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Title: Fear seems to be what causes some lives... Post by oringkid on Aug 13th, 2002, 2:57pm to be ruined. I know it is easier said than done, but you can not let fear of this pain ruin your lives! Yes, this is the worst pain man (or woman) can endure but endure is the operative word here. This does not kill you. It goes away fairly quickly. It seems that many on this board put their lives on hold while in episode and mostly due to the fear of the pain! Your attitude towards this affliction is VERY important. You CAN have a life with this. You CAN keep your job with this. It is a matter of sitting yourself down and saying "I will NOT allow this to ruin my life!" "I will not give in to the overwhelming desire to give up" "I will not allow this disease to become the focal point of my life" Because my friends there are other diseases out there that WILL take your life! If, in the future you should be diagnosed with something that is terminal, you will have wasted so much life by allowing this thing to take it over and dictate to you. You cannot get strength from others, only encouragement. The strength must come from within you. You must be determined. Yes there are others here to help and encourage, but, you ARE alone. Alone in your fight within yourself. Only you can make the decision to not let this thing take your life. It can be done. This is a fact. Love you all! Sherry |
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Title: Re: Fear seems to be what causes some lives... Post by Slammy on Aug 13th, 2002, 3:58pm Sherry, I agree whole-heartedly on the intent of your post, but: 1. " It goes away fairly quickly" : Define quickly! my episodes rarely exceed an hour, but man! that seems a lifetime. 2. : Fear of Pain" : I dunno, but it isn't the fear of the pain. I do not fear pain. In fact, I almost embrace it, knowing it so well...so familiar. I think it is more a fear of having to deal with the pain in public, or among family members. I don't care how tough you are, when a strong ch hits, it fucking drops me like a rock! I cannot function during those episodes, and it's the "putting on hold" the things you are doing during an episode. I have 2 boys, 11 and 14. They are my life! And no matter how much they understand, I DO NOT WANT THEM TO SEE THEIR FATHER REDUCED TO A WITHERING SOUL during an episode. Fuck the pain... that is what I fear....... I deal with everything else. Slammy 8) |
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Title: Re: Fear seems to be what causes some lives... Post by Drk^Angel on Aug 13th, 2002, 4:15pm I'm with Slammy... I don't fear the pain. I can handle the pain. I have to put everthing on hold 'til the pain subsides (normally 2 - 3 hours if I'm away from home and away from my only abortive, O2), but I don't fear it. My biggest problems are the sleep-deprivation, and my severe sensitivity to light, among other annoying symptoms. I'd gladly accept the pain, if I could be rid of these other symptoms that never seem to go away while in cycle. But that's me. PFDAN...................... Drk^Angel |
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Title: Re: Fear seems to be what causes some lives... Post by ChristineL on Aug 13th, 2002, 4:26pm Slammy.............. Don't know if this will help but when I first got my CH's and was Chronic my son was about 6 - 7 years old. I was always afraid that he would be scared of me, the O2 tanks in the living room, my pain and have bad memories. Now that he is 21 he remembers the O2 tanks cuz he thought they were cool - doesn't ever remember being afraid, and is compassionate and well - adjusted. Your boys love you and understand your pain.........they will always be there for you. Chris L |
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Title: Re: Fear seems to be what causes some lives... Post by Margi on Aug 13th, 2002, 4:35pm Slammy, I gotta get in on this one. Chris L really nailed it. You should listen to her. Your boys are your supporters. Let them do their job. We supporters never think less of you guys for being in pain. I've heard this fear before, from lots of sufferers, but please know that those of us on the other side of the fence NEVER think you're weak when we see this pain. Quite the opposite is true in fact. And, it actually helps us to see what you go through. Believe it or not...it does lead to more understanding and compassion. Further, who's to say that one of your boys might not just grow up to be the guy who discovers the cure? Talk about inspiration. First hand knowledge of a crusade is priceless. Send your boys over to the Family Services Team. Lotsa stuff there for them to chew on. |
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Title: Re: Fear seems to be what causes some lives... Post by Slammy on Aug 13th, 2002, 5:45pm Man, I got to remember how to provoke you to post, Margi! ;D I love reading your insights! Thanks! I never looked at it that way, Margi.... and even still, it may take some time....but never understimate the ability to inspire! ditto Chris! Slammy loves ya both! :-* Slammy 8) |
