|
||||
|
Title: The Mental/Emotional Aspect of CH Post by Jeepgun on Jan 14th, 2005, 12:17pm This is a topic I've been turning over in my mind for a few days... (If anyone smelled something burning, that's what it was!) Whether one is a chronic sufferer, or an episodic in cyle, we all know the physical pain, pressure, and all of the physical symptoms. What is almost never addressed is the mental and emotional components of this disease, which I've come to feel are a vital aspect in our fight against the Beast. Here are some mental/emotional symptoms that I have observed in myself: Dread, frustration, anger, depression, mental weariness, lethargy, and at its most severe, serious thoughts of suicide. Dread at when that next cycle is coming. Dread at awaiting the next episode of being slammed by the Beast. Dread at the utterly speechless level of pain that we know is lurking and may spring on us at any moment. Frustration at not being able to lead a "normal" life. Not being able to do the things that we want to do. Frustration at being misdiagnosed, or at peoples' lack of understanding, or people saying that the pain can't be "that bad," or being told things like, "Just take an aspirin and lie down," and the usual litany of idiocy that we often endure. Frustration at having family times and special occasions ruined by bouts with pain. Frustration with doctors, insurance companies, medications, and on and on. Frustration and anger go hand-in-hand, and if the Beast were a physical entity that we could pummel or kill, there would be someplace to vent our anger, but because there is really no outlet for that anger and frustration, we end up internalizing it. Turned inward, it becomes severe depression. After weeks, months, years of wrestling with the Beast, we grow mentally and spiritually weary and our spirits become weakened and so tired of fighting, so tired of the futility and lack of logic to it all. So tired of the doctors' visits, tests, being a guinea pig for medications, tired after taking hit after hit and having our deepest, most recuperative and beneficial sleep blasted and destroyed by cluster attacks. Weakened by fear and pain and frustration and despondency. After constant pain, so unrelenting, being so weary, depressed, angry, and sad, it only follows that thoughts of suicide are never far away. All the "vibes!" and "hang in there!"'s just seem to ring hollow... I don't really have a point to all of this, and really, it only serves to illustrate the obvious, but I do think it should be addressed openly, so that perhaps a discussion of coping mechanisms can be started, and thus, help us to give real and truly useful support to those who are dealing with these issues and those will be dealing with these issues in the future. Hopefully, this will also give some perspective on why sometimes people seem to snap around here, and help bring a note of compassion to the discussions and reactions. Last, but certainly not least, there is the stress of being a supporter, that I would also like to address, and supporters, please feel free to jump in and offer your perspectives. Truly, there are few things more distressing in life, than to watch someone we love, hurting and wrestling with deep pain, and feeling helpless to do anything at all. How utterly hellish... And I suspect that many supporters also go through similar cycles of emotion, when someone they love is in cycle, or is chronic. I hope that this is one thread that is not hijacked, and that something productive and truly beneficial can be brought forth from this discussion. Old-timers, newbies, whatever: It doesn't really matter. We're all (hopefully) trying to row this boat together. An open invitation to honest, pertinent, and real discourse. My best to you, -Frank |
||||
|
Title: Re: The Mental/Emotional Aspect of CH Post by nani on Jan 14th, 2005, 12:29pm Quote:
Chocolate Mousse cake. Works for me many times. ;;D No seriously, you're so right Frank. Add to all this hell the fact that many of us are also facing other things in our lives that produce feelings of anger, frustration, hoplessness... I sometimes have to give myself a time out. I lock myself in my room, put on some New Age or meditation music and just breathe. Meditation type breathing, where you are slowing and consciously breathing. Your only focus at that moment is the breath itself. It has an amazing effect on my whole being. If I am out and start to feel like I want to lash out, I just give myself a silent reminder to "Just Breathe". |
||||
|
Title: Re: The Mental/Emotional Aspect of CH Post by Hirvimaki on Jan 14th, 2005, 12:34pm Great topic, Frank. But it's Friday just before noon. You expect me to THINK? I look forward to reading everyone else's comments, but there is no way on a PF Friday that I can do anything but a happy dance... I've always thought there was a connexion between my OCPD, manic-depression and CH. I do know that I always have a severe down-swing (emotionally) right after a CH attack. The sucking-the-light-and-joy-out-of-your-soul kind of depression. Not just the blues. I'll post more thoughts later when I'm done with my happy dance. Hirvimaki-Isi |
||||
|
Title: Re: The Mental/Emotional Aspect of CH Post by kimh on Jan 14th, 2005, 12:54pm Yup, Frank. I've talked about the importance of acquiring those coping skills many times (althought perhaps not as eloquently as you :D). Anyhow, you are spot on dewd. Here's the thing: People who have clusters all go through a process - just like people everywhere who suffer all sorts of illnesses or experience all sorts of trauma. We all start at one place with clusters and experience similar feelings throughout our journey. I think it would be interesting to sit down and talk to a newly diagnosed young cluster patient and discuss a format -- and then sit down with an older cluster patient who has experienced a longer time with clusters with that same format -- i bet ya'd get TOTALLY different perspectives. Sure, medicinal avenues MUST be continually explored, but in the end, there is NO CURE for cluster headaches and each of us bears the burden and responsibility to ourselves to acquire those most CRUCIAL coping skills. Hohaw, good subject and we should tawk :D |
