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Title: Dealing with clusters Post by Jill on Apr 20th, 2003, 7:52am I started a new thread - which I hope is okay - on how to deal with this beast. I realize that this has been discussed numerous times and I could have mentioned it in my other thread "worse and worse" but I want new cluster sufferers to see this and I want to focus on this general idea. On the other thread, I mentioned that Dr. Kudrow - the last neurologist that I saw - told me that I had to learn how to deal with the pain. This has me perplexed in many ways on how I am supposed to do just that. Please, give me a chance to explain... First of all, I think that there are three ways to "deal" with it - mentally, physically and emotionally - connecting with each other. Please let me explain what I mean as it may be able to help others as well. Let me start with what I consider the mental part of dealing with these clusters. I know that each one of us, in order to live as normal a life as possible with this pain, must be able to accept it as a disease or ailment or however we choose to classify it. Am I right so far? It seems to me that so many of you can deal with this beast like you do because you have come to terms with it, you have come to accept that you have this disease and from that perspective, you try to live your life as normal as possible. Does that make sense? I have not yet, I dont think, come to accept it and I still feel like I am to blame for the pain that I feel, the fact that the meds dont work and that I never get a days break from this pain. I see everyone of you here as good people with great spirits but that are unfortunate to have a disease - but when I see me, I see something different. How do you come to accept these clusters so that dealing with them may become easier (for lack of a better word)? This leads me into the physical side of the clusterheadaches. What we have to accept is that we have a disease that we cannot, atleast not yet, cure but one in which we can atleast treat so that the pain is reduced and sometimes taken almost completely away. These clusters should be seen just as they are a disease or ailment that has to be treated with medications just as you treat a cold with antibiotics, though the pain is much much different. Do you know what I am trying to say though? But - I cant seem to see it this way at all. Instead of coping, dealing with or treating a disease, I am fighting a beast that I have given human qualities. How do you change that perspective and come to realize that just as a cold is a sickness, clusters are a syndrome that has to be treated and not a beast that has to be defeated? This, in turn, leads me to the emotional part of dealing with clusters. There is no doubt that clusters tear all of us and our loved ones - our supporters - up emotionally or have some point. Do these emotions of helplessness, hopelessness, etc. get a little less intense once you come to terms with it and realize that you do have a disease and are not fighting something with emotions within you? Does that even make sense? on 04/18/03 at 21:15:02, don wrote:
I am adding this to say that I am not going to the Emergency room looking for meds to help me 'deal with the pain' on an emotional or even mental level but I go to ease the pain physically. I go for meds that will abort the attack - it has nothing to do with drowning myself in pain medications as a way to deal with the pain as druggies or alcoholics may do. I am not sure why this deems so important for me to want you to understand, maybe because so many people want to make that accusation and it hurts because it couldnt be any further away from the truth. Man - I hope that that made sense. I have said all of this and it is alot but I do want to explain really quick why I am asking you this - I need advice from those that suffer because you are the ones that truely understand the pain. I dont see myself as having a disease - I guess that I havent mentally accepted it yet - I see myself as having this deamon within me. Everytime that I get hit, which is way too much, I see it as a punishment of some sort. I feel the need to continually apologize when I am hit, thinking that with each apology I am receiveing forgiveness for whatever I have done wrong. I continually strive to be better to avoid being struck by the beast and with each hit that follows, I feel more and more like a failure and so I try harder and harder, bringing myself down more and more each time. I know how bad this sounds and believe me, I dont want it to be like this but I am not sure how to change this perspective. I have come to you all because only you guys understand the physical pain that I feel - that is what we have in common and I am hoping - though I hate to see it true - that someone has been here before and can offer advice on how to change my thinking. To be honest, I am scared beyond all belief and I am hoping (please) that you wont recommend psychiatric help because I am seeing a psychologist and as nice as she is, she doesnt understand the pain which is the key to all of this. I am open to any advice that you can provide, please. I am hurting (emotionally) myself by this way of thinking - that I can see, have been told and understand - I just am not sure how to change... Jill |
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Title: Re: Dealing with clusters - help Post by Bob_Johnson on Apr 20th, 2003, 8:03am Sending a long message to you at your e-mail address. It deals with the emotional aspects of coping with CH but it's too long to be posted here. |
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Title: Re: Dealing with clusters - help Post by don on Apr 20th, 2003, 8:08am Thats not an accusation it is a fact. Pain meds are generally useless for CH and can complicate an already complicated situation |
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Title: Re: Dealing with clusters - help Post by Jill on Apr 20th, 2003, 8:46am Don, on 04/20/03 at 08:08:55, don wrote:
Are you you saying that you are not accusing me of 'drowning' myself in pain meds as a away of dealing with the pain but that you are stating a fact that I am? I hoping very much that I have just misinterpreted that and I am pretty sure that I have - if so, than I am truely, truely sorry. on 04/20/03 at 08:08:55, don wrote:
For me and for right now, pain meds are all that I have to turn too and if that means continual trips to the emergency room for relief, than that is what I have to do. I fight as hard as I can but there are some that are too intense and for too long, I need help fighting those ones. The problem is that they come so frequently right now hence all the visits to the ER. on 04/18/03 at 21:15:02, don wrote:
