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Topic: Kudzu- starting a flame war (Read 5096 times) |
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pubgirl
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Why is it that generally speaking, people on here who give advice about CH treatment are careful to remember proper precautions about taking Verapamil and Triptans, but when it comes to alternative therapies such as Kudzu, they seem to be recommended without such care?
It looks very possible that we have now had TWO serious incidents in the UK where individuals have taken Kudzu in addition to their normal CH drugs (Triptans and Verapamil) both people have survived, and of course we don't know definitely what caused the problem, but Kudzu/drug interaction looks a very possible culprit.
Floridian's info states the risks, but I think anyone on here suggesting people try Kudzu should be aware that if they don't know the person's medical history and drug regime, they could be giving VERY dangerous advice.
I've said my piece, let the flaming begin 
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Marc
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Re: Kudzu- starting a flame war
« Reply #1 on: Apr 16th, 2005, 9:16pm » |
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Wendy,
What's the story on those two people? I have not heard about it.
Marc
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| « Last Edit: Apr 16th, 2005, 9:19pm by Marc » |
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KMT
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Re: Kudzu- starting a flame war
« Reply #2 on: Apr 16th, 2005, 9:18pm » |
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When I was advised to try it I talked to my Dr. first because I wanted to be safe. That would be my advise for anyone... 
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aka...................................................... KimY
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pubgirl
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Re: Kudzu- starting a flame war
« Reply #3 on: Apr 16th, 2005, 9:25pm » |
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Sorry Marc
I'm afraid it's not right for me to post their stories here, but 'generally' speaking it looks possible that two people who have taken Kudzu on top of Triptans and Verapamil, then developed sufficiently serious circulation problems to have emergency treatment.
I don't know what they took in total, but then no-one on an Internet site ever knows, that's my main point
We cannot feel responsible for what individuals do when they are desperate and in pain, but we CAN and should feel responsible enough to warn people of any risks we know of if we suggest they take something.
Wendy
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Marc
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Re: Kudzu- starting a flame war
« Reply #4 on: Apr 16th, 2005, 9:42pm » |
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Wendy,
Understood.
I certainly agree with the intent of your post. This is a good time to remind people to develop treatment plans in concert with their doctor.
I was just curious about the two cases in the UK because I'm taking 540mg of Verapamil and use Triptans to abort. I've seen no effect (positive or negative) with Kudzu at 5 times the recommended dosage.
Just because it wasn’t a problem for me, doesn’t mean someone else won’t die. It's all about making informed decisions.
Thanks,
Marc
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| « Last Edit: Apr 16th, 2005, 9:48pm by Marc » |
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don
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Re: Kudzu- starting a flame war
« Reply #5 on: Apr 16th, 2005, 10:00pm » |
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Quote:anyone on here suggesting people try Kudzu should be aware that if they don't know the person's medical history and drug regime, they could be giving VERY dangerous advice.
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AMEN TO THAT!
Post your own experiances and leave it at that.
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BikerBob
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Re: Kudzu- starting a flame war
« Reply #6 on: Apr 16th, 2005, 10:01pm » |
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on Apr 16th, 2005, 9:18pm, Kim Y. wrote:| When I was advised to try it I talked to my Dr. first because I wanted to be safe. That would be my advise for anyone... |
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I suspect that few, if any, doctors know the answer about drug interactions between kudzu and other meds.
Bob
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Marc
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Re: Kudzu- starting a flame war
« Reply #7 on: Apr 16th, 2005, 10:05pm » |
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Bob,
Yup, my Neuro wasn't willing to give me any input on shrooms either.
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nani
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Re: Kudzu- starting a flame war
« Reply #8 on: Apr 16th, 2005, 10:13pm » |
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Wendy, can you point out where someone has been given advice outright to use kudzu? When I pass on info about it I link the threads and advise people to read all the threads, all the way through, and pay careful attention to possible meds interactions. When someone new mentions that they are trying it, I often remind them to print out the info and show it to their drs and to read all the info about it. I don't want anyone trying it before they are fully informed.
