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Title: A new kind of fear Post by fubar on Jan 17th, 2003, 1:53pm I've been dealing with CH for something like 18 years. There have been quiet periods where I've been pretty happy and PF, but it always comes back. This time, it isn't going away... I just can't concieve dealing with this for much longer, but like always, I'll figure out how. For me, the anxiety that comes along with anticipating the attack is horrible. Every 'shadow' or whatever you call it scares the crap out of me just like a horror flick or like seeing Martha Stewart naked. Tuesday, I had what I thought was impossible to have... 5 solid hours of Kip10-11. I was completely drenched in sweat and tears, begging to die from 10pm to 3am. I had a few 10-30 second rests from the pain in that 5 hours, but OH MY GOD!!! I never thought a Kip10 could last more than an hour, tops. I've had bad days before, but this takes the cake... and it has seriously raised the bar on my anxiety meter. Oxygen, when I could get it near my mouth, was no help this time. I've never had one that bad, and I have newfound pity for those (like Jill) who deal with this a lot. I'm thinking now that I have been damn lucky over all these years to have such short CH attacks (less than an hour, mostly) Now that I know it can be bad, every attack just makes me scared to death that it won't end, and I don't know but I think that might also be making it worse. Who knows. Sorry for the babbling... just felt like posting I guess. -Fu |
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Title: Re: A new kind of fear Post by Brassbear on Jan 17th, 2003, 2:01pm fubar, Sorry you're having a rough time man. Your a pretty tough guy to have gone through all you have so far. Hang in there, PF time has got to be coming your way soon. Sometimes it's good just to share with the rest of the family. At least we know your pain and can identify with how you're feeling. Michael |
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Title: Re: A new kind of fear Post by brain_cramps on Jan 17th, 2003, 2:13pm on 01/17/03 at 13:53:06, fubar wrote:
SHIT!!! There goes a perfectly good lunch. That's a mental image I really didn't need. >:( on 01/17/03 at 13:53:06, fubar wrote:
I regularly get LONG attacks. But on the other hand, I rarely get hit during the day anymore. Only at night. on 01/17/03 at 13:53:06, fubar wrote:
Also, I've NEVER had 8 or 10 a day, and hope I never do! Hang in there. Its unbelievable how good life is and how blue the sky is after the bastard leaves! Grant |
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Title: Re: A new kind of fear Post by paul_b on Jan 17th, 2003, 2:25pm Yikes man, that was a doozy. Like you, I would be shitting bricks with the beginning signs of any new attack. No way to figure this BEAST and each of us seems to react to meds in a way that is unique to our own body chemistry. My worst onslaught was the year I was getting ready to retire from teaching and I also over medicated ( for me it was too much Imitrex). Take inventory when things settle down and maybe some of the factors which are a part of this attack can be avoided. The ANXIETY is a bitch---focus on the good moments and wishing you many, many of them. |
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Title: Re: A new kind of fear Post by Hunny on Jan 17th, 2003, 3:28pm fubar - I'm so sorry to read that the beast is being so utterly overwhelming to you right now. Please think back to a time when things in your life were wonderful. So good that you thought life just could never been that good again or ever get better. It didn't last did it? Neither will this. I promise. Those of us who are chronic and never know when the beast is coming - just that it will be soon - need to remember that it won't last. It's gonna come and then it's gonna go away and we'll be pf again. My attacks go on for about 3 to 5 days and then stop for a couple of weeks, sometimes a month. They are always different in some way, don't let this make you think that it will be this way from now on. Maybe this will be the worst attack of your life and you can tell stories about it in years to come like an old soldier! :) Hang in there. |
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Title: Re: A new kind of fear Post by cbolony on Jan 17th, 2003, 4:08pm furbar i been getting hit since june to end of july and then first week of nov to end of dec and started again jan 6 and still in it four a day.hang in there you are not alone and these 3 cycles are the worst in my 5 years going on 6 now. |
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Title: Re: A new kind of fear Post by CathiP on Jan 17th, 2003, 4:19pm FU- Not you!! I really am so sorry you're getting hit so hard- and so long. Like others, didn't need the Martha Stewart visual, but it sure puts things into perspective. EEEUUUWWW!, though! Seems like there's something in the air- whatever it is brings the beast around bigtime, and so many are getting hit! Hang in there- and let us know about Chris- you're neede, man, so keep hanging on!! Hoping today is PF- and tomorrow, and so forth- Cathi |
