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Topic: Not wanting to be seen (Read 972 times) |
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1968eric
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Not wanting to be seen
« on: Aug 15th, 2005, 6:27pm » |
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I'm just curious how many of you experience this... When I'm having an attack, I can't stand to be near anyone - including my wife. I don't even want her, or anyone else in the room with me. When I first started getting them, (I always get them about 2 hours after falling asleep) I'd wake up from the increasing pain, then go to the living room. She'd follow. I finally asked her not to and tried to explain that it just added to the misery. This part of the clusters is curious. I have never noticed this "sensation" attatched to other kinds of pain, and wonder where it comes from. It seems tied somehow to CH and not part of the normal set of emotions or whatever you'd call it. For example, if I'm sick or have a back ache or whatever, this overwhelming feeling of wanting to be alone doesn't occur. Its almost animalistic - it makes me think of how dogs if they're severely injured will go hide somewhere. Has there been any talk about this? Do any of you notice this? I also notice that I don't even like talking about the CH attacks with most people. The people at work know I have "some sort of headache thing" that I see a neurologist for, but I have never discussed it in depth even though I know they completely underestimate what's involved. I've started to explain it before and they say things like "maybe its stress" or "maybe you're dehydrated." Now it is becoming an issue because (I'm military) we're going to be leaving on a deployment, and I need them to know that when I get an attack, I'm out of commission for about an hour. Maybe its just a male ego thing, but I can't stand the thought of going on about how much it hurts, describing the symtoms, etc., but I don't want to be explaining myself during a mission or whatever if I get hit by one on deployment. I've never had a problem with other injuries or ailments - saying I can't do such-n-such because of whatever - but for some odd reason, I hate talking about the headaches. Anyone else notice that sort of thing?
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Sandy_C
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Re: Not wanting to be seen
« Reply #1 on: Aug 15th, 2005, 6:44pm » |
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Eric, I'm so sorry you are suffering, but glad that you found this website. Please hit the buttons on the left of your screen. You will find a definitition of what CH really is, many tips on living with and controling CH, as much as possible. Please don't try to be the macho man and not share what you are going through with other people who care about you. The people who will rely on your ability to function, need to know exactly why and when you cannot perform. That way, they can cover for you, and themselves , especially in dangerous situations. Yes, I absolutely cannot tolerate being talked to , let alone touched during a hit. Those that understand what I am going through, only because I have had to educate them, know enough to back off. Those that don't know, or don't care, kiss my a$$. I need to be completely left alone to work my way through a hit. After the hit, I do everything I can to make up to them the fear, pain, concern that THEY have for me. Hang in here. Read, Read, Read everything on this site. You will gain a wealth of information, and you will also gain an extended family who cares about you. Sandy
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E-Double
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Re: Not wanting to be seen
« Reply #2 on: Aug 15th, 2005, 6:46pm » |
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Hiya Eric, Many of us go through this so you are definitely not alone in your actions. I think that there may be a few reasons why some choose to be alone. We are in such extreme debilitating agony that we do not want those who care about us to witness it We are in a work place or other public environment and the thought of others witnessing our odd ritualistic behavior during major attack is mortifying Sometimes being bombarded by additional stimuli can just aggrivate us which sometimes can make it seem worse if you are onme who tries to zone out. There are no doubt other reasons that some choose to go at it by themselves. For me, it depends on where I am at and who I am with. At the Dallas convention I got hit a few times in public, though not "10's" they were enough to really hurt. During the lecture by Dr. Rozen, I just needed to sit and kinda rock and bury my fist in my neck. Another time we were all bullshitting @ the bar and it came 0-10 in seconds and I hauled ass in my slides up the stairs and to my room in a flash. Then I got whacked while we were out for the evening. We went to a club to go coc ktailing and dancing and I needed to try to zone it out. I took my meds and kinda stared into space because I knew if I were to get up "it" would punce on me much harder. The ladies I was with were so sweet. One by one bringing over ice bags, ice wrapped in towels, ice in a shaker lmao!! It all depends. Sometimes I want my wife near to rub my neck while other times I want to just be left alone. We're all different Feel good, Eric
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eyes_afire
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Re: Not wanting to be seen
« Reply #3 on: Aug 15th, 2005, 7:01pm » |
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1968eric, Exactly, right on, 100% correct the way I see it. I don't even want to explain anything to anybody anymore. Just leave me alone, let me hide and bang my head for awhile, and I'll be back. End of story. You and me are on the same wavelength. --- Steve
