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Topic: Whats all the Kudzuuuuuuuu about??? (Read 65698 times) |
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Garys_Girl
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Re: Whats all the Kudzuuuuuuuu about???
« Reply #75 on: Apr 7th, 2006, 2:16pm » |
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Jean, you're a sweetheart.
Gary was in the military for 9 1/2 years. He was in Lebanon during the war. He's been blown up, had 3rd degree burns, has shrapnel in his legs, has 385 jumps and as a result has broken most of the bones in his body at some point or another, had four major back surgeries and deals with intense back pain all the time. He has no cartiledge left in his left knee but won't do the recommended knee surgery.
He had a tumor in his head. He breaks one of his toes at least once a year and doesn't even bother to see a doc for it. We were on a biz trip when he broke his toe once. He put on his shoes, and we walked from meeting to meeting (around NYC) three days in a row, and he barely complained. He broke a finger one morning (I didn't know). We had a doc's appt. for something else two days later. While there, he says "Oh yeah - I think I broke my finger." He holds out his hand, and the top half of his middle finger is off at an angle and the doc says "Sure looks like it! When did this happen?" ... and nearly fainted when Gary said "2 days ago." Never bothered to go for the X-ray or get it dealt with.
This is a man who already lived with constant pain (man, you should HEAR it when his knee "goes out" . Most of it would have any of us on narcotics, eagerly prescribed by some physician. Yet when it came down to it - he just threw on the back brace or knee brace or shoe, and got up and did what he had to do.
But these? I've never seen this man cry from pain. He doesn't scream, he barely makes a noise. He gets up, paces, lies down, thrashes around - sometimes, gets violently sick and just lies on the bathroom floor writhing. When there are tears streaking down his face and he's writhing around, I know any other human being would call an ambulance.
So while (THANK GOD) I've never experienced your pain, I do know what you mean about suffering, and not letting it ruin your life.
Thank God this site is here. And Thank God the Kudzu seems to be working! (And thanks for the Tylenol tip!)
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Laurie
"It's comin' like a freight train - can't you hear it?" - Gary
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I Cant Dance
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Re: Whats all the Kudzuuuuuuuu about???
« Reply #76 on: Apr 9th, 2006, 3:26pm » |
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I am going to try the zu, but am hoping to get some local so I don't have to wait as long. Starting week 6, went from 1-2 hits a day at k5-6, to now k9-10 with 5 hits in last 24hrs. One yesterday was nearly 2 hours. I am getting really tired, and my mind is playing tricks on me, I keep talking to the beast and refusing to say the "Why me" thing, as I won't give the bastard the satisfaction. I just hope it doesn't start talking back. Thanks for the zu post, I hope I can get it soon and that it works...I can't do this much longer. I am due, shawdows are intensifying. Thanks for being here.
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"I can endure more pain than anyone you've ever met. That's why I can beat anyone I've ever met."
-Steve Prefontaine, "Without Limits"----Yeah Right! "I got yer pain right hiya."
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I Cant Dance
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Re: Whats all the Kudzuuuuuuuu about???
« Reply #77 on: Apr 10th, 2006, 1:11pm » |
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Found some Planetary Formulas Recovery local. Heading to pick it up and try. In 5 years, worst day ever yesterday. Any recommendations on dosages? I have read all posts, but some are old and I need some reassurance.
I am very tired, and am dreading the rest of the day. Shadows are more intense for this time of day than previous, and I got taken for a 2hr kip 9-10 yesterday around 1:30. Thanks.
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"I can endure more pain than anyone you've ever met. That's why I can beat anyone I've ever met."
-Steve Prefontaine, "Without Limits"----Yeah Right! "I got yer pain right hiya."
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Garys_Girl
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Re: Whats all the Kudzuuuuuuuu about???
« Reply #78 on: Apr 10th, 2006, 7:43pm » |
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Gary was having K9s and K10s, 4 - 8 attacks a day. He couldn't wait to get the Kudzu either. We found the same thing: Kudzu Recovery (the pills are 750mg).
