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Topic: Kudzu- starting a flame war (Read 5113 times) |
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pubgirl
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Re: Kudzu- starting a flame war
« Reply #25 on: Apr 18th, 2005, 10:25am » |
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on Apr 18th, 2005, 10:03am, Frank_W wrote:
I haven't seen anyone pushing it as a cure, or telling someone to use it in lieu of what their physicians have recommended.
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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So would you consider it OK Frank if someone on here said "So, have you given kudzu a try? " to someone they know has had an abnormal ECG and who has been told not to take Verapamil?
Wendy
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Lizzie2
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Re: Kudzu- starting a flame war
« Reply #26 on: Apr 18th, 2005, 10:28am » |
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on Apr 17th, 2005, 3:31pm, Giovanni wrote: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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That's an equally as important point as Wendy's is. I asked my doctor about Kudzu, and he looked it up while I was in the office and gave me his own opinion about any potential risks. Ordinarily I've been absolutely against taking herbs for anything...just who I am...but I figured I'd try the Kudzu. I haven't written on it yet, but I do have some questions for others taking it to see if they've experienced any similar things or know anything about certain actions.
That being said, I regret years of taking meds that have done permanent damage to me. I have to stay on Nexium permanently due to depakote, have some very major memory/concentration problems even though I've been off topamax for some time, and every day I fight with what they refer to as "extra-pyramidal symptoms" from taking certain categories of meds. Some of the stranger bouts of confusion and other things that I've experienced lately have been linked to meds, and some have not.
Had I known then what I know now about some of this stuff, I definitely would have thought twice...
Live and learn...and hope you live while learning. There's been a couple times where I almost didn't. 
L2
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seasonalboomer
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Re: Kudzu- starting a flame war
« Reply #27 on: Apr 18th, 2005, 10:28am » |
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Okay, so after slamming everybody for recklessly hyping all kinds of natural remedies like Kudzu, it is now your opinion that the folks on this site are mostly pretty responsible.
Hmmmm...... Did you read the thread on Kudzu before surmising that we were all crazed Kudzu lovers? I was a participant on that thread and certainly a guarded cheerleader of its use. Looking at the thread I thought it was pretty balanced and does give only guarded advice.
For a web forum, I actually thought the recommendations were amazingly careful and the data being collected, surprisingly thorough. A thorough reader would actually have seen that not only have seen that there were recommendations for care about potential side effects when mixing with other drugs, but, that its effectiveness seems compromised by such use with other medications.
The purpose of a web forum is to share anectdotal information about experiences. Whether that is how to tune up a 65 Mustang, or tune up a 45 year old hypothalamus, it is a web forum. Should we all have to have a 3 paragraph set of legal language at the bottom of our posts so that readers are led to a set of terms and conditions for usage of the advice?
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pubgirl
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Re: Kudzu- starting a flame war
« Reply #28 on: Apr 18th, 2005, 10:42am » |
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No "boomer", I don't think that at all
I stand by what I say that most people give advice on here as carefully and as well as they can but I think it is sad that I get stick for raising a flag to say "let's be careful with this"
Would you like to answer my question to Frank instead?
I refuse to apologise for questioning the suggestion that people take Kudzu when we already know they have been told not to take Verap and have dodgy ECG's  .
Wendy
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Jeepgun
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Re: Kudzu- starting a flame war
« Reply #29 on: Apr 18th, 2005, 10:45am » |
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on Apr 18th, 2005, 10:25am, pubgirl wrote:| So would you consider it OK Frank if someone on here said "So, have you given kudzu a try? " to someone they know has had an abnormal ECG and who has been told not to take Verapamil? |
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My advice would be, as it nearly always is: Check with your doctor.
So are you going to actually relate some factual information, Wendy? So far, the asperations you're casting are quite disturbing. Until then, it's all hypothetical and meaningless, isn't it?
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pubgirl
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Re: Kudzu- starting a flame war
« Reply #30 on: Apr 18th, 2005, 10:51am » |
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on Apr 18th, 2005, 10:45am, Frank_W wrote:
My advice would be, as it nearly always is: Check with your doctor.
