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Lili-Laura
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Don't know what I want
« on: Feb 4th, 2005, 6:48am » |
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Boy! This is hard. Okay, thanks up front to everyone that reads this, as I have a feeling it's gonna be a long post. I have so many concerns & questions, and if anyone can tell me I'm not crazy.
This phase is different from the others:
I missed some days, which makes me worry it's gonna last longer
Not the same time each day - that's stange, they used to be like clock work and increase in attacks - normally first one of the cycle 2am, then 12, 2am, then 12,2,4, untill later only I get them daytime. This time, it started 10am, and then I had my first attack the other day at 4pm, and today it's 1.30pm here, and it's just started. Why did the times change?
I off course appreciate the night rest I'm getting (sleeping like a log at present), but it's embarrasing getting them at work and my co-workers aren't too understanding. I try keep quiet and stay at my desk. But what happen sometimes is once the devil takes his leave, I am so exhausted that I immediately when the pain goes, fall asleep - it's not a blackout but total sleep, if only for 1/2 hour. They (my colleagues) off course now likes mentioning it to me. I'm shy and it's just too embarrasing. I can't take time off work, no way! These other symptoms too, are getting the better of me - queezy, sweating profusely in face & head.
Sorry to sound stupid, but what does it help to go to ER? I've been there before (previous bad cycles) and found that by the time they get to me, the ch is busy subsiding.
I can't get a darn non-rebreathable mask, my precious boyfriend got me samples from a supplier, but I have to close the wholes when I breath in and open them when I breath out. This is akward in mid-attack - the last thing on your mind is to concentrate on breathing right! Thanks to whoever put the pictures of the mask & tank on the site - this is how I am 100% I had the wrong mask. And my tank is not portable so at work I am without 02.
Does anyone use the humidifier thing with the o2? What does it do? Does it help?
Does anyone else get those horrible nightmares and graphic dreams, waking up upset/in tears?
I am a pacer and can't pace with oxygen on, any suggestions?
Why is the cycle so out of wack? It's just that if there's no pain, I think maybe it was just a few episodes and not cycle, and then when I least expect it, I get an attack. I find it debilitating and most inconvenient! I just want to get on with my life.
I also normally get very profound shadows - I don't have bad shadows now, from minor "movement" to full-blown attack.
Also - does anyone get "false alarms" - from nothing (no shadow) to Kip 5, and gone all in 15 minutes? When I started this post, it was about Kip 5 - now clear head bar minor shadows.
Aaaagh! I hate this! I hate it! It's like telling you who's the boss and who's the slave to the paid (Devil boss, me slave!)
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Lili-Laura
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JJA
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Re: Don't know what I want
« Reply #1 on: Feb 4th, 2005, 8:42am » |
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Wow, You're kinda all over the place there. Well, I'll pick a few questions to answer.
Quote:| if anyone can tell me I'm not crazy. |
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You're not crazy, well I don't think you are. CH causes this type of reaction.
Quote:| Why did the times change? |
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Who knows, but this happens to a lot of us. My CH used to be pretty bad, mid sleep, 1/2 hr attacks. Then I had one really short cycle. I thought things were improving. When it came back the next time it morphed into an ungodly 3-4 hr attacks at around 9pm and 6am. Things get better, things get worse, that's just how CH is...
Quote:| what does it help to go to ER? |
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I'm with you there. It makes a horrible experience even worse.
Quote:| I also normally get very profound shadows - I don't have bad shadows now, from minor "movement" to full-blown attack. |
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Lucky you. I changed the opposite way. I used to be a normal person except for 1/2 hr attacks at night. Now, I'm in pain all day during cycles and even shadow sometimes out of cycle.
Quote:| Also - does anyone get "false alarms" - from nothing (no shadow) to Kip 5, and gone all in 15 minutes? |
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Sometimes when the cycle is on it's way out this happens.
Hope this helps
Jesse
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Bob_Johnson
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Re: Don't know what I want
« Reply #2 on: Feb 4th, 2005, 9:45am » |
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Ref. oxygen: 1. Confirm that your boyfriend asked for the right type of mask at oxygen supplier. Check with a different supplier. Print out the picture you found here and show it to the supplier so that you know they understand what you are trying to find.
2. Using O2 and pacing. Get a longer length of tubing between mask and tank.
3. Small tanks are available which you could keep on the job.
Co-workers: on the OUCH site is a handout aimed at employers which explains cluster. You could print it out and give to your co-workers so that they understand what is happening to you. Understanding usually leads to greater sympathy and tolerance.
Questions about changing in time of attacks, etc. We don't understand why these changes occur and focusing on "why?"-type questions will only increase your anxiety as will efforts to predict when an attack will come.
I'm most concerned with the level of anxiety you are experiencing: It will make your experience of suffering increase and it becomes a barrier to developing self-confidence in your ability to cope/live with cluster.
Because coping with chronic medical problems is not only finding medical treatments, please consider seeking a counselor who could help you learn how to manage your anxiety before it begins to turn into depression.
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Bob Johnson
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vig
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Re: Don't know what I want
« Reply #3 on: Feb 4th, 2005, 11:03am » |
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I'm not real keen on ER visits myself.
The one time I DID go... I also had the flu.
They put 2 and 2 together and thought:
Meningitis...
woohoo! next thing I knew they were sticking a long needle in my lower back... This is Spinal Tap!
I'm not going to do that again any time soon.
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never, Never, NEVER quit. -Winston Churchill
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sandie99
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Re: Don't know what I want
« Reply #4 on: Feb 4th, 2005, 1:09pm » |
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Lili-Laura,
relax. 
