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Topic: PF since Friday! (Read 1320 times) |
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floridian
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on Mar 10th, 2005, 10:34am, Kim Y. wrote:Sounds like it covers up the symptoms and it doesn't take it away. If you can't get off of it without them coming right back and the reason its less attack is the fact that some of the med is still in your system.
Don't get me wrong PF sounds great but It sounds like your going to be on Kudzu all the time or through your cycle to keep it that way. Keep a good level in your body to keep the pain under control. |
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Kudzu may ultimately turn out to be the herbal equivalent of verapamil (though it may work in a somewhat different manner). It may help some people that don't respond to verapamil. It may be necessary to continue as long as a person is in cycle - not sure, but the preliminary reports suggest that.
Sometimes pain is just a symptom of a deeper problem, and turning off the pain is like turning up the radio so you don't hear the car engine clunking. But CH pain is so overwhelming that it does need to be treated. And we don't know how well other established meds really deal with the underlying problems that lead to clusters.
The abortives are probably more in the category of 'just turning off the pain' - oxygen and triptans bring relief, but the next hit is still in the pipeline.
I would like to see a study to determine how well the preventives change (improve) the underlying problems ... do they reduce apnea, which is very common in clusters, and can cause problems on its own? Do preventives restore circadian cycles? Do they normalize choline and serotonin levels? Are autonomic nervous system problems reduced with preventives? How does kudzu compare to other preventives on dealing with these underlying problems?
Good questions. Need more research.
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| « Last Edit: Mar 10th, 2005, 10:59am by floridian » |
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KMT
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Re: PF since Friday!
« Reply #51 on: Mar 10th, 2005, 11:00am » |
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I was only trying to let you know to stay on it. It works by a build up in your system. It is a PF med not a cure is all I ment by that. I am wanting to try it myself. I was just making a theory of what it does in the body by seeing what happens to you when you get off it.
Please I meant no offense 
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floridian
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on Mar 10th, 2005, 11:00am, Kim Y. wrote:I was only trying to let you know to stay on it. It works by a build up in your system. It is a PF med not a cure is all I ment by that. I am wanting to try it myself. I was just making a theory of what it does in the body by seeing what happens to you when you get off it.
Please I meant no offense |
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No offense taken. We need to discuss this from all angles, and I understand your questions (and wish I had better answers to them).
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| « Last Edit: Mar 10th, 2005, 11:03am by floridian » |
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Jeepgun
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Re: PF since Friday!
« Reply #53 on: Mar 10th, 2005, 11:03am » |
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Oh, no offense taken, Kim! No worries. 
But that's why I went off of it, to experiment and see if kudzu possibly had the same effect as a prednisone taper. Apparently it doesn't, so like Verapamil, I will have to remain on it throughout the course of the cycle, and I have no problem with that.
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KMT
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Re: PF since Friday!
« Reply #54 on: Mar 10th, 2005, 11:05am » |
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Just looking at it all around that is the Medical professional in me. Your information has been helpful every where I look. I am just a sceptic because nothing ever seems to work. I am looking on line to order some and try. Trust me to be back to myself I would be ever greatful...
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vig
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Re: PF since Friday!
« Reply #55 on: Mar 10th, 2005, 11:09am » |
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Margi wrote...
"Kudzu has become the most encouraging preventative we've seen yet. "
How about: one of the most....? 
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seasonalboomer
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Re: PF since Friday!
« Reply #56 on: Mar 10th, 2005, 11:32am » |
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Kim,
I think you're talking to the choir of skeptics.... I also only like to take things for as long as I need to, so I'm wanting to see what it is like to go off it, during the period that my episode would normally have started wrapping up.
I can state that based on my own experience and from what I've seen in the threads so far, this Kudzu is having some effect, and for the most part that effect appears to be positive. We've yet to see anyone say, you guys are full of it. We've yet to see anyone say that taking this caused me greater levels of pain than before I took it. We've yet to see anyone say the side effects have caused them to lose their job, their wife, or a limb in some type of heavy equipment. We've yet to see anyone say that their insurance status is in question due to the $11.89 they paid for their kudzu. We've yet to see anyone try to run off the kudzu testers as flim-flam artists from the site.
The only thing we've seen is that it has not been universally effective, but what is pretty consistent is that this substance is causing some type of change in people's cycles. And that those who seem to be seeing less positive results are some chronics and those that have multiple industrial strength medications operating in their system (similar to the clusterbuster experiences). Even that is not totally consistent however.
