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Topic: SUCCESS FINALLY!!! (Read 825 times) |
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Bond007
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SUCCESS FINALLY!!!
« on: Sep 22nd, 2006, 8:21pm » |
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I'm so PISSED!!!!!
(I bet y'all didn't see that one comin'!  )
As many of you know, I saw my neuro a week ago Thursday and all he did was to increase my Topamax. He still wouldn't prescribe any abortive other than the Stadol NS he'd already given me. Oh, except for the Lidocaine. He also talked about possible doing a spinal tap thinking that perhaps my HA's could be caused my a viral infection.
OK, fast forward to the following Tuesday. During those few days and while I was titrating up on the Topamax, my HA's had gotten more frequent and more severe, so I called his office and asked him to change my meds because I was in severe pain and the Topamax WASN'T WORKING! That night I had a message that he was calling in a prescription to my pharmacy.
Wednesday, the pharmacy tells me there's some confusion about my script and will I please have my doc call them back and clarify a few issues, which I do without hesitation. I also ask my doc's nurse if this new med is something to replace my current meds or to take in addition to. She tells me it's in addition to. I'm just like "Whatever!". I get back up to the pharmacy later that day only to find out that he's called in Butabitol -- AN ORAL PAIN KILLER FOR A CH SUFFERER!!!! WTF!!!!
I immediately drive over to my GP's office and scream a blue storm to his entire staff, including his wife who works in the office. (We're all very good friends.) Paula looks at me and asks if I'd like an appointment for 4:15 on Friday. I said "Thanks! That's exactly what I needed!"
I fumed all day Thursday and suffered through too many HA's to even count and even more hits of my Stadol than I care to remember, not to mention 2 snorts at bedtime with a Lunesta chaser. Yeah, that's right. I'm quite surprised that I'm even alive to type this today. Thank God!
This morning I was still pissed, but oddly enough completely painfree and thinking relatively clearly. I picked up the phone and called the Mayo Clinic in Jacksonville, FL, gave my relavant info to the extremely nice and caring woman on the phone (I vented to her as well), and she advised me that she would forward our interview on to their neurology department and I'll hear from them in 24-48 hours whether or not I've been granted an appointment in their clinic. I feel so relieved that I've at least taken that first step toward getting some control over my own treatment.
At 4:15 pm I saw my GP, and once again, I vented to him. This time it was much worse as I was in a full-blown CH by that time. I told him I wanted 2 things from him: 1) Oxygen -- I don't care how much it costs, just give me a small portable cannister to try and if it works, then he can write a letter of medical necessity to my insurance company so they'll cover under my Durable Goods policy, and 2) Imitrex in either injections or nasal spray. He shocked the shit out of me when he said "OK"! I had to pick my jaw up from the ground!!!
So, to bring this somewhat of a close, his nurse is working on securing me an O2 cannister with a non-rebreather mask. I'm going to try and find a "cluster masx" (I think that's what I've read about on this site) online and order it. Can someone help me out on that, of that is if you've been able to read this far. And, I picked up my nasal-trex. And you know what? I had an opportunity to use it as soon as I got home tonight and the damn thing worked in about 15 minutes! Completely demolished my CH. Yeah, I'm a little tired, but I'll deal with that any day over the fucking pain.
I'm so FUCKING ecstatic I could cry!!!!! 
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Sometimes life bites you in the ass -- that's what drugs are for!!
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thebbz
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Re: SUCCESS FINALLY!!!
« Reply #1 on: Sep 23rd, 2006, 6:23pm » |
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clustermasx.com
If that doesn't work email me.
Mr. Happy helped with mine.
jb
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| « Last Edit: Sep 23rd, 2006, 6:26pm by thebbz » |
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It wasn't me I didn't do it
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Bond007
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Re: SUCCESS FINALLY!!!
« Reply #2 on: Sep 23rd, 2006, 8:07pm » |
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Thanks! I did eventually google it. Of course, Google corrected my spelling errors and finally got me to the right site. As soon as I hear back from my GP about my O2 tank, that's when I'll get the mask on order. I'm really exicted about trying the O2!
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Kevin_M
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Re: SUCCESS FINALLY!!!
« Reply #3 on: Sep 23rd, 2006, 8:19pm » |
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It is amazing to find something to stop these. You sound like me when I first got the n/s trex a decade ago. Still use them. Keep working on the preventive though, that will be a grateful find too. 