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yikes-another-one
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Re: Not wanting to be seen
« Reply #4 on: Aug 15th, 2005, 7:23pm » |
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At the daycare I found myself minimizing the pain. I mean i had the red eye and tears and swollen eye lid thing going on and a level 8.... and my co-worker looked soooo concerned. I said, "I get these all the time. It should be gone in a few minutes. Don't worry," i said all that in the midst of a level 8. or tried to say it, wasn't really at a normal function at that point. Just paced and rocked and hel my head. She looked concerned a while, and then went on with what she had to do.... once the pain receded, and my eye stopped tearing, when I stopped pacing.... she said, "I can't believe you get them more than once. I thgought you should have gone to the E.R." yada-yada..... and then we went back to work full force. a few weeks later, she asked how my head was. I esplained I was getting the headaches at night, not during the day anymore. She still shook her head with pity.... and politely changed the subject. It's like when you see a friend in the hospital. You hate it, don't want themn to suffer, but can't change the facts....so you just go on. I think It's the saddness in their eyes, I 'd rather be alone too. Just get it over with.
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1968eric
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Re: Not wanting to be seen
« Reply #5 on: Aug 15th, 2005, 7:54pm » |
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Thanks for the replies all. I don't see the hesitation to talk about it so much as a "macho" thing - I think for me its a bit more complex. Part of it I just can't explain. Like I said, if I twisted an ankle or something, I have no problems saying "I'm not running, I twisted my ankle." One part of it is that no one comprehends the severity of an attack. That or they want to re-diagnose you or explain what's probably causing them. Or they tell you about their sister or uncle that gets migraines, or about the sinus headache they had last year. I just don't like the "mine's worse than your's" game. Then there's the part that I think is related to the feeling of not wanting to be near anyone during an attack. Maybe some of it is that I just don't like to sound like I'm complaining. /shrug
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kcopelin
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Re: Not wanting to be seen
« Reply #6 on: Aug 15th, 2005, 8:46pm » |
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Eric, I really think part of the problem is the word "headache". I mean, how whiny, trite, hysterical does that sound?! Also, you are right on-everyone knows someone who has headaches...have been told to relax, lay down in a dark room, try biofeedback, over 1,000 times-no exaggeration. I stopped telling people. Just let them think I was a bitch. Gotta tell you, when I was in the AF it was a major issue-ever get hit while wearing your gas mask? Totally sucks!!! Am retired now, and just lost a county job because this cycle has been hideous-8 hits during the day. I was totally up front with them-downloaded all kinds of information from this site and OUCH. It helped raise their awareness. I explained to them that I absolutely did not want their pity. Just hoped that they would understand that some Headaches are not "normal". I also do not want anyone around me when I'm getting hit. I mean-no one. Its almost an irrational response, but probably for the best for all concerned. PFDAN to you Eric kathy
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Jasmyn
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Re: Not wanting to be seen
« Reply #7 on: Aug 16th, 2005, 3:13am » |
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Most of us Ch'ers are VERY anti-social when it comes to our attacks and yes, it becomes tiresome to try and explain it over and over to other people who cannot really understand. Rediculous solution: Print pamflets on CH and hand them out during a cycle to everyone you meet! (That will save time on explanations!) Hang a poster aound your neck saying: "I have CH. Leave me the F**CK ALONE! READ my BLOODY pamflet!" Just my worth! Good Luck! PFDAN's
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Jazz
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seasonalboomer
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Re: Not wanting to be seen
« Reply #8 on: Aug 16th, 2005, 7:22am » |
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Hey Eric, Sorry you're having a bad time. I too, like most everyone, pretty much isolate when I'm being hit. We have a large closet at the front of our house that I've cleared some good floor space in, placed my O2 rig and I just go in there and rock and roll around. A couple years ago I decided to "come out of the closet" (not that way) regarding my clusters with friends and co-workers. When I was not being hit I decided to get proactive about explaining to people in realistic terms what I deal with. I typically tried to avoid terms like "worst pain known to man" and all that. Instead kept it real explaining things like my closet and how things hurt so bad all I can do is roll around on the floor. Keeping it real about how it affects your life and how you have to deal with it allows them to get a visual. Building an understanding with my wife that the closet is my place, that I just give her the nod and point to my eye and I'm off to the races. She'll check on me a couple times and then afford the space. But only after I explained why I need the space and how having to deal with her concern/fear actually felt like "pressure" to get'er done, which is the last thing you need. She got it. Now almost everyone that knows me well knows what I do and that when they hear I'm "in cycle" they just say "hang in there dude". Waiting till you're getting hit may not be too late to build that communication but it sure works better when you're not being hit. Good luck and thank you for the job you do for our country. Scott