||||
|
Title: Re: The Mental/Emotional Aspect of CH Post by Langa on Jan 14th, 2005, 12:57pm Great Post Frank... Dread, Anxiety and Frustration are the emotions I struggle with mostly with CH. You'd never know it by looking at me though...I can hide them well...the way I was raised I guess...so because I internalize so much, I usually get affected with other things, like insomnia, loss of appetite. So in the last couple of years I've come across some things that help...working out, walks on the Hudson River with my Doxie, Classical Music, Breathing excercises and realizing that I need people and that it's okay to open up about how I feel...I have my chosen few, but it does feel great not to have to pretend to be so strong sometimes and allow others in to help. Very difficult for me...but i'm learning... ;) Langa |
||||
|
Title: Re: The Mental/Emotional Aspect of CH Post by PrettyH8Machine on Jan 14th, 2005, 12:59pm I am a very emotional person. Sometimes I think I feel things too deeply. Have felt everything you described and more, sometimes on a daily basis. Besides the physical pain of CH, there is the mental torture of 'when is the next hit coming? will it abort? will I have to ride it out?' that lurks in the background of my brain. Add to it sleeplessness, chronic fatigue, and it really messes with the mind. I have been heavily suicidal at different times and made a second attempt exactly 2 years ago. How and why I survived that is still a mystery. I'm glad now I didn't succeed, even though I still think about it sometimes - mainly when I am in an attack or when I come out of one, especially if it has ruined an event of any kind. I know I am not the only one who has been suicidal because of both the pain and the stress brought on by CH. The IMPORTANT THING is to find someone who understands that you can talk to when you are getting those thoughts. Oftentimes talking things out brings us to a kind of self-realization. On the other hand, keeping it to yourself can cause you to dwell on the negative aspects of the loss of quality of life. I think often about my niece and, if I had succeeded 2 years ago, how that would've affected her. I'm her favorite uncle and as it is, she gets upset with me if I stay away too long. I think out of everyone, it would affect her the most. Anytime I get those suicidal thoughts nowadays, I think of my niece and nephew. Another sobering thought is that, no matter how bad it gets here, someone else has it worse than I do. I don't find comfort in that - it just reminds me I'm not alone. Lately, I haven't been depressed. Instead I am in 'fight mode' and determined to get back the years that the beast robbed me of. I have also been experiencing alot of heartache - from losing a friend and aunt in a months time, and from seeing others who are hurting - that tears me up. Thanks for that post Frank. I think we even ourselves tend to forget that battling the physical pain of CH is only half the battle. Peace and PFD&N's, CD |
||||
|
Title: Re: The Mental/Emotional Aspect of CH Post by ccbiggsoo7 on Jan 14th, 2005, 1:03pm Frank , very well put. Amen brother! Could you memorize that speech and come to my neuro w* HA! |
||||
|
Title: Re: The Mental/Emotional Aspect of CH Post by lionsound on Jan 14th, 2005, 1:20pm So I’m sitting in a possible new therapists office last week and she asks me,“are you depressed?” I said, “that’s hard to answer” She asked me if I was suicidal (these are standard questions, I’m okay, don’t freak out). I said, “no. I’m not” She then asked again if I felt depressed lately. And , “you seem to be doing well today.” I said, “well, Today, right now, I’m not depressed. But give me another second, minute, hour or day and it will change…. it can change in an instant.” |
||||
|
Title: Re: The Mental/Emotional Aspect of CH Post by taraann on Jan 14th, 2005, 1:58pm Very true and Well Said Frank. I always think, If I weren't so damn tired I wouldn't be so damn depressed/moody sometimes. |
||||
|
Title: Re: The Mental/Emotional Aspect of CH Post by nani on Jan 14th, 2005, 3:58pm bump |
||||
|
Title: Re: The Mental/Emotional Aspect of CH Post by notseinfeld on Jan 14th, 2005, 4:02pm Perhaps the upside is that if you can live through/cope with this, nothing else can put a dent in ya. When all else fails, mary palm and the 5 sisters, boys. |
||||
|
Title: Re: The Mental/Emotional Aspect of CH Post by Sean_C on Jan 14th, 2005, 4:17pm Suicide is not the answer to anything people, it definately isn't the answer to stop clusterheadache. Suicide is more than likely because of severe depression and shouldn't be treated lightly when symptoms begin to show with any of us or friends. It can be treated successfully and treatment is free if needed. Don't let your mind dictate to you, dictate to your mind. Please help yourself or a friend before its too late. I've lost two friends to this selfish act, I don't need to lose another. The lights always on here, guaranteed ;) Sean............................ |
||||
|
Title: Re: The Mental/Emotional Aspect of CH Post by Jeepgun on Jan 14th, 2005, 4:21pm Ditto, Sean. I'm sorry for the ones you've lost. Can you explain more about "dictate to your mind," please? Thank you. -Frank |
||||
|
Title: Re: The Mental/Emotional Aspect of CH Post by BarbaraD on Jan 14th, 2005, 4:22pm Thanks Frank. You put it very well. We all suffer depression and YES, we've all thougth of suicide when we think these things just won't quit. There's been some threads on this over the years, but it's something good to bring up periodically because newbies tend to think there's something wrong with"them" when it's something we all deal with. I think the longer you deal with these things the more complacent you become, but when your life is disrupted and you can't plan ahead more than 5 minutes - it's hard NOT to get depressed and wonder how to cope. It's hard to put into words, but you did an excellent job. Hugs BD |
