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        New Message Board Archives >> Medications, Treatments, Therapies 2005 >> Kudzu- starting a flame war
        
(Message started by: pubgirl on Apr 16^th, 2005, 8:24pm)

Title: Kudzu- starting a flame war
Post by pubgirl on Apr 16^th, 2005, 8:24pm

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 ;;D

W the B

Title: Re: Kudzu- starting a flame war
Post by Marc on Apr 16^th, 2005, 9:16pm

Wendy,

What's the story on those two people? I have not heard about it.

Marc

Title: Re: Kudzu- starting a flame war
Post by Kim Y. on Apr 16^th, 2005, 9:18pm

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... :-/

Title: Re: Kudzu- starting a flame war
Post by pubgirl on Apr 16^th, 2005, 9:25pm

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

Title: Re: Kudzu- starting a flame war
Post by Marc on Apr 16^th, 2005, 9:42pm

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

Title: Re: Kudzu- starting a flame war
Post by don on Apr 16^th, 2005, 10:00pm

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.

AMEN TO THAT!

Post your own experiances and leave it at that.

Title: Re: Kudzu- starting a flame war
Post by BikerBob on Apr 16^th, 2005, 10:01pm

on 04/16/05 at 21:18:07, 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... :-/

I suspect that few, if any, doctors know the answer about drug interactions between kudzu and other meds.

Bob

Title: Re: Kudzu- starting a flame war
Post by Marc on Apr 16^th, 2005, 10:05pm

Bob,

Yup, my Neuro wasn't willing to give me any input on shrooms either.

Title: Re: Kudzu- starting a flame war
Post by nani on Apr 16^th, 2005, 10:13pm

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.

Title: Re: Kudzu- starting a flame war
Post by Marc on Apr 16^th, 2005, 10:33pm

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 ;;D People need to make their own, informed decisions.

Anyone want to disagree with that very simple concept?

Title: Re: Kudzu- starting a flame war
Post by pubgirl on Apr 16^th, 2005, 10:33pm

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.

W the B

Title: Re: Kudzu- starting a flame war
Post by nani on Apr 16^th, 2005, 10:37pm

on 04/16/05 at 22:33:43, 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

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?

Title: Re: Kudzu- starting a flame war
Post by pubgirl on Apr 16^th, 2005, 10:46pm

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

Title: Re: Kudzu- starting a flame war
Post by nani on Apr 16^th, 2005, 10:50pm

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.

Title: Re: Kudzu- starting a flame war
Post by clarence on Apr 17^th, 2005, 12:03am

on 04/16/05 at 20:24:28, pubgirl wrote:

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?

Title: Re: Kudzu- starting a flame war
Post by pubgirl on Apr 17^th, 2005, 4:38am

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 ;;D) 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 ;;D) 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

Title: Re: Kudzu- starting a flame war
Post by clarence on Apr 17^th, 2005, 9:13am

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

Title: Re: Kudzu- starting a flame war
Post by Jonny on Apr 17^th, 2005, 9:29am

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? ;;D

Title: Re: Kudzu- starting a flame war
Post by clarence on Apr 17^th, 2005, 9:36am

on 04/17/05 at 09:29:19, Jonny wrote:

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.

[smiley=laugh.gif]

Casey

Title: Re: Kudzu- starting a flame war
Post by Jonny on Apr 17^th, 2005, 10:05am

on 04/17/05 at 09:36:11, clarence wrote:

I am off to church.

PRAY ;)

Title: Re: Kudzu- starting a flame war
Post by nani on Apr 17^th, 2005, 12:01pm

on 04/17/05 at 10:05:28, Jonny wrote:

PRAY ;)

:o I'm afraid it's going to take more than prayer to get those images out of my head....
selective lobotomy, maybe?

Title: Re: Kudzu- starting a flame war
Post by pubgirl on Apr 17^th, 2005, 12:44pm

I was going to eat my dinner, but I am strangely no longer hungry ;;D

Title: Re: Kudzu- starting a flame war
Post by Giovanni on Apr 17^th, 2005, 3:31pm

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.

[smiley=deal2.gif]

Title: Re: Kudzu- starting a flame war
Post by Margi on Apr 18^th, 2005, 9:54am

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!! :o 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? :(

Title: Re: Kudzu- starting a flame war
Post by Frank_W on Apr 18^th, 2005, 10:03am

on 04/17/05 at 09:29:19, Jonny wrote:

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...) [smiley=laugh.gif]

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.

Title: Re: Kudzu- starting a flame war
Post by pubgirl on Apr 18^th, 2005, 10:25am

on 04/18/05 at 10:03:30, 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.

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

Title: Re: Kudzu- starting a flame war
Post by Lizzie2 on Apr 18^th, 2005, 10:28am

on 04/17/05 at 15:31:02, Giovanni wrote:

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

Title: Re: Kudzu- starting a flame war
Post by seasonalboomer on Apr 18^th, 2005, 10:28am

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?

Title: Re: Kudzu- starting a flame war
Post by pubgirl on Apr 18^th, 2005, 10:42am

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

Title: Re: Kudzu- starting a flame war
Post by Frank_W on Apr 18^th, 2005, 10:45am

on 04/18/05 at 10:25:38, 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?

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?

Title: Re: Kudzu- starting a flame war
Post by pubgirl on Apr 18^th, 2005, 10:51am

on 04/18/05 at 10:45:40, Frank_W wrote:

Do a search on your own recent posts Frank

Title: Re: Kudzu- starting a flame war
Post by Lizzie2 on Apr 18^th, 2005, 10:59am

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 :)

Title: Re: Kudzu- starting a flame war
Post by Gator on Apr 18^th, 2005, 11:03am

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.

