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Title: Risky post... Post by fubar on Dec 3rd, 2003, 2:23pm OK, I've decided to bite the bullet and announce that I have been living totally PAIN FREE for almost 2 months. I've been living the chronic life longer than I can remember, but my neurologist and I decided yesterday to call this current PF time 'total remission'. While I'm thrilled, I know that even mentioning this to my family here will tempt the beast to come back. Over the course of my chronic-ness, I tried so many drugs and treatments that I can't even list them all here. The things that worked pretty well include Oxygen and high doses of Verapamil+Lithium. For those who want to stay on the chronic train, those are good options. For those who want to get off that ride to hell like I did, well I don't know what to tell you. I know what worked for me but I'm not willing to recommend it to anybody. I would suggest that those who are at their ropes end check into clusterbusters, and that's all I'm going to say about that. I will, of course, continue to post here. I have no intention of fading into the sunset and leaving my suffering family behind. I know this may be temporary, but 2 months PF time seems like an eternity to me. I'll take whatever I can get. Love you all, Shawn |
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Title: Re: Risky post... Post by Tiannia on Dec 3rd, 2003, 2:35pm Congrats. I know and undersatnd the fear of saying that the beast as lost your address, but I wish you the best. Hopefully I can get into a neuro (got I hate changing insurance comapnies) and get mine a bit more under control. Tia |
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Title: Re: Risky post... Post by miCHel on Dec 3rd, 2003, 2:39pm Wow! Talk about great news! Don't worry about that Jinx stuff, Fu. It's not true... although I am too scared and supersticious to apply that theory to me ;;D Anyway, enjoy the ride. I certainly hope that it's on the same highway that Charlie took! miCHel |
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Title: Re: Risky post... Post by Linda_Howell on Dec 3rd, 2003, 3:04pm Shawn, I don't believe in jinxing something just by saying it out loud either. 2 months sound like heaven to me and I couldn't be happier for you. I'm not sure I would call 2 months a TOTAL remission, but it's certainly a great start. LindaH, who's just about ready to talk to BobW myself. |
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Title: Re: Risky post... Post by thomas on Dec 3rd, 2003, 3:05pm FUCKINEH!!!!!! |
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Title: Re: Risky post... Post by jonny on Dec 3rd, 2003, 3:18pm Posting about PF will never end PF, that will happen or it wont....Lets hope it dont for life!! Good for you Bro .................................jonny |
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Title: Re: Risky post... Post by fubar on Dec 3rd, 2003, 3:21pm I hear what you're saying Linda... 2 months could hardly be considered 'total' remission, but I've not had more than a couple PF days strung together in the entire time he has been treating me. BTW, he is *extremely* interested in clusterbusters all of a sudden. He has virtually no hair left after pulling it all out trying to help me, so when something works he wants to know how and why. He's a good doctor. I suspect he'll consider mentioning it to other patients as an alternative to traditional medicine. He also said that he is going to bring this up at the 'meetings', whatever that means. I suppose that neurologists actaully do meet and consult with each other from time to time. Wouldn't it be great if they started to get a clue and start tring to figure out why/how that kind of treatment works for some people? All I know is I was willing to try ANYTHING. I would have drunk cow piss if someone told me it would cure me. I'm not joking. I would have blown my brains out if not for the mess it would leave (emotional scars and such). Again, this is not even close to being a joke. Hell, for all I know, the clusters just stopped on their own. Who knows? Maybe they'll come back later today... anything can happen. I haven't had 2 whole months of pain free time since I was, what, 18? That was 20 years ago. This is like waking up from a coma. -Shawn |
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Title: Re: Risky post... Post by Margi on Dec 3rd, 2003, 3:28pm Well, Shawn, that's just the best news I've heard all day!! I think you've negated the jinx by publically announcing the possibility of a jinx. I'm pretty sure the cosmic forces accept that as a disclaimer and therefore process the cancellation of the jinx. No, really. :) WhatEVER the reason for your remission, I hope you're out there enjoying your pain freedom to the max. ANY pain free time for a chronic is a blessing and I hope it's contagious for the rest of the gang (chronics especially)!! Get out there and kick up your heels, Fubar! And, ps to my littlest Twisted Sister, Miss Linda Howell. Are you telling me that you have NOT investigated the clusterbuster treatment, young lady? :o I think it's time for your spanking, missy. >:( (Great hearing your voice last week, by the way :)) |
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Title: Re: Risky post... Post by brain_cramps on Dec 3rd, 2003, 3:39pm COOL!!!!! |
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Title: Re: Risky post... Post by Edna on Dec 3rd, 2003, 4:15pm HEY!!!!!!! I am certainly thrilled for you Shawn!!!! PF for 2 months, YOU deserve it!!!! Jinx or no jinx........remission or not........YOU ENJOY this pf time......and know that all of us here are pulling for it to be a permanent remission for you!! And btw........a great big THANK YOU for posting to keep us informed. cheering for you, EDNA (pst......hope you don't turn into Mean ole Shawn like that Charlie fellow LOL) ;) |
