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Topic: Kudzu busted my cluster, now what? (Read 564 times) |
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Leggs
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Kudzu busted my cluster, now what?
« on: Jul 5th, 2005, 10:04pm » |
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Well, cross my fingers, but so far so good with the kudzu which I can't hardly believe. I have had this horrid mystery pain AND clusters on and off since February. The CH were not that bad after March, but they did go on for a month instead of the usual couple weeks. BUT I was taking excedrin and advil daily. I didn't want to rot my guts, and with much help/urging from Ozzy and Nani, I went cold turkey on the excedrin and advil, and switched to kudzu. I had to do something, my July CH "2 week session" was coming up, and I had no neurologist or doctor to deal with trying to get meds.
Well, at first, I think totally going off the advil and excedrin, may have triggered the SERIOUS cluster. I call it a screaming, crying and drooling cluster. One of the top two I have had in my life was on Saturday.
Anyway, did the kudzu, I thought it was TOTALLY gone, had a great day day about two days later, it was like I was on stimulants or something, without the heart rate increase! Also, keep in mind, being off excedrin, I am totally caffiene free. Well, yesterday, the mystery pain was lurking, and some cluster signs, the eye, the congestion, were bugging me.
So now I am paranoid to go off. I CAN'T BELIEVE THE KUDZU IS WORKING???? It even seems to be nailing the mystery pain, the on fire feeling in my mouth, face, etc.
The thing that is really bizzare, my back and neck are KILLING me, from when I was in a car wreck in November. Also, you know that place on your skull, duh moment here, can't remember the specific anatomical name for it from anatomy, right at the back of it where it sticks out sort of, where the spinal cord goes in??? Well, in the car accident, the active head restraint, WACKED me in the back of the head so hard, like a hammer hit it, and THAT is hurting now that I am off the daily dose of advil.
So, now what should I do with the kudzu? Do you just keep taking it? Or try weaning off of it? I tell you one thing, I am keeping with my current method, one kudzu at 9am, one at 9pm until after I see the pain specialist next week. I AM TO SCARED TO SEE IF IT'S OKAY TO STOP KUDZU BEFORE I AM REFERRED TO THE NEW NEUROLOGIST! 
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nani
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Re: Kudzu busted my cluster, now what?
« Reply #1 on: Jul 5th, 2005, 10:36pm » |
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I'm glad you're getting some relief, T. 
Being chronic, I can't help much as far as info on tapering goes. Perhaps an episodic can jump in and help. I'm guessing that you'll want to stay on it as long as your episode would normally last.
Sorry about your other pain. Hopefully the pain dr can really help you with it. Keep us posted.... ~nani
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vig
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Re: Kudzu busted my cluster, now what?
« Reply #2 on: Jul 6th, 2005, 10:10am » |
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pretty cool, isn't it?!
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Leggs
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Re: Kudzu busted my cluster, now what?
« Reply #3 on: Jul 6th, 2005, 11:28am » |
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Man, like someone from Alabama said, that stuff is EVERYWHERE in Georgia. I croak spending $16 a bottle when it's taking over the woods.
I say we get a bunch of us together and go on a safari to harvest it and start our own manufacturing plant, with part of the procedes going to cluster headache research!!!!
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ozzy
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Re: Kudzu busted my cluster, now what?
« Reply #4 on: Jul 6th, 2005, 2:23pm » |
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Glad you've found relief. It IS amazing. As far as tapering...listen to your body. Don't stop cold turkey on this.
It is anybody's guess on how soon to taper off. If it was me, and mind you (and anyone else reading) I am not a doctor, so for me if I was episodic....I would wait 5 days of complete and total PF time, then reduce the dose slightly. If the current dose is = three times a day, take only two. Wait 5 days and see what happens. Tolerate some mild discomfort, ie shadows, when they go away, taper down to 1. On the contrary if after tapering down, activity resumes in full force for a day or two, I would go back to full dose and wait a while.
When you go to your Neurologist, print all the information you can, particularly the research abstratcs from floridians "med-owl" page and discuss it. This may not only help you but other sufferers as well.
Good luck and congratulations.
Ozzy
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vig
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Re: Kudzu busted my cluster, now what?
« Reply #5 on: Jul 6th, 2005, 2:44pm » |
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sage advice from Ozzy...
heed it.
and congratulations
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Leggs
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Re: Kudzu busted my cluster, now what?
« Reply #6 on: Jul 6th, 2005, 2:56pm » |
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Well, I don't think I am in a hurry to taper off yet. You know how us episodics are like clockwork, when there are some weird things going on that are like clockwork too...
I had the kip 10 drooling screamer on Saturday, then Sunday was like I was a new person, then Monday, I was sort of out of it, then yesterday, I was was tornado cleaning the house all day, then today, I am feeling a little out of it. Mind you, the CLUSTERS are totally gone, but I am feeling pain in the back of my head, and some of the burning like stuff in my mouth. THAT mess, what ever it is, is TERRRIBLE. I certainly want to keep it at bay also.
Kind of weird how I am just not totally free, and like Ozzy said elsewhere, I am hoping there is maybe a build up effect.
Are there side effects to staying on it very long? Could it be worse than rotting your liver with excedrin, or your guts with ibuprofen? 
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ozzy
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Re: Kudzu busted my cluster, now what?
« Reply #7 on: Jul 6th, 2005, 4:30pm » |
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Long term side effects ... none that I am aware of. I'll let you know. I have been on kudzu for 5 months now, with no side effects. As far as "rotting the liver" as a matter of fact Kudzu is sold also as a "liver tonic" (No hangoveres for me, yes I can drink again... in moderation of course...)
Keep ups aup to date.
Ozzy
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seasonalboomer
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Re: Kudzu busted my cluster, now what?
« Reply #8 on: Jul 6th, 2005, 4:38pm » |
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As there are no major side effects (except for the few instances mentioned on the kudzu thread) there needn't be a hurry to get off. Your body and mind will tell you when you have the confidence that you are out of cycle to taper off. Good luck and like vig said, "isn't it cool?"
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Leggs
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Re: Kudzu busted my cluster, now what?
« Reply #9 on: Jul 7th, 2005, 8:11am » |
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You won't see me getting off anytime soon.
Something kind of weird happened at my famous 2:30 am cluster time...I woke up with all the signs of cluster, the nose, the eye, etc, but NO PAIN. The beast is hiding in there somewhere. Can't wait to list my 1 week info after today on the kudzu survey....
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ozzy
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Re: Kudzu busted my cluster, now what?
« Reply #10 on: Jul 7th, 2005, 10:00am » |
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I remember those wake up calls with no pain, fun ain't it?
You are making good progress, I am very happy for you.
Ozzy
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nani
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Re: Kudzu busted my cluster, now what?
« Reply #11 on: Jul 7th, 2005, 10:33pm » |
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Good for you, T. I call those things "phantom hits". I'll take those any day.
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TxBasslady
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Re: Kudzu busted my cluster, now what?
« Reply #12 on: Jul 13th, 2005, 3:04am » |
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I've been taking it for 5 months. I had a few CH's when I first started on it....then I would have the signs of a CH, but no pain.
I have not attempted to taper, and still take the same dose I started with.
I'm no doc either....but this has been a miracle drug for me.
PF vibes.....good luck,
Jean
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