So are you going to actually relate some factual information, Wendy? So far, the asperations you're casting are quite disturbing. Until then, it's all hypothetical and meaningless, isn't it?
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Do a search on your own recent posts Frank
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Lizzie2
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Re: Kudzu- starting a flame war
« Reply #31 on: Apr 18th, 2005, 10:59am » |
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First of all, people with unstable ECG's on verap...well, it's not all that common. However, it can throw someone into 2nd degree heart block, which is BAD, and therefore the reason why doctors have patients get an ECG every time their dose goes over 480mg on verapamil. If they don't, then they should.
A golden rule to keep in mind: Any antidysrhythmic is also a PROdysrhythmic. In plain speak, anything designed to set the heart back straight after it does a funky rhythm can also cause other funky rhythms at certain doses and in certain mixes of people.
Now, I haven't read thoroughly through everything on Kudzu, but I believe the action is with 5HTP. I think the interaction with verapamil is that it can possibly cause someone to have a lower blood pressure with the combination.
From what I've personally read, I don't see any connection with Kudzu and dysrhythmias, but of course, it's an herb and not enough is known yet.
I would be wary of the potential interaction between triptans, DHE, ergotamines, Kudzu, 5HTP, and select antidepressants because of the use of 5-HTP receptors, but Floridian would know more about that than I would...and I don't have a website or a book open at the moment as I'm writing this...so take it for what it's worth!
The important lesson is that, yes it appears to be a wonderful option to try, but I'd always at least call the doc and run it by him/her first. Every person is different. What works for one, can be harmful to another...and we cannot know that in this setting.
It doesn't hurt to make positive suggestions or ideas, but it always needs to be followed with: Do not try this without calling your doctor!
You don't want to be persecuted for medical fraud 
Hugz,
Lizzie 
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Re: Kudzu- starting a flame war
« Reply #32 on: Apr 18th, 2005, 11:03am » |
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I think everyone who is getting themselves up in arms needs to sit back and toke one. (figuratively of course )
Wendy brought up a valid point, related that the case to which she was referring occurred on another site, apologized for any finger pointing at the members of this site, and has given as much information about the two cases as she can without compromising a confidentiality.
As far as I'm concerned she need not apologize for reminding everyone to be careful of taking meds or of recommending meds for others.
No matter how careful we think we are, it never hurts to have a reminder posted now and then. We only know of what is seen in the boards - not what is sent privately via e-mail and PM or who is doing the sending. I have raised this flag in the past as have several other people. Take it in the spirit it was intended and let the other stuff go.
We have enough to deal with fighting this stupid disease without fighting amongst ourselves to boot.
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Jeepgun
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Re: Kudzu- starting a flame war
« Reply #33 on: Apr 18th, 2005, 11:06am » |
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on Apr 18th, 2005, 10:51am, pubgirl wrote:
Do a search on your own recent posts Frank |
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Wendy, I asked if she had tried kudzu, but examine the post(s) in question on the thread that she started: It was in context with cutting BACK on the Imigran AND with following her physician's advised dosage on the Verapamil. I asked if she'd tried it. It wasn't a recommendation, and if she's unwilling to listen to her doctor, why would she listen to anything I said, anyway? *shrug*
Your ire is misplaced, madam.
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| « Last Edit: Apr 18th, 2005, 11:10am by Jeepgun » |
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seasonalboomer
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Re: Kudzu- starting a flame war
« Reply #34 on: Apr 18th, 2005, 11:17am » |
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I don't about getting up in arms. Wendy asked for flame mail. That's all I could muster.
I agree, everyone should look into what is being recommended. But, my main point was that this was not a case where giddiness prevailed. there was lots of solid info on that thread.
As for the criticism of, "maybe you should check out Kudzu." Come on? Are we living in a Nanny state here? I've also seen recommendations for the correct placement of the barrel of a gun on the web in one's mouth. Get real.... Give people some credit for having common sense.
