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Title: Kudzu Part Deux (Updated) Post by ozzy on Sep 19th, 2005, 8:09am Started taking Kudzu? Were you taking triptans, O2, nothing? I'm more interested to hear if your were taking triptans when you started taking kudzu. As some of you may know. Kudzu worked fantastically good for me, but it has stopped working for me due to a screw up in my part. Now I'm getting hit pretty good (or bad) and I'm making do with O2 and Imitrex. Hate the Imitrex, need to wait a while before I try Kudzu again. It has to work, I really, really, really, really want it to work again. I want my life back! Ozzy |
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Title: Re: What were you on when... Post by Redd715 on Sep 19th, 2005, 8:32am I hate to hear this Ozzy. It's alway a depressing thing when what worked so well just stops working. I'm sure others will here with their Kudzu experiences, so take heart ok Hon? Be good to yourself in the meantime. Pegg |
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Title: Re: What were you on when... Post by E-Double on Sep 19th, 2005, 8:49am Sorry brother!!!!! |
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Title: Re: What were you on when... Post by ozzy on Sep 19th, 2005, 8:53am Thx guys. ER trip on Saturaday wasn't fun, but neither it is a K10 for four hours. WTF!! I mean WTF!! I was doing so great and now this. Eric, quick question, you're going to NECH, right? Do they still use the Amergem twice a day as a preventative? I need to instruct my Neuro on what route to take. He is not very well versed in CH, but will work with me Any thoughts? ozzy |
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Title: Re: What were you on when... Post by E-Double on Sep 19th, 2005, 9:23am on 09/19/05 at 08:53:28, ozzy wrote:
I haven't gone that route though Dr. Sheftell did mention that in our discussions. I take 560 verap. & 150 of Lithium 2x. I do occasionally use imitrex though I prefer Zyprexa at this point. Actually niether are working as well as they did but Zyprexa is kinder to my system and if it works it is as quick for me as a trex injection. I have also used Zyprexa as a preventative @ night before bed when I was having or knew that it will be a rough night. I feel ya with the ER visits. Had a rough one in April and was pretty close 2 weeks ago but made it through without going. Sorry dude, wish I had more for ya! E ps if ya need extra inj. let me know |
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Title: Re: What were you on when... Post by Roxy on Sep 19th, 2005, 9:31am Hey ozzy....sorry it's going so bad for you right now. My neuro is starting me on Provigil. I haven't actually taken any of the meds yet....when she wrote my script I stuck it in my purse and then never saw it again. I called her office when I got home and had the usual...leave a message and we'll call you back. We played phone tag for a week......then the hurricane hit. My doctor was in downtown New Orleans.... :-/. Yesterday I just ordered some from a pharmacy online, I remember the dosage, so I'll be giving it a shot when the mail delivers. As always......I'm hopeful, but I'm not going to hold my breath. I'll let you know how it goes. Why don't you talk to your doc about switching from Trex to Zomig nasal. The Zomig seems to last a much longer time. Love, T |
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Title: Re: What were you on when... Post by ozzy on Sep 19th, 2005, 9:41am Thx. I definetely want to switch from Trex. That stuff is evil. Zyprexa seems kinda scary, most drugs are, anyway. Zoimg nasal is one route, Amerge, I remember worked nicely. Still waiting for the nurse to call back. Provigil... Still reading up on it...can cause nervousness...If it does Tracy, try L-Theanine, it's an amino acid extract of green tea. green tea is Floridian (TM) approved. Ozzy |
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Title: Re: What were you on when... Post by E-Double on Sep 19th, 2005, 9:53am I hear ya about Zyprexa appearing scary. Honestly, such a small amount is used that nothing funky happens. It's not like taking some of the other meds as preventatives. Used as an abortive it's cake. Good luck with everything!!! |
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Title: Re: What were you on when... Post by ozzy on Sep 19th, 2005, 10:05am How much Zyprexa do you take as an abortive? I'm keeping all my options open. I have an extremely important data collection job scheduled for tomorrow night and the next day (Tue and Wed). I am the project manager and I *have* to be there, so I want to go the Amerge route...I think. Well I don't know what to think really. I really want to find the magic natural supplement that will work for another 6-8 months again. (For those of you thinking "duh!" there is always *the one*, I know, believe I know) So back to the original question, was anyone taking triptans when they started Kudzu? Ozzy |