That said, I'm sure glad I didn't wait for anyone's "approval" to try it, or for anyone else to try it tiptoe around their test results when asked how it worked for them. I'd still be suffering a great deal if I'd waited. Being 98% PF is the result I care about. Sharing what I've experienced so others can get a break comes in at a close second.
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| « Last Edit: Apr 16th, 2005, 10:26pm by nani » |
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Marc
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Re: Kudzu- starting a flame war
« Reply #9 on: Apr 16th, 2005, 10:33pm » |
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This is just a good time to remind people to work with their medical professional – nothing more, nothing less.
A lot of advice on this board is anecdotal in nature and difficult to verify scientifically. It is most certainly not sanctioned by the AMA People need to make their own, informed decisions.
Anyone want to disagree with that very simple concept?
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pubgirl
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Re: Kudzu- starting a flame war
« Reply #10 on: Apr 16th, 2005, 10:33pm » |
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Nani
I'm sure you have been careful but not all are.
Sorry, the direct "you should try Kudzu" wasn't on here, it was on another CH site, posted by someone who knew not one thing about the person they were advising. What is on here is mainly "you should read the Kudzu thread".
I don't regret posting this though. Dangers of Triptan overuse or mixing and verap without ECG's are well known (but still need reminders) I hadn't seen anyone posting about the possible dangers of Kudzu and after what I heard, I thought it was a wise move.
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nani
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Re: Kudzu- starting a flame war
« Reply #11 on: Apr 16th, 2005, 10:37pm » |
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on Apr 16th, 2005, 10:33pm, pubgirl wrote:
I don't regret posting this though. Dangers of Triptan overuse or mixing and verap without ECG's are well known (but still need reminders) I hadn't seen anyone posting about the possible dangers of Kudzu and after what I heard, I thought it was a wise move.
W the B
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I agree. Is there anyway we can get those folks to post here on the side effects thread, or get their permission for you to post it? I plan to add this thread to the locked kudzu topic. People need to be aware and informed before they try something. Will you keep us posted on their well being?
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pubgirl
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Re: Kudzu- starting a flame war
« Reply #12 on: Apr 16th, 2005, 10:46pm » |
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I'll try Nani, but I suspect they may be a bit embarassed.
We could at least lock a section of Floridian's page on Kudzu about the risks maybe ????
W the B
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nani
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Re: Kudzu- starting a flame war
« Reply #13 on: Apr 16th, 2005, 10:50pm » |
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Well...I just locked this thread to the What's all the kudzuuu? locked topic. On that thread, I also linked all the other kudzu related threads. Hopefully folks will read it all....
DO NOT USE KUDZU WITHOUT FULLY INFORMING YOURSELF!!!
Unfortunately, much is still unknown as it's still in beta testing. I don't think beta testing should not be so hard it hurts, though. 
Thanks for the info, Wendy.
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| « Last Edit: Apr 16th, 2005, 11:05pm by nani » |
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clarence
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Re: Kudzu- starting a flame war
« Reply #14 on: Apr 17th, 2005, 12:03am » |
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on Apr 16th, 2005, 8:24pm, pubgirl wrote:Why is it that generally speaking, people on here who give advice about CH treatment are careful to remember proper precautions about taking Verapamil and Triptans, but when it comes to alternative therapies such as Kudzu, they seem to be recommended without such care?
It looks very possible that we have now had TWO serious incidents in the UK where individuals have taken Kudzu in addition to their normal CH drugs (Triptans and Verapamil) both people have survived, and of course we don't know definitely what caused the problem, but Kudzu/drug interaction looks a very possible culprit.
Floridian's info states the risks, but I think anyone on here suggesting people try Kudzu should be aware that if they don't know the person's medical history and drug regime, they could be giving VERY dangerous advice.