You're not crazy, the pain inside your head is!
I do recall the same doubt; I had it before the diagnosis.
CH will give you the hard time on every opportunity... Mine was very punctual clockwise in the beginning; 10am, 12, 14, 18, 20.... I could tell what time it was! But not anymore. No one knows what the devil has on its mind. Besides torturing, that is.
When the devil hits you at work, just do what you would do if you're at home. Does your boss know about it? My experience is that when people know what it is all about, they do react differently. I tend to fall asleep too, 4 hours after taking my painkiller. My neuro explained me that its more about CH than the neds; according to him it can have narcotic impact.
And don't ever doubt what comes asking/telling your CH family. We're here for you... 
Best wishes & PF days,
Sandie
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CH happends, Live anyway! PF days to us all!
"Do what you can and let God take care of the rest. Leave your heart wide open and always wish for the best" (Sanna Hillu)
"No matter how far out your dreams are, it's possible" (Marketa Irglova)
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Lili
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I love YaBB 1G - SP1!
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Re: Don't know what I want
« Reply #5 on: Feb 5th, 2005, 1:09am » |
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Hi guys
Thanks for the support. I will print out the piece from OUCH site and hand it out, that's a good idea. Yah my Boss & immediate dept knows, but we're in a huge open-plan office with some busy bodies and its these people (who normally gossip & are nasty) that's making it worse.
Heartfelt appreciation
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BarbaraD
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Hugs to ya
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Re: Don't know what I want
« Reply #6 on: Feb 5th, 2005, 10:22am » |
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When you get hit at work - get off by yourself (if possible) and let it do its thing. Then come back to work. Let your employer know what's going on and the heck with the other people.
My assistant (after years of dealing with me) knows when my eye swells shut to get OUT of my office and close the door. She tries to block anyone from opening it until I'm over the attack. I get "violent" if anyone touches me during an attack and several people have had "near misses" . Pete has literally pulled a few people away from me before I clobbered them. I almost broke my doc's chest bone beating my head against it (they couldn't get me loose from his lab coat), so he's been through one with me.
Don't apologize for having these things. WE CAN'T HELP IT and that's the hard part to get over, but if you really work on it - you can develope an attitude that says - I didn't ask for this - and I don't care what YOU think!
I've been hit in places that were unreal (the most memorable one was O'Hare Airport in Chicago). Most of us have built up a sense of humor to cover things (it's hard, but you have to do something).
And NO you're not crazy. You're ILL! Don't let anyone tell you differently. We have a disease that can't be cured at this time.
Hugs BD
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Bob_Johnson
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Re: Don't know what I want
« Reply #7 on: Feb 5th, 2005, 12:15pm » |
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When my dog was 10-months old he came in the house, his jaw swollen the size of a bowling ball and blood on his muzzle. I tried to clean off the blood to see what injury he had (turned out to be a copperhead bite). His pain at being touched was so great that he took my hand in his mouth and just lightly held it--no bite or pressure--then released as quickly.
It was profound experience for me: A realization that he could protect himself even as he respected me. It certainly changed my assumptions about how to communicate with him.
Wisdom may arrive in unexpected packages.
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Bob Johnson
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Jeepgun
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Re: Don't know what I want
« Reply #8 on: Feb 5th, 2005, 1:36pm » |
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When we get hit, the first thing we do is clench up inside, clench our jaw, grind our palm into the affected eye, and lose control of our breathing.
Now, I've been hit in the middle of business meetings, formal banquets, and while giving presentations to potential clients. Fleeing the room, running off to get by myself, or suddenly flipping out and bashing my head on stuff are just not an option. You CAN maintain control of yourself, and you can ride out even the WORST of these things.
GET CONTROL OF YOUR BREATHING! Consciously tell yourself inwardly, "Inhale.... Exhale.... Inhale... Exhale..."
Once you have control of your breathing, then go limp as an old dishcloth inside. Whether you tense up and "fight," or just relax, the pain is still going to be there, but tensing up, grinding your teeth, screaming... None of that shit makes one bit of difference, and indeed, may intensify and exaggerate the pain.
Next: Once you have control of your breathing and you are relaxed inside, UNPLUG from the pain. YOU, the essential core of YOU, is not this physical body! You are NOT this pain! Getting all angry and violent about it isn't going to solve one damn thing. So..... Why not quit having ANY emotion about it, one way or the other? It's going to come when it's going to come, and it's going to stay as long as it's going to stay, and it will go when it's ready to go. There is NOTHING you can do about it, when you can't reach out for the oxygen or break open an Imitrex shot, so fugg-it.
Why relinquish your control of yourself to the Beast? Why?? That makes absolutely NO sense, even with the WORST hits!
1. Breathe!
2. Unclench and R E L A X . . . .
3. Detach and unplug. Let it be.
4. Get on with LIVING your life. Don't let this condition rule you!
-Frank
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Her: "Have you ever hit a deer?"
Me: "What, like, in the FACE?"
Her: ..... "WHAT is the MATTER with you!?"
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Lili-Laura
New Board Newbie
Lover of Dogs & Cats
Gender:
Posts: 27
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Re: Don't know what I want
« Reply #9 on: Feb 6th, 2005, 11:58pm » |
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Hey. Thank you guys! That's what makes this site such a HIT! By getting perspective on things. If you try coping by yourself, you forget about all these other things, and seeing it through co-sufferers' eyes.
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Lili-Laura
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