||||
|
Title: Re: The Mental/Emotional Aspect of CH Post by Jeepgun on Jan 14th, 2005, 4:31pm Thank you, Barbara. [smiley=hug.gif] |
||||
|
Title: Re: The Mental/Emotional Aspect of CH Post by Sean_C on Jan 14th, 2005, 5:02pm on 01/14/05 at 16:21:07, Jeepgun wrote:
Thanks Frank, I think of them daily believe me. Lets see, dictate to your mind, my meaning would be someones "inner conflict with oneself" if someones thinking bad thoughts, turn it around. Talk to a friend who listens, or talk to a biased person who can relate to a problem they might be experiencing. There's no problem that doesn't have a solution. Most all will pass, most all of us remember a time when we felt like crap and it eventually went away, as it always will. Life has enormous ups and downs, we all feel it, its just how we handle it that makes it different from time to time. If you feel like your not in control with your emotions, then you have to step up to the plate and ask for help, it not something to be ashamed of, it happens to THOUSANDS of people all the time. People can get through depression, sometimes its that first step that helps the sun shine again. Again, we're here for all, we are family. If anybody needs a hand, myself and others are more than willing to help another out ;) Love to all, Sean............................ |
||||
|
Title: Re: The Mental/Emotional Aspect of CH Post by Tiannia on Jan 14th, 2005, 5:20pm I think that there are a couple of points that need to be brought up and expounded on. As I was first diagnosed with this 18 months ago, I found that I hit a hard wall of denial. As at this point I am still chronic, I still face that denial from time to time and keep thinking that at some point a doc is going to do a test that is going to show something else is causing this. That there is something physical that I can point to and focus on and I can be angry at that. But with CH there is nothing that you can show anyone, There is nothing that you can look at to say "That is my nemesis." I think that this is what adds to the depression. Because there is such a lack of understanding and knowledge regarding CH, we are forced to deal with this alone in so much of our physical lives. Yes we have the family here and some are lucky enough to have other Cluster heads that are close enough that you cans see each other regularly, but many of us are forced to keep this internalized and fight it alone. I think that this is even harder on those of us that are women. It is so hard for me to see how much it hurts my husband to see my in so much pain that he can not do anything about. So I try very hard to hide it or at least try and minimize it around him to try and save him, not really realizing that I am probably hurting him more because I am closing him off from part of me. Besides closing myself off more to the help and support that I need to stay out of the depression that can take over so easily. I think that Sean has a right idea with the "Dictate to your mind" concept. But it is not an easy one to see and work with especially if you are currently in a depression. The idea is to change the way that you think. Change they static thoughts that run through your head. It is like an internal tape recorder. People who live though abuse will often hear the same degrading and hurtful comments over and over again until you find that you believe them to be true no matter how often people tell you differently. Everyone has the power to change what is played on that tape. But with CH because we get so worn down and tired the depression and make it seem that suicide is an answer because it will make the pain stop. Granted there are other things out there and the pain, even though it will come back (and for some of us that is more often then others) is only for a short time. But when you are stuck in a situation where meds are not working or your docs are not listening and nothing is getting better and the cycle is at its worse, then that internal tape can be your worst enemy. It can also be your best weapon, if you can train yourself to "hear" other things. If you can believe that there is always someone that will be there even if it is just in the chat room. Or a phone call. Or whatever it is that you need. It is not easy to change that internal tape. I know because I have had to do it a couple of times. It hurts and many times you are forced to face your personal daemons that can really break you down. But it can be done. And it is that much easier if you can find at least one person that you can be completely honest with and talk to them about it. One person that you can tell anything too, without the fear of judgment. One person that you can tell them your deepest fears and get it out because once you can get it out of your head then there is open space on that tape to put in new stuff. And that new stuff can be just the thing that helps you to get through a night that emotionally and mentally the beast is kicking you to the curb. |
||||
|
Title: Re: The Mental/Emotional Aspect of CH Post by Jeepgun on Jan 14th, 2005, 5:25pm Right on, Sean and Tianna. I couldn't agree more. And if anyone is reaching the edge, or needs support, wants a hug or a kick in the ass, PM me. I'm always more than happy to pick up the phone, in the evenings or on weekends. -Frank |
||||
|
Title: Re: The Mental/Emotional Aspect of CH Post by Sean_C on Jan 14th, 2005, 5:37pm Exactly T, I have definately felt your anguish over and over throughout the years. I was alone for over 23 years till I found this place, I was SHOCKED to say the least at how many people felt my pain. In fact at first I thought it was a joke, nobody could possibly endure the pain I feel, its impossible.................WRONG ;;D I have alot of hard years under my belt T, med free, mis diagnosed, the wear and tear of a clusterhead I guess. I've lost alot of friends and kept alot of good ones I guess. Sucks to be remembered as the guy who gets those "things" at reunions or parties ;;D We are the strong of the strong.................the brave of the brave, we are pain at its worst and survive. You are everything to me, all of you, never forget that ;;D Call me if you get a chance, it'll be good to laugh ;;D Sean.............. edit: (sp) |