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Title: Re: A new kind of fear Post by Mark C on Jan 17th, 2003, 4:28pm Damn Fu, I am sorry you are getting hammered so hard. I do understand the fear of even the slightest shadow causing the pit of my stomach to jump into knots. I hate this disease. I doubt I have any information to offer you to help combat such an attack. I do have support and prayers to offer and I hope you get a break soon. God knows you are past due... Hang in there brother, Mark |
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Title: Re: A new kind of fear Post by Silver_Dolphins on Jan 17th, 2003, 4:48pm I know what your are dealilng with. I have entered the 23rd or 24th week of this cycle. Fortunately the last kip10 I had was over a month ago. I have had kip10's last 3 hours before and felt that if death would just come all would be well. Today, while at work and prepariing 1099 forms for 2002, I got hit witha kip4. First time more than a shadow got me at work. The shadows do cause anxiety for me also, but I am pretty much in a constant kip1 shadow. I can deal with it, but I would rather not. I hope you cycle out (permanantly) soon. PFDAN Silver Dolphins |
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Title: Re: A new kind of fear Post by cathy on Jan 17th, 2003, 4:57pm :( Fubar...I have only ever witnessed this beast I thank god I have never had to experience the hell that you and others go through,... I only know that it will pass for you and you are strong enough to cope with it...I send you all my PF prayers and just want to let you know, that each and every one of us here, CH'ers or Supporters wish you all the painfree days ahead of you, a little closer. Cathy & Wes |
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Title: Re: A new kind of fear Post by Linda_Howell on Jan 17th, 2003, 5:00pm Fubar, I hope this is of some consolation to you. I've been very chronic for the last 10 yrs. out of 15. Only once have I had happen what you just described. Only one time..and my 1st. and ONLY trip to the ER Just because you experienced this, DOES NOT mean it will happen again. Linda Howell |
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Title: Re: A new kind of fear Post by Elaine on Jan 17th, 2003, 5:17pm Hi I tell you I know that fear all to well! I WAS chronic for over 20 years and you know what now I am not ;-)! There is hope. Here is how I made it and how I make it now. I learned to live one day at a time I find it’s the best way to handle pain short term one day at a time. It is just to overwhelming to think of pain of any kind for long term! Think about it ! Hope this helps and remember It will Pass! Nothing last forever :-)! |
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Title: Re: A new kind of fear Post by Margi on Jan 17th, 2003, 5:19pm Aw, Fubar - I'm sorry to hear you had such a scary hit. That happened to my husband once too - he had one ebb and flow for a period of 8 hours (on our first wedding anniversay!). All because he had taken maybe half a glass of red wine at dinner. Man, did he pay for that through the night! Did you eat or drink anything different than you usually do? Like Chinese Food with MSG? Bananas? booze? Just curious. Oxygen sometimes fails Mike too. Hang in there, Fubar - we're out here pullin for ya. Note to Hunny (Sharon): I have noticed that you have mentioned twice now in your posts that your attacks are lasting 3 or 4 days and then you sleep for 12 - 13 hours after. Have you been diagnosed by a neurologist that you have clusters? That sure doesn't sound like cluster activity. Cluster attacks don't last that long - you'd be DEAD if you had a 4 day cluster. Migraines, however, do last that long. Please get a second opinion. If you're taking cluster meds, they could be making you worse and/or endangering your health, ok? Please know I'm not trying to kick you out of here, I just hate to see folks with misdiagnoses trying to treat something they don't have. And, finally, to my littlest Twisted Sister, Linda Howell: VERY chronic, huh? Is that like just a little bit pregnant? ;) oh, and Newfie Screech is something that defies description. But I guarantee you, after one glass, you won't be able to feel your legs anymore. |
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Title: Re: A new kind of fear Post by tokray on Jan 17th, 2003, 5:35pm Fubar, I feel your pain. About 3 weeks ago I suffered from a 5 hour episode. It's just unbelievable. All I can tell you is to have patience. I have been pain free for 4 days now and I hope you will be soon. Be strong!!!! You can beat this. |
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Title: Re: A new kind of fear Post by SteveY on Jan 17th, 2003, 6:00pm I know how you feel, I really do, as does everyone else here. Hang on, new research is going on as we speak, we will one day kill this bastard. The fear of the fear is sometimes worse than the pain, it will pass, I promise, stay strong 'till then. Steve |
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Title: Re: A new kind of fear Post by woobie on Jan 17th, 2003, 6:02pm :-[ :-[ :'( :'( Sorry Fubar!!! :'( Tina :-* |