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Title: Re: Risky post... Post by Cluster_head on Dec 3rd, 2003, 4:25pm [smiley=thumbsup.gif] |
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Title: Re: Risky post... Post by hootchdom on Dec 3rd, 2003, 4:27pm Shawn, May the good one above bless you with the 20 greatest years. You deserve each and every one for the hell you have gone through. Enjoy each and every momement and what is not given to you take because you damn well deserve it !!!!!!!!!!!!!! Hootchdom |
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Title: Re: Risky post... Post by pubgirl on Dec 3rd, 2003, 4:30pm Shawn You've made my day. Savour every day PF and try not to worry! Wendy |
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Title: Re: Risky post... Post by OneEyeBlind on Dec 3rd, 2003, 5:16pm So happy for ya. Clusterbusters did it again !!!!!!!!! |
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Title: Re: Risky post... Post by taraann on Dec 3rd, 2003, 5:34pm Wow Thats just so freakin incredible! Very, Very Happy for you! |
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Title: Re: Risky post... Post by Roxy on Dec 3rd, 2003, 5:54pm ;;D ;;D ;;D ;;D ;;D ;;D ;;D ;;D ;;D ;;D ;;D ;;D ;;D ;;D Clusterbusters is wonderful....isn't it? I am so damn happy for you Shawn.....congrats. |
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Title: Re: Risky post... Post by Lori on Dec 3rd, 2003, 6:00pm It's great to hear such great news. I really feel for those who suffer this chronically. I couldn't imagine dealing all the time with it. So, I am happy for you and hope the beast doesn't ever revisit you! |
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Title: Re: Risky post... Post by Pinkfloyd on Dec 3rd, 2003, 6:05pm [smiley=me&mb.gif] Don't forget your maintenance dose ;;D Feel free to pass my email addy to your neuro. Congrats! BobW (PF) |
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Title: Re: Risky post... Post by Mark C on Dec 3rd, 2003, 6:21pm |
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Title: Re: Risky post... Post by vig on Dec 3rd, 2003, 6:22pm Hey, is anyone beginning to see the pattern here? |
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Title: Re: Risky post... Post by thomas on Dec 3rd, 2003, 6:26pm No I don't get it, but I am a little slow. |
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Title: Re: Risky post... Post by fubar on Dec 3rd, 2003, 6:56pm vig, Pattern? Are you talking about story-after-story of success with a clusterbuster approach? -Shawn |
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Title: Re: Risky post... Post by vig on Dec 3rd, 2003, 6:58pm Yes, exactly,... hmmmmmm |
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Title: Re: Risky post... Post by Charlie on Dec 3rd, 2003, 7:29pm This are reel good news :D Don't plan on the thing returning. I know that's easier for episodics and jerks like me but here you are. Mine started that way.......so far so good. Great news. Charlie 8) |
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Title: Re: Risky post... Post by stevegeebe on Dec 3rd, 2003, 7:36pm This is great news Fu. Steve G |
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Title: Re: Risky post... Post by Linda_Howell on Dec 3rd, 2003, 9:20pm Shawn, Honest to God I did not want to be a downer when I said that. You have to know how happy I am for you. 17 yrs. and counting for me. Margi, you have mail in answer to your question. LindaH |
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Title: Re: Risky post... Post by fubar on Dec 3rd, 2003, 9:25pm Linda, that's wasn't a downer at all... I'm a realist. Besides, how could I be down.. I'm PF! -Shawn |
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Title: Re: Risky post... Post by Linda_Howell on Dec 3rd, 2003, 9:38pm oh good. WHEW !!!!! Hon, I couldn't be any happier for you if I was riding in a 57 T-bird. And I mean that. Dose on............ LindaH |
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Title: Re: Risky post... Post by fubar on Dec 3rd, 2003, 9:49pm I think only a chronic would understand this. I have just experienced the total joy of taking a NAP in the middle of the day. Yes, I wasted a day. BFD, right? Wrong. A nap is something I could never risk before... sleep, rest, relaxation... the enemy. For me, let down the guard for a moment and WHAMO, here comes the jerk with the firey red hot poker looking for that needle within my haystack of a brain. I may just actually enjoy this, for however long it lasts. Maybe. ;;D 38 years old and waking up from a coma... kinda nice. |
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Title: Re: Risky post... Post by Not4Hire on Dec 3rd, 2003, 10:21pm foob.... what can i say? the simple pleasure of that *afternoon nap* is quite a payoff... i'm an episodic, therefore not worthy to suggest that MrHappy carry yer jock....heh ...TheGoodNews?: "Updates on Psilocybin Research" on the Medications page has ...2039 hits....and 124 replies...started Nov. 16.... s h i t...the o2 button has been *up* fer 2 months and has *only* 1988 hits.... ...don't need a weatherman ta know which way the wind blows...... good luck....steve(N4Hire) |
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Title: Re: Risky post... Post by Mastifflvr28 on Dec 3rd, 2003, 10:32pm oh fubar, you don't even know how happy this makes me. Being a weeny episodic, I KNOW how much a nappy means!!!!!!! Big ass huge dosin congrats. And I see a few others in the meds section are following da clusterbusters footsteps, whooo hooo. Mast |
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Title: Re: Risky post... Post by cootie on Dec 3rd, 2003, 10:59pm fuckenech-um-mundo !!! Time to celebrate.....where's the party !!! Pam with party hats ready ;;D |