||||
|
Title: Re: The Mental/Emotional Aspect of CH Post by Renee on Jan 14th, 2005, 7:15pm Re: SUICIDES DUE TO CLUSTERS « Reply #50 on: Jan 8th, 2005, 9:47pm Quote:
Quote:
Yes, it is VERY mentally and emotionally wearing. But, sometimes the board gets so busy bickering that the weary posts get lost...no responses. We have to watch as a suicidal ch'er is probably not going to post that they are about to end it. p.s. Things are a bit better now. |
||||
|
Title: Re: The Mental/Emotional Aspect of CH Post by LeLimey on Jan 14th, 2005, 7:38pm on 01/14/05 at 17:20:51, Tiannia wrote:
All this really helped and particularly those points. I found myself sitting here and nodding to everything you have said. Thanks Tia for expressing what I feel and couldn't convey [smiley=hug.gif] |
||||
|
Title: Re: The Mental/Emotional Aspect of CH Post by CC2004 on Jan 14th, 2005, 8:22pm on 01/14/05 at 17:02:16, Sean_C wrote:
Thank you Frank and every one of you for contributing and making this such a special and valuable thread I agree with Sean, DICTATE to your mind - we each have the power to turn it around, to turn something negative and descructive into something helpful and constructive... HOW we each cope as individuals will always vary, yet there are commonalities and more than one ray of sunshine for each of us to be found above, and even in the midst of depression a part of us knows we have the ability to help ourselves cope better by bring in to play just one little thing, to just take the first little step towards whatever it is that will help, to begin to step out of it I may well lose here whatever credibility I might have, but for me that little step is to remember KARMA, and I mean karma in the deepest sense of its meaning. I absolutely believe we reap what we sow, but more than that I absolutely believe we live more than once, and for my part I believe my CH is to work off karma for some seriously bad shit I must have done last time around. I forget this often and feel sorry for myself when these bastards attack me, but my very wise and beautiful nana joan gave me a reminder recently when I was talking to her about my 16 year old son who is breaking my heart - she said "remember each time he hurts you, with each hit say to yourself 'well there's another bit of karma worked off' " , and I cried and cried, with gratitude, because I remembered again the big picture - we are not mere victims, WE CREATE OUR OWN REALITY. I feel 100% better about my son now, and I hope we can get things back on track when he comes back, but I have also been able to use this to remember this applies to CH as well. I have lived with the belief and knowledge of karma and reincarnation for half my life now (nearly as long as with CH!) but I STILL forget! But one thing I rarely forget in my other life (I hope), and in my world here also, is do unto others... I lost the plot a few times here early on, I guess many of us have jumped in at some time or other without realising what we're doing, but my intentions are always intended to be positive and hopefully helpful in some way. I for one generally enjoy sarcasm and have had such great laughs from the board, but sarcasm is not funny when it is ficious and IMHO there's been far too much of that around here Lets all try to remember the good intentions here in this thread, and try NEVER to feed any trolls on any threads, to remember why we are all here and be CONSTRUCTIVE not destructive! [smiley=twocents.gif] (hehehe!) thanks again Frank and all of you - bless you all CC [smiley=blush.gif] edited to add - PS please dont take me wrong - I FIGHT THE BASTARDS with all my might, they are the enemy, dont think I welcome them, BUT each and every time I win its another bit of karma paid off, its not just meaningless pain - and there's no way I'll be getting this CHit next time round, I am paying off my debt with as much strength and grace as I can muster |
||||
|
Title: Re: The Mental/Emotional Aspect of CH Post by thebbz on Jan 14th, 2005, 8:49pm dread dread [dred] vti (past dread·ed, past participle dread·ed, present participle dread·ing, 3rd person present singular dreads) 1. feel extremely frightened: to feel extremely frightened or worried about something that may happen in the future 2. be reluctant: to be reluctant or frightened to do something because it is unpleasant, upsetting, or annoying n (plural dreads) 1. terror: a feeling of great fear or terror, especially at the thought of experiencing or encountering something unpleasant 2. source of dread: something that is dreaded 3. awe: a feeling of awe and reverence (archaic) Microsoft® Encarta® Reference Library 2003. © 1993-2002 Microsoft Corporation. All rights reserved. Oh that's going do the old PTSD wonders..LMOL [smiley=laugh.gif] Dread is good way to put it. Anticipation ? ...as he nods to all, hey that sounds familiar. And then,on top of it all,the whole range of emotions one goes through in just the first 30 minutes with the demon. Starts with why me, then denial,crying pacin,thrashin,progresses to a whithering, snot slingin, prayin, beggin, to anger to, .....sound familiar. sheesh! Who wouldn't get depressed after 3 or 4 months, or chronic. Mentally I have a separate dope bag for. LOL There are several mental training technique's that help ...In this corner weighing in at 3000 lbs..undeafeated in over 3838,88..bouts....the demon ...I dont think so! Fight the depression and the demon like your life depends on it because it does in some respect. Never give up !!DING!! Fight the good fight. "Frustration at not being able to lead a "normal" life." What and Who is normal anyway? After 26 years of this shit,I dont have a clue. But I'm learnin. Good thread Frank. BB |
||||
|
