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Title: Desperation... Post by Jill on Nov 12th, 2002, 10:22pm Hello. I am sorry for posting this, it kills me to even do so because I hate to do this to people. That may sound dumb but…I don’t know. I am writing out of pure desperation. I have contemplated this for awhile, this posting but..well…here I am. I want so bad to say that everything is better but, well, I cant. I want so bad to tell you that the meds are working, the headaches have ceased, life is better, but I cant. Sorry. The headaches are so fierce, I am in between them now and don’t want to fight anymore, I fear that I don’t have the energy to do so anymore. They are hitting all the time and oh so hard, way too hard. They are so bad that to move shoots pain to my eye and makes me scream, sorry, I don’t mean to go on about the pain. Meds aren’t working; I am on the lithium and verapamil combination but nothing. The dose is low but they make me feel awful, so I cant up it at all. I can only get two imitrex shots a month and my doctor seems to be running out of option..(sigh). What is wrong that nothing will work? Is it so much to ask that it work? My family has left me in the dust when I need them the most. They saw me in a cluster and now think that I am crazy, needy, so on. When your family turns away where does that leave you? Everyone is leaving me, my best friend told me today that I bring her down because of my bad attitude. What is wrong with me that turns people away? What did I do that was so wrong? Why do I deserve this? It seems that I am failing school; you can’t do well when you can’t even sit through class. I can’t even sit through dinner with my family but hey, that’s a whole other story. My professors were helpful in the beginning but seven weeks later, they are tired of this..who isn’t? I had to register today for next semester classes, I don’t even think I can make it through this semester, even through today.. Once in awhile I can actually read the board and I see all of these people becoming better and I am happy for them. But when is it my turn? I can relate this all to traveling in a tunnel in bad parts of life. There is supposed to be this light at the end of the tunnel and sometimes you have to lose sight of the light when a bend comes up but it is easy to get around and soon the light is seen again. For me though, I can’t see the light, not even a glimmer of it. I keep going in the dark, bumping into walls, falling in holes. I try to find my way with my other senses but all I can feel is hopelessness, I hear the emptiness, I smell the fear, the hatred..and so on. I just can’t seem to mull through. I am so sorry that this is so long and so awful, I just feel so bad. I am losing what little will I have left to fight, the little strength that I have and I really don’t want to fight anymore. It has all become so much on me and nothing goes right…. It took me forever to decide to write and I am still not sure that I should have, I always feel bad for doing this to people but…I don’t know. Thanks for “listening” and thanks for all of the kind words about my cousins (so I don’t forget). Anyone can ignore this, it doesn’t matter..nothing does now. I will end this charade now, I fear the beast may be beconing again.... Thanks for everything guys.. Jill |
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Title: Re: Desperation... Post by Ree on Nov 12th, 2002, 10:37pm Jill it will be your turn... Just wait you will see and this will all seem like a bad dream... and if it takes a little longer you will pick yourself up and say... " I have GREAT FRIENDS out there in CLUSTEROPOLIS(as Ted calls it) that are counting on me to get through this" We all love you and pray for you... you cant give up... You have your whole life ahead of you and YOU are the one that could possibly make the difference in all this... We need you here... We need you well. But WE WILL TAKE YOU SICK... tell your friends to go screw themselves... Tell your parents to call me... I will send you my email if you need it... just hang in there... and Believe... love ya girl Ree |
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Title: Re: Desperation... Post by celtspirit on Nov 12th, 2002, 11:37pm Jill, Sorry you're getting hit so hard, but it's something all of us have been through, or are still going through. Just a month ago, I was ready to call it quits. Between the CH attacks and all the personal shit, suicide was beginning to look like a good option. My cycle was in it's 7th month, where previous ones were only about three. I was wondering if it would end before I ended it for ever. From previous experience, I knew why CH is sometimes referred to as "suicide headaches" and I had all of my weapons removed from the house and locked up safely elsewhere. I had snuck my favorite pistol back to the house about a week before my ER visit that ended up getting me the help I needed. Been CH free for 32 days now because of this site and what I had learned from it. Hang in there! Someday your miracle will happen, just don't give up because the day you give up might be the day before your miracle was due to happen. PFDAN Steven |