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Title: Re: A new kind of fear Post by suzy617 on Jan 17th, 2003, 7:15pm Sorry Fu, This really sucks for you. I have never had a kip10 for more then an hour or 2 at the most and I totally freak on that. The fear factor crap sucks almost as much too. But as the others say, its gonna pass, hang on brother. Wishing you fast relief soon from this annoying friggin beast.... suzy |
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Title: Re: A new kind of fear Post by cootie on Jan 17th, 2003, 7:16pm So sorry fubar......am wish'in you all PF days......hang tough......Pam |
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Title: Re: A new kind of fear Post by Charlie on Jan 17th, 2003, 7:21pm Damn! Never had them like that. Closest I came was two 20 minute attacks pretty close together. All I can say is to try my technique. It can work and you have zero to lose. Keep up the fight and let us know how you're doing. Dr. Wright's Circulatory Technique This is not transcendental meditation, imagery, relaxation, or anything psychic. It's entirely physical and takes a lot of work and concentration. Give this method a good workout. It’s not a miracle, but it’s been helpful to many. When I was diagnosed, my neurologist said to treat this as a vascular problem. I was told to concentrate on “redirecting” blood circulation in order to retard flow to the head. This is done by trying to “send” blood into the arms and hands or other extremities. When properly done, your hands will become warm and redder with increased circulation. I also found it easier to concentrate on one hand. This relieves just slightly, the pressure on the affected vessel, which indirectly causes our pain. We all have this ability but it can be exhausting. I was often able shorten my attacks from about half an hour to no more than a few minutes. Sometimes, when awake, I could entirely abort the attack IF I KEPT AT IT. Often, I would suffer only minor discomfort instead of excruciating pain. Do not stop just because your hands are warm or redder. Keep this up until you are sure it's subsided. If you let up or lose concentration, it’s very hard to restart this process. It may take some time but when this works, the relief is almost immediate. I learned this from the doctor in a few minutes. He simply told me to try to keep blood away from the head. He thought it easiest to concentrate on the arms and hands but any place that works for you is fine. He said to think of it as "filling your hands" with redirected blood. It’s important to keep at it THROUGH the pain. This will be difficult, but it’s the only way this technique will work. Don’t let up until you are sure the attack has ended. This will not always work, but I think it will always have at least some effect on the severity and duration of the attacks. It can be useful between medications or while waiting for some other drug to take effect. All it takes is a little practice. It was fairly easy to learn and what I'm writing here is more than I got from the doctor, as I've drawn from my own experience. When awakened in horrible pain, it’s very hard to focus, but I think it’s always worth a try. This costs nothing but hard work, is harmless, non-invasive, and it gives us a fighting chance. I wish you the best of luck - Charlie Strand |
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Title: Re: A new kind of fear Post by Mastifflvr28 on Jan 18th, 2003, 12:00am Awww Fubar :( I'm so sorry. I've not had one of these 5 hour thangs yet...something to look forward to, BLAH :( Hope it's your only 1!!!! Mast |
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Title: Re: A new kind of fear Post by fubar on Jan 18th, 2003, 12:31am Charlie, I've tried that technique when I could. That attack on Tuesday was an instant Kip10, and I don't know about you, but Kip10 reduces me to an incoherent blathering lump of electrified flesh. There is no possibility of actual concentration. Hell, I can't even will myself to hold the oxygen mask, let alone *meditate*. Appreciate the info though, it has been useful in the past. -Fu p.s. Thanks for all the kind words from everybody. I really am amazed by what a cool family we have here. |
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Title: Re: A new kind of fear Post by Charlie on Jan 18th, 2003, 12:47am The thing that some have done is to get used to doing it between attacks. I think Linda had some luck that way. I know what you're saying but because I knew it worked, I always tried. For me, 75-85% of the time, it would stop them. Good luck in any event Charli\h |
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Title: Re: A new kind of fear Post by Linda_Howell on Jan 18th, 2003, 6:05am my legs are just fine Margi. It's the head that troubles me. And yes....try Charlies method.. it has Indeed worked for me ....a little. But you need to practice the hand warming.thing while in a ...uh..not-in-pain mode. Other wise forget it. It reallly has helped me though. No side-effects and when you realize this thing is working....you say to yourself......"awl right Charlie" cause the pain is being controlled by you. Not by a drug. Linda |
