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Redd
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Alternative
« on: Apr 28th, 2007, 10:53am » |
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I've broken my last PF record...
Today will be a full 36 days without a full blown Hit. I'm in the middle of what should be my "high cycle" still, as I still shadow, the left nostril will run on a clock work schedule, and I have the wake up calls at night, but they are PF.
My stratagy started out with weekly doses of RC seeds (25 seeds) for three weeks, with the 4th week being a very mild dose of shroom tea as a booster starting the second week of March when activity shot back up. During the month of March I had a total of 5 high (8-9) Kips during the first week, 3 during the second week, and 1 kip 6 the Tuesday morning of week 3 and then nothing but various levels of shadows.
I have since cut back to doses of RC seeds (25 seeds) every other week, and mixed between them, one very mild shroom tea. I've taken a vacation day Monday to strike a final blow to the beast with a stronger tea.
I've had a few stress related moderate migraines the last two weeks since my last dose of seeds, that have lasted days...the stress is work related. My hope is that Monday's booster shot will put an end to this CH high cycle and take care of the migraines as well.
Over all it's been the easiest high cycle since being Dx, not a single lost day of work, and only one hit during work hours that Tuesday Morning.
I am not comfortable saying I'm no longer chronic, when all other symptoms are present of a cycle, but rather I assess the situation as having effectivly found a way to "block" the pain while still being in cycle.
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Brew
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Re: Alternative
« Reply #1 on: Apr 28th, 2007, 10:58am » |
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Wow! This is outstanding news, Pegg! Keep goin'!
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andrewjb
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Re: Alternative
« Reply #2 on: Apr 28th, 2007, 11:37am » |
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 , great news. long may it last. andrew.
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Chillrmn1
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Really great news! Glad for you Pegg.
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BB
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Re: Alternative
« Reply #4 on: Apr 28th, 2007, 5:47pm » |
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Thats fantastic Redd 
Hopefully it will keep working and keep the beast away for good for you. 
Is this the first time you dose?
Annette
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ClusterChuck
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Re: Alternative
« Reply #5 on: Apr 28th, 2007, 8:10pm » |
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WOOHOO, Pegg!!!
That is OUTFUCKINSTANDING!!!!!
You REALLY deserve this break, hun!!! I hope it lasts forever, now!
Chuck
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Redd
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Re: Alternative
« Reply #7 on: Apr 28th, 2007, 9:53pm » |
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on Apr 28th, 2007, 5:47pm, BB wrote:
Thats fantastic Redd
Is this the first time you dose?
Annette |
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I've been busting for 2 years now. I am however a long time chronic, so it's taken alot of dilligent work to get this far.
I'm not comfortable with larger doses, which may work better, as I have no "babysitter" (if you've read much of the CB site).
It's also been observed that chronics are harder to treat even with this route. I would want to add that in my opinion the length of being chronic may also play a role. I was chronic for 20+ years, but misdiagnosed.
My chicken-shite approach has probably bought me more pain than I would otherwise have had, but as I mentioned I don't have a babysitter, and I've had to dose at very low levels with my kids home. I won't subject them to an impaired Mother. The beast is one thing..
If nothing...I'm stubborn...and persistant. It's paying off. Now if I should find a good baby sitter in the meantime...you can bet I'd hit the f*cker with something harder...but alone I just can't and won't chance it.
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sailpappy
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Re: Alternative
« Reply #8 on: Apr 28th, 2007, 10:28pm » |
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 I have to give all you Cluster Busters my deepest respect, I have faced so many disappointing approaches to this chronic inigma, that I just don't have the Courage to try this approach, yet?
Facing the Deep Brain Stimulation as an alternative just might boost the desire to try any approach other than surgery of any kind, especially Brain, dont know if they would be able to locate one in my case!
Kudo's for you Sis! John
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BMoneeTheMoneeMan
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Re: Alternative
« Reply #9 on: Apr 28th, 2007, 11:30pm » |
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Thats really great Pegg. I am so happy for you.
I think I am going to dose tomorrow. I should have 2 weeks ago, but finding time is hard.
Can you tell me, do the RC seeds impair you? Do you get 'high'? I have never done them before, but i have some and might do them as a follow up to tomorrow's dose.
