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ex_pat_asia
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A Personal Worst (attack)
« on: Sep 4th, 2004, 4:30pm » |
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After 30 years experience with cluster and going four years since my last episode, I had assumed I had already seen the worst. Up till now that was a four hour attack that occurred aprroximately 20 years ago and ended with a trip to ER.
Today I logged a personal "worst". Awoke after a PF night with a shadow that just kept climbing at an usually slow pace. I hurried to make the coffee, but by the time it was brewed I had a 4 (my KIP scale) going. Took 6mg injection of trex...snorted confidently to myself, and proceeded to drink coffee and prepare to do some work on the computer. It kept climbing the scale, steady and slow (they never do that....usually mine are like a freight train, racing up the scale. In 30 minutes it was as bad as I get which is what I rate as my "10". I waited another 30 minutes while holding an ice bag against my eye, and then jabbed again. After that jab I stepped into a hot shower and just let the water run on my face for about 15 minutes. The attack ramped down to a low level (maybe 3 or 4 on my scale). I dried off and sat down to a fresh cup of joe...and it started back up the scale. Long story short, me & the beast yoyo'd like that for the rest of the day. I am in a hotel in Jakarta, but it is a nice one, so I called just to ask if they had a medical technician or nurse on duty and would they, by any chance, have oxygen. Fiteen minutes later, I am holding the mask against my face. Ten minutes later, all traces are gone. Forty-five minutes later I am sitting in their exec floor lounge having a dobolo espresso. Bang, here we go again, this time ramping hard and fast. Hurried back to the Oxy tank they were kind enough to leave with me. This time 5 minutes and it was chased away again...and has not reappeared. Tonight, after six days off, I gave up and started a new steriod taper. (The attacks had started to re-appear in numbers when I had finished the last taper.
Don't have a clue where my 10 hour attack came from, or why. No difference in behavior to point at, no unusual environmental elements that I can think of. Felt ragged since then, and now cannot sleep well because of the steriods even though I doubled the melatonin. It is 3:30 am, and I just at this moment stifled a yawn... maybe going to get lucky and catch some winks. But I will wake up wondering "whiskey, tango, foxtrot?" and what that was all about. Hope it stays a rare event. I am tempted to think that I had a series of attacks...but there was no period during that ten hours that I was pain free. One for the log book, for sure.
I am curious to hear about other "personal worst" stories.
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| « Last Edit: Sep 4th, 2004, 4:37pm by ex_pat_asia » |
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ex_pat_asia
"Work like you don't need the money,
dance like no one is watching,
love like you'll never get hurt" - Anon.
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pubgirl
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Re: A Personal Worst (attack)
« Reply #1 on: Sep 4th, 2004, 5:05pm » |
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on Sep 4th, 2004, 4:30pm, ex_pat_asia wrote: I am curious to hear about other "personal worst" stories.
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Why?
Just curious
Wendy
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| « Last Edit: Sep 4th, 2004, 6:51pm by pubgirl » |
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Ronny
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Re: A Personal Worst (attack)
« Reply #2 on: Sep 4th, 2004, 6:20pm » |
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Hi,
10 Hrs, shit man.
My personal record is 3 hours and that was more then enough.
It was a bit like your story, up and down the whole time, even after it went away, i wasnt completely PF for another day or so but it was tolerable. It made me afraid of the next one, will it be like this all the time? The next day, i had my next one and it wasnt such a long one (they usualy last 60 mins)
Shit man, 10 Hrs...
PFDAN
Ronny.
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Giovanni
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Re: A Personal Worst (attack)
« Reply #3 on: Sep 4th, 2004, 6:50pm » |
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I guess my personal worse was last cycle during the apex when I had 6-8 headaches over the course of the day and night......all high kippers.
Sounds like the O2 worked well with you. Any chance of getting your personal O2 tank/equipment?
Good luck,
John
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Kris_in_SJ
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Re: A Personal Worst (attack)
« Reply #4 on: Sep 4th, 2004, 8:49pm » |
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Wow - so sorry!
I can't even imagine being in Jakarta (I still remember Mel G. in "The Year of Living Dangerously" , let alone having this type of thing happen while there!