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| « Last Edit: Sep 23rd, 2006, 8:20pm by Kevin_M » |
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Richr8
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Re: SUCCESS FINALLY!!!
« Reply #4 on: Sep 23rd, 2006, 8:30pm » |
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Keep on it bro.. The O2 is a lifesaver for me. It aborts a good 60% of my attacks.
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pf wishes,
Rich
...because yesterday is history and you never know what tomorrow will bring.
"Med free"- A few seeds and lots of O2-LG but not great.
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Barry_T_Coles
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Re: SUCCESS FINALLY!!!
« Reply #5 on: Sep 23rd, 2006, 10:21pm » |
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o2 rocks for me.
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Guiseppi
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Re: SUCCESS FINALLY!!!
« Reply #6 on: Sep 23rd, 2006, 11:02pm » |
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O2 is my friend, I make sure my wife is with me...then make sure the E-Tank is there....almost always in that order! I really hope it works as well for you.
Guiseppi
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kayarr
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Re: SUCCESS FINALLY!!!
« Reply #7 on: Sep 23rd, 2006, 11:25pm » |
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on Sep 23rd, 2006, 11:02pm, Guiseppi wrote:O2 is my friend, I make sure my wife is with me...then make sure the E-Tank is there....almost always in that order! I really hope it works as well for you.
Guiseppi |
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Very honest of you about the almost in that order. 02 is our constant companion. It is a life saver
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Giovanni
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Re: SUCCESS FINALLY!!!
« Reply #8 on: Sep 24th, 2006, 6:27pm » |
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If you're going to use trex the fastest delivery/relief is via injection............doesn't hurt tiny needle. Most people it works less than 5 minutes. Zomig NS another triptan works in about 15-20 minutes, but will prevent another attack usually for about 8-12 hours. Trex doesn't prevent another attack like that WITH ME. Remember can't mix triptans (ie imitrex and Zomig) within 24 or 36 hours from each other.
I have found that over use of the triptans will cause rebounds--a headache at a certain time of day that I had dosed previously.
These results may not reflect everybody's experience, but does reflect mine.
John
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Bond007
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Re: SUCCESS FINALLY!!!
« Reply #9 on: Sep 24th, 2006, 8:40pm » |
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Thanks for the advice, Giovanni. Although, I do know quite a bit about triptans. I've been diagnosed with migraines since I was 22 and have been using them for several years. The trex has never worked for my migraines, so I was concerned about it working for my CH and I was very pleasantly surprised that it did.
Even though I already knew that, I do appreciate your time and concern.
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trsacrtr
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Re: SUCCESS FINALLY!!!
« Reply #10 on: Sep 24th, 2006, 10:17pm » |
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O2 is an absolute necessity and is great at aborting an attack. I have also found that zomig keeps attacks away longer than trex. I sleep using an O2 concentrator and I actually get to sleep  ;;
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chopmyheadoff
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Re: SUCCESS FINALLY!!!
« Reply #11 on: Sep 25th, 2006, 7:36am » |
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get an autoinjector bro !!!
andy
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Giovanni
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Re: SUCCESS FINALLY!!!
« Reply #12 on: Sep 25th, 2006, 9:43am » |
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on Sep 24th, 2006, 8:40pm, Bond007 wrote:Thanks for the advice, Giovanni. Although, I do know quite a bit about triptans. I've been diagnosed with migraines since I was 22 and have been using them for several years. The trex has never worked for my migraines, so I was concerned about it working for my CH and I was very pleasantly surprised that it did.
Even though I already knew that, I do appreciate your time and concern. |
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Have you tried Zomig NS for your migraines?
I gave one to my "former" oxygen delivery guy to try. One day at work he had a migraine attack and was loosing his vision. He then had taken the Zomig that I gave him and before his boss had driven him home the vision returned and the headache was gone. He used it several times thereafter with the same results.
John
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Bond007
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Re: SUCCESS FINALLY!!!
« Reply #13 on: Sep 25th, 2006, 2:28pm » |
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I'll ask my GP about that the next time I see him. Either that or the doc I see at the Mayo Clinic -- hopefully.
Man, am I ever getting slammed today with HA's. Granted, I had a great weekend, but I'm thinking the Beast is punishing me for trying to trick him the last few days. I'm in some serious fucking pain today, gang...... 