He now takes them in the following schedule (recommended by TxBassLady, I think):
1 at 11:30am
1 at 3:30 pm
2 at 8:30pm
He also takes 2 5mg Melatonin pills at 10:15pm. To help his "body clock" get reset, we've added 1200mg of calcium that he takes with the Melatonin, and 500mg of magnesium that he takes with breakfast in the morning.
Because he was having an attack early afternoon, late afternoon, and the bulk of them at night, this seems to be an ideal schedule. He did have a K9 for about 55 minutes the first day he started taking the Kudzu, but from day 2 he's down to 1 - 3 attacks/day, the ones during the day are now what he calls "twinges" (meaning a K3 - K5) and they last about 10 - 20 minutes. He doesn't even bother with the 02 for these. He still often has one at night, around 11:30pm, but the highest level of pain has been a K7, it's usually a K6, and it lasts for about 20 minutes now, not K9 for 1 1/2+ hours. AND now he generally sleeps from around 1:30am to about 5:30am, four blessed hours in a row.
Hope you have at least these results, because while he's not pain free (and still has shadows more or less all day), this is SO much more bearable - for all of us.
Keep us posted!
Laurie
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Laurie
"It's comin' like a freight train - can't you hear it?" - Gary
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I Cant Dance
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Re: Whats all the Kudzuuuuuuuu about???
« Reply #79 on: Apr 13th, 2006, 12:25am » |
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Took my first dose of 2 Planetary Formulas Kudzu Recovery on Monday-2 hours before my hit. Have taken 2 at about 11:30 (two hours before my big hit), two about 4:30 (two hours before my next hit) and one at bedtime since Monday. Too early to give a difinative answer, but no effect as yet. I am going to give it a few more days. Still 4 hits a day, with two of them at kip 9 and lasting just under 3 hours. My nights are worse now too. 4 hours at kip 4/5 last two nights. I am sure it is just coincidence and not the Kudzu. 
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"I can endure more pain than anyone you've ever met. That's why I can beat anyone I've ever met."
-Steve Prefontaine, "Without Limits"----Yeah Right! "I got yer pain right hiya."
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Garys_Girl
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Re: Whats all the Kudzuuuuuuuu about???
« Reply #80 on: Apr 13th, 2006, 10:46am » |
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Sorry to hear it's not helping any.
Gary's had two very bad days these last two - but he kept trying to use some type of nasal spray, and they all seem to be triggers. So we can't tell if the Kudzu isn't working the way it appeared to be, or if he exacerbated it all with the nasal sprays.
He's also been taking Melatonin, and it may be that's been helping.
The real bummer is his all day shadows are intensifying. Don't know if this is nasal spray "hangover" or what.
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Laurie
"It's comin' like a freight train - can't you hear it?" - Gary
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I Cant Dance
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Re: Whats all the Kudzuuuuuuuu about???
« Reply #81 on: Apr 14th, 2006, 12:12pm » |
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Today will be my fourth day of Kudzu. No change as yet. All in all, I spent nearly 8 hours of the last 24 at kip 8-9. I am also still taking 12mg of melatonin at night as well. If I see no change by Saturday, I will start prednisone and htp? Thanks for listening.
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"I can endure more pain than anyone you've ever met. That's why I can beat anyone I've ever met."
-Steve Prefontaine, "Without Limits"----Yeah Right! "I got yer pain right hiya."
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seccsij
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Re: Whats all the Kudzuuuuuuuu about???
« Reply #82 on: Apr 14th, 2006, 7:29pm » |
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on Apr 13th, 2006, 10:46am, Garys_Girl wrote:Sorry to hear it's not helping any.
Gary's had two very bad days these last two - but he kept trying to use some type of nasal spray, and they all seem to be triggers. So we can't tell if the Kudzu isn't working the way it appeared to be, or if he exacerbated it all with the nasal sprays.
He's also been taking Melatonin, and it may be that's been helping.
The real bummer is his all day shadows are intensifying. Don't know if this is nasal spray "hangover" or what. |
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I dont know if this will help at all but, after 21 yrs of CH, I am now getting a little  relief with 15mg of Melatonin, 1/2 hr before bed and beclomethasone dipropionate BP nasal spray (called Beconase in Australia). It is very gentle on the nose and works fast to clear that stuffy sensation. It's not a cure but it helps a little. i hope gary has PF days soon.