I'm with John on this one - see if you can get some kind of permanent O2 thing going.
So, on another note ... are you a journalist? Like Mel was?
Just curious.
Hugs,
Kris
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I'm a small woman in small town being chased by a VERY BIG BEAST!
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ex_pat_asia
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Re: A Personal Worst (attack)
« Reply #5 on: Sep 4th, 2004, 9:31pm » |
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on Sep 4th, 2004, 6:50pm, Giovanni wrote:Sounds like the O2 worked well with you. Any chance of getting your personal O2 tank/equipment?
Good luck,
John |
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Thanks John,
I have Oxygen at home. Just tough to carry around. That is the reason I flew to Hong Kong to get the Imitrax injections. It was an expensive way to get them but at the point it was the only hope I had of breaking the tether and getting back to work.
I did have occasion (twice actually) to be on board flights when all I had was Immigram pills - - and they are simply useless - - so I asked a crew member if they had oxygen on board. In both cases I was delivered a small cyclnder and fresh face mask. I was stunned and delighted. Since cluster attacks are sometimes triggered by air pressure changes, this is a good thing to know. Add that to the hotel's quick response and it sort of appears that there may be a good chance for someone in a similar situation, and asking is a good start.
[quote]
Why?
Just curious
Wendy [//quote]
Good question Wendy. Candidly, yesterday's event has knocked me a little off stride. Until this occurred I was feeling pretty confident again. I experienced an increase of the attacks after ending a taper a week ago. I had altered my cocktail (added neurontin) and after three days felt that I had regained some ground on this cycle. I also had acquired Imitrex injections as well as immigram nasal spray (from 2 different sources) and both had easily dispatched a couple of onsets. Consequently, until this bad boy showed up, I was feeling well armed.
In the aftermath I wondered if others had similar bouts or worse. Maybe it is just morbid curiosity.
One down note: Seems that this is just one more story of how "the beast" as we favor calling it, likes to show us who the boss is when we are in cycle.
One up note: The experience reinforces my belief that Oxygen is my silver bullet. If any CHr has not tried it they should run, not walk, to the nearest source, following the good advice that you and others have posted here about how to use it. I have had attacks many years ago during which the oxygen wasn't as quick, but I don't think that it ever really failed. Still while giving such an observation - - "your mileage may vary" -- seems a fair caveat.
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| « Last Edit: Sep 5th, 2004, 12:18am by ex_pat_asia » |
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ex_pat_asia
"Work like you don't need the money,
dance like no one is watching,
love like you'll never get hurt" - Anon.
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ex_pat_asia
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"Sometimes the wolves lie down and the Moon howls
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Re: A Personal Worst (attack)
« Reply #6 on: Sep 4th, 2004, 10:24pm » |
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on Sep 4th, 2004, 8:49pm, Kris_in_SJ wrote:
I can't even imagine being in Jakarta (I still remember Mel G. in "The Year of Living Dangerously", let alone having this type of thing happen while there!
So, on another note ... are you a journalist? Like Mel was?
Just curious.
Hugs,
Kris |
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off topic
Hi Chris - What a great movie....one of my all time favorites. But in my view Linda Hunt (as Billy Kwan... a male role) upstaged Mel AND Sigourney Weaver, an amazing feat.
I agree that Oxygen is the answer but it is hard to travel with and travel is a must for me. I am not a journalist but need to be mobile in my business. In fact I'll be in your fair city in two weeks for a week of meetings, then I'll move down south for a week to haunt old familiar places and visit family.
Incidentally, Mel is not a journalist either...he is a god...just ask my wife. 
I can't believe this...as I was typing this post this came across the news feed:
Straits Times, Singapore:
US, Australia warn of attacks at Jakarta hotels
JAKARTA - The United States and Australia issued new warnings yesterday, urging their citizens and officials to avoid Western hotels in Jakarta following fresh concerns they could be targeted by terrorists.
Wish I could pass all the terroists my clusters, in chronic form.
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| « Last Edit: Sep 4th, 2004, 10:39pm by ex_pat_asia » |
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ex_pat_asia
"Work like you don't need the money,
dance like no one is watching,
love like you'll never get hurt" - Anon.