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Title: Re: Desperation... Post by Lori on Nov 13th, 2002, 12:19am Jill, I am so sorry about how you are feeling right now. Please don't be sorry for writing to us, that's what we are here for, to help if we can. :'( I wish I could make the pain stop..I really do. I know it's hard to believe there is light at the end of the tunnel, but sweetie, there is. I don't know your history with CH's but there are many meds out there and more to come I am sure. You can't give up, you can't. If you are a point of pure desperation and really think you could hurt yourself, you must call 911 and get help. Don't be afraid to ask for help. I know it must feel pretty awful now feeling so rejected and misunderstood by family and others around you, but there are people here who care. I will pray now that you will call for help if you need it, don't hesitate! Remember there is a light at the end of the tunnel, you just can't give up! Please write us back and let us know how you are coming along and if there is anything we can help you with. I'm also praying for you to have the strength to endure this time. |
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Title: Re: Desperation... Post by Jill on Nov 13th, 2002, 1:28am I know it is quick for posting but, well, I am here. I just had another bout but fought through it. I amaze myself sometimes, to be honest. I wanted to tell you that I am desperate, tired, frusterated...you know but I wont do anything stupid. The pain sometimes is so bad but I want it to end and deep down I dont want this beast to win though I may not feel that necessarily. It may not make sense to you but it does to me..sorry. Thanks for all who have already started to help, I appreciate it. I promise to keep fighting, I just need some help now. I tried for too long to do it on my own but now, now I can admit that I need help. Man, that hurts to say that but I am not sure why. Anyways, thanks for everything. Jill |
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Title: knock on yer door Post by rumplestiltskin on Nov 13th, 2002, 1:33am I read this 20 minutes after you posted it. It sounded like a suicide note. I immediately started tracking you down so that I could send the police to yer house. I just spoke to them after they left yer home. You must continue to seek help. It's all about you. You are yer job. Us Clusterheads have to be mentally and spiritually strong to sustain ourselves through this Physical battle that we are so often losing. We can support you...yer next heartbeat and breath are involuntary...it's yer play. good grief den |
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Title: Re: Desperation... Post by Lori on Nov 13th, 2002, 1:56am Glad you wrote back Jill so we know how you are dealing with this. If there is anything I can do to help you through this tough time, just let me know. I'm up all night here at work (sometimes my eyes close for a few because I'm so tired!) so I can respond back if you need to talk. I sent you an email ealier so you can respond to me that way if you'd prefer. Plus if you email me, the email notification will wake me if I dose off. I need to be woken up anyway! So again email me if you need to talk. |
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Title: Re: Desperation... Post by Riccardo on Nov 13th, 2002, 1:58am Jill, Jill, Jill.... I'm sorry for you.But (as Margi says) there is a light at the end of the tunnel, and it has not necessarily to be a TRAIN... ;D Try to rise Verapamil, if you take low doses... it can do nothing. And think that you have all the life (and not with CH!) to live. May be a month, a year, but it will stop. You DO NOT stop! Any thing! Not the school, nor the friendship, nor the family (despite they don't support you) In the worst case.... you'll have a new experience, a painful experience but.... it's an experience anyway, that will help you in dealing with people, with your next diseases (hope not!) I love you, daughter |
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Title: Re: Desperation... Post by suzy617 on Nov 13th, 2002, 2:26am Jill, I feel your pain in my heart. As the others said, please hang in there, it does end! I would suggest that everytime you feel you cant take it anymore, get yourself down to an ER and make them listen. If your dr has run out of ideas, dump him, find a new dr with new ideas. Please keep us posted and just remember we all care for you here. |
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Title: Re: Desperation... Post by firebrix on Nov 13th, 2002, 3:24am Hey there Jill, Have you ever tried Imitrex injections? They seem to give most people relief within ten minutes. Hang in there babe. Be strong. firebrix |
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Title: Re: Desperation... Post by Charlie on Nov 13th, 2002, 4:38am You'll do fine Jill. Just keep looking around until something gives you a break. Believe it our not, it's lying in wait for you. Until you stumble across it, feel free to come here. Either that or beat the walls and scream. Both work but we're better than plaster when it comes to alternative therapy. http://www.headachesupportgroups.com/echat43/putersmilie.gif Charlie http://www.headachesupportgroups.com/echat43/smiledance.gif |