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Garys_Girl
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Re: Whats all the Kudzuuuuuuuu about???
« Reply #83 on: Apr 14th, 2006, 10:04pm » |
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on Apr 14th, 2006, 12:12pm, I Cant Dance wrote:| Today will be my fourth day of Kudzu. No change as yet. All in all, I spent nearly 8 hours of the last 24 at kip 8-9. I am also still taking 12mg of melatonin at night as well. If I see no change by Saturday, I will start prednisone and htp? Thanks for listening. |
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Sorry, I don't know what htp is. I do know from reading here that a prednisone taper is a very effective short-term preventative.
Just FYI, Gary isn't taking just Kudzu and melatonin. He's also using magnesium and calcium supplements. If you have a minute, take a quick read of the Taurine thread.
Taurine seems to increase the effectiveness of caffeine as an abortive (e.g. Red Bull).
But it Taurine also increases the effectiveness of magnesium, which is low in many clusterheads.
Gary added Taurine to the supplement regimen two days ago. He's had one attack in the past 24 hours. The melatonin seems to have "gotten into his system" now, and he got close to 8 hours of sleep last night! Also, despite the problems for a couple of days due to sinus med complication, the shadows are "shadowier" now.
Good luck "I Can't Dance," and wishing you pain free days and nights!
Laurie
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Laurie
"It's comin' like a freight train - can't you hear it?" - Gary
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I Cant Dance
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Re: Whats all the Kudzuuuuuuuu about???
« Reply #84 on: Apr 17th, 2006, 1:14pm » |
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Kudzu showed no noticable effect for me after seven days.  . Started prednisone yesterday. Now taking Kudzu, pred and 5-htp and o2. Ordered clustermasx, a different type of kudzu as well. Getting hit 3-4 times/day. Mid day hit is the worst at k9 for 2 hours+. Evening hit has gotten shorter in time but seems more intense. Nightime hit is 2-4 hours but less intense at k3-6. Morning hit has changed. Been hit or miss for a few days now. Got like six hours sleep last night.  .
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"I can endure more pain than anyone you've ever met. That's why I can beat anyone I've ever met."
-Steve Prefontaine, "Without Limits"----Yeah Right! "I got yer pain right hiya."
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nani
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Re: Whats all the Kudzuuuuuuuu about???
« Reply #85 on: Apr 17th, 2006, 3:51pm » |
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Sorry the kudzu hasn't proven to be your magic bullet.
 If you say the hits are changing a bit in their duration and/or intensity, it may be doing something. I know of folks who've used a pred taper and kudzu at the same time. I don't know of anyone taking 5 HTP and kudzu. Are you timing the kudzu to help prevent the big hits? Your biggest dose should be taken about 2 hours before your biggest hit. It does sometimes take a while to figure out the proper dosage and timing. Hang in there. pain free wishes, nani
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lashultz
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Re: Whats all the Kudzuuuuuuuu about???
« Reply #86 on: Apr 17th, 2006, 5:17pm » |
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Don't know for sure if it is the Kudzu or just some time for relief. After 3+ years of being chronic I will take whatever I can get. I am taking 613 mg. Kudzu and 240 mg. Verapamil twice a day. I have been much better for the last month or so. I still get headaches but no where as serve as the previous 4 months. For whatever it is worth, give Kudzu at least a couple of months before aborting the chance for some relief.
lashultz
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I Cant Dance
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Re: Whats all the Kudzuuuuuuuu about???
« Reply #87 on: Apr 17th, 2006, 8:30pm » |
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I started the kudzu at 2 tabs (planetary formulas) 2hrs before biggest heit, 2 2 hrs before the next and 1 at bedtime, which I just increased to two. Maybe I shoud go to 3-3-2?
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"I can endure more pain than anyone you've ever met. That's why I can beat anyone I've ever met."
-Steve Prefontaine, "Without Limits"----Yeah Right! "I got yer pain right hiya."
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Dragnlance
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Re: Whats all the Kudzuuuuuuuu about???
« Reply #88 on: Apr 18th, 2006, 9:05am » |
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I take Kudzu with great relief. I have found however that there is a difference in what you can purchase.
