I just need to vent..I am trying to hard to keep going with everything in my life, but pain and meds are holding me down. I am trying to continue school at my university, work, and deal with the pain. There are times where I can't hold my head up, my body becomes useless. I can't do homework or reading. I sleep so often. Dr's don't really know what to do for me now..kinda is a waiting period.
As many of you know, the meds make things near impossible! I am told to take extra meds when pain gets really bad, but then I am groggy for a while. I just feel like I can not win. I am determined to not let this take over my life, but after 8 years I am emotionally and physically drainned.
Sorry..just need to vent to those that get what I am talking about!
I'm sorry to hear you've not found any more relief since we last connected. Clearly yours is among the most severest of cases and few, if any, can know how much you're suffering. I am older than you are, and perhaps have learned something through other adversity that may apply here. It came to me from your phrase, "I am determined to not let this take over my life..." What if we did the counter-intuitive thing and, as they say, "let go to the pain." It's very Jungian, and at the core of all religions. C.S. Lewis even wrote a book, "The Problem of Pain." You've probably heard the phrase, "If you're falling, dive!" I know it's hard to contemplate right now but if you don't know what I mean perhaps you might try an experiment. Next time the pain is more than you can manage try to go off by yourself in a quiet place and sort of "get inside" the pain in your mind. Respect it, even welcome it if you can with a recognition that it's in your life for a reason and you want to learn what that reason is. Accept it as a gift.
I'm trying to do this with my own TN and it's the ONLY thing that brings relief, apart from the meds of course but this has zero negative side effects. Granted, I couldn't do it without the meds and I don't know that I'll ever be able to give those up but this practice has really deepened my experience of what's going on. I don't know about your faith experience but maybe you'll recall the trials that the saints were put through. Read Job if you benefit from that sort of thing. God only hurts the ones S/he loves.
Thanks Pam. I will try that, when i can. My problem is that I am trying to live a "normal life" meaning, I dont know how much I can do this while sitting in class. I have my days (I am sure we all do) where I am accepting of the pain and what my life is, but then I have other days where I am purely angry and frustrated.
I am trying to find the balance in my support system. The people I live with are very ignorant and do not believe what I have is true, so that is difficult. I know there are people that do believe me, so I must lean on them.
I have read other books by C.S Lewis..very interesting! There is so much to digest within them. I had never heard of the one about pain. Thank you for your response and I hope you are finding some relief.
I'm sorry you are having twinges of pain after 5 months pain free. That must be disappointing. I understand the feeling of being physically and emotionally drained, too. I am a 10-year sufferer.
I went to my Doc and told him I might be depressed about it and he is very kind. He doesn't rush into things. He's been treating me since way before I had TN. He gave me some pamphlets to read and leave laying around on the coffee table or such so that other family members could read them, too. My family goes into denial that I could actually get depressed about this or anything else. I have always been "the strong one". Then, if I still think I'm depressed, he'll prescribe something for me.
I believe we all have lives with TN. We are not TN sufferers who live. To me, there is a big difference. I think you should be really proud of the fact that you are going to school and working. Those are two huge things. For anyone!
Thanks for your response. I too have been looked at as " the strong girl." At times, let myself down for how much I let this get to me. Tonight I am having really hard time. This week has been awful with pain and my emotions are just spent. I was reading something about and invidisible disability and I just lost it. Bawling and feeling beyond upset. I talked with my mom and helped a little, but then others around me got me upset again. There really is no winning.
I am pretty sure I am depressed, but I just have not been diagnosed. I was put on Cymbalta (there have been many people who get relief from TN) I did not object because I thought maybe it would help with my emotions, but apparently not. I am like a switch. One minute pain is ok, I am calm. The next, pain is bad and I am a witch.
I can't focus when I am like this and I just feel like I am not productive. When I cry I am just angry and like well I have to read this and this is due monday, but I just can't pull myself together enough to complete what I have to.
Ahh..sorry for that ramble and depressed note..its just been one of those weeks..
So sorry to hear this and can relate so well. I have been saying some of those exact things myself. Thank God I do not have a sick child, to the best of my knowledge he is healthy and I thank God every day for that. I was diagnosed with TN in Sept, then another Dr. diagnosed me with vascular migraines, now we are back to TN and waiting to see another neurosurgeon, in the meantime I am taking so much medicine that I cannot function and although I know things could be worse, I am miserable. I cannot make plans because I don't know if the pain or the side effects of the meds will allow me to even feel like doing anything. I know I'm miserable to be around. I'm trying to work and go to school and making major mistakes at both, so I'm not sure how much longer I will be able to keep either of those up and I have to work, I'm a single mom and was hoping to get through nursing school to make a better life for my son and me. I get really depressed and it's hard to pull out of it, so I know what you mean, but please try to think as positive as you can. Your friends here will be praying for you and will be here to listen.
I am new to this site, and I am told I am young to have this...TN, but I suffered from it for almost 10 years with out knowing what it was. Just thought I was some sort of hypocondriack. But I know one thing...YOU CAN MAKE IT!
At least one more day, then hopefully another! and if a day is too much to think about, make it just a few hours at a time right? That's what I do! I've been doing acupuncture lately...ever tried it? Then I'm ordering the PainSheild Ultrasound machine. Please let me know if you've had success with any of these??
I will send strength and determination your way Ally! Just keep going, Just keep going, Just keep going...:-)
You don't know me, I'm new...but what you just wrote brought me to tears and I want to thank you. Just today I was trying to do just what you described. I think I failed, but I am going to try again and again. Like Job, I hope I can find purpose in this suffering, accept it and strive to go forward.
I've suffered from this for 10 years. I'm just now figuring this out and putting pieces together looking back as I learn more about TN. I only told my husband about it a little over a year ago. And only then because I couldn't hide the contorted faces and tears any longer. Plus, he was beginning to think I had turned into a terribly mean and inpatient person. Not my normal traits, but as you know, that side comes out in us after we've fought off sever pain for days with out relief.
I would like to ask you what meds bring you relief? and What surgical procedures you've tried? I feel as if I am trying to learn a whole new way of life and am looking for all the help I can find. I usually turn to scripture for help with my problems. And though I've found countless answers for coping, not one revelation on what meds to try! That was my sore attempt at a joke at 4 in the morning!
Pamela Wilson said:
Hi Ally,
I'm sorry to hear you've not found any more relief since we last connected. Clearly yours is among the most severest of cases and few, if any, can know how much you're suffering. I am older than you are, and perhaps have learned something through other adversity that may apply here. It came to me from your phrase, "I am determined to not let this take over my life..." What if we did the counter-intuitive thing and, as they say, "let go to the pain." It's very Jungian, and at the core of all religions. C.S. Lewis even wrote a book, "The Problem of Pain." You've probably heard the phrase, "If you're falling, dive!" I know it's hard to contemplate right now but if you don't know what I mean perhaps you might try an experiment. Next time the pain is more than you can manage try to go off by yourself in a quiet place and sort of "get inside" the pain in your mind. Respect it, even welcome it if you can with a recognition that it's in your life for a reason and you want to learn what that reason is. Accept it as a gift.
I'm trying to do this with my own TN and it's the ONLY thing that brings relief, apart from the meds of course but this has zero negative side effects. Granted, I couldn't do it without the meds and I don't know that I'll ever be able to give those up but this practice has really deepened my experience of what's going on. I don't know about your faith experience but maybe you'll recall the trials that the saints were put through. Read Job if you benefit from that sort of thing. God only hurts the ones S/he loves.