Title: Re: The Mental/Emotional Aspect of CH Post by CC2004 on Jan 14th, 2005, 9:19pm just a question on one of the "frustrations" Frank mentioned - does anyone have a catch phrase we could use when we get some supposedly well meaning advice from friends & family out there in the other world, like "try to relax, you bring them on yourself" [smiley=sayno.gif] or other nonsense like that - there must be something succinct we can say in a meaningful (but hopefully nice ;;D!) way to let them know this is not a headache, not even a meegrain [smiley=pokeeye.gif] any ideas??? CC |
||||
|
Title: Re: The Mental/Emotional Aspect of CH Post by nani on Jan 14th, 2005, 9:22pm Collette...how 'bout..."Here let me stick a chef knife in your eye, it kinda feels like that, but worse. ;;D |
||||
|
Title: Re: The Mental/Emotional Aspect of CH Post by CC2004 on Jan 14th, 2005, 9:34pm on 01/14/05 at 21:22:51, nani wrote:
hehehe "...and wiggle it all about whilst standing in a freezing cold f**k'n shower and bashing whats left of the rest of your head against a solid wall... dear Frank, you know I love you - this is not meant as a hijack - Im going to start a separate thread sorry [smiley=bag.gif] CC |
||||
|
Title: Re: The Mental/Emotional Aspect of CH Post by nani on Jan 14th, 2005, 9:39pm ...that's it...now you're getting the idea. Oh wait...you said a nice way. Beats the hell outta me. ;;D There was a thread on the general board awhile back by Langa that really beautifully states how we should say things. |
||||
|
Title: Re: The Mental/Emotional Aspect of CH Post by Charlie on Jan 14th, 2005, 11:04pm Nice Frank and everybody. Thanks. I'm not a good example because I already knew several neurologists that handled my epilepsy and the one I was seeing at the time diagnosed it without testing. He described it so well that there was no question. He knew me well enough to know that I was telling the truth. Many of my friends at the time were nurses or retired from the profession and they made things go well with my family. Everyone should have been so lucky when it came to that. Your horror stories about mis-diagnoses are terrifying. :'( The technique that I post here came from this same doctor and it took so much concentration that I didn't have time until it ended to want to carry out my desires to kill people and destroy things. I do know what you mean though and I hope that I will be able to help a clusterhead understand or find this place some time. You people are amazing. Charlie |
||||
|
Title: Re: The Mental/Emotional Aspect of CH Post by Tiannia on Jan 15th, 2005, 2:21am on 01/14/05 at 20:22:28, CC2004 wrote:
You know I have to agree. There are other physical disabilities that i have delt with and still do that I have asked. :What did I do in a Past life to deserve this?" And CH is another one, that I feel that either I am paying for somethig I did. Or )and I believe this to be more the truth in my heart. That CH is teaching me somethign that I NEED to learn in this life. That by having to deal with this unforgiving unrelenting pain. That there is no rhyme or reason to.. that I am learning somethign that I need in another time. It might not be this life. But I KNOW that there is a reason for this. I dont welcome it and if I could make it stop I would. Not into self punishment. But since I do have it deal with it, then I will make the best of it. I spend more time sitting and playing with my kids now then I did before I got CH. Because everytime the Beast is done and I can stand up again and know that I survived, they are the thing that I fight for. So just the fact that I enjoy my PF time more rather then taking it for granted is a blessing to me. So many people rush through life and never take the time to realize that what they have is good. They are always looking for the bigger and better, toy, house whatever. But sometimes (most of the time) it is the simple things that bring you the most happiness. Blessed Be and PF Wishes my friends, -Tia PS Sean, Thanks for the PM. I'll try and make sure to give you a hollar sometime. [smiley=hug.gif] |
||||
|
Title: Re: The Mental/Emotional Aspect of CH Post by TxBasslady on Jan 15th, 2005, 3:05am I think it's the mental and emotional aspects that do me in. The physical pain is bad enough....but the after effects sometimes seem endless. When I was a little girl, I was afraid of the dark. Countless times my Daddy sat on the edge of my bed trying to convince me that all was ok.....there were really no monsters or demons, or bad people trying to get me. At some point in my childhood, I was able to overcome this fear. For many years, I had no fear of anything. I have a great life....raised 3 wonderful sons....and have 8 fantastic grandchildren. Somewhere in my perfect world, the beast decided to invade my space. I now find myself afraid and scared again. Afraid to sleep....afraid not to. Scared of the pain and not knowing when the next CH is going to hit. No real "cycle" to relate to. I don't know if I even have a cycle. The not knowing is mentally taxing. I would like to be able to approach a particular time of the year, and know that it was a cycle. However, I have not been able to do that. I save all the neat im's and email's that I have received here......and when things get tough....I go and read them. It really helps knowing that you all are here. Those words of encouragement and love help so much. My CH Angel is always there...ALWAYS. She never misses a beat. She knows when things aren't right. Sometimes, I close my eyes.....and I hear the words my Daddy said....and I wish I could go back to that time.....to the time when all I was afraid of was the dark. J |
||||
|