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Giovanni
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Re: SUCCESS FINALLY!!!
« Reply #14 on: Sep 25th, 2006, 3:03pm » |
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Sorry about your getting wacked.  I've been going through this since about July 1st......ramped up in August and September has been a killer. I do feel as though mine are starting to deminish somewhat. Hope remission is around the corner for both of us.
When you can I would suggest your trying the Zomig--might work for both of your headache types with longer time between attacks.
John
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Bond007
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Re: SUCCESS FINALLY!!!
« Reply #15 on: Sep 25th, 2006, 5:59pm » |
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I'm gonna call my GP in the morning and ask him if he'll call in a script for me. Today really has been hell! I sure do hope that your cycle winds down soon. While I haven't given up hoping that mine ends, I'm starting to resign myself to fact that I very may be going chronic.
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Brew
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Re: SUCCESS FINALLY!!!
« Reply #16 on: Sep 25th, 2006, 7:31pm » |
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O2 is my 1st option to abort. Has worked every time except twice, and I ended up checking in to the hospital both those times for the DHE-45 treatment. I've been using O2 since I was diagnosed in '91, now I have an M tank (about 5 E tanks equivalent) next to the bed at all times with my Clustermasx attached to the regulator.
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Giovanni
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Re: SUCCESS FINALLY!!!
« Reply #17 on: Sep 25th, 2006, 8:23pm » |
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on Sep 25th, 2006, 7:31pm, brewcrew wrote:| O2 is my 1st option to abort. Has worked every time except twice, and I ended up checking in to the hospital both those times for the DHE-45 treatment. I've been using O2 since I was diagnosed in '91, now I have an M tank (about 5 E tanks equivalent) next to the bed at all times with my Clustermasx attached to the regulator. |
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Of course Brewcrew is right on the oxygen. It is my first line defense. On the triptans, however, Zomig is my first choice.
John
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eyepopper
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Re: SUCCESS FINALLY!!!
« Reply #18 on: Sep 25th, 2006, 10:17pm » |
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Bond,
I just read this thread tonight, and just want to wish you well. I had a similar experience with a neuro, and just recently gave him the pink slip. When I suggested oxygen to him, he said, "Now what good will that do?"
I am so fortunate to have found a new neuro who is well versed in CH (in the Pittsburgh, PA area).
. . . and might I respectfully disagree with everyone about oxygen being the best first-line abortive? A good NEURO is the best first line abortive . . . he or she gets you the correct first line abortives!
But seriously, good for you for "given 'em hell." I've learned all too slowly and too painfully that you have to speak up when you have this condition. Some people (even some docs) just don't get it.
So best wishes to you, and vibes for future PFDANs!
Deb
- just new to O2 and 'trex nasal spray and verapamil and doin' great!
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BB
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Re: SUCCESS FINALLY!!!
« Reply #19 on: Sep 25th, 2006, 10:30pm » |
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on Sep 25th, 2006, 5:59pm, Bond007 wrote:| I'm gonna call my GP in the morning and ask him if he'll call in a script for me. Today really has been hell! I sure do hope that your cycle winds down soon. While I haven't given up hoping that mine ends, I'm starting to resign myself to fact that I very may be going chronic. |
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Hi James,
I know why you are fearing the big " chronic" word, but take heart that its rare, only about 10% of all cluster gets chronic. Its important that you dont start thinking in that line as it will cause fear, and yes the beast feasts on fear !
Cluster tends to morph a little. Especially whenever you change or try new meds. The hypothalamus main function is homeostasis, that means "keeping balance". Although during a cycle it malfunctions and the balance is out the door but it still tries to keep balance. So when you throw something new at it, it will work hard to counteract as in its " confused" state it "believes" that cluster is the balance it must keep, thats why it triggers one always at about the same time !!
So dont get disappointed, keep hitting it back with the right meds and eventually it will accept the new balance ie NO MORE CLUSTER.
Take care and painfree wishes to you.
Annette
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Bond007
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Re: SUCCESS FINALLY!!!
« Reply #20 on: Sep 25th, 2006, 10:38pm » |
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Thanks, brewcrew, John, Deb & Annette! I appreciate the support. Today really has been my worst day in several months. Lately, I've been averaging 6-9 HA's a day (until this weekend), but only 1 or 2 would even get close the kip 8-10 range.