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Major
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Re: Not wanting to be seen
« Reply #9 on: Aug 16th, 2005, 8:16am » |
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Hi there, My husband is the sufferer, and I'm the supporter, and in our house, Jeff prefers to have company during attacks, so I'm pretty much always by his side. Last fall, while still in the midst of a cycle, he went away for the weekend with some buddies, and needless to say, I was in a big panic as to what was going to happen. To see a person in the midst of a CH is so dramatic and so frightening, I gave a couple of guys a heads up (by linking to info on this site) as to what might happen. They emailed me back and said no problem, he'll be ok, we'll keep an eye on him etc etc. So of course, while away, he had a couple of attacks, and tried to casually remove himself from the group and go deal with things on his own. After that weekend, I got a couple of phonecalls at home from a few VERY concerned friends, who were all amazed at the obvious severity of pain that he was dealing with, and not one of them mentioned migraine or stress or anything like that, because it is pretty obvious that it so much worse. I guess to me, as a supporter, it IS important that those around me/him know what is going on, because it is just so dramatic and extremely frightening to witness. I hope you consider letting those people around you know what you're facing. Good luck.
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jcmquix
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Re: Not wanting to be seen
« Reply #10 on: Aug 16th, 2005, 8:28am » |
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I do the same thing, except I go to the Bathroom, with my Weapons in hand (TREX inj, water & Ciggs) and turn off all the lights and start the battle... This used to drive my wife (Sassy_Lady) crazy with worry, she was scared that I was really dying in the bathroom... Since she has been here on the board reading & posting she has a better understanding why I do what I do when I am under attack from the BEAST, just wish more of our family would understand.. But our Home is differnt place now that my Wife understands what I am going through and we have teamed up to Fight the BEAST and kick him to the curb.. I still have my bad days, and I go to my spot and do battle, but when I am done, my Wife is there to comfort me... We now have a life, even when I am in cycle... The only advise I can give is try to get your family members (atleast your Wife) to come here and read & maybe post some, once they have a real understanding it makes things alot easier. PFDAN's to ALL !!!! Charlie
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wip5150
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Re: Not wanting to be seen
« Reply #11 on: Aug 16th, 2005, 12:10pm » |
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Sorry you have had to find our little community here. As has already been said, I really don't like to be around anyone when I'm getting hit. Although people are well meaning, I just really want to be left alone to deal with it they way I have learned through years of trial and error. As far as discussing it with others, I really prefer not to do so. Again, not because I'm "macho" or some super tough guy. I just don't think people understand even though they may really make an effort to do so. Only me, my wife who has seen me crawling in agony on the floor begging for the fucking headache to leave, and other sufferers truly know and understand. So, rather than getting flustered and irritated by peoples well meaning comments of, "Oh, I have headaches too." or, "You need to reduce your stress - that will get rid of them", I just assume suffer in quiet dignity. Maybe that's prideful, but it's honest. Best of luck to you.
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seasonalboomer
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Re: Not wanting to be seen
« Reply #12 on: Aug 16th, 2005, 12:21pm » |
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on Aug 16th, 2005, 12:10pm, wip5150 wrote:As far as discussing it with others, I really prefer not to do so. I just don't think people understand even though they may really make an effort to do so. Only me, my wife who has seen me crawling in agony on the floor begging for the fucking headache to leave, and other sufferers truly know and understand. So, rather than getting flustered and irritated by peoples well meaning comments of, "Oh, I have headaches too." or, "You need to reduce your stress - that will get rid of them", I just assume suffer in quiet dignity. |
| There's quiet dignity and there are also insensitive self-absorbed individuals who won't listen, or don't care to hear what you have to say. I've a pretty good idea of who those folks are anyway in my sphere. But, to expand your circle to well-meaning friends, inspite of their initial inability to understand, is what expanding understanding of this affliction is about. Don't give up on this idea. Having a few more people understand has helped me and many others. Scoring people on their initial reaction of understanding isn't really fair to them either. Odds are they've never heard about CH, don't know anyone else with CH, and if you don't help them understand (when you don't have a headache obviously) who will. Just like you need slack cut, I think we should cut others a little slack -- it's not their job to understand this -- it is our job to help them understand.