Title: Re: The Mental/Emotional Aspect of CH Post by maureeng96 on Jan 15th, 2005, 3:11am Frank, I cannot relate firsthand to the pain of cluster headaches, but I am offering the supporter perspective that you asked for. My boyfriend went through the typical misdiagnosis that most of you deal with. He had already been suffering with "migraines" for about 6 years when I met him 4 years ago. Wanting to learn more about migraines, I did some surfing, and came upon this site. His symptoms fit clusters to a "T". He was episodic when I met him, then turned chronic (he still wasn't on any prevents at the time). About two years ago, he started Verap and Dep after 4 days in the hospital. He has oxygen now and uses Imitrex to abort, but he still has bad cycles about twice a year. I see his feelings of frustration when the cycles start up again. I will never truly understand the extent of his pain, but he doesn't understand the extent of my pain. If feels so helpless to sit here and watch him pacing and suffering and know that there is very little I can do. I get his meds, make him coffee, heat up a wet towel, but that's it. After doing all this, when I try to sit with him, often he'll tell me to get away from him. I know he didn't mean it as a rejection - he just can't deal with anyone that close. But, sometimes, it gets too much for me. When that happens, I go in another room, cry for a few minutes, then go back to see if he needs anything else. I think we've had more "dates" at the ER than anywhere else. We both know that pain meds are not a long-term solution, but when he gets to that point, he doesn't care about the consequences later, he just wants to get rid of the pain now. But, that's a whole other thread. Many days I've gone to work on no sleep after staying up with him all night. Some nights, I just can't stay up with him, then I feel the guilt of abandoning him, especially if he has to drive himself to the hospital. Sometimes I feel resentful (not towards Steve) that I have to go to parties and family functions alone because he was up all night the night before. I also get frustrated because he loses hope of finding a better combo of meds. I have done a lot of research, and the treatments that have helped were all meds that I learned about here, but he didn't try them until his doctor put him on them years later. When I call him, I can tell by the sound of his voice, or the stuffiness of his nose, that he is having an attack. I know what level he is at by how red his eye is, or how flushed his face gets. We supporters will never know the exact feeling of the pain, but we do understand this condition and how it affects your lives. Sorry to have rambled on so long, but it felt good to get that off my chest. I am here for anyone else who needs support, as are many others. The wonderful thing about this site, is that, no matter what time of day (or night) I logon, there is always someone here to talk to. This is an open invitation to anyone having those feelings of desperation - if you see me online, feel free to IM or e-mail me. Peace and comfort to all! Maureen |
||||
|
Title: Re: The Mental/Emotional Aspect of CH Post by TxBasslady on Jan 15th, 2005, 3:33am You just can't beat the "unconditional" love of a great supporter. Maureen, Great post! Love for your sufferer is the best medicine. Even tho we sufferers sometimes shun the attention when in the midst of an attack, it does not go unnoticed. Stay strong.....hang in there and keep doing what you feel you need to. Good luck and lots of PF vibes Jean |
||||
|
Title: Re: The Mental/Emotional Aspect of CH Post by Jeepgun on Jan 15th, 2005, 12:27pm Everyone, thank you so much... I've learned more about what other cluster sufferers go through, and Maureen, I thank you for your unique perspective, as well. This bizarre disease cuts so deeply into our lives and touches everything. The crap comes for our HEARTS, and there's just no way it can win, unless we let it. I want to take this opportunity to thank all of you for your invaluable input, and to thank you for your strength, your heart, your greatness of spirit, and for being the warriors that you truly are. I also want to encourage each of you, whether supporter or sufferer, episodic or chronic, to be strong, defiant, and to refuse to let this condition drive you down to the depths. Success or failure is not measured in whether you get knocked to the canvas or not. It's in the fact that you refuse to remain there. Get up, even when you don't feel like you can go one more round. You are stronger than you know. I wish you all great peace, great strength, great fortitude, and the boldness and good cheer of the warrior spirit. First rule of battle: Never give up. Never give up. Never, Never, but NEVER give up. My best to each of you, -Frank |
||||
|
Title: Re: The Mental/Emotional Aspect of CH Post by Magick on Jan 15th, 2005, 7:50pm One silly visual comparison I’ve used to remind them of the original Star Trek series. Every other episode there would be some “bad guy” who would either have some kind of weapon or mind powers that they would use against the poor enterprise. Always the same looking attack. You hear this very high pitch tone and everyone grabs their head and drops to their knee’s crying and screaming. I’ve watched tape of myself having a hit (a project I’m working on) and that’s what comes to mind. |
||||
|
Title: Re: The Mental/Emotional Aspect of CH Post by E-Double on Jan 15th, 2005, 8:30pm Truly special words and thoughts........ Like many I went years without treatment, misdiagnosis or undiagnosed. I was always able to conceal my agony for they always hit me in the middle of the night and I would just spring out of bed and do what I had to do. The only thing I knew was that 2x a yr I would not sleep for about a month and I'd have thoughts of death from this pain but they would pass because eventually the pain would disappear completely. Well in June of 2004 my fiance now wife found this place and I found help.....I could no longer conceal because they were no longer just at night they were during the day and night and were for hours of agony. I finally got diagnosed and finally found a home. This latest cycle, I have battled hard since May of '04 (the wife tells me that they started coming in April) I have been a guinea pig with meds and treatments but the biggest thing for me has been finally learning to cope...... Learning to LIVE!!!! I no longer question when it will end. For me I have decided that "IT IS WHAT IT IS" If it ends tomorrow super, If not I'm ok......It hurts like the dickens but I live!! The hardest thing with this "Disease" for me is not the agony that I feel from the CH but the agony I feel in my heart from watching my wife have to deal with me! That is the worst! She doesn't deserve that! These are the cards that we are dealt and they suck but we have all learned to deal with our lives and this disease to the best of our abilities. Love to all. Live! Eric |