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Title: Re: A new kind of fear Post by marty on Jan 18th, 2003, 6:19am fubar.. I know what you are talking about.. not from personal experience - I am one of the lucky CH'rs with managable attacks - but I see it in Jill's eyes everytime it "spikes" / shadows. As Linda said.. this may be a one-time only - I truly hope so. Stay strong fubar (sounds kind of irritating, I know) and I hope that you have some good support to help you deal with this. Martha Stewart naked.. that can not be a good thing ;D Marty |
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Title: Re: A new kind of fear Post by SommelierCH on Jan 18th, 2003, 6:50am Fubar, man o man, I’m sorry you’re going through this. What has always gotten me through a K-10, was knowing that it had never lasted more than two hours. This thread is a disturbance in the force. Thanks for letting us know what’s going on, that’s the only way we can learn. I was interested in the questions raised by Margi in her reply--Did you do anything different with: meds, sleep, stress, eating, temperature, alcohol? I got a K-6, on Thanksgiving evening, because of sherry in the carrot soup. All alcohol does NOT burn off in the cooking. Also, maybe our triggers change as we age, like allergies. I don’t know your O2 set up or tank size, but is your O2 tank close enough to hit on immediately, if you’re coming out of sleep? You’ve gotta be able to hit it hard and fast, cause the beast already has a jump on you. Is your O2 setup in the best spot, overall, in case of another Big One? (Hell, I get the Big One, I wouldn’t know where to begin to find a name for the pain you are going through) Could you let us know if you tried any other abortives besides O2, on this one? I have used Maxalt MLT 10mg tabs (enters the body under the tongue, fast, bypassing the digestive system) and Zomig ZMT 5mg tabs (above the tongue), both at the onset or during an attack and before bed to prevent the Big One, which for me is ALWAYS (during my cycle), every night 15 min.- 1 1/2 hrs after falling asleep. (Thanks Jonny). Both of them worked great for me. However, I still was afraid to sleep. All the best to you brother, keep on posting, PFDAN, David J. |
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Title: Re: A new kind of fear Post by Jarvis on Jan 18th, 2003, 2:09pm Fubar- sorry to hear about your attacks again bro. I'm gonna ramble a little here......We cant often know what will help others........One of my cycles went on for 3 years. I had daily attacks back to back of 2 hrs each consisting of 10 -12 attacks a day. All attacks were definately on and above the k10 scale. This left me daily with about an hour to rest and often I would not sleep for days on end. Imagine 3 years without enuff sleep for most to exist... In this period absolutely no meds had any effect whatsoever. I learned things that you can only find at the top of the mountain about myself and pain..The one saving grace was that eventually they eased up to about a k4 each time but returned full blast before they could ease fully...My family fell apart, my business at the time went into oblivion, I lost most things I held dear except my self worth. Fortunately I found ways to survive.........On the meditation prescribed by charlie I used a similar technigue but very different. I concentrate wholly on the pain, blocking out absolutely any external distraction, even when there are many, and actually go into the pain to the point that I could actually see it and see myself floating above it and watching myself crouched in the corner. I could see my very soul just as it has been described by many shamen. It was extreme pain that allowed this to be and only extreme pain that will allow me to do this again... I learned this mostly on my own as no amount of teaching can allow this.Though I did study continuosly the ways of the mystic arts as modern science had no answers for my pain..If any have tried pure LSD they may have had similar eperiences..I was not using it but had in years past. The mind is a powerfull tool on its own. Its amazing what can be done with just the mind. You can actually convert the pain to an item and disassociate yourself from it. Sleep deprivation may help. In that period I "never" feared the attacks as I do now. I only saw them as a battle to be won much as a warrior would step into the fray........In the end I would stand and walk throw my hands in the air and shout to the gods "is that all you got" bring it on and it was as if the clouds parted and the intensity of the blue sky was magnified a thousandfold. The intensity of the pain was replaced by the intensity of pleasure in all that surrounded me and then it was right back to do it all over again. I know that many will say WTF the guys way out there but so be it. Since then I do ok and am still heavily afflicted with CH. But I know that I can kick the beasts ass any time he wants to try again. And try he does........Fubar I am glad to see you kicked his ass too cause you just experienced the best he's got. It doesnt get much worse unless they repeat continuously and forever. Then you just enter a different reality and get to win the battles on a regular basis. Nothing like constant victory to keep ones ego going. Few will ever get to experience the pure pain and pleasure that goes with these kind of victories. You are one of the lucky ones who knows that nothing can exceed what you have allready beaten. |