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Title: re: What were you on when... Post by Melissa on Sep 19th, 2005, 10:15am Well, I'm no help. I wasn't on anything when I started the 'zu, and I don't even know if I'm in cycle right now other than having a few shadows here and there each day. They are so short lasting. :-/ Anyway, I too, have a bunch of trex that I hate taking, so when I do either go into cycle, or my ch's break through, I'm definately asking for the zomig myself. i'm sorry Oz :( mel |
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Title: Re: What were you on when... Post by Frank_W on Sep 19th, 2005, 10:40am Damn... Sorry to hear that, Ozzy. Kip 10 for four hours sounds utterly hellish... I'd made up my mind to go "bare knuckles" through my last cycle, when Nani and Floridian began discussing kudzu, so I thought, what the hell... give it a shot and see what happens... |
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Title: Re: What were you on when... Post by nani on Sep 19th, 2005, 12:29pm :'( Ozzy, I'm so sorry you're having such a bad time. I was only on verap, lithium and Neurontin when I started the 'zu. I'm curious if you found this, too. When the kudzu stopped working for me, I was getting hit harder than I had been before kudzu. I always knew I had it relatively easy, most of my hits were about a k5 (except when I was in a "cycle" within my chronic-ness) When I got hit post-kudzu, they were up to 7s and 8s. I hope you find something quick and effective. hugs and PF wishes, nani |
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Title: Re: What were you on when... Post by ozzy on Sep 19th, 2005, 12:50pm Nani, Tha is exactly right. After kudzu my hit have been nastier than before kudzu. I can't even attribute the intesnsity to Imitrex, since I just started again on Trex after Saturday's monster hit. It seems at most all we do is supress the pain for so long, only to release all that stored energy at some point with longer more intense hits. Sounds like science fiction, but it rings all so true. Ozzy |
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Title: Re: What were you on when... Post by nani on Sep 19th, 2005, 1:03pm on 09/19/05 at 12:50:59, ozzy wrote:
Yup, that's what I was thinking. So there must be some fundamental difference between chronics and episodics, since they don't seem to experience that. On another thread, Margi likened it to closing the pain receptor gate. In episodics, it closes firmly at the end of a cycle. In chronics, it seems the latch is broken. So, a constant level of kudzu is like duct tape, I guess. :-/ |
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Title: Re: What were you on when... Post by E-Double on Sep 19th, 2005, 1:52pm on 09/19/05 at 10:05:50, ozzy wrote:
5mg. pills I cut then in half, so 2.5mg I have taken 5mg though. It is not nearly the amount recommended for someone needing it to control psychotic outbursts. I can not report any adverse effects other than a 5 minute space out that I had the first time I took it. I can tell you that when it works I am completely pain free after. I have never experienced that with any triptan nor oxygen. Hang in there brother! |
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Title: Re: What were you on when... Post by ozzy on Sep 20th, 2005, 9:37am I have an appointment with my Neuro today. That's one thing that is great. I'm going to lay out my history for these past two years since I saw him last. I'll present to him all the alternatives that I know (and I mean ALL) and will decide together about the best course of action. I may not agree with it, but who knows. At least I'll be able to get some samples and be as PF as possible for tonight's and tomorrow night's work. Imitrex NS is rapidly failing me. Takes longer to act. Ozzy |
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Title: Re: What were you on when... Post by Lizzie2 on Sep 20th, 2005, 9:59pm Hey Ozzy, Sorry to hear that you're having problems again. :( Was hoping the Kudzu would help you for a long long time! Dr.Sheftell does use the Amerge in preventive fashion, but for chronic daily headache types such as my other headache type. Been trying to convince the folks at Jefferson to let me do this, but they're not convinced it's safe and won't cause rebound... :-/ Amerge and frova are my best friends LOL Frova keeps the beast back for several hours - I imagine if I took it again after 12 hours or so, it'd probably keep most of the hits away, but I only have 18 Frova/month, so I'm rather selective as to when I use it. I went the Zyprexa route - took 2.5 mg, 5mg, and 10mg at some point along the way - never once I had CH, though. The 2.5mg never affected my daily headache one bit. The 5 and 10mg really wiped me out...10mg was the killer....I'd sleep for hours and hours....which can be fine at times....sleep for those of us who never sleep. Eventually that's what I used thorazine for...just to get some crash time because I was never sleeping. I was switched from zyprexa to thorazine some time ago, but I no longer take either one. So abortive-wise, I rely on O2, Amerge, and Frova. I do have ultracet and sometimes the combo of ultracet and amerge works the best for me, although I'm hesitant to do that very often. Tomorrow's my neuro visit. Just went to ENT yesterday and the ENT said my sinuses have recovered nicely, even though I still can't breathe and currently have almost no voice LOL But...I guess I will tell the neuro that perhaps it's time to give the kudzu another run if the sinuses are healed well enough. I still can't go off the other things I take, so in some ways it does make me nervous, but so far it's the only thing that helped for all my headache types.... Hope you get some relief!!! Lizzie2/Carrie :) |