||||
|
Title: Re: The Mental/Emotional Aspect of CH Post by CC2004 on Jan 15th, 2005, 9:14pm such a special thread - what amazing people we are - what a family [smiley=inlove.gif] CC |
||||
|
Title: Re: The Mental/Emotional Aspect of CH Post by Jeepgun on Jan 16th, 2005, 12:04pm [smiley=heart.gif] |
||||
|
Title: Re: The Mental/Emotional Aspect of CH Post by Redneck on Jan 16th, 2005, 6:57pm Jeep and all, Thanks for putting this into words much better than I have ever been able to. Most coping skills are learned, some are autonomic. CH goes outside the realm of "normal coping". Post traumatic stress could definitely be applied. After 22 years, 9 months of the beast I thought I had it down pat. WRONG. As I found some good meds and got a couple of long ch free breaks, it's harder to deal with now than when they were more common place. Am I out of practice dealing with it? Am I just older? Weaker? I don't know. Ending the pain permantely never entered my mind untill this cycle (no it's still not an option for me so don't freak). Add a few other things, the loss of my best friend, my mother slowly dying, the every day stress of modern living. I still live day to day, smile at the sun and clouds. Hug beautiful women ;;D Small things help the most! And every damn day look at the beautiful woman that I married and wonder how the fuck she put up with me and the beast all these years. Nuff said, this totals more words than all the posts I ever made. You are all wonderful, different, and needed. And it don't hurt to remember I have a brand new bottle of scotch in the cabinet, that one damn day I will be able to pull it out and drink that sucker! |
||||
|
Title: Re: The Mental/Emotional Aspect of CH Post by Jeepgun on Jan 17th, 2005, 11:23am Here's to the day when you will be able to pull that bottle of scotch out and take a long, fearless draught on that sucker!! [smiley=me&mb.gif] Be well, be pain-free, and most of all, keep your chin tucked, work the jab, and keep bangin' that beast in the ribs!! WHAM!!! WHAM!! WHAM!! |
||||
|
Title: Re: The Mental/Emotional Aspect of CH Post by cakelady on Jan 17th, 2005, 12:40pm It occurs to me how very close to the edge we all live. I know I do. :'( :'( |
||||
|
Title: Re: The Mental/Emotional Aspect of CH Post by guesst on Jan 17th, 2005, 2:36pm Just me shamelessly re-posting one of my ch-inspired works, but it seems to fit here. This is titeld "My Struggle" At night, it comes to me. Possessing me, consuming me, ripping away my sanity, and everything that is good in the world fades to black. I’m alone with my tormentor. There is no help. I must face it night after night………. Alone. No one understands the depths of my agony. As I pace the floor in my own personal hell, I would do anything to make it stop. I beg for mercy… but to no avail, it doesn’t listen. The pain is more than I can stand. It’s all that exists for me. My world is crumbling away from me, and I don’t even have the strength to hold the pieces together. I wonder what I’ve done to deserve this. No one should have to endure this torture. It’s just not fair. It rips away my very sense of self, and leaves me a withered, wasted husk of humanity. At times, I consider letting it win, giving up the fight, because I’ve lost the strength to carry on. When will this be over? And when it’s finally over, how will I ever be able to face it again? The fear of its imminent return leaves me grasping for sanity. Finally it’s over. I’m exhausted, worthless, and unable to even pick myself up off the floor. I rest and gather my strength for the coming day. As I feel the dawning sunlight on my face, and bask in it’s warmth, I think to myself “It was worth it”. When the girl at the store, where I buy my coffee, gives me a bright smile, I think, “It was worth it”. A hug from a loved one, a laugh with a co-worker, a joke shared with a friend, a distant relative’s voice on the phone, answering a young child’s question about life. All of these things make the battle worth fighting. You see it’s not the pain that is important. It’s the times when the pain it gone, that are important. That’s why I cherish every minute I have away from the beast, because it’s those times spent with friends and loved ones that give me the strength to continue my struggle. Thank you for my strength. |
||||
|
Title: Re: The Mental/Emotional Aspect of CH Post by Jeepgun on Jan 17th, 2005, 3:11pm *tears* Thomas, you nailed it in one. It IS worth it. Even when things are at their most bleak. This pain keeps right on driving us to the very edge, and then we get to pull ourselves back again... I'm reminded of a rubber band, how it's stretched to the breaking point, and then released, its diameter and elasticity increased. With each successive stretch to the very edge of breaking, it grows. Unfortunately, this nice analogy begins to fall apart when, after a time, the rubber band becomes weakened and then snaps. Perhaps a better analogy would be that of water, to describe the strength we need to survive: Water assumes the shape of whatever it is poured into. When subjected to heat, it escapes as vapor into the air, forms clouds, rains back to earth as water, and then continues winding its way to the sea, smoothing ancient stones, carving deep canyons, winding around and over every obstacle. Subjected to cold, it lies dormant as ice until it can be free again. Nothing ever contains, breaks, or destroys it. May each one of us remain unbroken, unbowed, and unhindered by the pain that we must endure. Pristine health, lionhearted strength, and pain-free days and nights to everyone. -Frank |
||||
|