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Jeepgun
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Re: Not wanting to be seen
« Reply #13 on: Aug 16th, 2005, 2:50pm » |
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There is nothing quite so humbling as deep pain. I'm the same way, Eric: When I'm getting hit, I don't want to have to deal with anyone else, on top of what I'm already dealing with. I don't want to worry, on top of my own pain, about the kind of worry, helplessness, and agony I am causing someone else. So... When I'm getting hit, I slip out of bed as quietly as I can, but my wife always wakes up and sleepily asks, "You're getting hit, aren't you?" And I say, "Yeah, baby... It's okay. Go back to sleep." And then I make my way out to the living room or down to the basement for the impromptu boxing match with the beast. I know she doesn't go back to sleep. I know she lies awake and worries, and to me, that's the most hellish part of this condition... I was giving a presentation to a group of prospective clients once, and began to get hit right in the middle of it. I've got a very high pain-tolerance, and I'm pretty stoic when it comes to doing what I need to do and carrying on. But as my eyelid swelled and the right side of my face began to droop, I could see horror reflected on the faces of the engineers and executives seated around the table. I wrapped up my presentation as soon as I could, and excused myself to "go to the bathroom." When I went back, a couple of them wanted to know if I was having some kind of stroke or a seizure, or if I had Bell's Palsy. *sigh* They got the quick and dirty tour of what CH is all about.
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bnfreeman
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Re: Not wanting to be seen
« Reply #14 on: Aug 16th, 2005, 6:29pm » |
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Hey there, Like the others I prefer to be alone. Mainly because being around too many people will agitate me and make it worse. I don't like to go into my "headaches" with people because you can't explain it in a short time. For them to really understand me I have to write a book for them. Try getting a letter from your doctor to give to your CO or platoon leader prior to your deployment. My husband is in the military and won't even tell them when he's sick. But when it is serious he knows who he can talk to. Good luck with your deployment and may you be pain free. BF
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Kris_in_SJ
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Re: Not wanting to be seen
« Reply #15 on: Aug 16th, 2005, 7:28pm » |
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Hi Eric, Welcome. I'm with you 100% on the being alone thing. Having people around me - even those I love - is almost too much stimulation. I need to focus intensely and solely on making the pain go away - whatever that takes. You might find some help for your future military buddies under the thread "Letter to Employer and Co-workers" in the Getting to Know You Section of the board. Also, get to the medic or doc of your unit right away to let them know about your CHA. Educate them if you need to. Once you've done that, they can better understand and support what you need to do while getting hit far away from home. PF Wishes and Many Hugs, Kris
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Barry_T_Coles
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Re: Not wanting to be seen
« Reply #16 on: Aug 16th, 2005, 8:35pm » |
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Hi Eric I'm Barry from OZ sorry your here but you are in good company. I wont reiterate what everyone has said above but can only agree whole heartedly. What I have found is a really great help in explaining where we are at is to print of a copy of the piece that Margi wrote about CH, it's pure plain simple english and gets the message across to those who need to know especially your family and close work mates, you can find it in the panel to the left cluster traights, if they dont understand after reading that then they really dont want to know. I know what its like trying to explain the unexplainable especially when your hurtin, I guess a good example of this is a childhood friend of mine and best man at my wedding has suffered for over thirty years and had never told me untill recently, I wont retype the whole experience but if you want to have a read look in the newcomers under any others in Australia. Hope things go well for you and keep punchin Kind Regards Barry
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millie the episodic
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Re: Not wanting to be seen
« Reply #17 on: Aug 17th, 2005, 8:14am » |