I have tried everything what you have mentioned in this post. The list of preventatives that I have tried is extremely long and that does not include the combination of medications tried. The prednisone burst has been tried twice, neither time even touching the clusters. Neurologist after neurologist have 'given up' on me and even Dr. Kudrow told me that if the MR Angiogram that he ordered proved to be negative than there was nothing else that he or any other neurologist would be able to do - leaving me to find a pain specialist who can help me with finding pain medications that will enable me to get on with my life - it is on a standstill right now. Believe me, if there was another way for me to control my pain without needing such heavy meds than I would take it. But right now, I am at a fork in the road - the one path will lead me to deal with the pain with no meds and the other path will allow me to be in less pain with the aid of pain medications. The choice is simple to me but to be sure, I needed to ask myself a question: Can I continue to live like I am now with the pain that I am and still be happy. The answer to that question determines what path I am to take - the answer is no for me, so I have to choose the path that will allow me to take medications to help contol the pain some. I am prepared - as much as I can be - for the results of taking this route but I also realize that this pain is too much for me. I hope that this clears it up a bit more and if I have said something wrong than I am sorry. Jill |
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Title: Re: Dealing with clusters - help Post by don on Apr 20th, 2003, 8:48am [quote][How do you change that perspective and come to realize that just as a cold is a sickness, clusters are a syndrome that has to be treated and not a beast that has to be defeated? /quote] It can be difficult. Here is a suggestion, a little drastic maybe, but it might work. Visit your local VA hospital and greet the vets who will be confined there for the rest of their lives. Visit the kids at your local "Shriners Burn Center" It will change your life and the perspective you have of your own afflictions. When you go, bring gifts. When you leave , go to the most peaceful place you know. You will be feeling senses of guilt, gratitude and compassion so intense it will overwhelm you. |
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Title: Re: Dealing with clusters - help Post by kissmyglass on Apr 20th, 2003, 8:49am Jill keep reading Dons post above until it sinks in... Also go read Fubars post in the "Why Me" thread Then reread it.... Good Luck & Hope you get pain free soon, Kev |
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Title: Re: Dealing with clusters - help Post by Jill on Apr 20th, 2003, 10:42am Okay, somehow I think that the point of this thread and the question that I am asking has been misinterpreted and lost. I am sorry for that. In no way, shape or form was I trying to compare my pain or that of clusters to any other disease. I was not trying to imply that notion that 'my pain is worse than your pain' and so on. To me, there is no way to compare one disease to another - they are just too different and it would be similar to comparing apples to oranges and so forth. Before I begin to carify what I meant, I want you to realize I am putting alot on the line right now and I am not sure how you all are going to react to it or if this is an area that I should even mention. But the reason that I am taking this risk - be it one or not - is because you all understand this pain than any other person - you suffer from it too. This was the main point in my first post (sorry it took so many words to say it though): on 04/20/03 at 07:52:15, Jill wrote:
I know that each person battles with the beast in there own manner - none of us are the same. The pain, to each of us, is different and what may be a Kip 10 to someone else, may be a 7 to me. I am now comming to learn that it has nothing to do with how strong we are, it just has to do with the level at which we battle the beast. It seems that just about everyone or the majority of those on this site have the ability to see clusters as a disease - that simple. And it seems that these same people have come to accept this as part of hand that life has dealt them. To all of you who feel or see it this way - I truely admire you. I am curious though is on how you all "view" the clusterheadaches and when you are hit by one - are you just fighting just the pain or is there more, something deeper? If it is just the pain, then how do you do that? How do you just say to yourself that 'this is a disease that is causing me pain and I need to stop it?" You see, the pain that I am feeling is not the majority of what I fight - I, actually, fight a beast that is inflicting the pain. To me, it is not a battle to just get rid of the pain - it is an all out war to beat this brute that for some reason I feel is causing the pain. This is a struggle for my life. Doesnt make any sense to you, does it? But to me, it does. I have this feeling that these clusters are a form of punishment that is being inflicted onto me for some undeterminable reason. Everytime that I feel that twinge come on, that initial clue that one is about to begin, I shudder and wonder 'what did I do wrong now that I am going to have to go through this again?' Even though I thrash, cry and scream because the pain is so bad - I still apologize to this 'beast' and beg him to just leave me alone, to get out of my head and so on. There are times when I feel like the more I fight, the madder 'he' gets and the worse the pain gets. Now logically, it is just the cluster reaching its peak but it never seems to feel that way. Then when the time is up, when the attack is over - I never consider myself beating 'him.' I am not sure how I feel then except for that sense of relief that it is over but still fear for when the next one comes. Does this make sense? This is why I mentioned in the first post about the three ways of dealing with the clusters - mentally, physically and emotionally. They all coincide with each other and when one is off then so are the rest. Am I right here - atleast some? I am aware that this is not the best way to view this or a good way at all - that is why I am posting and telling you this. |
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Title: Re: Dealing with clusters - help Post by jonny on Apr 20th, 2003, 11:04am on 04/20/03 at 10:42:53, Jill wrote:
And not all of us whine....WAH!!!! ;D ..........................jonny |
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Title: Re: Dealing with clusters - help Post by Roxy on Apr 20th, 2003, 11:28am on 04/20/03 at 08:49:43, kissmyglass wrote:
I reiterate. Hope it gets better, T |
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Title: Re: Dealing with clusters - help Post by Jarvis on Apr 20th, 2003, 11:35am CH is not a disease that will kill us but an affliction or handicap. Its not something we catch from the neighbors. .. Don is so right. .... Sometimes we battle our own selves harder than we battle the pain. ... Sometimes no meds work... Sometimes we must accept what modern science cannot cure. When acceptance comes new doors will open and the real battles begin. ...... |