Title: Re: The Mental/Emotional Aspect of CH Post by Margi on Jan 17th, 2005, 3:29pm Hey, Maureen - that was a great post. :) Here's another one from who I consider to be the Queen of Supporters - our very own Jackie. She really nails it on the number clusters does on a supporter. Just thought I'd dig it out of our archives because I've never seen it explained better than Jackie does with this one. " Another kind of pain.... « on: Sep 17th, 2003, 2:02pm » -------------------------------------------------------------------------------- I'd like to start by telling you all what this post IS NOT. This is not a post or story that is meant to be self-serving. It's not a post about who suffers more or who's pain is the more hurtful. It's not a "complain" post or a "whine" post. It's a post about what if feels like to be me.....the wife of a chronic clusterhead who I love with all my heart. It's a post about what it feels like to be me when I read so many of the sufferers posts because I have seen with my own eyes the pain they are talking about. Clusters hurt supporters hearts....... I've watched Blake reeling in pain for endless hours. I've heard him beg God to kill him. When God doesn't he's begged me. That's heart pain. I've seen Blake (some mornings) looking like he just walked out of a concentration camp.....eyes sunken in, no color, no facial expression. I ask him if he'd like a cup of coffee and say 'you better hurry up, honey, or you'll be late for work'. What I'm thinking is how can this man make it another day...how can he go to work. But...I know I have to make him try. I know I can't let him give up. That's heart pain. At different times I've asked the doctors to change Blake's drugs. I've done this more than once and it's usually when he's in "high cycle". My theory is we have to keep trying...we have to keep looking. One time when we changed drugs it made it much worse. Right in the middle of a Kip10 he's begging me to please never try another drug...please never ask him to do this again. That's heart pain. I've intentionally made Blake mad when I feel he's about to give up. I've pissed him off just to get his blood flowing and get the heart rate up. It works but it just about does me in when all I really want to do is hold him and cry. That's heart pain. Clusters hurt supporters egos...... I'm a bit of a contol freak. I like to take charge and fix things up. I like to make things better for friends, family and loved ones. But you know what.....there's not a damn thing I can do to stop the pain when the demon hits. I can't threaten him, scare him away, bust his balls or buy him off. I have to accept that I can't make it all OK for Blake until the demon lets me. I have to stand by in a helpless state. That's ego pain. There's one more pain and it's called guilt.......Blake and I are husband and wife. We are soul mates. We are best friends. We are supposed to share everything....the good things and the bad....the tears and the laughter....the pain and the "feel good" times. I have begged God to put the demon on me....to give Blake a break....to leave him alone for just one week. But.....it never happens. Blake has to endure all the hits and that's not right. That's guilt pain. Well.....that's about it I've run my mouth again as usual. Love to you all....suffers and supports alike Jackie LOL...one more thing. My theory is never let 'em see ya cry, never let 'em see ya sweat, never let them see any doubt on your face.....hang tough and they'll hang tough with ya......fight the demon with them and they won't give up......tell them that tomorrow will be better and they'll try it another day. " |
||||
|
Title: Re: The Mental/Emotional Aspect of CH Post by Jeepgun on Jan 17th, 2005, 3:57pm Thank you Margi, and thank you to Jackie, too. I got a few chances to be on the supporter side of things, at NashCon, and I didn't like it one bit. I decided that it was far preferable to be a sufferer. I don't think I'm strong enough to watch someone I love go through something like this... This is another reason why I have so much respect for supporters and all that they do, all that they endure, and the very real pain that they suffer, right along with us clusterheads. :'( Thanks again. -Frank |
||||
|
Title: Re: The Mental/Emotional Aspect of CH Post by cschick on Jan 17th, 2005, 5:13pm I have thought about this all day and finally came up with my emotions when in cycle. I can't relax - ever! It's like I become obsessive compulsive with cleaning - even my flush handle on the toilet gleams when I am in cycle. I don't sit - ever! I move constantly - Chris says I even flip and flop all night when I do get some sleep. I get VERY depressed and think about suicide and cry a lot. I'm a very content and happy person when I am not in cycle. I cry every day when in cycle. I think about how much better off this world would be without me in it. I want to make my child motherless. It sickens me. I know the thoughts I have are completely irrational but I can't stop it. I even went to a therapist last year when I was in cycle and it did NO GOOD! I still wanted to die, I still hated everything and I was barely functioning yet couldn't stay still. If that makes any sense. Then comes the paranoia - when is he coming, how long will he stay, when will he leave....I can't stop obsessing about it. Terrified to go to sleep. Guilt is a big one too. Guilt that I put my husband and child through this every year. Colin is just now getting to the age that he is starting to understand Mommy doesn't "feel good" - Mommy has a headache - shhhhhh. It's a horrible way for my child to have to grow up. Hate - I hate this stupid thing in my head. Finally, acceptance. Phew - that felt good! Great thread, Frank! Karen |
||||
|
Title: Re: The Mental/Emotional Aspect of CH Post by nani on Jan 17th, 2005, 5:21pm The most horrible part of this is how it effects our children! We must continue to be open with them while attempting to shelter them from the emotional pain it causes. Mooshie really processes a lot from drawing pictures of it. My other child just doesn't talk about it...at all. :( |
||||
|
Clusterheadaches.com Message Board » Powered by YaBB 1 Gold - SP 1.3.1! YaBB © 2000-2003. All Rights Reserved. |