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Title: Re: Desperation... Post by ShariRae on Nov 13th, 2002, 6:07am Jill, I know this is tough for you right now and I am so sorry...We have all been at this desperation point but yanno what? No matter who has stopped supporting you or not taken the time to understand..YOU ALWAYS HAVE US. That is why we are here. We WONT give up on you..and wont let you give up on yourself either. Call the doc..tell him you need different meds, go to the ER, change doctors, somethin..do somethin to help end this cycle. Ya gotta fight Jill..and we are here with you fighting as well. As for the friends and family..send them here..to the board..to the links..help them understand..and if they still dont..SCEW IT...WE DO! And we wont bail! Huggs to you Shari |
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Title: Re: Desperation... Post by echo on Nov 13th, 2002, 8:14am Hang in there Jill. We are all pulling for you. Wish there was more I could do for you other than my understanding of what has brought you to this point. This cycle will end! |
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Title: Re: Desperation... Post by kim on Nov 13th, 2002, 8:25am Hi Jill, Everyone here knows that feeling, and you are not alone. Reading your posts brings back so many memories. Can remember that feeling. Trying to get through school. Sitting in a Biology class wondering if people would think i was nuts if i just suddently bolted out the door, but trying to remain in my seat and not look like a freak. It is difficult when family doesn't seem to believe you or want to understand. I can't speak for your family, but I know my mom at times got fed up with the constant stress of watching me suffer with nothing seeming to work. At times my family removed themselves too and it really hurts. Friends seem to get scarce too. Hang in. You will keep searching for what helps you and you WILL get through it, attack by attack day by day until it is a thing of the past!!! I wish you speedy relief. I'm holding your hand TIGHT!!!!!Feel It?!!!!! Hang on. It goes away. Keep that thought! Well wishes, Kim |
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Title: Re: Desperation... Post by Stampertje on Nov 13th, 2002, 9:48am Hi Jill, I'm pretty new to this board, so I'm not as good in giving advice as the old-timers. But I just want to tell me experience with friends and family. My clusters started when I was about 17 years old, when I was still in school. And in Holland this is just about the age you start going to the bars and clubs with your friends. Well, they didn't understand at all why I had to stay home so many times. And when I did go, half of the times I had to go home early. Because I was so stupid to take a beer (this is allowed here when you've reached 16) when I was in cycle and I didn't have any abortives. I had to mis many classes in school because I had danced on the rythem of the Beast al night. In that year I lost a lot friends and the understanding of my mom (who thought I just didn't want to go to school). I really began thinking I did something wrong. But then I found this group of people and my eyes went open. It wasn't my fault, but their narrow mindedness. I started printing info from this site and a Dutch site and taking it with me. When anybody asked what my problem was I just gave them the info. I didn't want sympathy, but uderstanding of what was my "problem". Now, six years later, most of my family and friends understand just enough. The ones that still don't understand can go sc... themselves! I will survive and conquer the Beast with or without them!!! About the meds, why can you only get two imitrex shots a month? Have you tried O2? For me this is the best abortive. Hang in there and never ever give up!!! Wishing you a lot of PFD. |
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Title: Re: Desperation... Post by Edna on Nov 13th, 2002, 10:01am Hey hey to you stampertje, new or not, old timer or not..........what you have replied to Jill here shows you are at least one of the genuine ones here!!!!!!!!!!!! Thanks for being there along with the rest of us for Jill And Jill, I'm still here for you baby!!! EDNA |
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Title: Re: Desperation... Post by David Shea on Nov 13th, 2002, 11:50am Hi Lori, I'm A newbie on the MB, I cannot offer you medical advice. But, I can welcome you here. I came here looking for help and answers, as many others did. There is NO shame in that. As I read threw these post I felt A little fear for you, certainly after reading celtsprit message of his guns, That does not belong here, But, that is Another story. So happy to learn from your second post you will not give up and will not let the beast win. You are A fighter. with Lori, Ree, Margie and others you have an Army of power. All the support you will need is right here. Please do not feel bad to ask for it. This is why the MB IS HERE.....Promise to everyone you will win. David |