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Eric, Welcome to clusterzone. I really hate you have to be here, but I am glad that we have each other. We all go through the same things and hear the same comments. You have to realize that if you are talking to anyone other than someone on this site, 9 times out of 10 they don't really know where you are coming from, unless they live with you, or have witnessed one. I have never been so tired of hearing about other people with MIGRAINES, if only we just had migraines. But this comes from not understanding about the beast. As for me, I took a copy of the "Letter to employer / co-worker to my job for my co-workers. I got tired of trying to hide it, and trying to explain what was going on. Hey, women hate to be seen crying too (unless we are at church or a wedding). I really think that that helped more than anything. When I tell them "I'm out" and they see the ice pack, they know that I am going to the restroom and that I will be back in about 30 mins if I am lucky, it just depends on how long the song lasts. Think about it, if the doctors just barely understand these things, how can we expect regular people to? But really, the only person who really needs to understand and be able to deal with it is your mate. And the more that they find out about the beast, the easier things will be for YOU. They will know when you slip out of bed, what time it is. When you dash for your secret place, they won't follow you. Get your understanding so that they will KNOW without asking or saying anything. It took me a long time to get here myself, but now I don't want to have to try and explain everytime, because I usually get a attitude and I get tired of having to say I'm sorry. You would think that if a person saw you crying or frowning, I figure that should be a sign, but that is not always the case. Until I learn to do the dance and not miss a step, I would rather not have a audience, because it is a trip. My prayers are with you on your deployment, He knows how much you can bear. Lord please don't let him have to take this demon with him!!! Millie
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« Last Edit: Aug 17th, 2005, 8:20am by millie the episodic » |
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burnt-toast
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Re: Not wanting to be seen
« Reply #18 on: Aug 17th, 2005, 8:53am » |
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I never want to be seen - will even go outside if necessary to get away from my wife and children. I'm not sure why - but feeling vulnerable during attacks that are just about all I can endure and not wanting anyone to see me in this state is my best guess as to why. I feel for you in your situation because you can't escape when attacks occur. I hate talking about this nightmare because no one who hasn't experienced or witnessed attacks can even begin to imagine what they're like. Headaches? Just take some aspirin or something - and get to bed/get over it and keep working. By witnessing attacks over the last 10 years my wife and children understand but my immediate family still think I just get lots of headaches. No matter how much I have tried to explain - they will never get past the idea that "they're not just headaches or migranes like so-and-so gets all the time". Everything about you is normal with exception of an enlarged Hypothalamus that for some unknown reason chooses to kick the crap out of you every now and then. My thoughts and prayers are with you. May God watch over you and the rest of our troops. Tom
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brainfreeze
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Re: Not wanting to be seen
« Reply #19 on: Aug 17th, 2005, 11:13am » |
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on Aug 15th, 2005, 7:54pm, 1968eric wrote: I think for me its a bit more complex. |
| You are right about these attacks and it is very weird how they make you retreat. I found that very odd at the beginning too. I call it 'my ritual' now. I'd forgotten how they really bring you to a point where all you can do is 'lick your wounds off in the corner'. It is a strange phenomona. I contribute it to the pain. The pain is so unbelievably intolerable. Sorry your getting hit plus having these thoughts swim through your head. Take care, and God bless.... Wishng you PFDAN.... Susan
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Salvelinus
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Re: Not wanting to be seen
« Reply #20 on: Aug 18th, 2005, 9:13pm » |
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Hi, Eric. I'm so glad you found this site, but it really bites that you had to. I know EXACTLY what you are going through. Like you, I also want to be away from others when I get hit. Except my wife. I don't know how I would have been able to live through this without her. Even so, I don't want to be in the same room with her. I do try to keep her in earshot, though, for when it gets really bad. I'm pretty much non-functional at a 9, and can't even walk at a 10. Sometimes I get pretty nauseous and have vomited a couple times (my neuro thinks I have clusters AND migraines ), and need her to bring a bucket. When it gets really bad, I need her to help distract me. I've been in the military, and dealt with clusters then, too, during the first Gulf war. For me, exercise tends to bring on hits, and makes them much worse. I hated sick call, though, and just tried to make it through. I didn't have a combat-oriented MOS, though, so it wasn't as much of a security problem. Eric, I would really hate for you to be in a combat situation when you get hit. It would be potentially fatal for you and others in your unit. PLEASE discuss this issue with your command, and give them copies of this info. If you need to transfer to another unit or MOS, it would be better than the potential alternative. At least think about it. Hang tough, Eric. We are all here if you need us. Be careful, and stay safe. God bless you. --Scott
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donpc2