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Title: Re: A new kind of fear Post by Jarvis on Jan 18th, 2003, 2:18pm By the way I'd kinda like to see Martha Stewart naked. ;D |
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Title: Re: A new kind of fear Post by Mark C on Jan 18th, 2003, 3:06pm on 01/18/03 at 14:18:49, Jarvis wrote:
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Title: Re: A new kind of fear Post by Laurie on Jan 18th, 2003, 3:29pm I'm so sorry you had such a terrible one, Fubar :( But I like your post because it really drives home the point that CH is about 2 things: pain and fear. Our neuros can give us meds to help us manage the pain, but only here (thanks, DJ!) can we get support for the fear part. I've never discussed my fears with my neuro. I suppose I felt embarrassed, which is silly of me. Have any of you folks? Did it help? <<every attack just makes me scared to death that it won't end, and I don't know but I think that might also be making it worse. Who knows. >> I hope you don't guilty about being afraid. It is normal to be afraid when you know you are about to experience unbearable pain. You are NOT making your pain worse by being afraid. Since a CH episode is both physically and mentally disabling, I think it's really important to prep before each headache hits. Here are some suggestions: 1) Have your O2 aparatus as "ready-to-go" as possible, so it takes the minimal amount of effort to use. If you have a secondary abortant (Imitrex, etc.), have that nearby and ready to go as a back-up. 2) Before the headache, promise yourself that cluster headaches don't go on forever. During the headache, keep a clock or watch nearby that is big enough or close enough to see when you are disabled. Write down the time you start your abortant, so you know when your abortant will kick in. 3) Even in a Kip 10, I figure I can make it 5 more minutes. When I can write, I give myself a check-mark or a star on a piece of paper for every 5 minutes I complete. Hey, gold stars worked for me in elementary school, and they work for me now. 4) I have a message that I deliver to myself if I get a Kip 10. Something like: "I know the pain is unbearable, but it will not last forever. I can get through this." Laurie |
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Title: Re: A new kind of fear Post by Lenny on Jan 18th, 2003, 4:42pm Fubar, i am very sorry that you had to exp.an attack that long.In the past i used to get hit with one of those on the avg.of once a month( prior to being introduced to Imitrex ( inj. )summer of 98 or 99.I was convinced that i did not suffer from clusters due to the length of time of my attacks( i used to argue with each and everyone of my ex-neou. about this).All the bullshit i could get my hands on ( books,hospital studies,etc. )have always claimed that the attacks last from 10 - 90 minutes("BULLSHIT" ). ON monday( jan.6)i was at my doc.office to get a prescription to give to the cardiologist( they put me on this ekg machine that you take home wear it for 24 - hours)i am chronic and the only thing that helps me as far as aborting is Imitrex ( inj.)oxygen does not do squat for me :'(.So i am in his office and here is this youg lady sitting there as well( let me add that she's fine as wine )turns out she's a clusterheade,i told her about this site and she immedately starts to get upset ( i was baffled,im thinking another fuckin nut - i always seem to find them )turns out that she was on a thread that was posted ( if my memory is correct between sept.14-oct.14 )"HOW LONG WAS YOUR LONGEST ATTACK",something in those lines. She was so upset of how people flamed on her and everyone else who have posted about their long attacks( i was one aswell ).After reading this post from Fubar,and everyone else,i noticed that there are some of the so called experts that flamed on the people that have long attacks,now you have exp. them aswell "WTF".For those of you that have not suffered an attack that long,rather than flaming on people that do ,consider yourself "VERY LUCKY" that you dont. For all of you that are reading this please mark those dates and the topic and look in the" Message Archives" when it becomes available,you will see what i am talking about.Too many of you beleive all the text book and data you read about our condition. PFDAN to all. BTW fubar if i can help you in anyway please dont hesitate!!!!!!!! |
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Title: Re: A new kind of fear Post by Jarvis on Jan 18th, 2003, 8:09pm ......LOL Mark.......... On the fear factor, who was it that said "there is nothing to fear but fear itself" I know that may not apply to clusters.. But it may be usefull all the same because we can all beat this beast eventually. Wether it be 10 minutes or 23 hrs, allways we overcome. |
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Title: Re: A new kind of fear Post by Ree on Jan 18th, 2003, 9:21pm I just wanted to say GREAT POSTS EVERYONE FUBAR YOU ARE LOVED.... FEEL BETTER LOVE REE |
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