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Title: Re: Dealing with clusters - help Post by kjaycox on Apr 20th, 2003, 12:03pm I am new to the board but have been battling for 16 years now. Only in the last year have I tried searching for answers medically. I have had some successes but have come to terms with it that there will be times when I can't abort or prevent these things. There is a much higher prevalence of migraines in people, I just look at in that we are not unlike those folks, it just manifests itself a bit differently and hurts a lot worse. You just have to tell yourself that it will end eventually and remember the times when you do feel good and that there will be more good times to come. Keep fighting and you will find that either medically or other means will make what would have been a horrible bout into a manageable pain level. This is not always the case though. I find that when I feel an attack coming on, it is the small things that matter most. For me it's a lot of coffee quickly, pressure on my carotid with my fingers on the affected side, cigarettes, and my drugs - prednisone and indomethacin. I found that depakote was actually making my headaches worse. I found that out by accident by actually falling ASLEEP and not taking it one night. Just realize that you are not alone and keep fighting. |
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Title: Re: Dealing with clusters - help Post by catlind on Apr 20th, 2003, 12:23pm Have you tried the DHE-45 IV drip yet? (I don't remember if you have said you have) Cat |
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Title: Re: Dealing with clusters - help Post by Lenny on Apr 20th, 2003, 2:07pm Dear Jill, First of all i want to tell you that i am so-very sorry of how you are doing. From what i understand,you have seen Dr. Kudrow 1 time? Correct me if i am wrong.You have also stated that all of your previous Doc's have given up on you ( including Kudrow ) now i dont know any of your other docs but do know Kudrow and i find that VERY HARD TO BELEIVE ( that he would tell you on the very first visit,that he cant help you ).I will give you exp.of the first time meeting him ( i will make it very short ). Prior to seeing him, i was more or less a guinea pig with 2 diff. hospitals in the L.A. area ( U.C.L.A. and Cedar-Sinai ) no help whatsoever as for myself goes. I even had surgery( sinuatis )even thou the doc's at U.C.L.A. told me it would not help the clusters ( i figured what the fuck do they know,they cant help me with this and they are going to tell me that the surgery wont help ). I was very desperate and was willing to try anything ( and if someone would of told me by walking the neighborhood and sniffing fresh dog shit would help me,i would of done it ;D ;D ;D ;D). To say the least surgery did not help ( if anything they got worst ). At this point i gave up hope ( as far as docs go ),i finally made an appointment to go see dr. k. and i had my mind set that there was nothing that he or anyone else can do to help me ( i was desperate ),and yes i did tell him this ( he looked me straight in the eyes and told me that he can and will help me ) on my first visit,he spent 3-4 hours with me. I had a very long list of all meds. that i have taken,on my very first visit this man tried to get me to take the only combo. that has ever worked for me ( lithium and verapamil ) my answer to that was no,b/c i have taken them before with no help whatsoever ( my mind was so screwed up from the beast,meds.,etc. ). Appr.6-months later my mind starts to wake up :D :D and i called one of my old docs to ask him of what meds.( combo.-wise ) that i have taken,of course this took a couple of days for him to get back to me. After talking with him,i discovered that i did take the lithium ( by itself )and the verapamil ( by itself ) but never together. This combo. works magic for me,nothing else seems to do anything. I have been where you are ( mine hit me day and nite,and NEVER at a specific time). I am currently med free ( bad blood work) and was doing good up untill a couple of weeks ago. BTW i am chronic aswell. From what i understand,you have had these for about a year and a half. Are you sure that you have tried every med. and combo. out there for our disorder ? The thing that gets me thru this,i keep reminding myself that it will soon be over ( the attack ). What use to fuck me up was sitting there and waiting for the next one. I dont do that anymore,i take one attack at a time and ENJOY the pain free in between. I also stopped the why me bullshit and remind myself that, i have all my limbs,i have both eye's, i am not parolized ( excuse my spelling ) an damm i am good looking ;D ;D ;D ;D ;D. In march of 02,i had to come off of lithium ( bad blood )we were trying everything out there with no help whatsoever ( then he told me that that there was nothing out there to try - prev.wise ) but he never told me that he cant and wont help me. In the middle of this past Oct.he put me back on the lithium ( life is good again )now i am off it again ( bad blood ). Perhaps he told you that you have to live with it ( learn to accept this disorder ) and not, "that there is nothing that i could do for you". I am sorry,my exp. with him is 100 % diff. than what you have stated yours to be ( esp. on the first visit with him ). Don't get me wrong,i am not saying that he did not say that to you, i am just shocked that he would. I know its hard,you just have to remind yourself that it could be worse, MUCH WORSE. It will get better. |
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Title: Re: Dealing with clusters - help Post by Wendy the Brit on Apr 20th, 2003, 2:32pm Sorry Jill but a lot of your thinking seems very confused. I am going to have to say it as I see it and can only hope it does not upset you further. You have said that your feelings are a problem e.g. that you somehow deserve it, that it is a beast inside you you have to fight/accept. You then say that we should not suggest you have psychological help because she does not understand that the pain is the key. Sorry Jill but almost every word of every post I have seen about your hell reads as someone DESPERATELY in need of help with how they see themselves. You seem to feel so bad about yourself and that in itself is a terrible way to feel and live your life every day. If you feel like this, it seems no surprise to me that you are unable to accept CH as a condition rather than a punishment. In turn, this will make it impossible for a physical doctor to help you fully and may explain their reluctance to continue prescribing as the root problem will remain. I can only say as it seems on here, and this cannot be the whole story, but it looks to me like you should consider changing your pschotherapist to one who you feel more in tune with, and who may be able to help with these feeling of poor self worth. I hope you can get to a point where you can accept yourself as a fine human being, who has just been unlucky enough to get a bloody awful condition which CAN be managed, does have an end to the pain, even if only sometimes and will not kill you. It seesm very apparent that you cannot do this alone. I hope this does not upset you further, but I hear real trouble for you if you don't get some meaningful help soon. W the B |
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Title: Re: Dealing with clusters - help Post by jonny on Apr 20th, 2003, 3:51pm Me thinks what Wendy is saying is "Suck it up" You have CH....fucking deal with it!!!!! From 14 to 27 I had no one and no diagnosis, all the while chronic. I sucked it up.....I dont whine EVER!! When you realise that you are going to deal with this for most of your life you will deal with it like it or not. |