Title: Re: Kudzu- starting a flame war
Post by Frank_W on Apr 18^th, 2005, 11:06am

on 04/18/05 at 10:51:00, pubgirl wrote:

Do a search on your own recent posts Frank

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.

Title: Re: Kudzu- starting a flame war
Post by seasonalboomer on Apr 18^th, 2005, 11:17am

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.

Title: Re: Kudzu- starting a flame war
Post by pubgirl on Apr 18^th, 2005, 11:30am

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 ;;D

W the B

Title: Re: Kudzu- starting a flame war
Post by Frank_W on Apr 18^th, 2005, 11:36am

For my part, I will be more conscientious of what I say and how I say it, in the future.

Peace,
-Frank

Title: Re: Kudzu- starting a flame war
Post by pubgirl on Apr 18^th, 2005, 11:38am

Just seen your other reply

:-*

Peace to you too

W the B

Title: Re: Kudzu- starting a flame war
Post by Flash on Apr 18^th, 2005, 11:57am

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???

Title: Re: Kudzu- starting a flame war
Post by Bob P on Apr 18^th, 2005, 12:12pm

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???

When it comes to cluster pain, we are willing to risk those things?

Title: Re: Kudzu- starting a flame war
Post by pubgirl on Apr 18^th, 2005, 12:31pm

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

Title: Re: Kudzu- starting a flame war
Post by Margi on Apr 18^th, 2005, 12:32pm

on 04/18/05 at 12:12:55, Bob P wrote:

When it comes to cluster pain, we are willing to risk those things?

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.

Title: Re: Kudzu- starting a flame war
Post by seasonalboomer on Apr 18^th, 2005, 1:26pm

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).

Title: Re: Kudzu- starting a flame war
Post by Gator on Apr 18^th, 2005, 2:05pm

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!

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.

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.

Title: Re: Kudzu- starting a flame war
Post by pubgirl on Apr 18^th, 2005, 2:32pm

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 ;;D

W

Title: Re: Kudzu- starting a flame war
Post by seasonalboomer on Apr 18^th, 2005, 2:38pm

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

Title: Re: Kudzu- starting a flame war
Post by Frank_W on Apr 18^th, 2005, 3:04pm

I don't have a disclaimer. I'm done offering help.

See ya' on the General Board. L8r.

Title: Re: Kudzu- starting a flame war
Post by Gator on Apr 18^th, 2005, 4:50pm

on 04/18/05 at 15:04:15, Frank_W wrote:

I don't have a disclaimer. I'm done offering help.

See ya' on the General Board. L8r.

::)

Title: Re: Kudzu- starting a flame war
Post by Bob P on Apr 18^th, 2005, 5:29pm

I say you should take medications as directed by your physcian and send all your opiates to me!

Title: Re: Kudzu- starting a flame war
Post by LadyLuv on Apr 18^th, 2005, 6:10pm

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

Title: Re: Kudzu- starting a flame war
Post by nani on Apr 18^th, 2005, 6:21pm

Thanks, Ruthie... [smiley=blush.gif]
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! :-*

Title: Re: Kudzu- starting a flame war
Post by Flash on Apr 19^th, 2005, 6:22am

on 04/18/05 at 12:12:55, Bob P wrote:

When it comes to cluster pain, we are willing to risk those things?

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!

Title: Re: Kudzu- starting a flame war
Post by pubgirl on Apr 19^th, 2005, 6:53am

Flash

I think I must be unwell because I think I agree with you :o

(apart from perhaps the last sentence, which is more than arguable ;;D)

Wish I could say that I think 02 is the answer, but currently I don't think it is either.

W

Title: Re: Kudzu- starting a flame war
Post by Bob P on Apr 19^th, 2005, 7:04am

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.

Title: Re: Kudzu- starting a flame war
Post by pattik on Apr 19^th, 2005, 8:44am

on 04/19/05 at 06:22:53, 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.

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.

Title: Re: Kudzu- starting a flame war
Post by LadyLuv on Apr 19^th, 2005, 5:08pm

:) 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

Title: Re: Kudzu- starting a flame war
Post by floridian on Apr 19^th, 2005, 7:09pm

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.

Title: Re: Kudzu- starting a flame war
Post by jokrs2 on Apr 19^th, 2005, 11:14pm

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. ;;D You are all so wonderful, it's not hard to get choked up while I'm typing this. Thank you beyond measure. Joe

Title: Re: Kudzu- starting a flame war
Post by Lizzie2 on Apr 20^th, 2005, 5:21pm

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.

Title: Re: Kudzu- starting a flame war
Post by godsjoy777 on Apr 22^nd, 2005, 1:53pm

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

Title: Re: Kudzu- starting a flame war
Post by nani on Apr 22^nd, 2005, 2:53pm

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.

Title: Re: Kudzu- starting a flame war
Post by clarence on Apr 22^nd, 2005, 5:10pm

on 04/20/05 at 17:21:01, Lizzie2 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

Title: Re: Kudzu- starting a flame war
Post by Lizzie2 on Apr 22^nd, 2005, 6:22pm

on 04/22/05 at 17:10:58, clarence wrote:

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

Title: Re: Kudzu- starting a flame war
Post by godsjoy777 on Apr 23^rd, 2005, 1:59pm

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