I've said my piece, let the flaming begin
W the B
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Wendy,
While I am not sure that your post is am altogether fair characterization of the discussion going on here about Kudzu, I agree with the core issue of your post. In light of that, for myself, I will do my best to post responsibly about Kudzu, and apologize if I have been irresponsible here or elsewhere in the past. Irresponsibility in issues of medication can have serious consequences, and we should all keep that in mind. Thank you for the very important reminder.
Casey
btw - have I ever told you that your screen name is the best ever?
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| « Last Edit: Apr 17th, 2005, 12:05am by clarence » |
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pubgirl
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Re: Kudzu- starting a flame war
« Reply #15 on: Apr 17th, 2005, 4:38am » |
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Hi Casey
It wasn't a fair characterisation, I apologised for suggesting that it was here as I mistook where I had seen the "why don't you try Kudzu" and I certainly have never seen you post irresponsibly about it but equally although I'm not trying to "scare people off" either trying or suggesting it, without rereading every single post, my memory (which is shit as you probably gathered ) is that any the safety message about interactions was contained mainly in the mian link page.
In my time posting here, we have had a lot of alternative treatments suggested, almost none of which are any use. Now there is one which might be, but by its very nature (unless I have misunderstood the theory behind this) caution is perhaps more important than the others as it probably acts in very similar ways to drugs people are very likely to already be taking. This is probably why it is so much more promising than most other "alternatives" but it also probably means that any adverse events could be more serious.
This seems to me to make kudzu warnings on posts even more crucial.
Floridian's page says about the CH drug interactions "this raises real concerns" and it headlines them, but we know that so many people don't read links properly, but DO read threads.
If it were down to me (but I'm naturally conservative ) I would definitely want to be "clean" of other drugs which affect circulation and may be present in my body before I try it. I'm not even sure I would want to use 02 if I had already taken kudzu as I have no idea what effect that would have.
I know a listed side effect is dizziness, but on a personal level, if I were talking to someone who said they felt dizzy or weak after taking it, and they were already using triptans or Verapamil, I would now really worry. This side effect , in light of recent events might not be just a side effect at all, but a warning of something far more worrying.
but as I said, I'm very conservative
W the B
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| « Last Edit: Apr 17th, 2005, 6:05am by pubgirl » |
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clarence
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Re: Kudzu- starting a flame war
« Reply #16 on: Apr 17th, 2005, 9:13am » |
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Wendy,
I appreciate the fact that you are always very informed about medications, and that you bring a great deal of knowledge to the table. You genuinely care about people, and you work very hard to help them. Thank you.
I think your observations about Kudzu on this thread are important. I really have thought about it, and the issue is a serious one. Thank you for bringing it to my (our) attention.
Casey
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Jonny
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Re: Kudzu- starting a flame war
« Reply #17 on: Apr 17th, 2005, 9:29am » |
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Ok ok, it was me and I admit it...I have been telling the masses to smoke the kudzu while naked and Imitrex needles hanging out of their genitals and after the pee pee dance they are to call their doc and fart in the phone.
Please dont hate me just cause im touching myself as i type this....anyone wanna buy a keyboard?
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| « Last Edit: Apr 17th, 2005, 9:30am by Jonny » |
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It is up to YOU to educate yourself and then help your doctor plan your treatment. If you just sit down in front of your doctor and say "make me better" you are setting yourself up for a great deal of pain.
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clarence
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Re: Kudzu- starting a flame war
« Reply #18 on: Apr 17th, 2005, 9:36am » |
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on Apr 17th, 2005, 9:29am, Jonny wrote:Ok ok, it was me and I admit it...I have been telling the masses to smoke the kudzu while naked and Imitrex needles hanging out of their genitals and after the pee pee dance they are to call their doc and fart in the phone.
Please dont hate me just cause im touching myself as i type this....anyone wanna buy a keyboard? |
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That is so bizzare that I don't even know how to respond. And with those images firmly embedded in my head, I am off to church.
