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fubar
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A new kind of fear
« on: Jan 17th, 2003, 1:53pm » |
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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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"He who has a why to live for can bear almost any how." -- Friedrich Nietzsche
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Brassbear
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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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brain_cramps
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Re: A new kind of fear
« Reply #2 on: Jan 17th, 2003, 2:13pm » |
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on Jan 17th, 2003, 1:53pm, fubar wrote:| seeing Martha Stewart naked. |
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SHIT!!! There goes a perfectly good lunch. That's a mental image I really didn't need. 
on Jan 17th, 2003, 1:53pm, fubar wrote:
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.
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I regularly get LONG attacks. But on the other hand, I rarely get hit during the day anymore. Only at night.
on Jan 17th, 2003, 1:53pm, fubar wrote:
I've never had one that bad, and I have newfound pity for those (like Jill) who deal with this a lot.
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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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| « Last Edit: Jan 17th, 2003, 2:15pm by brain_cramps » |
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paul_b
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Re: A new kind of fear
« Reply #3 on: Jan 17th, 2003, 2:25pm » |
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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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Hunny
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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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cbolony
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Re: A new kind of fear
« Reply #5 on: Jan 17th, 2003, 4:08pm » |
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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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CathiP
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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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Mark C
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Re: A new kind of fear
« Reply #7 on: Jan 17th, 2003, 4:28pm » |
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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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Silver_Dolphins
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Re: A new kind of fear
« Reply #8 on: Jan 17th, 2003, 4:48pm » |
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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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cathy
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Re: A new kind of fear
« Reply #9 on: Jan 17th, 2003, 4:57pm » |
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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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Linda_Howell
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Re: A new kind of fear
« Reply #10 on: Jan 17th, 2003, 5:00pm » |
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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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Kindness, is gladdening the hearts of those who are traveling the dark journey with us.
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Elaine
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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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Margi
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Re: A new kind of fear
« Reply #12 on: Jan 17th, 2003, 5:19pm » |
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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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| « Last Edit: Jan 17th, 2003, 5:22pm by Margi » |
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tokray
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Re: A new kind of fear
« Reply #13 on: Jan 17th, 2003, 5:35pm » |
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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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SteveY
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Re: A new kind of fear
« Reply #14 on: Jan 17th, 2003, 6:00pm » |
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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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Woobie
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Re: A new kind of fear
« Reply #15 on: Jan 17th, 2003, 6:02pm » |
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Sorry Fubar!!!
Tina 
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suzy617
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Re: A new kind of fear
« Reply #16 on: Jan 17th, 2003, 7:15pm » |
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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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cootie
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Re: A new kind of fear
« Reply #17 on: Jan 17th, 2003, 7:16pm » |
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So sorry fubar......am wish'in you all PF days......hang tough......Pam
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Charlie
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Re: A new kind of fear
« Reply #18 on: Jan 17th, 2003, 7:21pm » |
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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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fubar
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Re: A new kind of fear
« Reply #20 on: Jan 18th, 2003, 12:31am » |
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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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| « Last Edit: Jan 18th, 2003, 12:32am by fubar » |
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Charlie
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Re: A new kind of fear
« Reply #21 on: Jan 18th, 2003, 12:47am » |
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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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Linda_Howell
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Re: A new kind of fear
« Reply #22 on: Jan 18th, 2003, 6:05am » |
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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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marty
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Re: A new kind of fear
« Reply #23 on: Jan 18th, 2003, 6:19am » |
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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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SommelierCH
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Re: A new kind of fear
« Reply #24 on: Jan 18th, 2003, 6:50am » |
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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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