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Topic: WTF? (Read 694 times) |
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purpleydog
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I started another "cycle", am now getting hit about once every 60 to 90 minutes, instead of my usual twice a day. I took a flight for vacation, this started a few days before I left. Man, those two hits a day, I manage with O2, but only trex shots are keeping these under any semblance of control.
THIS SUCKS. For now, I have plenty of trex, splitting shots, had to go up to half shots, and did a full dose with an auto injector yesterday. Was out for dinner, and had to leave, I had run out of trex. CRAP!! I hope this is short, I had sent some trex in advance, didn't want to try to get that and syringes through security at the airport, especially when they pulled me aside for an extended security search.
Man I hate this shit. O2 isn't working, this is more of a kill the main hit, and be stuck with a heavy shadow, that turns into another hit.
Sorry for the vent, all I wanted to do was take a nice vacation for a week.  Dammit!!
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kimmiedawn81
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Stuck in the middle with you!
  
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Re: WTF?
« Reply #1 on: Apr 6th, 2007, 9:47am » |
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Sorry to hear that you're having a tough time Chris. I hope that it's a short cycle. Vibes going out to you Chris. Take care!
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Yorky
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learn to meditate (or just sit & do nowt)
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Re: WTF?
« Reply #2 on: Apr 6th, 2007, 9:53am » |
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vent all you want....swear and cuss
used to be 2 a day myself.
but 15 a day (some days) 4 the past week
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today is a gift.....thats why it is called the
present.
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pattik
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Re: WTF?
« Reply #3 on: Apr 6th, 2007, 10:08am » |
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 Chris, sorry to hear things are morphing for you. I hope this cycle changes in good ways too, and finishes a lot faster than before.
Pat
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The voyage of discovery is not about seeking new landscapes, it's about having new eyes--Marcel Proust
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lionsound
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breathe
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Re: WTF?
« Reply #4 on: Apr 6th, 2007, 11:34am » |
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Aww..Chris.... that DOES suck.....
I'm so sorry you are hurting.
tons of PF's for you!
you WILL get through it!!!
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| « Last Edit: Apr 6th, 2007, 11:35am by lionsound » |
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ClusterChuck
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The BEAST rises again, and again, and again, and .
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Re: WTF?
« Reply #5 on: Apr 6th, 2007, 3:33pm » |
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It is the company you are keeping, hun.
Still, I feel for you, dear!
Hugs, smoochies and vibes headed your way.
Chuck
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"No man can be happy without a friend, nor be sure of his friend till he is unhappy."
Thomas Fuller
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artonio7
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Re: WTF?
« Reply #6 on: Apr 6th, 2007, 4:32pm » |
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Awwww Chris... this really sucks! Keep your chin up though... maybe one day this nasty a$$ed creature will morph into the orgasma-beast.
Imagine complaining about 20 spontaneous, unannounced orgasms in a day.
I wonder what the scale would be named?
...anyway... Know that you're in my thoughts and prayers.
with warm regards,
Tony
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Hope! http://artonio7.com
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Charlie
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Re: WTF?
« Reply #7 on: Apr 6th, 2007, 7:18pm » |
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It's beyond horror most of the time as well as it sucks that clusterheads and most supporters are the only ones that get the way lives are affected.
Hang on and rant and rant.
Charlie
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There is nothing more satisfying than being shot at without result---Winston Churchill
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Brew
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Re: WTF?
« Reply #8 on: Apr 6th, 2007, 8:09pm » |
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This totally bites the big one, Chris.
I will keep you in my thoughts. Prayers for a cycle that burns itself out quickly.
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Always remember that you're unique, just like everyone else.
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E-Double
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Re: WTF?
« Reply #9 on: Apr 6th, 2007, 8:23pm » |
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I can't believe that I have to bang my
Head against this wall again
But the blows they have just a little more
Space in-between them
Gonna take a breath and try again.
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chewy
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Quote:Imagine complaining about 20 spontaneous, unannounced orgasms in a day.
I wonder what the scale would be named? |
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Euphoric Richter ??
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PollyPocket
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Re: WTF?
« Reply #11 on: Apr 6th, 2007, 9:09pm » |
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That really sux! Hope its a ends soon for you. Rant away and don't worry about it. Sometimes the venting is part of the fighting back.
Wishing you pf time.
Jen
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“Life is all about timing... the unreachable becomes reachable, the unavailable become available, the unattainable... attainable. Have the patience, wait it out It's all about timing.” - Stacey Charter
"If I don't remember it happening, it never happened.  " - Tori
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purpleydog
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Re: WTF?