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pubgirl
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Re: Kudzu- starting a flame war
« Reply #35 on: Apr 18th, 2005, 11:30am » |
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Guys, we'll have to agree to disagree, I think it was ill advised in the circumstances, you think it was fine.
I don't think we will find common ground on this one 
W the B
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Jeepgun
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Re: Kudzu- starting a flame war
« Reply #36 on: Apr 18th, 2005, 11:36am » |
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For my part, I will be more conscientious of what I say and how I say it, in the future.
Peace,
-Frank
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pubgirl
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Re: Kudzu- starting a flame war
« Reply #37 on: Apr 18th, 2005, 11:38am » |
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Just seen your other reply
Peace to you too
W the B
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Flash
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Re: Kudzu- starting a flame war
« Reply #38 on: Apr 18th, 2005, 11:57am » |
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People that persist in mixing meds are also seeking nomination for Darwin Awards.
Let's look at it in simple terms. Assume someone has an upset stomach. They may choose to try an OTC remedies. Fair enough.
BUT some less intelligent people (known as numptys) might just go and buy every single OTC remedy plus what ever they read in last week Readers Digest, and OF COURSE the Internet, and shovel them all into their stomach at once. Here's what'll happen:
A) The numpty will feel unwell and possible barfy.
B) The numpty may experience stomach pain or cramps.
C) The numpty may experience serious complications and death.
And the moral of the story is???
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| « Last Edit: Apr 18th, 2005, 11:58am by Flash » |
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Bob P
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Re: Kudzu- starting a flame war
« Reply #39 on: Apr 18th, 2005, 12:12pm » |
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Quote:A) The numpty will feel unwell and possible barfy.
B) The numpty may experience stomach pain or cramps.
C) The numpty may experience serious complications and death.
And the moral of the story is??? |
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When it comes to cluster pain, we are willing to risk those things?
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pubgirl
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Re: Kudzu- starting a flame war
« Reply #40 on: Apr 18th, 2005, 12:31pm » |
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Took the words right out of my mouth Bob!
People here don't have tummy aches, they are often scared and desperate and often really clueless about what the drugs they are taking do. We can all become "numpties" in those circumstances.
My moral of the story stays the same, we need to be careful what we say as our words become very powerful when people are desperate.
W the B
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Re: Kudzu- starting a flame war
« Reply #41 on: Apr 18th, 2005, 12:32pm » |
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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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Very valid point. And exactly WHY no one at any of the cluster websites has the right to play doctor and give anyone the go ahead to try something new or untested. The "mystery of the internet" is a huge influencing factor here, as well. we have no way of knowing:
a. the sufferer's medical history or underlying conditions
b. the meds they are REALLY taking
c. if the poster is, indeed, suffering from cluster headaches or has been misdiagnosed (VERY common)
d. if the poster is even seeing a doctor.
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seasonalboomer
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Re: Kudzu- starting a flame war
« Reply #42 on: Apr 18th, 2005, 1:26pm » |
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I really want to argue with you guys on all of this, I just can't figure out anything disagreable in what ANYONE is saying. There's just something about the conversation that is getting on my nerves though. Kind of like a heated discussion whether to use a nine iron or a pitching wedge. (Sorry for the sports metaphor).
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Re: Kudzu- starting a flame war
« Reply #43 on: Apr 18th, 2005, 2:05pm » |
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From the front door:
Quote:| DISCLAIMER: All information contained on this web site is for informational purposes only. It is in no way intended to be used as a replacement for professional medical treatment. clusterheadaches.com makes no claims as to the scientific/clinical validity of the information on this site OR to that of the information linked to from this site. All information taken from the internet should be discussed with a medical professional! |
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From the new visitors page:
Quote:Looking for a diagnosis?
