funny - episodics and chronics both fins the idea of living in the other person's shoes terrifying.
I'm chronic and I find the idea of sitting and waiting for them to return terrifying and you're saying the opposite and we've had this debate here many times!
I have a child with CH too and he is episodic. I know what it is to fear his cycles and to get my hopes up when, like this year, it was late... In a strange way I see both sides. If I had the choice of "curing" one of us though it would be him in a heartbeat.
The best "med" I've found is the support and understanding here. Believe me when I say it means more than all the imitrex in the world!
That being said: Welcome to the family 
If you wake with a horses head on the pillow relax, it's only Chewy. Just watch your feet as you get out of bed as where ever he goes the circus-ankle-biting-midgets go too and that can be a nsaty wake up call 
Helen
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