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Title: Re: Dealing with clusters - help Post by Wendy the Brit on Apr 20th, 2003, 4:02pm Close Jonny! Jill What I actually mean in more direct words is: You seem to ask for help and heed none of it, rather you argue with it or reject it. You seem to have a very unhealthy mental attitude to your illness. The pain is bad, but I think your doctors are very clearly saying that your psychological state worries them more. It certainly does me. In my humble opinion and experience, you are being denied drugs because the doctors have identified that you do not wish to help yourself with the true problem. Until you do, people will become more and more angry and frustrated with you and you will feel more and more rejected and let down by all these people (parents, friends, doctors, CH.com family) Sorry if this is too candid. As I have said, I say it as I see. If I could help you, I would, but I believe you need someone qualified and experienced in mental health matters. Please take the help from these professionals and actually listen to them rather than arguing and rejecting. If you do not do this,I'm afraid my view would be that subconsciously you do not want to improve, because this means the attention will lessen and stop. I probably have said too much. Please Jill, your help does not lie in posting long streams of consciuosness on this board Wendy |
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Title: Re: Dealing with clusters - help Post by Jill on Apr 20th, 2003, 5:34pm Okay - This thread was not supposed to start any kind of fight to begin on this board. First of all, I dont believe in fighting like this - it should be done privatly and secondly, I have no clue as to why it has happened. I can hazard a guess but I want to try and avoid that if possible. I created this post out of pure curiosity about other suffers - I learn from those that have been there before. All I wanted to basically learn how each of us view clusterheadaches and how this viewpoint affects those around them. We are all different; carrying our own opinions, making our own decisions and thnking our own individual thoughts - it is what make we cope or deal with our problems in our own ways - making us all unique. I am not going to repeat what I have already said and I believe that my statements about how we deal with clusters on emotional, mental and physical levels are justified. And, as for the reason that I am curious is just because I find it interesting and thought that maybe some of those that are new to dealing with clusters can learn from our experiences such as with treatments, mentality and dealing with loved ones. Wendy - I am not sure how long you have been around and I am not going to doubt that you are a good supporter too many but seeing as how you have never offered to help me, you have no right to say that I dont accept it. This board has been my life-savior and I am forever grateful to them - I am sure that they know it too. And Jonny - I do believe that I have been down this road before with you. I am not sure if you are trying to prove that you are tough for having them so long or trying to make me feel bad for 'whining' about them after fourteen months. This is not a game, this is serious and I dont believe it matters how long you get hit or how often during the day because we are all trying to overcome the same pain. I apologize to everyone else for how this thread turned out - it was not mu intentions and I was trying to be so careful in what I had said. I am trying to learn as much as I can right now as all of the doctors seem to be at a standstill - not denying meds but simply running out of options - I have tried so many. Cat - I was in the hospital for a week for the DHE treatment. The docs and nurses at Walter Reed said that it had to be continuous but since it wasnt, I didnt think that it could have worked. Come to find out this week that that was not the case, it was just that it didnt work - may have to try it again though... As for right now, I am looking to gain that acceptance and everyday, everytime I get through another hit - I become that much closer. Kind of like the train who could - or something of that nature. I hope that this was a bit more clear but I am still wondering what your view points or ideas are on clusterheadaches - thinking about adding them to the book if we have some. Any ideas? Jill |
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Title: Re: Dealing with clusters Post by cathy on Apr 20th, 2003, 5:55pm Jill, I honestly do not think that anybody here has tried or indeed has turned this thread into a fight, maybe that is just how you percieve it, the only thing I can see in this thread is offers of help, good advice even if worded quite strongly and love to you, yet still you are not really taking any notice of what is being said to you, go back and really read what you have written, maybe then you will begin to make sense of the replies. I really hope that you find some peace in your life and Im sure everyone else here does too. Im glad to read that with each day you are becoming closer to accepting this, however your posts do not shout this out. Wendy is not only a good supporter she is also a sufferer and knowing wendy personally Im sure she meant you no malice, I think she just believes in telling it as it is and I hope you will take in some of what she has said. I hope there is an end to your pain soon. Cathy |
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Title: Re: Dealing with clusters - help Post by jonny on Apr 20th, 2003, 5:56pm on 04/20/03 at 17:34:39, Jill wrote:
When you have been down the road i have been then you can speak your mind. "Revised" ........................jonny |
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Title: Re: Dealing with clusters Post by Opus on Apr 20th, 2003, 6:01pm Jill, Sorry I couldn't post to your last thread. Your words could not be added to. To answer your question about living with your pain, I have managed to be able to control my involuntary movements during a 7 and manage to keep still. This does seem to help the pain diminish. At a 8 to 10 no control is possible. I have never been able to use Charley's method because every part of me is so hot that there is no way to move the blood to make something warmer. I have made it through a 3 hour 10 before someone came to help. I did manage to stay in one place. I was given codeine and my 10 went almost to the pass out stage. That is why a lot of us say to stay away from narcotics. I have found relief with strong NSAIDS but the beast becomes resistant in a few weeks. I believe that any narcotic can make the pain worse and make it longer. I also found that my unmedicated CH's ( except for Imitrex ) were shorter than with the meds. They did go higher in pain but didn't last near as long. I hope this helps and a new pain DR will know what to do. Opus :P |
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Title: Re: Dealing with clusters Post by Frank on Apr 20th, 2003, 6:04pm Quote:
WTF? ??? ??? ??? ??? |