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Title: Re: Fear seems to be what causes some lives... Post by Svenn on Aug 13th, 2002, 6:12pm Have to get into this one and i just hope there will be no missunderstanding here Oringkid ! Maybe you are unique here but i do not think that this is as easy as you think. To be absolutely trou i do not know what is worse,the pain or the fear of the pain.So i better copy my story in here: I know just what you are saying. over the last year i have been 100%antisocial.Never go out because of the fear of attacks when im out and not be able to help my self when i`m hit.Fear of let my neighbours think that i`m a junkie when i has to take the shots+++++++Sometimes I do not know what is worse.The pain or the fear and isolation some of us has. Thats why at least i am here on the net a lot.starting when i wake up about 0730-01:00 in the night.I just feel a lot better here. My beautiful wife is trying the best she can.Sometimes we can get out,but the fear is usually destroing the evening. I know that some of my friends here say that this is "bullshit"feelings,but its still here. I also go to the "brainwasher"for help on this problem,so any good advice will be apriciated a lot. i also like the chanse to add my med here I just wont to add my medications for breaking out of cycle.But remember that i`m not a doc,just another clusterhead from Norway Verapamil Retard 120mgX5-7/daily during cycle Oxygene alone at 10ltm for 15 minutes or combined with imitrex-shots does miracles.The shots should start working in 6-9minutes.a few secons after that you are almost painfree Prednisolone in high doze for 10 days 80mg then over a 3 weeks periode step down like 60-40-30-20-10-5mg /daily This is the miraclecure for me,but i`m not a doc.just another clusterhead from Norway I also have a bad heartcondition.Had a heartattack Nov 12.But quitting the shots is no option for me.I think that the shots is Gods gift to us clusterheads. The thing that i don`t understand or found the answer to is how i after the attack has had only 9 light clusterattacks."singleattacks"And before i was diagnosed as a cronical. But so it has been said."I do not reccomend heartattacks as a treatment for cluster".Its a bit extreme for that.Dont you think? Take care my friend Your friend in Norway Svenn Maybe some of my friends here can give me an answer here,but this is me in a nutshell.But i also has to say that just to find this place and all the great friends i`ve found here has given me a new dimension in life,to be able to support or try and support fellow clusterheads.I`m just so happy to get that chanse. Take care friends |
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Title: Re: Fear seems to be what causes some lives... Post by stevek on Aug 13th, 2002, 6:16pm Well the pain scares the hell out of me. As the cycle wears on I start paying very close attention to any shadow, twitch or other signal from my head, since early O2, imitrex or what ever means no pain. I have a tough time dealing with the pain. I guess we are all different. Take Care, SteveK |
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Title: Re: Fear seems to be what causes some lives... Post by jonny on Aug 13th, 2002, 6:21pm Steve Dude!!!!! I see your still surfing with the alien.....nice to see ya, Bro!!! .....................jonny |
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Title: Re: Fear seems to be what causes some lives... Post by catlind on Aug 13th, 2002, 7:04pm I have to get in on this one too, but then, when don't I stick my whiskers in? LOL. My daughter is 8 and she's seen the good the bad and the ugly (no slammy not my face :P). She has decided she wants to be a Dr. when she grows up so that she can help people like me. How's that for inspiration? She fears that it might kill me, even though we've talked extensively about it, and I've even shown her on the net all about the pituitary gland and hypothalamus and the trigeminal nerves, I think all children fear losing a parent to some extent (it doesn't help that her grandpa died 2 years ago) so communication does wonders. Maybe she'll be a nobel prize winner for curing CH's :) Cat |
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Title: Re: Fear seems to be what causes some lives... Post by Charlie on Aug 14th, 2002, 12:00am Epilepsy is common, CH is rare. Epilepsy is worse in its long term effect but for the most part, it's understood. It's common enough to be part of films an now and then TV. CH is so rare, few have any idea what we're talking about. The effect is that people think we're nuts, addicts, or have low pain thresholds and they are afraid when we run, hide, scream, contort, and sob. It's odd that falling down with a seizure is less frightening than rocking and contorting in extreme pain. This situation doesn't seem to change much and that's scary. Charlie |
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Title: Re: Fear seems to be what causes some lives... Post by kim on Aug 14th, 2002, 7:17am I guess we all know that "fear" thing. Anticipating the next one and afraid we will be out of our "safe zone". I know I have given up social events because of it. You are right Sherry that if you give in to the fear it WILL take away from your life. It's ok to be afraid (how can you NOT be afraid?). I have learned over the years to keep going forward by making an effort NOT to isolate. I now make sure I arm myself with what meds work for me. If get that "feelin" I grab big cup a coffee and get abortive into me QUICK. Then, I hope for the best. If still get hit, I just gotta deal with it until it goes away. then, I go back to having a good time. Understand, though, that it took me YEARS to get to this point. We all go through it. Sort of a process I guess. |