Thanks, and congrats on the PF time. At this rate, we are going to have to promote you to supporter.
B$
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Redd
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Re: Alternative
« Reply #10 on: Apr 28th, 2007, 11:30pm » |
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Pappy...my dear...
I can't make any choices for you I can only give my own personal experience. Surgery wasn't ever an option for me as I was newly Dx, only a bit over 3 years ago, but with no insurance, and pocketing all costs, I had to find some way out of the hell I was enduring.
The last cocktail I was on was Verap and topomax with obviously limited access to trex injections, with marginal improvement in frequency and intesity of attacks, but marked derioration of my mental functions. It wasn't 9at the time) the CH that had my job in jeapordy but my inability to function mentaly. Dopymax was NOT my friend in the workplace.
Only you can say what is right for you. But if I had all options available to me..I'd still have chosen this way. As I said I'm stubborn, and I survived believing the misdiagnosises for many years, survived after knowing there is no "cure" and survived when all hope seemed lost. I knew I could yet survive while I gave a different approach to what could be a path to a pain free life.
Although a gaurded and "slow" approach...I've seem makerked improvement. Over two years the PF time has been getting longer and longer, and my knowlege of how my body is responding is getting better. I'm becomming more aware of (for lack of a better term, precursor,) symptoms prior to getting into a full blown whirlwind. Thats a step or ten in the right direction. I'm not "there" yet, at least not by my measure. When I get "there" I'll certainly let everyone know. should it happen. But for now this is the best it's been in a long time, and I'm not going to say it won't get worse again, it certainly could. But....I've seen progress more than any other traditional method thus far.
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I saw an act of faith today. A man was on his knees, not in a pew in a Church, but in a garden planting seeds. ~~Unknown
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BB
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Re: Alternative
« Reply #11 on: Apr 29th, 2007, 1:29am » |
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Thanks Peg,
So with your method, you dose with lower dosage but more frequent and you persist for longer?
How many times over the 2 years period that you have used shrooms or RC seeds? does the effect of each dosing get stronger with time ?
Has it affect your mood in any way?
Thanks for the information.
I am so glad it has worked well for you
Annette
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sandie99
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Re: Alternative
« Reply #12 on: Apr 30th, 2007, 2:46am » |
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Pegg,
that's just fantastic!!!!!
I'm so happy for you!
Wishing lots of PF time,
Sanna
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"Do what you can and let God take care of the rest. Leave your heart wide open and always wish for the best" (Sanna Hillu)
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Sandy_C
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Re: Alternative
« Reply #13 on: Apr 30th, 2007, 2:49pm » |
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Oh, Pegg, that's great news! I'm so happy you are finding relief with the seeds and your "tea". Sounds like you have found a combination that is working for you. Fantastic!
I swear by rc seeds, and will be dosing again tonight. My last dose was 21 days ago, but for the last two nights, I've had some pretty heavy shadowing at my usual "witching hour", so it's 30 seeds for me tonight.
B$ - I can't speak for anyone else, but no, I've never gotten I would call high, even with 30 seeds. The most I have ever felt was a little "floaty" and that happened only once when I opened a new batch of seeds. Usually I just feel very calm and serene - altogether, quite pleasant - and, I sleep like a baby.
Sandy
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Redd
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Re: Alternative
« Reply #14 on: Apr 30th, 2007, 3:24pm » |
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My mantainance dose of tea today, while stonger than my usual doses, brought some mild but pleasant color visual patterns and a "deeper" perception of the sounds and sights of the wildlife. Seeds have never done more than as Sandy mentioned, a serene and calm frame of mind, slighty frisky.  Oh well.
No post dose hits, and with the time having passed and senses are totally clear feeling very good indeed.
There are even storms just a few miles to the south, and that has always been a major trigger for me, but I feel nothing but a bit of stuffed up sinuses, but that could easily be due to the spring allergens that are abounding right now.
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I saw an act of faith today. A man was on his knees, not in a pew in a Church, but in a garden planting seeds. ~~Unknown
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Guiseppi
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Re: Alternative
« Reply #15 on: Apr 30th, 2007, 3:36pm » |
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Redd I'm so happy for you. I retire in 2010 and will be looking at the alternative options then. I get so excited when I see posts like yours on how well they work! Lord knows you were overdue for a break! Go play with your kids with a smile on your face and NEITHER eye drooping!!!!