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Title: Re: Dealing with clusters Post by Jarvis on Apr 20th, 2003, 6:15pm Jill keep on chugging. :) As far as view points on clusters are concerned I think this thread shows the one overwhelming view point that the majority of CH sufferers share. Its an attitude we take every day some have found help some have not. But your looking at over a hundred years of experience on this thread alone. The attitude or mindset is what wins our battles every day. I see no fighting (well maybe jonny) this is how we deal and this is how we beat the s.o.b. |
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Title: Re: Dealing with clusters Post by jonny on Apr 20th, 2003, 6:32pm Nice jarvis....lets hook a 20 yr old chick on pain meds....What the hell you dont have to watch the out come do you ass-hole?? Nice...very nice What say you Marty...your a cop |
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Title: Re: Dealing with clusters - help Post by eyes_afire on Apr 20th, 2003, 6:34pm Hi Jill, I'm sorry you're having a terrible time. I think I understand a little of what you're talking about. Sometimes I have a hard time seeing this as a disorder to be treated, and I personalize my situation, and then become obsessed with destroying the 'Beast', etc. Sometimes I don't deal so well... I can do better. It is very hard for me to accept the reality that I have a disorder... CH. BTW, I have gone to a shrink, and I still do on occasion. I'm not religious. I can't prove whether god exists or not. When I was very young, I was 'religious'. I was an 8-year old boy who was keenly aware of the possibility that god may strike me down if I made a wrong move. That's not a very secure way to grow up. I believe that had an influence in shaping my bleak and macabre artistic sensibilities. As I grew older I started to realize that my head was full of shit. It wasn't until I was able to transform my values, that I diminished my guilt burden. It is not easy. Sometimes I still experience the 'horrified look around'. Now to the real point... DO NOT think that god is punishing you. If god exists, he does not operate that way. Sinners and saints alike will have disease, sadness, and hunger. Does one's level of suffering indicate how 'bad' a person is?.... NO. Any god that operates that way would be a very inefficient god. It makes no sense for god to cause suffering in an attempt to force 'forgiveness' when the creation does not know why it is punished. Many 'evil' people have gone thru life without so much misery, so if god uses disease to punish, then he/she is sending the wrong message (or at least a very inconsistent one). By the same token, I don't believe that god uses this disease (or any other disease) as 'part of his/her plan for the greater good'. There is NOTHING good about CH. CH sucks. I think that it is a bit easier to deal with CH when viewing it as a biological disorder. Don't beat yourself up over it. I believe you need to confront your feelings of guilt and punishment. I think confronting these feelings will make things easier for you. I think one good way to do this is to gain perspective on the world. Read books about philosophy. I know that sounds trite, but I sense that you are experiencing 'cognitive dissonance' and sometimes it helps to hear what other thinkers have thought. I'm not here to tell you it's easy, and I'm certainly not the sun-shiniest person. I have my falls into depression, and it's ugly. I release my hatred and guilt thru art, and it's ugly, but it feels better. The rain falls on both the unjust and the just. You are not alone. --- Steve, one of many... |
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Title: Re: Dealing with clusters Post by Jarvis on Apr 20th, 2003, 6:48pm To those who read this prior to editing my jonny response I apologize. Jonny reread my post perhaps you misread something. |
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Title: Re: Dealing with clusters Post by Frank on Apr 20th, 2003, 6:54pm on 04/20/03 at 18:32:55, jonny wrote:
Geez! How about another drink? ??? |
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Title: Re: Dealing with clusters - help Post by Roxy on Apr 20th, 2003, 7:43pm on 04/20/03 at 17:34:39, Jill wrote:
I’ve tried to narrow down what you are actually asking in this thread. Since you stated this, I’m hoping this is what you are interested in. on 04/20/03 at 07:52:15, Jill wrote:
This was stated in your first post. It seems to me that you have answered your own question. This is a disease/condition/ailment that, unfortunately the sufferer has to be proactive in dealing with. WE are the ones who take info to the doctors, WE are the ones who come up with different methods of aborting, WE are the ones who determine our own care. We deal with it. on 04/20/03 at 16:02:42, Wendy the Brit wrote:
Wendy was certainly not trying to start a fight here. All I can see is genuine concern about your mental health. If you can't deal with this condition, and become proactive in your own defense, then you need some professional help to be able to cope. IMHO Tracey |
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Title: Re: Dealing with clusters - help Post by don on Apr 20th, 2003, 7:45pm Quote:
It seems to me that the train is on the right track. Stop arguing with yourself , stop making this more complex than it needs to be. It's all about acceptance. Surreneder to the fact that you have this CH thing and get on with treating them. Bottom line here is we get bad headaches. Quote:
Sometimes the harder you try, the harder it is. Sometimes you just have to wait and let it happen Quote:
Just fighting the pain Jill. Thats all, nothing more. |
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Title: Re: Dealing with clusters - help Post by Ted on Apr 20th, 2003, 8:17pm on 04/20/03 at 19:45:42, don wrote:
Exactly. To everything Don said here. Right on Don. Man, she was just asking for advice and letting us know she's in pain, so looking for a little support too. Not some of the shit posted here in response. I don't think she's the first one who's come here and said they're having a hard time facing clusters. Jill, stay strong. There will come a time where you will surrender to it and once you do you'll be able to accept it all better. Surrendering doesn't mean defeat. It doesn't mean giving up hope. It means taking it into your very being that you have it and can't change it at this time. As far as doing something wrong? TerryS has chronic clusters. I have chronic clusters. Most people here have clusters, chronic or episodic. Bin Laden doesn't have clusters. Hitler doesn't have clusters. It's not a punishment thing. |
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Title: Re: Dealing with clusters - help Post by don on Apr 20th, 2003, 8:29pm Surrendering in this case Jill will mean victory. |
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Title: Re: Dealing with clusters Post by Wendy the Brit on Apr 20th, 2003, 8:41pm Jill I'm truly sorry. I posted to you because I DO care. I get CH and know some of what it does to you. I am also certain that it is not your CH pain that worries me the most. I will send you my apology personally for what it is worth and will understand if you do not hear me. I just hope you feel able to listen. W the B |