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Title: Re: Fear seems to be what causes some lives... Post by Ree on Aug 14th, 2002, 9:09am When I first started seeing Dave he didnt know what he had... thought he was a freak of nature...When he went to the ER they treated him like he was looking for drugs. His attitude sucked... He felt sorry for himself. He hybernated when he had a cycle and no one understood. I thought OMG I finally find someone and he is going to die on me... I found him a doctor that finally knew his stuff and that lead Dave on the road to understanding... He is not alone, though he choses to be sometimes by ignoring the fact that he has CH when he is in remission. That's why I am here Attitude is everything with CH... I could have run for the hills I didn't (yet). You can take CH and make it work for you. One of my best friends here is a great writer and I am constantly trying to get him to use his talent and write about CH. Could be the best thing that ever happened to him. Your attitude is great Sherry, Christine L, Svenn... Slammy it is true your kids will love you and respect you, no matter what. Your wit gives people a humerous side to CH. Thanks for that... You are right about Margi... years of WATCHING has made her wise. I pray for you all everyday that you will find the help that you all so despirately need... I thank God for the tough people here but also for the weak people that still remember to come here when they are down and ask for an answer... and usually get one. sound like Im rambling... I am... a little down today myself. Im glad I could come here and forget for a while. love you all ree |
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Title: Re: Fear seems to be what causes some lives... Post by nancyc on Aug 14th, 2002, 9:28am When i am getting hit really bad, it is not the pain that makes me afraid...it is the fact that i cant function on my job, etc....the depression and isolation that comes with getting hit 4 and 5 times a day...if someone can live a normal life when the beast is visiting, i tip my hat to them..cause i am not one that can...yes, i try to keep a good attitude , but it is not always possible...when your life is on hold, it is hard to do....smiles,nancyc |
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Title: Re: Fear seems to be what causes some lives... Post by nancyc on Aug 14th, 2002, 10:59am Forgot to add the other side of the coin...since i have been pf now for about 6 weeks, the fear is gone...i have lost 11 pounds, got a suntan and going on a date tomorrow nite. lol...see, things do get better. smiles,nancyc |
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Title: Re: Fear seems to be what causes some lives... Post by echo on Aug 14th, 2002, 11:00am What I hate is the canceled vacations, abrupt ends to what could have been an enjoyable evening with my wife. The pain is just an annoying part of my life, and at times seems to be the only part of my life. |
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Title: Re: Fear seems to be what causes some lives... Post by Slammy on Aug 14th, 2002, 11:13am Sheesh Nancy! I thought you going to keep our date a secret! ( Can't wait to see the tan! ) :D Slammy 8) |
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Title: Re: Fear seems to be what causes some lives... Post by nancyc on Aug 14th, 2002, 11:44am Sorry Slammy ...i was so excited I could not keep my mouth shut ;D....wanted you to know we are going to see "Signs" with Mel Gibson in it...know you will love it. LMAO... ;D nancyc |
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Title: Re: Fear seems to be what causes some lives... Post by Slammy on Aug 14th, 2002, 11:47am Great hon! btw... Mel's son plays on my younger son's basketball team... want me to give him a message? :D Slammy 8) |
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Title: Re: Fear seems to be what causes some lives... Post by nancyc on Aug 14th, 2002, 11:50am PLEASE tell Mel that i love him....and get his autograph for me so i can sleep with it every nite..lol. ;Dnancyc |
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Title: Re: Fear seems to be what causes some lives... Post by karen6468 on Aug 14th, 2002, 11:50am I have to agree with Drk, at least the lack of sleep makes it difficult for me to deal with other parts of my life. And I do fear sleeping when I am getting hit hard. Sometimes I feel like if I could just stay awake all night, then it won't come-doesn't work >:( But I also try not to let the beast rule my life-sometimes I win, sometimes he does but the times I win are well worth it! If I want to make plans to go somewhere when I am getting hit day and night, I just understand that I may need to leave early and if I don't then that is a bonus. Gee can you tell I finally had a PF night and got some sleep-life looks real good today!!!!! |