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Title: Re: What were you on when... Post by ozzy on Sep 21st, 2005, 9:16am Had my Neuro's appointment. For someone that had basically sworn off doctors, I felt strangely comforted by just being there. After exchanging pleasantries (our daughters went to preschool together) I had to give the nurse the history of what has happened in the last two years. I told them. The doctor was pretty impressed by the results obtained with non-prescription therapy. He thank me for the printout I gave him on Kudzu (thank you floridian) and said he will keep it mind for his patients. We talked at length, and I laid out all the possible treatment otions and wanted to hear what else he could come up with. One of the things he came up with was Petadolex (butterbur, withou the liver toxic components, once again according with floridian). The interesting thing about this COX2 inhibitor (yeah, I know like Vioxx, only not as strong), so the interesting thing as I was saying is right before he came in the room, I was thinking that what we CHers need is to have better "smooth muscle tone", a way to strengthen the smooth muscle that surrounds our blood vessels. All the abortives basically contract the expanded vessels, then they wear out and "poof" the expand again.....ow, ow, ow, ow.... So on the box of Petadolex it says "for healthy blood vessel muscle tone"...talk about coincidence, synchronicity, act of God, dumb luck, chance, whatever. So the plan is: Pred pack for 6 days to cut the frequency. Amerge twice daily for preventative O2 as abortive (BTW it works again whooohooo!!!) Butterbur as a preventative (?) This should give a few months and then I can go back to Kudzu He said sometimes medicine stops working like that (I guess it has to do with downregulation) and that medicine holidays are a good idea. Well that's the plan anyways. I'm happy, let's see how it works. Ozzy |
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Title: Re: What were you on when... Post by nani on Sep 21st, 2005, 9:34am I'm glad you're feeling good about your visit, ozzy. :) Let us know how things go, OK? Don't you love it when a dr has an open mind? hugs, nani |
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Title: Re: What were you on when... Post by lionsound on Sep 21st, 2005, 7:53pm Hey Ozzy, sounds like you had a good appt. I'm glad you felt comfortable...that's a huge bonus. I hope you new plan works for you! Be well and PF! -lionsound |
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Title: Re: What were you on when... Post by ozzy on Sep 22nd, 2005, 9:50am Thanks, The Amerge with the prednisone and the butterbur are working somehow. Last night along with all that, I had my melatonin and L-theanine. Had a full night sleep (7 blessed hours). I'm beyond myself. Nice. Will keep updating. Ozzy |
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Title: Re: What were you on when... Post by E-Double on Sep 22nd, 2005, 10:54am Sweet! |
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Title: Re: What were you on when... Post by TxBasslady on Oct 2nd, 2005, 12:16am Ozzy, I sure hope this works for you, sweetie. About the Kudzu....I did another Pred taper in January. I got 42 pf days from the taper, but the CH returned on day 43. I started the Kudzu (Nature's Way) within a couple of days of the return of the CH. That was Feb 24, 2005. I'm still taking it, with very good success. I should have started my cycle around August 10th, and I did suffer a Kip10 that day....but the cycle never came about. I've had a few shadows...but nothing to complain about since that hit on the 10th of August. I do take the Kudzu faithfully....I have never missed a day or a dose. I know it worked for you for a while....and I sure hope it'll work for you again. In the meanwhile..good luck with the meds. Much love to you, sweetie Jean |
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Title: Re: What were you on when... Post by ozzy on Oct 3rd, 2005, 8:36am Ok, Here is my updated after a week: I was taking the Medrol taper and that seems to have slowed down the CH. It didn't go away, but it slowed down. At the same time I was taking Amerge in the AM and another in the PM as a preventative. Around that time I was taking also the Pedadolex (Butterbur) and Kudzu. Butterbur, didn't seem to have an effect. Now onto more important science. I noticed that Kudzu and Amerge seem to sort of counteract each other, neither one overpowers the other one. Very Important point: I noticed that Kudzu was working as soon as soon as the horrible gas came back, like in the very early days. (If you've taken kudzu, you'll know what I'm talking about) At this point I decided to forego the morning Amerge and just use kudzu during the day. It's been three days on this routine and it seems to be effective so far. I still chicken out to do without at night. I kind of need to recuperate and get back some sleep. Very Important point #2: Has anyone else noticed if kudzu affects the effectiveness of O2? To me it seems like after I started on kudzu, O2 stopped wiorking. Before it, during that in-between period. a 5 min job, did the trick. Now, I can stay on it for 30 mins. and nothing. Enjoy Ozzy |