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Title: Re: Dealing with clusters - help Post by don on Apr 20th, 2003, 8:54pm IMHO Wendy, I see no reason for apologies |
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Title: Re: Dealing with clusters Post by Mastifflvr28 on Apr 20th, 2003, 9:41pm Wendy, why apologize? You are free to speak your opinion on this board...obviously... You are trying to HELP someone and your HELP just might be the HELP this person needs!! Mast |
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Title: Re: Dealing with clusters Post by CathiP on Apr 20th, 2003, 11:09pm Jill, darlin'- most of the posts here are words you and I have used together when discussing all you have been through. Remember.....waaaaay back, when I told you about my conversation with Slammy.....HE was the one who mentioned that you would need to understand that this is an AFFLICTION.....Not a punishment, nor a malicious persona that has taken up residence in your head to "get even" with you. Painful......OH YEAH!!! Persistent....I know, I know.....remember when I told you about a friend of mine, who, when the clusters get REALLY bad, he has one choice-and that's to dig deeper. Jill, strength is part of this affliction.....along with pain management, and strong mental health- you must be at the TOP of your game in order to get by. It is a fact, if you consider the beast as your burden, you will lose. As for the meds.....I've got the list, I know how many you've tried......I must ask if every one was tried for LONG enough to give it a chance, were the dosages monitored, and adjusted accordingly? I know it's been a long road, and it's gonna get longer. I also know there are a TON of people here who have managed to learn how to cope-YOU WILL, TOO, Jill. Mind, body, spirit......all need to be strong- and you have that strength, Jill. Please don't turn away from this thread......take everything that these caring people have said and consider every word before you move on. Again, there are very few things said here that are different from what we have discussed between the 2 of us. Don't give up.....these people will NOT be giving up on you- really. Love, Cathi |
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Title: Re: Dealing with clusters Post by cluster0557 on Apr 21st, 2003, 12:17am Jill, Right now the beast is probably not your worst enemy or issue. It is how you are accepting or not accepting that you have the disease and the associated beast that goes with the damn thing. Fight the beast yes. Don't fight yourself in the pity of having the beast. I see some big self pity wrapped in a lot of your statements. One that got me was that your Neuro's have given up. I just can't or won't accept that. If they have given up fire their sorry asses because they are there to give you help and relief. #2 don't use pain killers as they solution because they are part of the problem. I have not watched your case nor am I a doc who is remotely qualified to. I just know from my own experience that their is relief with out total dependencies on pain killers. The first order of business is getting to point of accepting you got a disease like the rest of us. Second order of business if your Neuro in fact have given up is find another and another as needed. Fire as many as you need to util you truly feel you have one that is a part of the solution. Can you tell me what Nardil is? Can you tell me the affect of eating Pizza with it? My point is that there are courses of treatment that I would bet have not been attempted. You are the number one provider of a positive result in your treatment. Accept what you got and push thru the beast and find the right help. Don't accept Bullshit answers from Docs. Challenge what they are prescribing. Get involved and understand your treatment. |
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Title: Re: Dealing with clusters Post by Sean_C on Apr 21st, 2003, 6:33am Jill, How do we deal with clusters?........hmmmmmmm Nobody here will say its easy, thats foresure, hang in there and it will pass, as they usually do. You can do it, believe me, and if you need support mentally, physically, and emotionally, you've come to the right place, we all feel your pain, and someone is probably up at some point in the night to say the beast got me too:)) Hang in there, hopefully they'll mello out soon:)) Sean |
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Title: Re: Dealing with clusters Post by fubar on Apr 21st, 2003, 7:25am Jill, How do I deal with clusters? I accept the facts and move on to trying to change things that CAN be changed. Things I know now: 1) The pain, while more intense than can be described, cannot kill me. My brain isn't going to catch fire. My head is not going to explode. Holding on to that one thought (It can't kill me") has saved my ass many times. 2) Addiction is more evil than clusters. I have had up-close-and-personal experience with addiction (my soon-to-be ex-wife has been an addict to one thing or another for 15 years.) 3) We are not 'entitled' to a pain free life. Ya, it sucks. Some of us are going to have a lot of pain. Trying every thing possible to kill that pain usually increases the pain the next go around. I know this from experience. You might want to approach this from a different angle. It may produce different results. What I see now is a desperate girl trying to achieve the impossible, and getting nowhere fast doing it. I wish it was possible to send you a package of 'knowledge' so you can skip the learning phase. You really need to learn to accept the clusters as part of your unique life. Stop thinking there is a cure or some magic bullet to stop the pain. You'll be AMAZED the day you do that, because things WILL change. Believe it or not, you can stop the worst pain all by your self. Sadly, until the pain stops being fed by you, it will seem worse and worse. Stop feeding it. -Fu |
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Title: Re: Dealing with clusters Post by marty on Apr 21st, 2003, 7:48am on 04/20/03 at 18:32:55, jonny wrote:
I am staying way clear of this thread.. But I must say that Jill is "standing her ground" pretty good. :D 8) Marty |
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Title: Re: Dealing with clusters Post by kjaycox on Apr 21st, 2003, 8:07am FUBAR, That's good information in your last post. I need to realize this.. I am in a situation in this bout where I need to get off all the pain killers, prednisone, etc. and start focusing on water, less coffee, and get my mindset off being afraid of the next one... Your post is motivating for me.. thx |
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Title: Re: Dealing with clusters - help Post by Peppermint on Apr 21st, 2003, 8:33am on 04/20/03 at 16:02:42, Wendy the Brit wrote:
Not just regarding the immediately above, IMHO, it looks as if everyone is trying to help in their own way - but it all boils down to the same thing. Jill, you've been offered/given a lot of moral support and "med" support, from many, many people on this board...before Marty took you in/under his wing, before your parents came around, before the pain clinics, before Dr. Kudrow. WE have discussed the thing about seeing a mental health professional, and the psychotherapist that you don't like, or trust or whatever it is. Months ago. More than once. Take matters into your own hands, GET THE HELP YOU NEED in this respect. No one is wasting their breath here, you need to take action on your part. You've admitted that it was something difficult for you to do, but now it doesn't seem like there's much more of a cushion of "waiting" left. on 04/20/03 at 10:42:53, Jill wrote:
Yet you balked or in your words, felt "stabbed in the back" when one of the ER docs mentioned the word psych. on 04/19/03 at 00:51:25, Jill wrote:
The physical may stay the same or has gotten worse; now Marty is there for you, your parents have come around, and you have all the support of the clusterheads here and then some, whether you see it that way or not, AND you have seen or are seeing some of the BEST doctors. Unless there's something you're not saying, the big picture is pretty sharp. The last factor remains. Its really up to you Jill. PFDAN, Patty |
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Title: Re: Dealing with clusters Post by suzy617 on Apr 21st, 2003, 10:03am Well said Peppy girl. ;) suzy |
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Title: Re: Dealing with clusters Post by brain_cramps on Apr 21st, 2003, 10:12am Excellent post, fubar! Over the years, there have been countless times that knowing "it won't kill me" has got me through the night. For me, this attitude has become more important over the last 5+ yrs, being med-free. Yeah, yeah... I know I'm not chronic, but my point is... the attitude you take in dealing with this is about as IMPORTANT AS IT GETS. It would be easy for me to go get myself meds, but because of how much shorter and less intense my cycles have gotten without meds, I don't want to. In my case, the meds SEEM to stretch out the cycle. (Also in my case, I KNOW that a big part of the problem for me years ago was the narcotics. I WILL NOT GO DOWN THAT ROAD AGAIN!!!!!!!!!!!) Having to deal without meds has given me a different outlook on the whole ordeal. (Don't get me wrong. I'm not saying you should go med-free, just take a close look at your attitude and how you feel about 'the next one'.) You HAVE been through the worst of it. You KNOW how bad the pain can be. By now, you should also know that it WON'T kill you. I know you hate these words, but here goes again: Hang in there - it WILL improve. grant 8) |
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Title: Re: Dealing with clusters - help Post by Jill on Apr 21st, 2003, 8:00pm I have been sitting here at the computer wondering if I should post, what I should I post and if by posting, I can clarify what I was asking. But I am here - I need to try and "fix" what I have done... I would first like to thank each and everyone of you for everything that you have done for me and, if I dont demonstrate it to you or show you how much it means to me, than I am so so sorry - that is bad on my part. Wendy.. sorry.. Also, many have mentioned my mental state of mind and that it is not the best - in no way do I disagree with that. And I do want you to know that I have seen two psychiatrists who have both dismissed me and am currently seeing a psychologist. I guess that the one question that I was trying to ask -though it may not have seemed that way - was on how you came to accept the clusterheadaches as a disease and not as a punishment? Now, I am be going somewhere that I should not be going, but I cant help it. Maybe it is because I am not feeling the best or just that I need to get my frustration out and what I read kind of pushed some buttons..... on 04/20/03 at 17:56:13, jonny wrote:
Jonny, I may not have been down the same road as you and I am glad that I did not have to. I know that you have had many trials and hurtful moments throughout your life. I can not compare my pain to yours but the pain that I am feeling is my pain, different from yours, but maybe just as painful. I think that we all have to deal with the pain in our own way and I am having a hard time now, that's all. I am sorry if you took it as whining, it was not my intention. I merely was attempting to find some answers, answers that would help me find a way to deal with and accept this as a physical ailment instead of (what I understand to be wrong) putting a physical "being" as an adversary. But Jonny.. I may be 5'2" and weigh 115 lbs.. I'll kick your butt ;D Jill |
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Title: Re: Dealing with clusters - help Post by don on Apr 21st, 2003, 8:07pm I have one question for you Jill? Not one you need or should answer here. A question you need to answer for yourself Punishment for what? |
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Title: Re: Dealing with clusters - help Post by jonny on Apr 22nd, 2003, 5:22am on 04/21/03 at 20:00:46, Jill wrote:
;D ;D ;D ;D |
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Title: Re: Dealing with clusters Post by catlind on Apr 22nd, 2003, 7:29am Jill, I don't know what the shrinks are like in CA, but I'll tell you what I've experienced with the psych industry. Psychiatrists prescribe meds. Overall they are useless for therapy. Pyschologists deal in therapy. They talk. Find a therapist, counsellor or ologist that does not work from a text book. In my experience, if they spout text book info, they are not tuning in to what you need. There is no shame in talking to someone. My own doc told me to see a counsellor. Not because I'm crazy or mental, but to help deal with the damn depression of this affliction. After awhile I get very down because of the frustration of the circumstances. No shame in seeking help for yourself whatsoever. I can't answer the question you are asking. I wish I could, but I have never seen the beast as something other than what it is. A damn pain in the head. You gotta do it for yourself in that arena. Lots of soul searching and trying to answer some very intimate personal questions that you have to put to yourself. The Man In the Mirror: When you get all you want and you struggle for self, and the world makes you king for a day, then go to the mirror and look at yourself and see what that man has to say. For it isn't your mother, your father or wife whose judgement upon you must pass, but the man, whose verdict counts most in your life is the one staring back from the glass. He's the fellow to please, never mind all the rest. For he's with you right to the end, and you've passed your most difficult test if the man in the glass is your friend. You can fool the whole world, down the highway of years, and take pats on the back as you pass. But your final reward will be heartache and tears if you've cheated the man in the glass. Sorry I can't help you more. Cat |
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Title: Re: Dealing with clusters - help Post by brain_cramps on Apr 22nd, 2003, 10:32am on 04/21/03 at 20:00:46, Jill wrote:
Right attitude, but you're pointed in the wrong direction. Direct that energy into your fight with the beast. You have to REALIZE that you're tough enough to win this battle, that you've been through the worst. PFDAN, grant 8) P.S. If it helps, you might want to visualize jonny as the beast (or the beast as jonny). I'm sure jonny wouldn't mind! ;D |