That being said, my "skeptical" antennae are getting massaged appropriately. How bout' yours?
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Re: PF since Friday!
« Reply #57 on: Mar 10th, 2005, 12:07pm » |
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Nope, no offense taken at all Kim - it was I who misinterpreted your words. My apologies.
I do honestly think this is the most encouraging preventative we've seen yet (sorry, Vig - just by a nose though, ok?  ).
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Re: PF since Friday!
« Reply #58 on: Mar 10th, 2005, 12:34pm » |
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Well I took the leep and bought a bottle online today so here we go. Crossing my fingers.
Not sure what to do with the Verap. Do I wait and talk to my Dr. on the 30th before I try??? So she can't give the advise on stopping the Verap. and trying this. Do I take her some information on Kudzu?
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Hirvimaki
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Re: PF since Friday!
« Reply #59 on: Mar 10th, 2005, 12:41pm » |
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on Mar 10th, 2005, 12:34pm, Kim Y. wrote:Well I took the leep and bought a bottle online today so here we go. Crossing my fingers.
Not sure what to do with the Verap. Do I wait and talk to my Dr. on the 30th before I try??? So she can't give the advise on stopping the Verap. and trying this. Do I take her some information on Kudzu?
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Just MHO (and perhaps has a lot to do with the relationship I have with my doctor), but I'd take in info on kudzu. Floridian has done a wonderful job of getting together information on it. Use it! Having your doctor on your side when you are trying something is a great way to go.
Hirvimaki-Isi
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Jeepgun
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Re: PF since Friday!
« Reply #60 on: Mar 10th, 2005, 12:41pm » |
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Well... She's probably not going to care much about the kudzu and encourage you to stay on the verapamil. The risk is that both the kudzu and the verapamil lower blood pressure, so you might try tapering off of the verapamil, or else spacing your dosages out so that you aren't taking the two at the same time of day. I'm sure Floridian can shed more light on this for you. Good luck and PFDAN's.
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Tiannia
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Re: PF since Friday!
« Reply #61 on: Mar 10th, 2005, 12:44pm » |
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OK I have to make it a point to get some. My hits have ramped up to the point that i am having a hard time of it. 2-3 a day at work and 3 at night. I knew that this was coming but I was still just hoping that I would stay below 4 a day.  So I will find a place the sells it and get some. I have to try something. The trex is not as effecttive as it was my last ramp up. And I refuse to take a full shot because it makes be sick. I take so much other medication for my back and such I really dont even want to think about getting on something else, but at least it is herbal. All of the other herbal submiliments that I have tried over the past 2 years have not done shit, so it cat hurt.
I will let you know when I get some. Goddess I am so tired.... And I can feel the pressure building behind my eye right now. 
Frank, I am so happy for you hun. I really hope that you are able to stay 95%+ PF through the rest of your cycle. 
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Re: PF since Friday!
« Reply #62 on: Mar 10th, 2005, 1:01pm » |
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Thank you, Tia. I'm so sorry that you're having such a rough time of it, right now. Stay strong and hang in there, my friend. I dearly hope the kudzu works as well for you as it has worked for myself and others.
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rickyshot
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Re: PF since Friday!
« Reply #63 on: Mar 10th, 2005, 1:36pm » |
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Hmmmm Topamax (Dopamax) which nearly made me jump out of a window, Verapmimal dizzy and sick spells, siebellium gain weight , sleepy, hungry lethargic , trips with fast heart beats, shadows, rebounds , steroids need I say more? with no fuckin results from ha or KUDZU with no side effects for me and some visable results. A no brainer for me. I would be very interested in any info or studies Floridian can come up with. If there are any future side effects with Kudzu I would be willing to accept them as I did with all the other chemical shit I have poured into my desparate body.
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Leesa
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Re: PF since Friday!
« Reply #64 on: Mar 10th, 2005, 2:28pm » |
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FANFUKKENTASTIC Frank. Hope this keeps up babe. 
PF wishes, Leesa
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floridian
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on Mar 10th, 2005, 1:36pm, rickyshot wrote:| I would be very interested in any info or studies Floridian can come up with. If there are any future side effects with Kudzu I would be willing to accept them as I did with all the other chemical shit I have poured into my desparate body. |
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I'm assuming you read the article at med-owl, and all the threads on this board? Those identify the known side effects, some hypothetical side effects (but not the unknown side effects, if there are any).
