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Topic: The Mental/Emotional Aspect of CH (Read 1052 times) |
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Jeepgun
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The Mental/Emotional Aspect of CH
« on: Jan 14th, 2005, 12:17pm » |
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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
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| « Last Edit: Jan 15th, 2005, 2:38pm by Jeepgun » |
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nani
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Re: The Mental/Emotional Aspect of CH
« Reply #1 on: Jan 14th, 2005, 12:29pm » |
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Quote:| a discussion of coping mechanisms |
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Chocolate Mousse cake. Works for me many times. 
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".
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Hirvimaki
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Re: The Mental/Emotional Aspect of CH
« Reply #2 on: Jan 14th, 2005, 12:34pm » |
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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
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kimh
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Re: The Mental/Emotional Aspect of CH
« Reply #3 on: Jan 14th, 2005, 12:54pm » |
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Yup, Frank. I've talked about the importance of acquiring those coping skills many times (althought perhaps not as eloquently as you  ). 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
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Langa
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Re: The Mental/Emotional Aspect of CH
« Reply #4 on: Jan 14th, 2005, 12:57pm » |
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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
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PrettyH8Machine
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Re: The Mental/Emotional Aspect of CH
« Reply #5 on: Jan 14th, 2005, 12:59pm » |
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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
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ccbiggsoo7
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Re: The Mental/Emotional Aspect of CH
« Reply #6 on: Jan 14th, 2005, 1:03pm » |
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Frank , very well put. Amen brother! Could you memorize that speech and come to my neuro w* ccbiggsoo7 HA!
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lionsound
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Re: The Mental/Emotional Aspect of CH
« Reply #7 on: Jan 14th, 2005, 1:20pm » |
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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.”
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| « Last Edit: Jan 14th, 2005, 1:20pm by lionsound » |
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Tara Ann
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Re: The Mental/Emotional Aspect of CH
« Reply #8 on: Jan 14th, 2005, 1:58pm » |
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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.
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| « Last Edit: Jan 14th, 2005, 1:59pm by Tara Ann » |
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Re: The Mental/Emotional Aspect of CH
« Reply #9 on: Jan 14th, 2005, 3:58pm » |
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bump
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Re: The Mental/Emotional Aspect of CH
« Reply #10 on: Jan 14th, 2005, 4:02pm » |
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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.
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Sean_C
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Re: The Mental/Emotional Aspect of CH
« Reply #11 on: Jan 14th, 2005, 4:17pm » |
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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............................
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Jeepgun
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Re: The Mental/Emotional Aspect of CH
« Reply #12 on: Jan 14th, 2005, 4:21pm » |
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Ditto, Sean. I'm sorry for the ones you've lost.
Can you explain more about "dictate to your mind," please?
Thank you.
-Frank
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BarbaraD
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Re: The Mental/Emotional Aspect of CH
« Reply #13 on: Jan 14th, 2005, 4:22pm » |
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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
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Jeepgun
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Re: The Mental/Emotional Aspect of CH
« Reply #14 on: Jan 14th, 2005, 4:31pm » |
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Thank you, Barbara. 
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Sean_C
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Re: The Mental/Emotional Aspect of CH
« Reply #15 on: Jan 14th, 2005, 5:02pm » |
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on Jan 14th, 2005, 4:21pm, Jeepgun wrote:Ditto, Sean. I'm sorry for the ones you've lost.
Can you explain more about "dictate to your mind," please?
Thank you.
-Frank |
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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............................
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Tiannia
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Re: The Mental/Emotional Aspect of CH
« Reply #16 on: Jan 14th, 2005, 5:20pm » |
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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.
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Jeepgun
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Re: The Mental/Emotional Aspect of CH
« Reply #17 on: Jan 14th, 2005, 5:25pm » |
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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
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Sean_C
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Re: The Mental/Emotional Aspect of CH
« Reply #18 on: Jan 14th, 2005, 5:37pm » |
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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
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 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
Call me if you get a chance, it'll be good to laugh
Sean..............
edit: (sp)
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| « Last Edit: Jan 14th, 2005, 6:47pm by Sean_C » |
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Renee
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Re: The Mental/Emotional Aspect of CH
« Reply #19 on: Jan 14th, 2005, 7:15pm » |
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Re: SUICIDES DUE TO CLUSTERS
« Reply #50 on: Jan 8th, 2005, 9:47pm
Quote:-Quote:We'll be here to kick that butt of yours any time you seem to need it too! You're right, sometimes that's exactly what we need.
Dead is forever - pain isn't! |
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Quote:| I keep telling this to myself. |
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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.
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Re: The Mental/Emotional Aspect of CH
« Reply #20 on: Jan 14th, 2005, 7:38pm » |
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on Jan 14th, 2005, 5:20pm, Tiannia wrote: 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.
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.
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 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. |
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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
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Re: The Mental/Emotional Aspect of CH
« Reply #21 on: Jan 14th, 2005, 8:22pm » |
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on Jan 14th, 2005, 5:02pm, Sean_C 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............................
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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!
 (hehehe!)
thanks again Frank and all of you - bless you all
CC 
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
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| « Last Edit: Jan 14th, 2005, 9:29pm by CC2004 » |
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thebbz
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Re: The Mental/Emotional Aspect of CH
« Reply #22 on: Jan 14th, 2005, 8:49pm » |
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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 
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.
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CC2004
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Re: The Mental/Emotional Aspect of CH
« Reply #23 on: Jan 14th, 2005, 9:19pm » |
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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"  or other nonsense like that
- there must be something succinct we can say in a meaningful (but hopefully nice !) way to let them know this is not a headache, not even a meegrain
any ideas???
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nani
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Re: The Mental/Emotional Aspect of CH
« Reply #24 on: Jan 14th, 2005, 9:22pm » |
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Collette...how 'bout..."Here let me stick a chef knife in your eye, it kinda feels like that, but worse.
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