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Topic: Kudzu- starting a flame war (Read 5112 times) |
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nani
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Got kudzu?
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Re: Kudzu- starting a flame war
« Reply #50 on: Apr 18th, 2005, 6:21pm » |
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Thanks, Ruthie... 
Let's give the real credit where it's due...
Thanks Floridian!!! If it hadn't been for him, I wouldn't have known that there even was such a thing.
You're my hero, Flo! 
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Others may come and go, but MY power is MINE.
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Flash
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Re: Kudzu- starting a flame war
« Reply #51 on: Apr 19th, 2005, 6:22am » |
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on Apr 18th, 2005, 12:12pm, Bob P wrote:
When it comes to cluster pain, we are willing to risk those things? |
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There is a misconception that medications of any sort will make things better at least slightly. IMO in the case of CH the opposite is closer to the truth.
People need to learn that the detoxed state is one of the top 3 ways to reduce the level of pain cause by CH. It just takes around 1 week to get there. Shrooms aside everything else I took made it worse, and the more I took the worse it got.
If someone's going to embark on the Zu then they should detox off everything else first and give it a chance. Oh and stay off everything else while they are taking it too.
Also the Zu is not the most dangerous drug here. The way this thread is phrased ever so slightly tilts the balance of blame on the Zu. In reality having trex in the mixture had an awful lot to do with this.
I'd like to see someone cough up a pain diary before, during, and after using trex for a few weeks. It seems to me that although trex can abort an attack that it adds many more and more painful attacks to the mix, and that on balance people using it are MUCH worse off both in quality of life and financially but too scared to quit. Only crack and heroin take more money and inflict more misery!
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pubgirl
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Re: Kudzu- starting a flame war
« Reply #52 on: Apr 19th, 2005, 6:53am » |
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Flash
I think I must be unwell because I think I agree with you 
(apart from perhaps the last sentence, which is more than arguable  )
Wish I could say that I think 02 is the answer, but currently I don't think it is either.
W
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Bob P
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Shut up Bob!
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Re: Kudzu- starting a flame war
« Reply #53 on: Apr 19th, 2005, 7:04am » |
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For me, trex sucks. I was cruising along last week in a semi-normal cluster state (around 3 attacks/day). On Thursday I switched from cafergot to trex tabs. On Friday I got hit 7 times. Switched back to cafergot and added melatonin and things settled right down. Same thing happened last cluster with the trex jabs. Now, the other triptans don't do that to me, only trex.
For me, cafergot and O2 is a LOT less painful than nothing. I'll take a 10 minute Kip3 over a 2 hour Kip10 anyday.
Today I'm loving prednisone because no attacks are much better than unmedicated attacks.
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pattik
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Re: Kudzu- starting a flame war
« Reply #54 on: Apr 19th, 2005, 8:44am » |
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on Apr 19th, 2005, 6:22am, Flash wrote:
It seems to me that although trex can abort an attack that it adds many more and more painful attacks to the mix, and that on balance people using it are MUCH worse off both in quality of life and financially but too scared to quit. |
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Based on my experience, I would have to agree. Due to the cost, I haven't used trex for a few years, and I also haven't experienced the associated rebounds and extended cycles. Since O2 is all I use, I will try Kudzu next time around and give it a fair shot.
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LadyLuv
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Re: Kudzu- starting a flame war
« Reply #55 on: Apr 19th, 2005, 5:08pm » |
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 Thanks Floridian!!! YOU'RE MY HERO ALSO..... 
But my Thanks is still extented to you Nani for all your added links, and most of all personal support. Just like Jackie & Texasbasslady, you have a way of making people feel that they have climbed a mountain, when they only went half way up a hill.
Peace & Blessings
Lady Luv
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floridian
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Re: Kudzu- starting a flame war
« Reply #56 on: Apr 19th, 2005, 7:09pm » |
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I am extremely sorry to hear about the two people that collapsed, and hope they are doing well. Did kudzu play a role? Quite possibly - we don't know, but it should be considered, especially since there were two cases. Was it kudzu alone, or an interaction with the other meds?? We don't know but taking more meds increases the risks of a bad reaction. Triptans and verapamil each have known risks - and adding a third ingredient only complicates things.
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jokrs2
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Eventually He will make us pain free!
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Re: Kudzu- starting a flame war
« Reply #57 on: Apr 19th, 2005, 11:14pm » |
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As for me I will tip my hat to Flo & Nani for the info and the support. I also agree with Flash. The more I took Imitrex the worse the rebound ha's became, (same with opioids). It was only after detoxing off "ALL" other medications and giving Kudzu a fair chance did I realize that it was the best option for me....not perfect.... but alot better. You are all so wonderful, it's not hard to get choked up while I'm typing this. Thank you beyond measure. Joe
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Lizzie2
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Re: Kudzu- starting a flame war
« Reply #58 on: Apr 20th, 2005, 5:21pm » |
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Well not to be a downer, but you can now add my story to the list of major emergencies after starting Kudzu. The docs spent a lot of time working to figure it out, and that's the conclusion they came to. I shouldn't have taken it.
