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Title: Dosage for Kudzu Post by clustersister on Dec 29th, 2005, 3:08pm My brother has been getting clusters for over 16 years now and is currently in the midst of one. O2 did not work for him last night, and I am wondering about Kudzu that I have seen mentioned. What dosage should he try? Will it help him at this point in his cluster? I want to help him, but sometimes there doesn't seem like there is much I can do. I ordered the Clustermasx for him. Any other ideas? Any help will be appreciated. |
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Title: Re: Dosage for Kudzu Post by nani on Dec 29th, 2005, 3:27pm If kudzu is going to help him, it won't matter how far into his episode he is. Most of us used between 3600 and 4500 mgs a day as a prevent. The best guide will be the dosage on the bottle that you buy. The secret seems to be in the timing. He should take his largest dose of kudzu at least 2 hours before his most active CH time. Once he finds the timing that works best, he needs to be sure and stick to it. Ordering the clustermasx is a great idea. I've heard nothing but great things about it. Get him here. He'll find tons of info and a lot of support. Thanks for being there for him. We all appreciate good supporters. :) pain free wishes to him, nani |
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Title: Re: Dosage for Kudzu Post by clustersister on Dec 29th, 2005, 3:38pm Nani, Thanks so much. I have been encouraging him to get online because I know he feels isolated being as he has never met anyone else who suffers from the beast. He has stopped going to his Neuro who was a nice guy, but never really provides any solutions. I will buy him some Kudzu and drop it off tonight with your suggestion. Maybe this will provide some relief... Many wishes for Pain Free for you - I have compassion for you all. |
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Title: Re: Dosage for Kudzu Post by Margi on Dec 29th, 2005, 3:49pm Hi Clustersister, Is your brother on any other meds, though? The alternative therapies work best (and safest) when they are taken without any other meds being in the system. If your brother has seen a neuro, he's most probably been prescribed some preventative/abortive meds. They can really wreak havoc with kudzu and put him in a dangerous spot if he mixes them. Is he using the oxygen the recommended way? High flow rate, non-rebreather mask? Sorry to hear he's hurting and good for you for digging for him. |
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Title: Re: Dosage for Kudzu Post by clustersister on Dec 29th, 2005, 4:01pm He has pretty much been staying away from all the prescription drugs but he is taking 5 mg Zyprexa that he says was prscribed by the headache clinic several years ago... Thanks for your help! |
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Title: Re: Dosage for Kudzu Post by Margi on Dec 29th, 2005, 4:06pm I honestly don't know how Kudzu will interact with an antipsychotic (Zyprexa)... I think there was a thread here about it somewhere from the last couple of weeks. Always best to research interactions before finding out the hard way that it's not a good idea to mix the two. I'll do some digging here and see if I can find that thread. I'll update my post with it if I can. update: sorry, I was mistaken, it was a thread about mixing with the hallucinogens and I'm pretty sure the drug in question in that thread was an antidepressant, not an antipsychotic. There's still so much we don't know.. :( Here's some info on Zyprexa: http://www.zyprexa.com/common_pages/safety.jsp it says it may lower blood pressure. Kudzu can have the same effect. It really might be dangerous to combine the two. And it doesn't look like Zyprexa is something he should just suddenly stop taking, either. Always best for him to talk to a doctor before he tries adding something new into the mix. |
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Title: Re: Dosage for Kudzu Post by BarbaraD on Dec 29th, 2005, 4:21pm This is weird. I just purchased some kudzu today and came here to ask how to take it and how much. Seems I am a little late, but Margi thanks for the advice about the interactions. I'm on topamax and trazadone (and have been since 99) for prevent. You know that's the only thing that's kept me going for all these years. Now what do I do? I just upped my dose of topamax to 200mg (from 100mg) cause I'm getting hit really hard lately. The trazadone is an antidepresant (right now between the topamax causing depression and everything else that's going on that's causing depression - oh my life is just one joy after another lately ain't it) I'm really afraid to get off it. Ya think it'd be best to just wait till things calm down and I feel safe getting off everything before trying the kudzu? I can't find much on either of the meds, but you know me and research - not my main thing at all. Thanks for any advice you can give. (See sometimes I do really listen ;)) Hugs BD |
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Title: Re: Dosage for Kudzu Post by Margi on Dec 29th, 2005, 4:34pm Hi Mom :) sorry to hear you're getting nailed. I know Mel took kudzu and she's on an anti-d too. She didn't mention much of an interaction with kudzu but it looks like the kudzu didn't really work for her either? I could be wrong, I'm just going by the first two pages of that 5 page thread over on the Meds board. This one: http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=meds;action=display;num=1133700680 The cymbalta is an anti-d. Never a good idea to go cold turkey off those. I haven't read all the way through that thread yet, but I know Mel's was getting hit really hard too. I hate this time of year for my clusterkids. :( hugs to you and that new puppy of yours, too! edited to add - well I've just read the last page of that thread and it looks like the kudzu may be helping Mel afterall. YAY!! |
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Title: Re: Dosage for Kudzu Post by clustersister on Dec 29th, 2005, 4:44pm Margi, Thanks for al the info. I don't think I'll get him the Kudzu at this point. I'll tell him to call his neuro. Have you heard of any other sufferers taking Zyprexa? I know my brother was thrilled because he was pain free fpr a year - first time in a long time. I don't think he's seen the dr. for quite some time. I think he has kind of given up on getting relief there. For the O2, he is currently using a welders tank witha balloon - that's why I ordered the clustermasx. I am hoping that improves the effectiveness. Thanks again! |