« Reply #12 on: Apr 6th, 2007, 9:29pm » |
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I can't deal with this it's been non stopf ro 3 hours, I've been through 2 vials and 2 packs of smokes in 7 hours. It's not stopping the trex isn't working. fuck
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ClusterChuck
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Re: WTF?
« Reply #13 on: Apr 6th, 2007, 9:33pm » |
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I am SO sorry you are going thru this, lovie ..
Have you tried hyperventelating on the oxygen? Do it until you feel light headed, "twirly eyed" and even to your fingers tingling ...
I hope you get a break, hun ...
Chuck
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"No man can be happy without a friend, nor be sure of his friend till he is unhappy."
Thomas Fuller
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Kevin_M
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Re: WTF?
« Reply #14 on: Apr 6th, 2007, 9:42pm » |
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Chuck mentioned what I was thinking. Otherwise, I don't know where you are but if it was possible to go to emergency and "REQUEST" a pred taper.
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broomhilda
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Ride it!
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Re: WTF?
« Reply #15 on: Apr 6th, 2007, 10:24pm » |
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 's and pf wishes Chris, hold on tight and kick some a$$
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Suck it up Princess...
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nani
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Re: WTF?
« Reply #16 on: Apr 7th, 2007, 8:34am » |
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Yikes. Chris, is it higher altitude where you are right now? Do you have a cold or sinus infection?
I've had high cycles like that, but there was always a cause. Hope this ends soon. pfwishes, nani
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Others may come and go, but MY power is MINE.
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Tim_w
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Re: WTF?
« Reply #17 on: Apr 7th, 2007, 10:53am » |
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Chris
PF Prayer's headed your way!!
Send some of your hits my way!!!!
Happy Pappy
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We will all go to HEAVEN we have been to HELL! -(Personal Quote) YES There is life out There (Thank you to my new suporters)
They say this will only make me stronger but I did not ask to be SUPERMAN
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purpleydog
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Re: WTF?
« Reply #18 on: Apr 7th, 2007, 11:51am » |
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Thank you everyone. That hit finally drained away after a little over 4 hours. Had a break of about an hour, thank god.
Got whacked one right after the other until I finally was able to go to bed, and I slept for 5 hours without a wake up call. But I got majorly whacked again when I got up.
Chuck, and Kevin, I did hyperventilate on O2, my friend I am visiting has CH too. It actually worked for a little while, then got slammed, but it was a nice short break. Thanks for the tip.
I don't have any sinus problems, nor a cold, I'm not sure what set this round off. I haven't got hit like this in about 2 years, and the frequency stopped after 20 hours, but this keeps going, and going... I am aslo right at sea level, so I know it's not the altitude change. Been shadowing heavy since last Sunday, and started using the trex then when the hits started.
Did not get hit much on the plane, I had taken a Frova. I did lay off the trex for 24 hours. I've never had a rebound effect from trex in the past, I don't think that's it.
Pegg, sis, thank you for being there last night. Chuck, thanks for being there this morning, you have no idea how much that helped me.
I did do a bit of driving between hits yesterday, but I'm not doing any driving today. My left eye is almost all the way closed, and the light, even from my lighter, hurts like hell.
Edited to add. I called my neuro to get a pred taper, he doesn't take after hours call. He is a one man office. Trying my GP, the phone line is being checked for trouble. I do NOT want to go to the ER... but I will if I have to. Not sure now if my trex will be enough to last. We'll see.
Thank you all again.
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| « Last Edit: Apr 7th, 2007, 11:53am by purpleydog » |
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pieface_49
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Re: WTF?
« Reply #19 on: Apr 7th, 2007, 5:50pm » |
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Hello Chris,
Sorry to hear you are in such pain.
Redbull, ice packs, hot shower, Melatonin and benadryl are a few things that come to mind when meds are not available. See you brought up the 24 hour rule when using imitrex and frova.
There is more information important to CH sufferers in the attached URL other than the excerpt below.
"Do not take FROVA if you: have uncontrolled high blood pressure; have heart disease or a history of heart disease; have hemiplegic or basilar migraine (if you are not sure about this, ask your doctor); have had a stroke; have circulation (blood flow) problems; have taken a similar drug (a serotonin receptor agonist) in the last 24 hours. These include sumatriptan (IMITREX® ), naratriptan (AMERGE™), zolmitriptan (ZOMIG™), rizatriptan (MAXALT™), eletriptan hydrobromide (RELPAX®), or almotriptan (AXERT™); have taken ergotamine type medicines in the last 24 hours. These include BELLERGAL®, CAFERGOT® , ERGOMAR®, WIGRAINE®, DHE 45®, or SANSERT®; have any allergic reaction to the tablet."
http://www.frova.com/_pdfs/frova_pil_0809.pdf
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When God was passing out stinkers, I thought He said thinkers. I now have a better stinker than a thinker.