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Title: Re: Risky post... Post by Ree on Dec 3rd, 2003, 11:16pm Hey I am so happy for you Shawn.... this is great news... time is time no matter what PAIN FREE IS PAIN FREE... I HOPE IT LASTS FOREVER............LOVE YA REE |
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Title: Re: Risky post... Post by Callico_Kid on Dec 3rd, 2003, 11:57pm Shawn, Best news I've heard all day, week, month,.... I am really glad for you! Stay PF! jc |
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Title: Re: Risky post... Post by TxBasslady on Dec 4th, 2003, 12:57am 8) Shawn, That is great news!!!!!! I was skeptical about being pf for a while too. And like you, I was afraid to talk about it too much, for fear of the beasty one returning. But, instead of worrying about it, I decided to take one day at a time. I don't even think about a return visit. If it happens, I will deal with it. The greatest feeling in the world, was the first night I went to bed and didn't have a ha. Being pf is great..........I just wish that everyone here was pf. It breaks my heart to see people I love in pain. Thumbs up to ya, Shawn........God bless Jean (85 days pf.....YEEHAW!!!!!) |
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Title: Re: Risky post... Post by sandie99 on Dec 4th, 2003, 5:29am Shawn, that's wonderful news!!! :) Very inspiring! I still keep hoping the same! Best wishes & more PFdays, sandie99 |
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Title: Re: Risky post... Post by jadedgazer on Dec 4th, 2003, 8:47am Congrats! You give the rest of us hope! |
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Title: Re: Risky post... Post by BruceD on Dec 4th, 2003, 9:04am That's great news Fu, Being an episodic, I can only imagine what chronics have to go through. During a cycle I can keep telling myself that it's going to end ... eventually. Then, when the cycle is over it's almost a euphoric feeling being able to get back to life. Keep on living that newfound PF life & enjoy. Take care BruceD |
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Title: Re: Risky post... Post by Carl_D on Dec 4th, 2003, 9:37am Ooookay...since I am pretty well known for being very um, what's the word...outspoken, here goes: From 1987 to 1998 I was episodic, with a few very lengthy episodes. In February of '98, I became chronic. I didn't understand why the 'episode' was lasting so fricken long, as I had not yet discovered this site. In April of '99, a friend actually stumbled upon the site, trying to find some info to help out his screwed up bud. When I logged on, I freaked! Reading other peoples posts was indescribable. I couldn't believe the words I was reading were alot of the same things I had been trying to tell others, and back in '93 when they first ruined my life completely, I kept a lil journal that a few years later, i would read and think "Damn, that was a very very bad time. Don't wanna relive that!" (I've since burned said book, as it was very disturbing. When I became chronic, it made '93 look like a picnic, and suddenly instead of writing words in a book, I was typing them out for anyone who gave half a damn to read, if it mattered. In mid 2000, I tried the 'clusterbuster' method and it seemed to knock the CH's a bit. Tried it a couple more times, and went from 4-10 attacks a day, down to 2-4 a week. I went for a whopping 23 days without one single attack and was overjoyed. For me, this alternative treatment worked! Sadly, throughout 2002, they started coming back harder and harder once again. Frustrated at not being able to produce the fungii, and no source for supply, I sank into a very deep depression that climaxed in January with a bad injury from a fall down a flight of steps. I decided to take my life. I told no one. I went into a raging CH and literally said "Fuck this! I don't want to do this anymore!" and od'd bigtime! To this day, I still don't know how since both of my doors were locked, but someone found me, and instead of sleeping forever as I thought i would, I awoke days later in the hospital. After my stay there, when I got out, the CH's had tapered back down to a few a week. Then, a few months ago, they returned with a vengeance. I've been fighting them since with the conventional meds, but as soon as I can access the 'treatment' the better. In closing, I highly suggest clusterheads who are at thier wits end check out clusterbusters. I mean, what have you got to lose, other than cluster headaches? Peace, Carl D |
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Title: Re: Risky post... Post by kim on Dec 4th, 2003, 9:46am Hey Fubar, Happy to read you are doing betta! Hope things continue to improve for you :) PS: Okay. Ya finished "Hatred's Kingdom".......now read "Militant ISLAM Reaches America" by Daniel Pipes. Yes, I know it's depressing. But necessary. PFDAN and well wishes :) |
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Title: Re: Risky post... Post by echo on Dec 4th, 2003, 5:52pm Great news Fu! Gives us chronics hope. |
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Title: Re: Risky post... Post by Flounder on Dec 4th, 2003, 11:33pm Great News Shawn!!!! ;;D I love to see stories like this, especially from those who are chronic. That's just awesome! Happy Holidays to you. |
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Title: Re: Risky post... Post by Mikey on Dec 4th, 2003, 11:51pm Fantastic news FU!!!!!!! Like i've always said, no matter what anyone else thinks, you do what's right for you, and i'm glad you did!! PFDAN to you from now on FU and peace and safety to you and your family!! Mikey, ;;D |
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