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Title: Re: Dosage for Kudzu Post by nani on Dec 29th, 2005, 7:31pm Whoa...this thread is making kudzu sound dangerous! Fact is...it's really not. Especially in comparison to some standard CH treatments like the triptans, steroids and Topamax. OK...here's what we know (this is all just info gathered from beta testers, mind you): If you have very low BP, kudzu and other BP meds (like verapamil) may cause BP to drop too low. If you take kudzu up to 2 hours before a triptan, it may render the triptan ineffective. Some have done this and have not had any ill effects, though. If you are a "bleeder" or within a few weeks post-op, kudzu may increase the chance of a bleeding problem. Probably not a good idea for children or pregnant women, but only because it hasn't been tested. (Hopefully the doctors at Harvard will decide this might be worth testing someday) That's it, so far. I think overall it's a very safe choice. Even it's BP lowering action is very gentle. I only know of one person who had a problem with it, she had some post-op bleeding that may have been exacerbated by kudzu use. She already had bleeding problems from that surgery before she started kudzu, if I remember correctly. The worst side effect that seemed common was increased gas. And frankly, that was only unpleasant for our co-habitants. Barb, I was on Neurontin, another anti-seizure drug, while on kudzu and found no problems with them together. Clustersister, please look over all the threads contained in this thread (have your brother do the same) and make a decision after that. http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=meds;action=display;num=1110584362 keep us posted, nani |
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Title: Re: Dosage for Kudzu Post by clustersister on Dec 30th, 2005, 11:04am Nani, Thank you so much - you have been a great help. The main reason I was starting to back off of the Kudzu is because my brother lives alone, and I really worry if he has an adverse reaction there is no one there to keep an eye out on him. I will give him this info and maybe he will start on a low dose and see how he feels. His girlfriend is coming to town this weekend so this may be a good time for him to try it out. I know I will feel better having her there with him as he gets his most severe hits in the middle of the night - of course. He has been battling this monster for so long, and I am really hopeful that the Kudzu will help as a prevent for him. I will definitely keep you posted - thanks again! Carole |
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Title: Re: Dosage for Kudzu Post by Margi on Dec 30th, 2005, 11:38am I'm sorry, Nani - I didn't mean to be a kudzu bad guy - it really has helped a lot of people. It's just scary when we don't know what other meds are being taken behind the scenes and someone could end up playing with fire by unknowingly causing interactions. I guess I'm overcautious in that regard. Again, I do apologize - kudzu IS one of the more promising treatments we've seen here lately. Carole, is your brother using the oxygen properly? It really helps a lot of people too but it's very common to hear that it fails them if they are not delivering it correctly. There's a lot of information about it in the button to the left here. There are also other things that can help him get through the night without getting attacked. He can try Benadryl, Dramamine or Melatonin. All promote sleep as a side effect. Ice is also a big help to combat the pain. Keep us posted, Carole - hope your brother finds relief. Tell him to sign on here, as well, it honestly will help him to find others who've felt his pain. |
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Title: Re: Dosage for Kudzu Post by nani on Dec 30th, 2005, 11:53am Caution is good, Margi. :) The thread started to sound alarming, so I thought I'd interject what we've learned so far. I really believe kudzu (and the other alternatives) are far safer than most of the standard CH meds. And for me, at least, they've been the most effective treatments I've used. In addition to Lizzie2's post op bleeding, I only heard of one other person who allegedly had a problem with the 'zu... turns out she wasn't even using kudzu. I just don't want to scare folks off. Carole, in regard to your Zyprexa question... I know of 2 other sufferers who've used it as an abortive. Neither reported problems with it. I have recently seen ads on TV about a class action suit against it because it may cause diabetes in folks who use it regularly. So, I don't know about long term safety. I'm going to PM you articles on it that were recently published in the OUCH newsletter. They're written by the 2 users. It may take a few minutes, so look for them later. Again, thanks for helping your brother out. Let him know he has a whole bunch of CH "siblings" here, too :) ~nani |
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Title: Re: Dosage for Kudzu Post by clustersister on Dec 30th, 2005, 12:22pm Thanks to you both. Yes, my brother is using O2, but he has been using it with a balloon and I do not know what kind of flow, etc. He has had a lot of success with the O2, but it seems like there are always a couple of days when the O2 doesn't work. I guess that's when he is in the peak of the cluster... I ordered the Clustermasx and printed the Oxygen info for him. I know he is taking Melatonin and 5mg Zyprexa. I suugested the Benadryl to help with sleep, but I don't think he started taking it yet. Maybe I can convince him to log on...I think he would feel all the support right away, and maybe not feel so alone any more. I will try to convince him. Carole |
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Title: Re: Dosage for Kudzu Post by BarbaraD on Jan 2nd, 2006, 7:23am Clustersis, How much melatonin is he taking? I take 9-12 mg at night and have had a lot of success sleeping (which helps a lot with the day hits) thru the night. Sometimes (on a really bad day) I'll take Tylenol PM at bedtime (it contains benadryl and I always forget to buy benadryl). DO NOT use Excedrin PM - it will cause rebounds. I'm gonna try the Zu after Friday (My German son is leaving then and I don't want to have any side effects while he is here - after that if I have any - I'll deal with them then). Thanks for the advice kids. I just hate this time of year. I've got so much to get done and I always get hit worse at this time of year. I'd like to go back to being episodic -- think the beast would be open to negioations? [smiley=huh.gif] Hugs BD |
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