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Title: Re: Desperation... Post by Ree on Nov 13th, 2002, 12:47pm Hi Jill glad your having a go at life... we love ya girly so keep up the good fight with the rest of us till we can call Cluster Headaches a thing of the past ... Please email me if you want me to talk to your mom... I have a son your age and your mom and I are probably around the same age???? maybe not???? We are hoping our little girl isnt starting to show signs of CH or CPH she suffers with psoriasis and complains of short stabbings to her eye... hers only last about 30 seconds but resemble the CH that her father has... I have had to explain CH to more than one adult and I would be more than ready at any time to speak to your parents... love ya ree Stampertje: What a wonderful new friend you are. And what a beautiful post. We appreciate your kind words and remember we are also here for you too. Edna... you are a doll... what a family we have here... I feel so blessed... ree |
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Title: Re: Desperation... Post by Jill on Nov 13th, 2002, 3:09pm Thank you so much for the kind words, here and everywhere. I cant say that I feel too much better right now but it makes a difference to really know people have been here and actually care. I feel better until that hit comes, it is a viscous circle. I am latching onto you all so hard right now, trying to anyways and I sure hope that that is okay. Last night was a long night, it seems to still be going but I now have come to a conclusion. I remembered the poem (cant remember the name of the poet...) that was about the two roads. It seems that people in their life have two roads to choose from; the one that is paved, easier to navigate and with fewer obstacles. Then there is the road that is filled in with thorns and holes to trip you. It is road that is hard to see through, hard to get through and many times overwhelming. The two roads never meet, once you start you can turn back..it is life. So, it seems that somewhere along the line, I chose the hard road or maybe I was dealt it in my cards of life. It doesnt matter, the point is that I have traveled down this road for so long now that I cant stop. I have a long road ahead of me and it is hard, full of the thorns of pain. I cant see the light at the end of the road, cant see through the brush of life. I am hoping that this road will one day reach to the top of a mountain and then, then it will be worth it for the view will be beautiful. Okay, I am making this kind of wordy..sorry. The point is that I cant turn back and take the easy road. I now have two choices, I can either quit and never reach the end or I can push through, endure the pain, the thorns and trip in the holes. I am willing to push through but I cant do it alone, not right now. I dont know what I need but it is something, something to make it just a bit easier. I am glad that I have reached this, it helps. I couldnt have done it without all of you...really. This does not go with this post at all but it was asked if I had tried the imitrex and the oxygen. I have done both, the oxygen with no success, though I have been told to try it again now that I have preventatives. The imitrex worked about half of the time but my resources are limited and I can only get so much a month. I am on lithium and verapamil and, yes, they are low doses but I really cant raise them because they make me a bit sick. So, I am working on it... Thanks for everything you guys and I appreciate it, I sure hope that you dont mind me grasping onto you...really. Jill |
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Title: Re: Desperation... Post by David Shea on Nov 13th, 2002, 5:08pm Hi Jill-Sorry about your pain, Just wanted to tell you again, This is the place for you. Grasp it with open arms everyone is here to help. David |
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Title: Re: Desperation... Post by jonmach on Nov 13th, 2002, 5:52pm hi jill im jon very nice to meet you and you certainly have touched on things we most all have felt and wernt able to voice or didnt have a place to voice. thankyou for asking for help. its caring for the peole around me that keeps me going. you are in my heart and in my prayers. was in the same tunnel you are traveling for a long time breathe breathe breathe take no shit from the bastard it takes more than mere pain to bring you down. i am at your disposal jonmach |
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Title: Re: Desperation... Post by OneEyeBlind on Nov 13th, 2002, 6:23pm Jill, sometimes it seems like it will never end. But your turn for pain free is coming !!! Ya just have to keep trying and find that right "combo platter" that's for you. Keep up the fight, and in the meantime I will be praying that you get some relief. |
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Title: Re: Desperation... Post by cerebus1968 on Nov 13th, 2002, 9:55pm Hi Jill, Cerebus here.........I'm rather new at this myself, and I certainly DON'T have all the answers here. Still there is a wealth of compassion and Information to be had here and speaking for at least myself, A family for you lives here If you need it. Personally Imitrex has helped me alot, I don't know what I'd have done without it. I also take Verpamil and Indocin as a preventative. And Hallelujia I just got my Oxygen today. Has your doctor tried Oxygen? Just a thought, anyhow, whatever you do DON'T GIVE UP!!!!!!!!!!!! Things may be bad now but believe me they could be much worse. It may be hard to imagine how, but, believe me, just when I thought there was absolutely NO way I was going to live through this, I persevered anyway, and coming here has been a HUGE part of the reason why. The collective knowledge and experience on this site can be spiritually comforting to say the least. We may not be able to take away your "physica" pain but we CAN alleviate some of your Spiritual anguish. Stick around. Best Wishes, Captain R.D. Brown |