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Re: Not wanting to be seen
« Reply #21 on: Sep 1st, 2005, 6:43pm » |
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Eric, I have same feeling, when in a cluster, GET AWAY from me. I would like to talk about your deployment though. I just retired after 38 plus years in the military and lived through it. Military doctors are becoming more familiar with clusters and the various forms of treatment. I do not know what branch of service you are in nor where you are deploying to. I had command of a ship, was able to accomplish that with episodes, even while deployed to the gulf. I also was on the ground in charge of a camp during OIF and managed to make it through. I had episodes during each deployement. In OIF, the doctor gave me small oxygen bottles so was not hard to manage. Yes, I am a lucky one where oxygen kicks it quickly. Get all the info on clusters, go see your doctor, medic or corpsman and set yourself up before you leave. You can do a succesful career and deploy with episodes. hey, if we can live through clusters, we can live through anything. Good luck and God bless you for your service to your country. Don
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Don
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ArCane
New Board Old Timer
Onward through the fog
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Re: Not wanting to be seen
« Reply #22 on: Sep 2nd, 2005, 9:32am » |
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Eric, Sorry that your here but Im glad you could join us . I am like most people and hate being around anyone while getting hit. What you said about it being almost animalistic is right on. Ive seen dogs do it and its sort of like me. Its like this little switch in your head gets flipped and you dont want to see anyone. It seems to make the pain worse if someone is watching me. The irony of all of this is that people that dont know anything about CH will not leave you alone. People that know you have CH really dont get it unless they watch you in a full blown attack. In fact just this week my best friend, which had known I have had these things for 5 years but never seen me in a full blown attack, told me "it seems to me that they are psycological and stress induced." I felt like taking his head off. I gritted my teeth and told him, "Your wrong." We didn't discuss it any further. I wish you the best and want to thank you for what your doing for our country. PF vibes heading your way. Allen
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Alchemy’s First Law of Equivalent Exchange: To obtain, something of equal value must be lost.
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alienspacebabe
CH.com Alumnus New Board Hall of Famer
yup. i am. i do. uh huh. you know it hon.
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Re: Not wanting to be seen
« Reply #23 on: Sep 2nd, 2005, 9:41am » |
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For me, it depends on the KIP level of the CH. If it's just a bit of rocking or knee bouncing then I usually don't leave. If it's more, I definitely don't want any non-CHers around. Always thought I would never want anyone to see the rougher ones. Then at the convention, Nani was there for me, keeping an eye on me. That I don't mind so much because she understood it all. As for people touching me during a CH, all I want touched is the back of my head with a thumb - this small, and very specific area, pushed in (not rubbed) with a thumb as if they're trying to push it through my brain. ASB
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Not until we are lost do we begin to understand ourselves.
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sandie99
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Wish it, dream it, do it - inspite the pain!
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Re: Not wanting to be seen
« Reply #24 on: Sep 2nd, 2005, 12:30pm » |
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Eric, I used to hide once I felt attack starting. I'm one of those people who rather cope with all things alone so I thought that I'll face ch alone, too. But not anymore. You see, because I hid, my nearest and dearest don't get ch. Sure, seeing someone having a ch attack is far from a pretty sight, but if I get them again (my chronic ch went to remission in late April) you bet I'll be near my aunt who thinks that I don't have ch but just say that I have it... I can understand very well that you don't like to talk about it. I talk about it if it feels natural to mention ch and tell people about it. I think that I owe it to my fellow sufferers that I do my part in educating others about it when I get the chance. I study at a university (MA in journalism) and I haven't mentioned that I have ch. It has not messed my studies yet, so I've kept it to myself. I had few hits during classes, but I was able to take meds without anyone noticing it. But I won't hesitate to tell my professors and fellow students about ch. Actually, I'm going to take ch info (I've printed out lots of material about ch) with me once fall semester starts so I'm fully prepared. Perhaps you could do that same? You know, you could show that to people who ask questions about your "headache thing". Anyways, I hope you'll be PF soon. Best wishes, Sanna
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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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