After thinking I was going to bleed to death (or choke to death on my own blood) in the ER and then having surgery last night plus all the other crap, they've told me no more Kudzu.
<sigh>
Another one bites the dust.
Please be careful.
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godsjoy777
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Re: Kudzu- starting a flame war
« Reply #59 on: Apr 22nd, 2005, 1:53pm » |
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I am off the Triptans as well....good by and good riddance.......I was using Maxalt and getting soooooo many rebounds .....Oh my God....
I got off them and now have plenty of O2 around for any hits.....and I am taking Kudzu.....I haven't yet gotten off the Zonegran....I am a little afraid to...as it is an anti-epileptic drug....and the caution is kind of scary.....I haven't seen my Neuro in awhile...kinda pissed at him.....like I am all the drug companies and insurance companies and their schemes.....Are they all in bed together? I know you should slowly get off....but how slowly? Anyone want to tell me? I am only on the Zonegran as a prevent....not because I have epilepsy....(unless you consider these clusters a form of that)...
Would the Zonegran make the cycle last so long? I have been taking it now for about a year and a half.
Blessings,
Karen
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nani
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Got kudzu?
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Re: Kudzu- starting a flame war
« Reply #60 on: Apr 22nd, 2005, 2:53pm » |
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I'm glad the kudzu is working pretty well for you, Karen. I still take Neurontin (also an anti seizure drg) as a prevent. I've cut down from 1800 mgs a day to 300 mgs a day. I'm not hurrying completely off as I still get shadows now and then and an occasional "bad" day. (Still nothing compared to before)
I tapered off very slowly. I cut 300 mgs a day each week. So week one: 1500 mgs a day Week2: 1200 mgs a day, etc.
I haven't had any difficulties at all.
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clarence
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Re: Kudzu- starting a flame war
« Reply #61 on: Apr 22nd, 2005, 5:10pm » |
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on Apr 20th, 2005, 5:21pm, Lizzie2 wrote:Well not to be a downer, but you can now add my story to the list of major emergencies after starting Kudzu. The docs spent a lot of time working to figure it out, and that's the conclusion they came to. I shouldn't have taken it.
After thinking I was going to bleed to death (or choke to death on my own blood) in the ER and then having surgery last night plus all the other crap, they've told me no more Kudzu.
<sigh>
Another one bites the dust.
Please be careful. |
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Carrie,
I am really sorry that you ahd such a horrible experience. I just have a quick question. I remember you posting before taking Kudzu that you spoke to your doc about it and he or she did an internet search, and gave you the ok to try it. Is that correct?
If so, I think that it goes to show again that we really don't know all that much about this, and that even with doctor approval it is a risk.
I am so sorry that that happened to you Carrie. It really does make me sad that so many painful things happen to such a wonderful person.
Casey
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Lizzie2
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Re: Kudzu- starting a flame war
« Reply #62 on: Apr 22nd, 2005, 6:22pm » |
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on Apr 22nd, 2005, 5:10pm, clarence wrote:
Carrie,
I am really sorry that you ahd such a horrible experience. I just have a quick question. I remember you posting before taking Kudzu that you spoke to your doc about it and he or she did an internet search, and gave you the ok to try it. Is that correct?
If so, I think that it goes to show again that we really don't know all that much about this, and that even with doctor approval it is a risk.
I am so sorry that that happened to you Carrie. It really does make me sad that so many painful things happen to such a wonderful person.
Casey |
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Thanks Casey,
Yes you are correct that my neuro did read up on it and give me the green flag.
Check your PM's...I wrote you more there.
Carrie
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godsjoy777
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Re: Kudzu- starting a flame war
« Reply #63 on: Apr 23rd, 2005, 1:59pm » |
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Thanks Nani....
I'm off Kudzu for a few days before endo surgery....only one drug/suppliment at a time...  . My dentist has people get off blood thinners about 5 to 7 days before dental appointment, so I figure 4 to 5 days off of Kudzu should be ok for the Endodontist.....I'll inform her Monday morning right before the proceedure and if she wants to reschedule she can.....but we'll see.
The next thing will be the Zonegran I think.......I'll try to gradually get down on that....Have been pretty pain free for a few days....THANK GOD!....Just Friday was half day of shadows....could be the weather changes.
Blessings,
Karen
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