Make certain that you get Kudzu that is 100% Extract. Those that are part extract and part ground Kudzu do not seem to be as effective for ME. You could be the same. Read the lable. If it has both listed, look for one that is just extract. Locally the only one I can get that is an extract is Solaray.
Hoping for pain free time for you man!!
Dragn
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Rosemary
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Re: Whats all the Kudzuuuuuuuu about???
« Reply #89 on: Apr 19th, 2006, 4:42pm » |
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I tried Kuduz on and off for 3 weeks, called the company to ask if anyone had reported side effects of diarrhea. They denied any reports of side effects. I am finished trying unregulated products. I visited 2 doctors, required a CT Scan and a Colonoscopy. My medical bills are arriving daily, so far they are over $6,000. The worse thing is that I still have daily headaches!
They are tolerable at the moment, must be in a good cycle. In May, it will mark 3 years of cluster headaches that wake me up daily.
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nani
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Re: Whats all the Kudzuuuuuuuu about???
« Reply #90 on: Apr 20th, 2006, 12:25am » |
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Sorry you had a bad experience with kudzu.
I hope you find something that works well for you.
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Geewilly
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Re: Whats all the Kudzuuuuuuuu about???
« Reply #91 on: Apr 21st, 2006, 12:18am » |
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I call BS on Rosemary, a herbal substance did not cost you $6000 in medical treatment. If you were given Colonoscopy for diaarrhea then you were taken on a ride insurance wise not medical reason and perhaps your a$$ is were they should have been looking and not your head for a CH.
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Geewilly
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Re: Whats all the Kudzuuuuuuuu about???
« Reply #92 on: Apr 21st, 2006, 10:47am » |
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My apologies Rosemary, that was not nice of me I just have so much hope for this Kudz. Sorry and I hope you have many, many PF days.
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Garys_Girl
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Re: Whats all the Kudzuuuuuuuu about???
« Reply #93 on: Apr 28th, 2006, 10:55am » |
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Geewilly, thank you for apologizing to Rosemary. She didn't say she spent $6000 on herbal substances; the amount was for all the treatments, imaging tests, and doc visits. They can add up quickly.
Hubby has a very sensitive digestive system, and the Kudzu definitely caused quite a bit of discomfort; cramping and diarrhea. He also started taking magnesium (with calcium), but apparently that exacerbated the situation. We upped the calcium and added Taurine (which helps you metabolise the magnesium), and things calmed down.
Overall, he's decided to stick with the Kudzu and the supplements for now.
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Laurie
"It's comin' like a freight train - can't you hear it?" - Gary
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Geewilly
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Re: Whats all the Kudzuuuuuuuu about???
« Reply #94 on: Apr 30th, 2006, 5:29pm » |
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It will be my luck that my intestines fall out from Kudz and still be stuck with the monster I should not of snapped at Rosemary just because I have high hopes for Kudz.
I have only been using it for a week or so and it has helped tremendously. I am afraid though it will get me through this cycle and then my next one will comeback with a Vengance and the Kudz will not work as it is now.
Knock on wood I have not had many Kip 8-9's since starting the Kudz. Mostly just heavy shadows and 1 to 2 Kip 3's in a 2 day period. My forehead constantly feels warm and there is pressure throughout but is definatley not much to complain about. I was going to try and make it through this cycle with nothing but cold rags/cold water splashed on face and neck but the Kip 9's were killing me. I have heard alot of good things about Kudz, so figured I would give it a try.
I wish PF days to you all.
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munozali
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Re: Whats all the Kudzuuuuuuuu about???
« Reply #95 on: Jun 13th, 2006, 3:46pm » |
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Hi, I am a new CH member!
I have a question: I am really interested in trying the Kudzu supplements. I am taking Prednisone right now. I have enough for about another week, before I stop taking Prednisone. Is there any danger in taking the Kudzu and Prednisone at the same time? What other things should I try if my bout is not gone by the time I have finished the Prednisone?
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nani
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Re: Whats all the Kudzuuuuuuuu about???
« Reply #96 on: Jun 13th, 2006, 6:38pm » |
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Hi munozali, and welcome.