The article is due for an update soon, maybe over the weekend.
http://www.med-owl.com/clusterheadaches/tiki-index.php?page=Kudzu
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| « Last Edit: Mar 10th, 2005, 2:51pm by floridian » |
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Re: PF since Friday!
« Reply #66 on: Mar 10th, 2005, 2:54pm » |
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on Mar 10th, 2005, 2:28pm, Leesa wrote:FANFUKKENTASTIC Frank. Hope this keeps up babe.
PF wishes, Leesa |
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Thank you! You and me both! 
Floridian, if there are unknown side effects with kudzu, it would difficult to document them, wouldn't it?
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floridian
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Yeah, I was inspired by this poetry:
The Unknown
As we know,
There are known knowns.
There are things we know we know.
We also know
There are known unknowns.
That is to say
We know there are some things
We do not know.
But there are also unknown unknowns,
The ones we don't know
We don't know.
—D. Rumsfeld, Feb. 12, 2002,
Good to be clear about things. I tried to cover the knowns and the known unknowns, but cant be held responsible for the unknown unknowns.
Other poems by Donald: http://slate.msn.com/id/2081042/
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| « Last Edit: Mar 10th, 2005, 3:12pm by floridian » |
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Jeepgun
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Re: PF since Friday!
« Reply #68 on: Mar 10th, 2005, 3:11pm » |
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 Play it again, duh-duh-duh-Donnie!!
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Edna
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Re: PF since Friday!
« Reply #69 on: Mar 11th, 2005, 2:47pm » |
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Frank and others, still makes ME feel great knowing you guys are having success.
AND, I just got a mental picture that has me in laughter here.....
I did read somewhere about kudzu helping alleviate the urge to drink for alcoholics huh??? Well, can you imagine.............it proves to be helpful to EVERY Clusterhead......OMG.......
NO DRINKING????????? NOBODY would believe THAT.....LMAO
wishing continued pf times for you all,
hugs,
EDNA
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PrettyH8Machine
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Congrats bro! I'm glad the Kudzu worked for ya.
peace,
Carl
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Re: PF since Friday!
« Reply #71 on: Mar 11th, 2005, 3:06pm » |
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LOL, Edna!
Thanks, Carl. It's not 100% just yet... And in fact, the hit I had last night was pretty painful. Another funny thing: When I got hit, it seems to have interrupted my brain while it was still on "spin cycle." When I awoke, it's like my thoughts were all jumbled together, like they couldn't get out of the way of each other fast enough... As if someone had a book of very disturbing black and white images, and they were fanning the pages in front of my mind's eye at a thousand miles an hour...
Cluster headaches = Power surges?
Maybe I'm just insane.....
 
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Hirvimaki
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Re: PF since Friday!
« Reply #72 on: Mar 12th, 2005, 9:04am » |
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on Mar 11th, 2005, 3:06pm, Frank_W wrote:| Maybe I'm just insane..... |
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floridian
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on Mar 11th, 2005, 3:06pm, Frank_W wrote:When I got hit, it seems to have interrupted my brain while it was still on "spin cycle." When I awoke, it's like my thoughts were all jumbled together, like they couldn't get out of the way of each other fast enough... As if someone had a book of very disturbing black and white images, and they were fanning the pages in front of my mind's eye at a thousand miles an hour...
Cluster headaches = Power surges?
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Sounds like the description for another alternative treatment, one that also affects the 5-ht2 receptors. Or the movie Pi ... got any stock predictions??
I remember something like that when I was a kid taking antihistamines, woke up to get a drink of water, turned on the bathroom light, and things got weird for a few seconds. How long did it last, Frank?
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| « Last Edit: Mar 12th, 2005, 2:20pm by floridian » |
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Jeepgun
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Re: PF since Friday!
« Reply #74 on: Mar 12th, 2005, 5:48pm » |
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on Mar 12th, 2005, 2:19pm, floridian wrote:
Sounds like the description for another alternative treatment, one that also affects the 5-ht2 receptors. Or the movie Pi ... got any stock predictions?? |
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Uh... Pork bellies opening at 2.25? LOL!
Quote:| I remember something like that when I was a kid taking antihistamines, woke up to get a drink of water, turned on the bathroom light, and things got weird for a few seconds. How long did it last, Frank? |
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I don't know... About 3-5 minutes, I guess. The hit wasn't strong enough to bring me WIDE AWAKE, but enough to rouse me from bed, so I suspect I was treading the hynopompic state... And yeah, it reminded me of the movie, "Pi," or more accurately, the music video on the DVD, "Pi=R2."
Strange stuff...
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