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Title: Re: Desperation... Post by pjbgravely on Nov 13th, 2002, 10:06pm Jill, praying that you will be PF soon. PJB |
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Title: Re: Desperation... Post by Lori on Nov 13th, 2002, 11:09pm Hi Jill, I am back at work tonight so if you need to talk or are having a rough time, email me at lori.ozburn@dyntek.com I know there have been recent threads about the proper use of 02. You need to be using a certain mask in order for it to work. Someone please post the link here for Jill if you know right where the thread is please. If you haven't used the right method of taking the 02 that may be why it didn't work. I don't know, just trying to throw out this out to be sure you know. Make sure when not in pain you read as much as you can about the meds avail, preventative and abortives, because there is so much you can still try. You just need to know what's out there and keep trying. Maybe there will be another combo for you that will work. Maybe do a search on DHE drip(Ithink that's what it's called) in the search field up top. Some have been admitted to hosp for this I believe and it helped when other things didn't. Do a search on it though, because I don't recall all the info. You just need to arm yourself and fight this. I hope you have a better night tonight. :) |
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Title: Re: Desperation... Post by BobG on Nov 14th, 2002, 7:09am Nice message NicholasD. Thanks |
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Title: Re: Desperation... Post by David Shea on Nov 14th, 2002, 7:19am Hi Jill- Two really nice post by Captain R.D Brown And Nick. This shows me all the compassion, and support I need is here. Hopeing you can find strenght in these post. We are all here for you. I have been seeing many post here from suffers in Maryland the last few days. Reach out if you need. Bet, you will find compassion Wishing you pain free days and nights. David |
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Title: Re: Desperation... Post by Jabeen on Nov 14th, 2002, 4:39pm Just wanted to let you know I am thinking about you and praying for relief for you. Not much else we can do but offer support and advice-at least here we all understand what you are experiencing. It sucks-hang on. :) :) :) |
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Title: Re: Desperation... Post by Jill on Nov 14th, 2002, 5:08pm Hey everyone. Thanks for all of the thoughts, prayers and messages. You guys are just awesome. I must say that today has been a better day for me. Physically I am not good but emotionally, I am better than I have been for awhile. I have my good moments and my bad ones, but for right now I am good. I cant explain exactly how I feel right now, I am not sure of the words to describe it. I am still fighting the beast way too much but it has become a different kind of battle. I am not fighting to just get him away from me, I am fighting harder to beat him. I want to kill him (not to be overly dramatic) so that he never comes back. Before I just wanted him gone for the moment and so on, but now, now he just has to leave. I guess that I am stronger now, or feel stronger. I may not be able to see the light yet (though I am trying) but I have confidence (something that I have not had in awhile) that I can mull my way up the mountain, I can push through the thorns, take the cuts and trample through the brush. I am determined that I am going to see the view from the top and take pictures. I have a long road ahead of me, a long one and I dont think that I can do it alone, I am not afraid to admit that. I still have my good moments and my bad, more bad than good but today, today I got to take my first walk in the sunshine for a long while. It may be a short one but it is one that I will remember and with that memory, I will perservere. Thank you all for your stories, your help and your prayers. My family and friends may have turned me away but with that I have found a new family and I have finally been able to open and accept the help and, yes, the love. It took awhile but I am ever so grateful that I have. I suppose that that is enough for now, just wanted to tell everyone. You all are so awesome and I feel as if I owe you all the world! Thank you, thank you, thank you... Jill PS...sorry Edna...couldnt wait. |
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Title: Re: Desperation... Post by Not4Hire on Nov 14th, 2002, 6:42pm hey Jill.....what can I say?......just glad you are posting...sorry the o2 is not working for you...you gotta lotta people here pulling for you.....there IS an "key" and I hope you find *yours*....best regards and thanks...your friend, Steve |
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