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Title: Re: Fear seems to be what causes some lives... Post by Slammy on Aug 14th, 2002, 12:32pm on 08/14/02 at 11:50:30, nancyc wrote:
heheh... I am sooo biting my tongue on this one, Nancy :-* Ok, I'll get it.. I don't know if his is on location filming, cuz I haven't seen him the last couple of weeks... but I'll see what I can do for you, luv.... ( anything for a nurse :o ) Slammy 8) |
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Title: Re: Fear seems to be what causes some lives... Post by oringkid on Aug 14th, 2002, 3:01pm Nancy, Signs is an excellent film! VERY scary! But not gross! We went to see it and I posted about it right before all the posts went away! I thought it might be a sign....LOL. Shut Up Slammy! LOL Sherry |
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Title: Re: Fear seems to be what causes some lives... Post by BobG on Aug 14th, 2002, 8:18pm Personally, I thought Signs was about the worst piece of crap that Cousin Mel ever made. I thought the crop-circle hoax stopped 20 years ago. That's my opinion and I'm stickin' with it. Now I'm going to Vegas |
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Title: Re: Fear seems to be what causes some lives... Post by nancyc on Aug 14th, 2002, 11:55pm Shut up Slammy and get me the autograph LOL...and bob g, i would love anything Mel Gibson stars in..dont care how bad the film is..lol... ;Dnancyc |
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Title: Re: Fear seems to be what causes some lives... Post by paul_b on Aug 15th, 2002, 12:03am I have trouble buying into how others might seem me or think of me when I am being floored by a "10". I taught high school for 33 years and there were many times when I was hit with a major attack in the classroom. At first I thought I had to put up a big front (until I had to leave the classroom and find solitude in the Faculty restroom). I realized I was putting more pressure on myself by maintaining a front and worrying about having to do so. It was at that point that my students became informed of my headache problem. Low and behold, I had a support group in the sense that when I had to leave, they took over in my absence. I got to thank them for their mature behavior and they got to grow in a resposible way. I was even told stories of how they kept the trouble makers in line. There was nothing special about the students I taught, they just responded in a respectful manner beacuse that is how I treated them. To me, the same holds true within family. How you share your situation is the key. I am not weak if I tell you I am in pain. I might be perceived as weak if I try to hide it from you. That's my experience, take it for what its worth. |
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Title: Re: Fear seems to be what causes some lives... Post by Drk^Angel on Aug 15th, 2002, 12:35am Well said Paul... We shouldn't try to put up fronts with the ppl we have to work with. It's not like they don't notice something's wrong, and most of the time, it's just better to be straight with them. Admittedly, you'd prolly not want them to witness a full blown attack, but ya should at least explain why you may to leave suddenly. PFDAN..................... Drk^Angel |
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Title: Re: Fear seems to be what causes some lives... Post by nancyc on Aug 15th, 2002, 9:19am Oh, i explained what i had....but i work in a mental health facility for the state of SC...and one day when i got hit, i was at the drug cart counting narcotics...my supervisor would not even take the cart over..i had to inject an imitrex in my stomach rite in front of my patients...and deal with the pain in front of everyone...now, call that understanding and compassion in the mental health field....lol. I am one who does not like for anyone to see me get hit...that is when i found out what fear really is...it would grip me as soon as i walked into work...scared i would get hit and everyone would get to witness it..People who have understanding bosses need to thank their lucky stars cause there are those of us out here, who dont... :Dnancyc |
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Title: Re: Fear seems to be what causes some lives... Post by Drk^Angel on Aug 15th, 2002, 6:46pm Well... Unfortunately, we can't expect everyone to show a bit of humanity. But ppl like that would prolly treat us just as bad if we told them what was happening or not, so we don't have much to loose by tellin' them. PFDAN...................... Drk^Angel |
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Title: Re: Fear seems to be what causes some lives... Post by kim on Aug 15th, 2002, 7:25pm Mel Gibson.............(only if he's wearin a kilt and moonin).... ::) "FREEDOM" (now THAT was sexy). Demon is defined in many different ways by many different folks. I belive them all. That's cuz it's earth we live on. When someone can share a pain free life existence, be sure an send me a ticket. ;) In the meantime, dog the doc, screw the knownots and consider the alternative............... Holier than thou............NOT. |
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