So, what if you don't know if you have clusters or know you don't but don't know what you do have? Great, see the above paragraph. We DON'T diagnose or prescribe, but collectively we have lots of knowledge and experience. If you aren't a clusterhead, we sincerely want to help you find a site that can help you with your situation. So give us all the same details and/or refer to the cluster quiz, cluster traits, and links page. |
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I still say the occassional reminder to be careful of how we reccommend things is appropriate, but there will always be a subset of any population that will ignore warnings and disclaimers and jump without looking where they may land. While disclaimers and warnings are a definite necessity in this day and age, if we spend too much time trying to make this an idiot proof world - NO useful information would be presented, because by the very nature of our disease, the meds and other treatments are or can be extremely dangerous.
In all fairness to the kudzu crew, it was stated and understood from the beginning that this was experimental at best. There were many warnings about possible interactions and more updates and warnings as new information became available.
The information about the herb was presented, people decided to try it and it bloomed into a hugely and unexpectedly successful option for a lot of people.
People tend to get very excited about things that work to ease their suffering and want to share the good news, but overall most are careful to temper their posts with disclaimers that the treatment they are talking about is merely what worked for them or that people should check with their doctor about such and such.
I hope that #1. the two people who have suffered a collapse will completely recover and #2. they will share with us what exactly went wrong and what caused it.
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pubgirl
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Re: Kudzu- starting a flame war
« Reply #44 on: Apr 18th, 2005, 2:32pm » |
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Gator
That is what I hope, as we can all learn from it. One of them is a migrainer though so I don't think they'd dare
W
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seasonalboomer
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Re: Kudzu- starting a flame war
« Reply #45 on: Apr 18th, 2005, 2:38pm » |
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My new disclaimer:
The information I just posted may be full of inaccuracies. I've been known to post in a state of giddiness which contributes to my inability to accurately and truthfully interpret or represent information which may or may not be useful to others. And, should you read my post, the poster denies any responsibility for actions taken by postee which may, or may not have been derived from information supplied in said post.
Postings made represent the ill-informed opinion of the poster only and do not represent the opinions or views of those who are smarter than the poster, and certainly can not be considered as sound medical advice. The poster would prefer all postings be considered the mad rantings of a lunatic and regarded as such.
Best regards
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Jeepgun
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Re: Kudzu- starting a flame war
« Reply #46 on: Apr 18th, 2005, 3:04pm » |
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I don't have a disclaimer. I'm done offering help.
See ya' on the General Board. L8r.
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Re: Kudzu- starting a flame war
« Reply #47 on: Apr 18th, 2005, 4:50pm » |
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on Apr 18th, 2005, 3:04pm, Frank_W wrote:I don't have a disclaimer. I'm done offering help.
See ya' on the General Board. L8r. |
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Bob P
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Re: Kudzu- starting a flame war
« Reply #48 on: Apr 18th, 2005, 5:29pm » |
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I say you should take medications as directed by your physcian and send all your opiates to me!
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Re: Kudzu- starting a flame war
« Reply #49 on: Apr 18th, 2005, 6:10pm » |
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I say a Prayer for any one that hurt.. .. For I know first hand what pain is ... I also say a Prayer for those that may have tried a medication, herbal, prescription, otc or what ever and it causes a reaction that may cause them harm in any way...
Prior to trying any medication one should check with ones physician, because as we know, even OTC medications can cause bad reactions when mixed with certain other medications.
But I thank God and Nani for the heads up on Kudzu.. I have gone several weeks with only 2 hits and it was only a 5-6, compaired to a normal 9-10. Yes, I've had shadows, but I can live with shadows, I don't wish I was dead with shadows, I don't cry with shadows and I don't have my love ones sitting around crying with shadows because they don't know how to help me.
Like I've stated before, I don't know if it's the Kudzu or if God is just giving me a repreve, but I don't want to find out either, so I'll continue to take the Kudzu. And Yes, I do take Verapamil on a daily basis.. I also take medication for Asthma and Trex for the two hits I've had. The Trex didn't work any slower or any less.
Had my doctor told me not to try the Kudzu, would I had done it any way? No!! But he looked it up, called me back and said that he saw no reason I couldn't take it.. In fact he jokenly told me that he might try some himself...
I hope the the two people that had a problem will be okay and I Pray that any one else using Kudzu will have no problems.
Peace & Blessings
Lady Luv
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