Some people have taken kudzu and prednisone with no ill effects reported. Generally, a dr will prescribe a prednisone taper and introduce a preventative at the same time. This allows the prevent to build up to therapeutic levels before you're finished with the pred. If your dr hasn't started another med (like verapamil), you shouldn't have any problems with the kudzu. A week might be plenty of time for the kudzu to start working. The most important thing about using kudzu is the timing of the doses. Take your largest dose about 2 hours before your worst attacks. Don't forget to take it everyday, either. Missing a dose can result in full-on hits.
Good luck, and keep us posted.
pain free wishes, nani
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munozali
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Re: Whats all the Kudzuuuuuuuu about???
« Reply #97 on: Jun 14th, 2006, 1:44pm » |
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Quote:Hi munozali, and welcome.
Some people have taken kudzu and prednisone with no ill effects reported. Generally, a dr will prescribe a prednisone taper and introduce a preventative at the same time. This allows the prevent to build up to therapeutic levels before you're finished with the pred. If your dr hasn't started another med (like verapamil), you shouldn't have any problems with the kudzu. A week might be plenty of time for the kudzu to start working. The most important thing about using kudzu is the timing of the doses. Take your largest dose about 2 hours before your worst attacks. Don't forget to take it everyday, either. Missing a dose can result in full-on hits.
Good luck, and keep us posted.
pain free wishes, nani |
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Thanks for the quick reply, Nani. I am a little concerned now, because my doctor hasn't started me on any other medicines, and has not mentioned Verpamil at all.
I bought Nature's Way Kudzu and took the three 2-capsule doses yesterday. I felt like I was going to get a headache, but didn't (probably because of the Prednisone, though). The person who helped me find the Kudzu told me that your body builds up resistance, so that I should not take the Kudzu everyday. Do you agree with this statement, or do you think I should just continue to take it everyday. Also, how long should I take Kudzu? In other words, do I take it until my CH bout is over? About Prednisone, how much and how long should I take it for? (The doctor said that after a while there could be side-effects.)
I know these are a lot of questions. I appreciate any help you could provide. Thank you again.
Roberto
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nani
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Re: Whats all the Kudzuuuuuuuu about???
« Reply #98 on: Jun 14th, 2006, 9:44pm » |
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Hi again, Roberto.
Hopefully the kudzu will work as the prevent.
I can't really advise you on the prednisone, because I've always chosen not to use it. Too much can definitely be a bad thing. I hope someone familiar with pred tapers chimes in soon.
Tester experience shows that you'll need to take kudzu everyday, at the same times, in order for it to work well. It appears to work by "blocking" the pain receptors involved in CH. Episodics tend to use it until they are sure that the cycle is over.
Never feel bad about asking questions, OK? That's why we're all here...to help out as much as we can with the knowledge we have ... mostly obtained here
pain free wishes, nani
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munozali
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Re: Whats all the Kudzuuuuuuuu about???
« Reply #99 on: Jun 15th, 2006, 1:12am » |
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I really appreciate your replies, Nani.
To let you know my situation: I didn't have CH for one or two years in a row before this year; my CH cycle started this year earlier than usual, sometime in April (my cycles usually begin in June or July); I seem to still be at the peak of my cycle and I believe excercise and heat can trigger my headaches. The headaches are always on the left side of my head and symptoms are very similar to the ones described by other CH sufferers. The differences for me are the following: my right nostril gets a little stuffy and my right eye usually will tear a bit (not the same side as where the pain occurs); my headaches will usually not wake me up at night, so it seems that if I am able to fall asleep before the beast wakes up, both the beast and I will stay asleep. On the other hand, I never sleep a full night anyway, and can get a mild headache if I awake at night.
Today was my second day on the Kudzu. We'll see what happens once I am off the Prednisone. I also read more about other remedies that people are trying, and today I bought a vitamin B complex and melatonin. I couldn't find B-2, though. I have also been trying Magnesium, but haven't noticed any difference yet.
A specific question about Kudzu: Does anyone know if Kudzu can cause constipation? I haven't had bowel movements for three days now, even with all the water I have been drinking!! If it is not the Kudzu, maybe the Magnesium??
Any input will be appreciated as always.
Take care, everyone. I hope you all have a pain free and uninterrupted good night sleep.
Roberto
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