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unsolved1
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Re: A Personal Worst (attack)
« Reply #7 on: Sep 5th, 2004, 12:29am » |
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Sorry to hear about your worst attack. I KNOW how ya feel. I get it bad sometimes (every few weeks). I told my neuro's "I can handle 1 or 2 severe attacks per day ... but when it starts happening every couple of hours (having 6 or more per day) ... I can't handle it and I have to be put in the hospital for DHE or steriods. I wouldn't last long any other way.
CH SUX
unsolved <Also on a steriod taper right now ... and still using Imitrex injections>
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pubgirl
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Re: A Personal Worst (attack)
« Reply #8 on: Sep 5th, 2004, 3:13am » |
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ex-pat asia
For what it's worth, I think I have slowed the ramping up of my cycles (i.e. length and severity) by sticking to almost entirely 02 alone.
Only a personal view of course, but I truly and completely believe the more I use the drugs, the worse I get. I think aborting with 02 still has some of the worsening effect, but not as bad.
I believed this before the evidence started to appear from the research to support it.
I am also paranoid that the attacks will get to the point that I can't cope. I never want to get to the situation two of my chronic friends were in, where after 25 years of preventive use, only had surgery left as the option. Too scary.
Wendy
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| « Last Edit: Sep 5th, 2004, 3:18am by pubgirl » |
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ex_pat_asia
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Re: A Personal Worst (attack)
« Reply #9 on: Sep 5th, 2004, 4:10am » |
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on Sep 5th, 2004, 3:13am, pubgirl wrote:
I am also paranoid that the attacks will get to the point that I can't cope. I never want to get to the situation two of my chronic friends were in, where after 25 years of preventive use, only had surgery left as the option. Too scary.
Wendy |
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Amen.....
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ex_pat_asia
"Work like you don't need the money,
dance like no one is watching,
love like you'll never get hurt" - Anon.
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Jaime
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Re: A Personal Worst (attack)
« Reply #10 on: Sep 6th, 2004, 7:17am » |
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I guess there can be a weird sort of comfort by sharing war stories. I admit that I am awed by the tales of chronics who have been fighting the beast for 20 years or more. (shudder) I'm sorry you had a 10 hour attack, but you should count your blessings! I must be some sort of God. I've been having 6 - 8 attacks per day for over five weeks now,pretty steadily Kip 4-8, and have to suffer through it without imitrex, verapmil, oxygen or any of the other treatments suggested here. Shadows stay around a Kip 4, attacks around Kip 6-8. Sometimes it is hard to tell when a shadow ends and an attack starts. I think I have had about 36 pain free hours in the past 35 days, in 2 to 4 hour bites. I am way below the poverty level, and don't have enough money to buy food, let alone spend it on health care. I have to work, whether I have a headache or not. I've actually learned how to be polite in the middle of a Kip 8 attack.
I did check out the Hill-Burton site, but the only facility in Alaska is 200 miles away, in Cordova, and only accessible by boat or plane.
How's that for a personal worst? Sorry if my tone is a little competitive and strident. The beast has me at a Kip 6 right now, and woke me up out of a weird dream. I'm kind of cranky.
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nani
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Re: A Personal Worst (attack)
« Reply #11 on: Sep 6th, 2004, 9:57am » |
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Jaime- isn't there anyplace that offers low income health care near you? A county hospital or something. You should not have to suffer like this. I also have to work during headaches - but I have some meds. Most counties in th US have some indigent funding for health care. Please look into it...
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Jaime
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Re: A Personal Worst (attack)
« Reply #12 on: Sep 6th, 2004, 3:31pm » |
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Sorry Nani, but in a Republican economy, the wealthy ride on the backs of poor people like me. I make too much money ($1200/month) to qualify for any assistance. My adjusted gross income last year was $6000, and I have to pay $2000 of that in self-employment tax. Not only is there no indigent health care available for people like me, but I don't even qualify for food-stamps. I have to use the food banks to eat, but they are only open during the hours that I work, so I have to choose between going to a job, or standing in line for an hour or two for free food. Not only am I in pain, I'm bitter. 
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