Casey
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Jonny
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Re: Kudzu- starting a flame war
« Reply #19 on: Apr 17th, 2005, 10:05am » |
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on Apr 17th, 2005, 9:36am, clarence wrote:
PRAY 
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It is up to YOU to educate yourself and then help your doctor plan your treatment. If you just sit down in front of your doctor and say "make me better" you are setting yourself up for a great deal of pain.
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nani
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Re: Kudzu- starting a flame war
« Reply #20 on: Apr 17th, 2005, 12:01pm » |
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on Apr 17th, 2005, 10:05am, Jonny wrote:
PRAY |
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 I'm afraid it's going to take more than prayer to get those images out of my head....
selective lobotomy, maybe?
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pubgirl
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Re: Kudzu- starting a flame war
« Reply #21 on: Apr 17th, 2005, 12:44pm » |
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Giovanni
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Re: Kudzu- starting a flame war
« Reply #22 on: Apr 17th, 2005, 3:31pm » |
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I wonder how many reactions/serious injury to our "normal" RX cluster medications are experienced and dismissed. Talk about dangerous prescriptions just look at a few of them.
Kudzu appears rather benign compared to a lot of them. Anytime one take anything, it should be researced by that individual.
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Margi
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Re: Kudzu- starting a flame war
« Reply #23 on: Apr 18th, 2005, 9:54am » |
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EXCELLENT advice, Wendy - a woman after my own heart! 
Although it is getting better here, in the early days of the kudzu trials, a lot of caution WAS thrown to the wind and we're very lucky someone wasn't put into a compromising medical condition by carelessly mixing triptans/verapamil with this stuff. I remember quite a few times, jumping into threads here to ask someone to be careful. We are NOT doctors here and we MUST encourage sufferers to discuss their treatment plans with their medical professionals BEFORE they add something new into the mix. If we've learned nothing else here, the fact remains that there is no cure for clusters. What works and is safe for one person (or a small group), could very well make cluster worse for the next person and, sadly, endanger their lives. THAT point must never get lost here.
and, one last thing. Marc - five TIMES the recommended dose of kudzu? WHILE you were taking 'trex AND verap? You know better than than, mister!! I'm so sorry you're having the need to use all these meds again/still. That must mean that the magnesium has quit working for you?
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Re: Kudzu- starting a flame war
« Reply #24 on: Apr 18th, 2005, 10:03am » |
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on Apr 17th, 2005, 9:29am, Jonny wrote:Ok ok, it was me and I admit it...I have been telling the masses to smoke the kudzu while naked and Imitrex needles hanging out of their genitals and after the pee pee dance they are to call their doc and fart in the phone.
Please dont hate me just cause im touching myself as i type this....anyone wanna buy a keyboard? |
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You forgot the part about sacrificing a chicken and spraying the blood in quasi-religious symbols all over the walls. This is the best part! (Well, except for farting in the phone...)
Seriously, though: I think nearly all of us have gone out of our way to err on the side of caution, and been wary of painting too rosy a picture of what kudzu may do for cluster headaches. We've all been more or less the guinea pigs for this stuff, and I haven't seen anyone pushing it as a cure, or telling someone to use it in lieu of what their physicians have recommended. The best evidence for kudzu has been anecdotal, and it's been understood (at least, I understood this) from day one, that it's a case of, "This has worked for me, and if you decide to try it, good luck. Discuss it with your doctor and be careful of possible drug interactions and/or side effects. Your mileage may vary."
If someone decides to go boosting their Verapamil dosages against their physician's advice and without monitoring their blood pressure, or becoming an Imitrex/Imigran junkie everytime they get the tiniest twinge, and persists in this against the advice of other sufferers and the advice of their physician, then there's not much anyone can do, and they are bound to have cardiovascular problems.
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| « Last Edit: Apr 18th, 2005, 10:08am by Jeepgun » |
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