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Title: Re: Dealing with clusters Post by oringkid on Apr 22nd, 2003, 12:16pm ok, I know I have been gone for a while, but had many good reasons which I won't go into here. But, I want to say a few things. brain_cramps- YES! I also went the no-med route a good while back and am convinced that for me, meds make it worse. Now I am only episodic so... Wendy, first, nice to meet you! and I agree. Don and Ted, I also agree with for the most part. Now, Jill, I think (and as always, this is just my opinion, and in this case, more of a guess) that one of your main problems with accepting and dehumanizing this thing is... don't get mad....your age. At 20, most of us are still trying to figure out how to be and what it means to be an adult. Most people between the ages of... say, 16 and...maybe 25 are confused to say the least, usually overly dramatic (don't get mad, I know I was VERY dramatic, and STILL can get that way! ;D) and are trying very hard to define to both themselves and the world, who they are. This miasma of clashing emotions...letting go of childhood and trying on the uncomfortable cloak of adulthood..often results in depression, self pity, self centeredness, anger, extreme emotions and lots and lots of other crap AND it is completely NORMAL! Even if it is a pain in the a s s! I went through all of the above (and still struggle with some) At one point, I was convinced that I was special and unique and perhaps magical. Someone told me I was just the same as everyone else and not special in any way (I still can't forgive that guy! >:() So I spiralled into depression. I wore only black clothes for a few years (didn't even realize it!) Oh theres lots of stuff that goes on naturally, and I think the smarter you are, the harder it is. The point here being that alot of your mindset is probably influenced by this transition. Now, let me ask you a question. Before you found this site, did you think of CH as a being that was punishing you? Or did that come after seeing so many refer to it as "the beast"? Personally, when I was young, I thought God (I was raised Catholic) was punishing me. But, I couldn't think of anything that I had done really wrong, so I dropped that idea pretty quick. I never had referred to this as a beast or anything like that before I came here. To me, they were just "my one-sided headaches". "The Beast" is merely metaphorical. As is "fighting the beast" To me, and probably a lot of others here, what we are doing when we get hit, is ENDURING. Not fighting. The "fight" is just... not giving up on life. As far as getting this stuff in the correct perspective, start with what Don said...sit down and think...what do you think you are being punished for? Then, I think you might find that you can look at it as just a rare and very painful type of headache, that our medical people don't know much about yet. Also, think about this... our medical people know very little about anything that goes on in the brain. Once you can see the headaches for what they are, you will be able to deal with them better. Hope this helps some. Know that we all care, and when people care, they sometimes can say things that hurt, and those things sometimes hurt cuz they hit close to home. I am still out of cycle, but would gladly take a few days of hits for you if I could. Sherry |
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Title: Re: Dealing with clusters - help Post by Jill on Apr 22nd, 2003, 12:59pm Thanks all for the help - your words and thoughts help me out more than you can imagine - just so you know.. on 04/21/03 at 20:07:03, don wrote:
I have been asking myself this question, searching for an answer for a long time now... Cat - I am seeing a psychologist right now who is great in what she does but she doesnt understand clusters - that is where the problem is. I am trying to educate her right now with massive amounts of information but so far, to no avail. When I told her how I imagined the "beast" just as I have told you, she told me to treat it like a baby - you dont fight a baby when it cries, you love it. The point - that I should love my head when it is in so much pain and instead of fighting for it to end, I should look for a reason as to why it is "crying out" - just as you would with a baby. Does that make any sense - it is hard to explain? And that poem was great and it is something that I will carry with me - thank you. I never really thought about part of this - if I understood this correctly - as being part of me "growing up" and going through that "dramatic" time of life. The pain is in no way dramatic but I can see how my way of viewing it is. This I will have to think about more. And as far as taking what I said to Jonny and turning it around at the beast that I view, I try everytime but never seem to win. I guess you could say that everytime the pain has ended, I have won that battle. I am trying here - I really am. Thanks for everything, Jill |
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Title: Re: Dealing with clusters Post by Wendy the Brit on Apr 22nd, 2003, 2:30pm Hello Jill There's some very good helpful words in here. I'm only sorry that some of the best stuff gets lost in the quantity of it. This must be very confusing and difficult to see clearly. I am not going onto the other post to put this, but please do read the stuff about thorazine. I am absolutely gobsmacked that someone has prescribed this for you to help you sleep (are you sure this is what they gave it to you for???), and I seriously think your idea about getting a full liver and blood check-up to assess the levels of drugs and toxins you are carrying is a hugely good one. There is a lot of evidence to suggest that over medication can actually worsen many of the headache syndromes and the drugs you are taking a REALLY heavy duty. Also, hello Sherry, nice to meet you electronically. Been here a while myself but had to change my name so I seem new as there was another one of me! W the B |
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Title: Re: Dealing with clusters Post by CJohnson on Apr 22nd, 2003, 3:18pm Jill. You are a smart, well spoken young woman. If you keep taking thorazine (plus all of the other junk), you will become someone who used to be a smart well spoken person. I'll tell you something else. You think too much. You are analyzing things too much. You need to take a page out of Forrest Gump's book, and run. Just run. And breathe. Don't personify your pain and wrap your medicated mind around ethereal notions. Just run. And breathe. Don't think about how the running is helping the pain. Just run. And breathe. Don't run away from anything, and don't run toward anything. Just run. And breathe. Your mind will become eased and clear. Your problems will get smaller and less debilitating. Your heart will become stronger and more capable. You will gain control of your life. I don't care what anyone else says, because I know what I'm telling you is valid. -Curtis |
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Title: Re: Dealing with clusters - help Post by don on Apr 22nd, 2003, 4:35pm Well said Curtis Quote:
Then consider this. There may be no valid answer. |
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