Today, I've gotten hit with at least 6 HA's with not one less than a kip 6 and most were a kip 8-10. I've been miserable and drugged out of mind all day long......... 
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BigCoffinHunter
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Re: SUCCESS FINALLY!!!
« Reply #21 on: Sep 25th, 2006, 10:40pm » |
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on Sep 25th, 2006, 10:17pm, eyepopper wrote:
- just new to O2 and 'trex nasal spray and verapamil and doin' great! |
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Congrats, that's a phrase we don't hear enough of!
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BB
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Re: SUCCESS FINALLY!!!
« Reply #22 on: Sep 25th, 2006, 11:36pm » |
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on Sep 25th, 2006, 10:38pm, Bond007 wrote:Thanks, brewcrew, John, Deb & Annette! I appreciate the support. Today really has been my worst day in several months. Lately, I've been averaging 6-9 HA's a day (until this weekend), but only 1 or 2 would even get close the kip 8-10 range.
Today, I've gotten hit with at least 6 HA's with not one less than a kip 6 and most were a kip 8-10. I've been miserable and drugged out of mind all day long.........
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Whoa ! 6-9 hits per day ? and at least 6 per day with most at K8-10 ? Thats too much !!
Are you sure you may not have something else ? Maybe SUNCT? Or Hemicrania Continua or something ?
Maybe you need IV DHE to break this if it is indeed cluster . Or you may need a big dose of Prednisone to tame this beast down quickly.
Anyway, sending you good vibes, a big hug and prayers that your pain stops tonight.
Annette
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Pethog
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Re: SUCCESS FINALLY!!!
« Reply #23 on: Sep 26th, 2006, 1:03am » |
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Bond007,
You sound a lot like my fiancee. He's going on almost a year, but for the last two months he has had a constant headache (around a Kip 2-3) with about 6-9 cluster attacks as well. Only made it into work like 5 days in the last month.
We went to the Mayo here in AZ on Sept. 5th. They were great. Gave him an Occipital Nerve Block shot in the back of the head said it would last three-six weeks. They also prescribed Verapamil and Prednisone taper as well as O2. Within 15 minutes he was pain free. For the first time in months I saw the exuberant little Irishman I fell in love with. Two days later, the CHs came back with a vengeance. The docs up their dose of verapamil and said it would take 2 weeks to kick in. He was worse those two weeks than he was before we went to the Mayo. I called last week and talked to the nurse and asked if they could put him on Gabapentin (Neurontin). She called back and said the doctor agreed and prescribed him some. That was last Wed. By Friday he was pain free and has been ever since. There have been tiny shadows here and there, but he'll take it. I'll keep you updated, but maybe that drug will help you like it helped him.
Good luck!!!!!
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Bond007
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Re: SUCCESS FINALLY!!!
« Reply #24 on: Sep 26th, 2006, 6:38pm » |
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on Sep 25th, 2006, 11:36pm, BB wrote:
Whoa ! 6-9 hits per day ? and at least 6 per day with most at K8-10 ? Thats too much !!
Are you sure you may not have something else ? Maybe SUNCT? Or Hemicrania Continua or something ?
Maybe you need IV DHE to break this if it is indeed cluster . Or you may need a big dose of Prednisone to tame this beast down quickly.
Anyway, sending you good vibes, a big hug and prayers that your pain stops tonight.
Annette
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I've tried Indomethacin which is a positive indicator for HC or CPH and my headaches didn't respond to the med in any way. My neuro and GP have also ruled out SUNCT because my headaches do last for at least 30-45 minutes at a shot, usually more like 60-90 minutes.
I do think, though, that you did misunderstand something there. While I am getting hit with around 6-9 CH's on an average day, only 1 or sometimes 2 will be in the Kip 8-10 range. All the others are typically around 4-7, maybe. And, that's only been in the last couple of weeks that my HA's have been increasing so rapidly. Hence the reason why I've contacted the Mayo Clinic.
Yesterday was an unusual day and I was getting hit with an unusual amount of higher kip HA's. While I was drugged most of the day, I could still feel the attacks through a double dose of Stadol so I can only guess that approximately 5 or 6 attacks yesterday had to be in Kip 9-10 range. That's only a guess, like I said, because I was heavily drugged ALL DAY LONG.
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| « Last Edit: Sep 26th, 2006, 6:46pm by Bond007 » |
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