Guiseppi
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Rosybabe
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Re: Alternative
« Reply #16 on: Apr 30th, 2007, 4:05pm » |
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Good for you Redd!!
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Redd
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Re: Alternative
« Reply #17 on: Apr 30th, 2007, 4:16pm » |
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on Apr 29th, 2007, 1:29am, BB wrote:
Thanks Peg,
So with your method, you dose with lower dosage but more frequent and you persist for longer?
That is correct
How many times over the 2 years period that you have used shrooms or RC seeds? does the effect of each dosing get stronger with time ?
I don't document the CH or anything anymore, so I couldn't give you a count of "how many times". I stopped keeping a HA diary a long time ago. To much focus on the negative in my opinion by writing everything down. The PF times does get longer over all with each dose, but there are times of backward movement when either a missed dose, or a high activity cycle pops up, and then it takes some extra dilligence to get the beast back in his cave.
Has it affect your mood in any way?
Overall, my "mood" have been more positive as I'm enjoying the PF time and have a better overall quality of life. So the answer is YES it has, and for the better. There are many other busters that can attest to the fact that I really struggled with making this decision back at the time. But I'm now very happy that I did.
Thanks for the information.
I am so glad it has worked well for you
Annette |
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I saw an act of faith today. A man was on his knees, not in a pew in a Church, but in a garden planting seeds. ~~Unknown
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BB
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Re: Alternative
« Reply #18 on: Apr 30th, 2007, 6:04pm » |
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Thank you very much Peg for your reply.
Its great to be able to hear the first hand experience of someone who has done it. It gives a much clearer picture.
Wishing you all the best and hope this will continue to work for you always.
Hugs
Annette
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pieface_49
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Re: Alternative
« Reply #19 on: Apr 30th, 2007, 10:30pm » |
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Thank you for the post Peg(g?). Chuck said it better than I can. Your post will help me make some possible future decisions. Even more importantly, it is nice to hear good news. Puts a smile on my face
John,
I can only sympathize with you. I do not think I am chronic. I know many have responded in other posts. What I am posting is only what I have read.
Quote:| At present, among the five patients who were implanted and stimulated two are totally pain-free, one has relief with fewer than three attacks per month and one has had transient remissions; none of them is taking prophylactic medications. All patients improved within 2 weeks after the operation, but improvement was definitive in only two patients. One patient died shortly after implantation. The average follow-up time is 14.5 ± 1.5 months. |
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This refers to hypothalamic stimulation.
http://brain.oxfordjournals.org/cgi/content/full/128/4/940
I think this refers to the same study.
http://www.pslgroup.com/dg/25a456.htm
This study suggests 10 of 10 patients have been successfully treated with hypothalamic DBS. There has to be something different in their technique? Maybe someone can make clear what the difference in techniques are?
Quote:| All the patients experienced rigorous improvement in headache frequency after hypothalamic stimulation was initiated: eight of the investigated 10 patients were completely pain free and the remaining two suffered only from sporadic attacks. Notably, it takes several days, or even weeks, between turning the unipolar stimulator on or off and observing a change in the clinical picture (Franzini et al., 2003Go). None of the patients experienced any adverse side effects or headache symptoms during the scanning. |
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http://www.jneurosci.org/cgi/content/full/26/13/3589
Once again, I will post a recent study. This study concerns ONS (Occipital Nerve Surgery):
http://www.medicinenet.com/script/main/art.asp?articlekey=79726
Donnie
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ClusterChuck
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Re: Alternative
« Reply #20 on: May 1st, 2007, 12:43am » |
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on Apr 30th, 2007, 10:30pm, pieface_49 wrote:| I can only sympathize with you. I do not think I am chronic. |
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Ya faker!!! According to your OWN admissions, you haven't even been properly diagnosed, except by yourself. Your recent examinations have refused to say you have cluster headaches.
Quit trying to put yourself as an expert.
You keep posting links, that many times are totally inappropriate, or inaccurate. Hell, you have even posted a supposidly learned article from a guy that was trying to sell a phony "cure" ...
Go troll some other site, and quit trying to mislead those that don't know what an idiot you are.