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Title: Re: Kudzu Part Deux Post by Jeepgun on Oct 3rd, 2005, 9:59am Outstanding, Ozzy. I have no experience with O2, so I can't help you with that, but I'm just glad that you're free of pain. Hang tough. Congrats on the nice visit with your neuro, too. Sounds like you've got a winner. |
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Title: Re: Kudzu Part Deux Post by nani on Oct 3rd, 2005, 11:22am I can't say I miss the gas, LOL. I wonder if the Amerge and kudzu don't counteract each other because of the length of time between the doses? I'm happy to hear that kudzu may still work for me at some point in the future. I sent the last little bit of my O2 back about 2 weeks after starting kudzu (in hindsight...that was brave), so I couldn't tell you whether it made a difference with the efficacy of the O2. It only works about 75% of the time for me normally. I'm glad to hear you're getting a break, honey. Keep us posted, OK? hugs, nani |
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Title: Re: Kudzu Part Deux Post by Major on Oct 3rd, 2005, 12:40pm Hi there, I thought I'd post about my husbands experience with kudzu, as it stopped working for him too. He started using it in Feb, and had excellent results. He tried tapering off a few times, probably once every six weeks or so since May as the ha's were non-existent while he took the zu, but as soon as he stopped, they came back. In August, when he tried to restart kudzu, it just didn't work. He took it for two weeks, and it didn't make a dent. As for 02 counteracting kudzu, in the early days (ie., back in Feb when he first started taking it), he used 02 and it worked great for aborting. But after about a week or so, he didn't need to use it at all because the ha's were not happening. We held on to the tank for another while just for insurance, but then like Nani, we too got brave and sent it back. On the triptan front, he only used imitrex ns a couple of times during that early period in conjunction with kudzu. The trex did its job even with the kudzu. It has been more than six weeks since he last took kudzu - maybe he should start it again too. |
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Title: Re: Kudzu Part Deux Post by ozzy on Oct 4th, 2005, 8:40am Last night I got hit once and once this morning, about 12 hours apart. O2 didn't work, but since I want to see how effective Kudzu is about keeping the hits at bay, I am not using the very effective (and longer half life) Amerge. I have only used Imitrex NS. So far so good. The hits are greatly reduced. I mean from 4-5 a day to 2. I'm happy. The weather is not helping, there is a front parked in the area, That I hope will leave soon... I'm still hopeful and optimistic. Kudzu will work again. Ozzy |
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Title: Re: Kudzu Part Deux Post by ozzy on Oct 18th, 2005, 8:24am I'm almost back to normal and there is hope for those for whom Kudzu failed. After a month or so break, it seems it is working again. I get hit now and then, but nothing like a month ago. I just have to make sure I keep up with the schedule. I even had a couple of beers on Saturday. I didn't get immediately hit, but it is starting to work and I'm happy. Ozzy |
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Title: Re: Kudzu Part Deux (Updated) Post by E-Double on Oct 18th, 2005, 1:12pm AWESOME!!!!!! Beer is good ;) |
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Title: Re: Kudzu Part Deux (Updated) Post by javi_spain on Oct 22nd, 2005, 7:11am Ozzy, Good luck! Javi |
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Title: Re: Kudzu Part Deux (Updated) Post by ozzy on Oct 24th, 2005, 8:09am Yes beer is good indeed! You know like I said I'm not 100% yet. Alcohol will still make the Kudzu not work so good, work less better, anyway, I get strong extended shodows, until I get fed up and take a trex NS and I'm done with. Still take kudzu three times a day the rest of the time, if I forget, I get hit, hard. If I'm not stupid. Then I don't. Such is life. Ozzy |
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Title: Re: Kudzu Part Deux (Updated) Post by Redd715 on Oct 24th, 2005, 8:41am We know you aren't stupid Ozzy, but we are all "forgetful" at times. Nature of the Beast in every shape and form. Glad to hear the improvement is back. Pegg |
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