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Jackie
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Go For It!!!
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Re: WTF?
« Reply #20 on: Apr 10th, 2007, 8:00pm » |
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OK, gal.....haven't heard a peep out of you for a few days...
Need to know how you are doing....
Update please...
Jackie
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Paul98
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Sorry Purp. Vent all you want. The short time between hits might be rebound if you are trexing all of them. Something to think about.
Hope the cycle is short.
-P.
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Redd
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Re: WTF?
« Reply #22 on: Apr 10th, 2007, 8:53pm » |
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I just spoke to her, and after a day of reprieve, she was getting her first hit again and went to take a jab.
I hate this condition, disorder, disease, name it what you will.
I suffer this damn affliction, and yet my heart breaks when I can only be a sounding board on the other end of a media line. But I'd be no other place...cathartic I suppose. Puts it into perspective to be there for another.
Thank you to all who have been there for our friend in and out of the public eye.
I'm always as close as the messenger or a phone call sis. Always....
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I saw an act of faith today. A man was on his knees, not in a pew in a Church, but in a garden planting seeds. ~~Unknown
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ClusterChuck
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Re: WTF?
« Reply #23 on: Apr 10th, 2007, 9:14pm » |
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on Apr 10th, 2007, 8:00pm, Jackie wrote:Need to know how you are doing....
Update please... |
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I spoke with her a couple times today. She actually got plenty of sleep, with NO hits!!! Her eye is MUCH better. She even went for a walk on the beach!
Let's hope the pred taper has kicked the beast in the ass!!! This gal NEEDS a break from what she has been thru lately!
Let's hope it goes longer and knocks ALL hits out for her! It sucks to go on vacation, and spend the whole time screaming and yelling at the beast!
Still praying for ya, hun ...
Chuck
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"No man can be happy without a friend, nor be sure of his friend till he is unhappy."
Thomas Fuller
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purpleydog
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Re: WTF?
« Reply #24 on: Apr 11th, 2007, 1:11am » |
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Hello everyone. Sorry I haven't updated. Was sleeping today, after my walk. My neuro called me Monday, and I told him what I was using, up to 3 vials a day (normally a no-no, he didn't say anything, he knows I know what to do), and I wouldn't go to the ER, I have everything I need here, that they have, except a pred taper, and that's what I needed. He asked me a few questions, and had it called in in 5 minutes.
We had to drive 30 miles to get it, me wearing an eye patch. Sorry, no photos, LOL.
Sunday night was the absolute worst I have ever got hit. I had just finished dinner. I just stopped talking, waiting for it. The shadows had been so bad, I've been waiting for the hit to show up before I used anything. I couldn't deal with preparing the shot, my friend had to give it to me. Didn't do a damn thing for me. Was stamping my foot on the floor, couldn't see a damn thing. After an hour and 40 min, I was able to smoke. Was crying like a damn fool. The whole time with my fist pressing in my left eye. My friend, who also gets CH was having a hard time seeing this. I couldn't move from the spot I was in, finally we went to get O2, in the other room (big tank), and I sucked it down for all I was worth. Finally, after another 20 min of that, I could deal.
I never want to do that again, ever. I get hit every day, twice, at least, but those hits aren't too bad. I can deal with them. Sometimes I'll go into a "cycle", higher frequency, more pain, longer hits, and the cycles end after a couple weeks.
I went through a similar episode 2 years ago, but it only lasted 20 hours. With the exception of the 3 hours I had PF on one day, (Sat?) and the 5 hours I slept one night, it didn't stop until yesterday, late. And I guess I mean lay off. Hasn't totally stopped yet, but it is much much better!
I am feeling much better today. Kind of a funny thing, is at one point, both me and my friend were sucking O2 at the same time. I can look back on that now, and see a little ironic humor in that.
Thanks Pegg, for being there, you'll never know what you did for me. Chuck, my friend, I don't know how you do it. For someone that gets hit, HARD, and as often as you do, it's a wonder you keep the great, supportive attitude you have. I hope you get a break soon, it sucks to do this, this often. One thing I've learned from this, is every pain free moment is to be cherished. Those few pain free hours I had were the best I've had, and I will never forget it.
Thank you everyone for the vibes. They gave me a reason to smile between hits. 
Chris
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