Chuck
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pieface_49
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Re: Alternative
« Reply #21 on: May 2nd, 2007, 9:11pm » |
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on May 1st, 2007, 12:43am, ClusterChuck wrote:
Ya faker!!! According to your OWN admissions, you haven't even been properly diagnosed, except by yourself. Your recent examinations have refused to say you have cluster headaches. |
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Chuck, I really do not know what to say. You must go to bed with me in mind? I would think you know the analogy, "living in someones mind rent free"? What is really sad is you have no idea what my medical history is! If I let you bother me from the beginning, I would have left a long time ago. I have not left because this insidious illness has taken a major toll on my life. How the hell you can tell someone they do not have an illness is beyond me. I will admit I am not 100% positive I have CH. That answer will come when the next cycle comes. Somehow I managed to get a script for O2, Imitrex and Verap?
Quote:| Quit trying to put yourself as an expert. |
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There is an almost obsessive desire to learn and understand what is wrong and what I can do about it. For 4 years I took all the wrong medication and received absolutely no help from the medication nor the Doctors. For 4 years the suffering has taken me to a place I never want to be again. It is imperative (suicidal thoughts during bad episodes) I learn all I can. I am just a person trying to stop that from happening and live a so called "normal" life.
Quote:| You keep posting links, that many times are totally inappropriate, or inaccurate. Hell, you have even posted a supposidly learned article from a guy that was trying to sell a phony "cure" ... |
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I make mistakes and admit I made a big one by attempting to be funny in another post. It was really STUPID to say I would rather suck on a lidocaine patch rather than pasting it on my forehead during an episode. The article about the capsaicin spray seemed sincere. I apologized for not recognizing the author had something to do with "Sinus Buster" which was only listed at the end of the lengthy article. My point is that no matter how trivial something might be, you will pick it out and blast me. If I have done something to you personally, I can understand your having a hardon (no pun intended) for me. Even here, you have something to say. Oh, I forgot, you poot.
http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=general;acti on=display;num=1177162554
Here I simply ask if anyone has experienced fuzzy vision and off to the races you go.
http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=chspecific;a ction=display;num=1176560018
There are many, many other instances. Not going to waste any more time than I already have. All the above said, I do thank you for some guidance you have given me.
Donnie
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ClusterChuck
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Re: Alternative
« Reply #22 on: May 2nd, 2007, 9:41pm » |
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on May 2nd, 2007, 9:11pm, pieface_49 wrote:| What is really sad is you have no idea what my medical history is! |
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You're absolutely right! I can only go with what you have told us, and that keeps changing from post to post!
on May 2nd, 2007, 9:11pm, pieface_49 wrote:| I would have left a long time ago. |
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Don't let the door hit you, on the way out.
on May 2nd, 2007, 9:11pm, pieface_49 wrote:| I will admit I am not 100% positive I have CH. |
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FINALLY an intelligent statement!
on May 2nd, 2007, 9:11pm, pieface_49 wrote:| Somehow I managed to get a script for O2, Imitrex and Verap? |
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Not at all surprising. MANY times doctors prescribe the wrong thing. They are not perfect.
on May 2nd, 2007, 9:11pm, pieface_49 wrote:| If I have done something to you personally, I can understand your having a hardon (no pun intended) for me. |
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What you have done is changed your story so many times, we don't know what is true anymore. The BIGGEST problem that I have with you, is you may be influencing some new people, and leading them down the wrong path! THAT is what is so dangerous about your posts.
I am sorry you have pain (supposidly). Pain of any type sucks. BUT, before proper treatment can be given, proper diagnosis, BY PROFESSIONALS must be done. That has not happened to you, by your own admission.
Find out what is truely wrong with you, before putting yourself as an expert.
Chuck
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Redd
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Re: Alternative
« Reply #23 on: May 3rd, 2007, 7:01pm » |
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41 days....
still counting...
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I saw an act of faith today. A man was on his knees, not in a pew in a Church, but in a garden planting seeds. ~~Unknown
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Erika
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Re: Alternative
« Reply #24 on: May 3rd, 2007, 10:19pm » |
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ok - I hate to sound stupid and perhaps I already read the answer and it got scrambled by the overwhelming amount of information on here, but.... what are RC seeds? I have never heard of them.
Not that we are going to try this approach yet, I am just curious.
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