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Topic: Kudzu Part Deux (Updated) (Read 1157 times) |
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ozzy
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Kudzu Part Deux (Updated)
« on: Sep 19th, 2005, 8:09am » |
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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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Redd
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Re: What were you on when...
« Reply #1 on: Sep 19th, 2005, 8:32am » |
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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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Re: What were you on when...
« Reply #2 on: Sep 19th, 2005, 8:49am » |
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Sorry brother!!!!!
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ozzy
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Re: What were you on when...
« Reply #3 on: Sep 19th, 2005, 8:53am » |
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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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E-Double
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Re: What were you on when...
« Reply #4 on: Sep 19th, 2005, 9:23am » |
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on Sep 19th, 2005, 8:53am, ozzy wrote: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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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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Roxy
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Re: What were you on when...
« Reply #5 on: Sep 19th, 2005, 9:31am » |
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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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ozzy
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Re: What were you on when...
« Reply #6 on: Sep 19th, 2005, 9:41am » |
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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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E-Double
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Re: What were you on when...
« Reply #7 on: Sep 19th, 2005, 9:53am » |
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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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I can't believe that I have to bang my
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But the blows they have just a little more
Space in-between them
Gonna take a breath and try again.
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Re: What were you on when...
« Reply #8 on: Sep 19th, 2005, 10:05am » |
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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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Melissa
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re: What were you on when...
« Reply #9 on: Sep 19th, 2005, 10:15am » |
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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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Jeepgun
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Re: What were you on when...
« Reply #10 on: Sep 19th, 2005, 10:40am » |
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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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nani
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Re: What were you on when...
« Reply #11 on: Sep 19th, 2005, 12:29pm » |
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 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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ozzy
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Re: What were you on when...
« Reply #12 on: Sep 19th, 2005, 12:50pm » |
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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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nani
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Re: What were you on when...
« Reply #13 on: Sep 19th, 2005, 1:03pm » |
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on Sep 19th, 2005, 12:50pm, ozzy wrote:
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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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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Re: What were you on when...
« Reply #14 on: Sep 19th, 2005, 1:52pm » |
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on Sep 19th, 2005, 10:05am, ozzy wrote:How much Zyprexa do you take as an abortive?
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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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I can't believe that I have to bang my
Head against this wall again
But the blows they have just a little more
Space in-between them
Gonna take a breath and try again.
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ozzy
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Re: What were you on when...
« Reply #15 on: Sep 20th, 2005, 9:37am » |
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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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Lizzie2
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Re: What were you on when...
« Reply #16 on: Sep 20th, 2005, 9:59pm » |
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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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ozzy
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Re: What were you on when...
« Reply #17 on: Sep 21st, 2005, 9:16am » |
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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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nani
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Re: What were you on when...
« Reply #18 on: Sep 21st, 2005, 9:34am » |
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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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Re: What were you on when...
« Reply #19 on: Sep 21st, 2005, 7:53pm » |
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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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ozzy
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Re: What were you on when...
« Reply #20 on: Sep 22nd, 2005, 9:50am » |
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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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Re: What were you on when...
« Reply #21 on: Sep 22nd, 2005, 10:54am » |
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Sweet!
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I can't believe that I have to bang my
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But the blows they have just a little more
Space in-between them
Gonna take a breath and try again.
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Re: What were you on when...
« Reply #22 on: Oct 2nd, 2005, 12:16am » |
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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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ozzy
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Re: What were you on when...
« Reply #23 on: Oct 3rd, 2005, 8:36am » |
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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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Jeepgun
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Re: Kudzu Part Deux
« Reply #24 on: Oct 3rd, 2005, 9:59am » |
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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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