I have been struggling to want to keep fighting.I have went through every emotion possible especially the last 2weeks has been HORRIBLE! I really believe the pain is going to drive me crazy. I keep making these STUPID apps. to all these drs. that I think might be able to help me and the treat me like I just have a minor issues, like a cold or something and I will be all right.BULL I am far from being all right.Why do they not get it. Wee hrs. of the morning a couple days ago I was planning to end my life, I decided to come here and was glad I did and the 1st thing I saw was danielleq's disscussion about has anyone found peace,and read all the responses. Then I decided to read all of her 9 blogs,I cried for her, for me, for everyone with this HORRIBLE MONSTER! I also read every response to all of her blots. I think I learned a lot I just wish I could remember more then I have. I also have tried many of the things suggested.Nothing seems to be helping. I also feel so guilty I have screamed at Austin, (my grandson, he's 15 and has lived with me most of his life being I have had tn2 and tn2 for 22yrs.he has never known me without tn.I was so crazed with pain I am embarrassed to say I went to him twice in the last 2 weeks asking him if I could check out? He said, "NO! GRAMA I NEED YOU AND I LOVE YOU NO MATTER WHAT! " Then me not being able at the moment to control what came out of my mouth I said, "Well, I guess I'm really screwed now!" He said, "Yep I guess you are! With that Awesome Austin grin, he said, "grama come snuggle with me."How could I have screamed at him as much as I have over the last month, he wants to try to get me back into my old pain Dr. but for several reasons I don't think he will be able to take me back.Yesterday at least the morning and afternoon was AWFUL, A great friend, my biggest support system she has been through so much with me over the last several yrs.I know it's not easy for her, she's. 69 and does have health issuses of her own, her faith keeps her going and I need that and her friendship and support and I am so thankful for the Lord putting her in my life because my faith is not very strong right now. Sorry my thoughts are all over the place right now but I feel the burning, boring, aching throbbing, stabbing, starting to get real bad again I don't want to breathe let alone move.Back to yesterday, my friend helped me to make phone calls because I knew I needed to try again for help but you all know how hard simple phone calls are to make when you hurt SO BAD! I did get an app. I guess now it would of been yesterday with a psychologist who was a little helpful but it still will take awhile he said if Austin wasn't able to get me back with my pain Dr. when I go back to seem him in two weeks, that was the soonest he tried for next week. He said like I have read here we are our best advocates and we know our body better then anyone. So he will call the pain Dr. if need be.I don't know if that will help or not. Can't hurt. Maybe he could find someone else if he can't put me back on opiods. I am so scared I know what I am doing is wrong by self medicating and I could die. The drs. so far all of them just say that's not good but that's. about all they say. Even when I saw my old neurologist after 20 yrs. He did up my trileptol and put me on 150 mgs. Aday of trasadone (not sure of spelling) for anxiety, hasn't helped much yet I have so much trouble typing it takes me forger because I shake so bad, I spend so much time cleaning up messes from me spilling, knocking things over because of my shaking I thought it was high blood pressure but even when my bo. is normal I would continue to shake the rn. said it was anxiety she gave me a shot in the er 3weeks ago it made me feel so much better so she gave me adavan (not sure of spelling) I had never heard of it before so she gave me a script for 3 days thinking when I saw the neurologist he would give me a script but he offered me klonopine I told him I didn't want to do that again I was on it at high does I guess up to 6 2 mgs. aday. I will call him laser and ask for lidocine gel the patches something. Thank -you Kc dancer! I even reread sheila's link: How to have a bad day gracefully with chronic illness. Thank -you sheila! My biggest concerns now is dealing with this pain when it is too BAD TO LIVE WITH and my anger especiallytowards Austin he's my everything. He was always my angel baby and still is. I tell him how sorry I am after the fact he says he knows its the pain and that is why he wants to make that phone call.Like I said after my app. I will let him, I really cant stop him he has his home number the doc gave it to him yrs. ago they have a great relationship.Austin says their buddies.There is more I could go on but I can't right now.MY EAR, MY EAR! HUGS and wishing all the best and painless day possible! Dawn
Dawn, I am so sorry for everything you are feeling right now. I wish I could take all your pain away. I am so sorry you haven't found Dr.'s who are patient and understanding. However, I am glad that you have found us, because we understand! You are not alone in this terrible struggle anymore. I know it feels that way when you are pacing around the house in pain - I feel that. But then you can come here and connect. I hope this connection is something that can help you. I wish I had more to offer you right now! Hugs (the ones that don't trigger the TN)!!!
Thanks so much Leeter's I am just so lost and more scared then ever! I just don't know what to do next it's so frustrating and now we are coming on another weekend which scares the poopy out of me.This mi. weather is my worst triggers. SOFT HUGS BEING SENT YOUR WAY SO GLAD YOU WERE HERE! Dawn
Dawn, you just remind yourself that you have dealt with this type of pain before, maybe not to this type of intensity or level, but you CAN do it again!!!!!
Look, not everyone on here will agree with me, so take it with a grain of salt, but if you are worried about it being the weekend and not being able to contact your Dr, and not having any type of breakthrough pain medication - I have had luck at the ER before. If your pain is absolutely out of control over the weekend, they do have rescue morphine drips they can put you on. It isn't a long term solution. It is expensive, even with insurance. But the option is THERE. You do not have to be afraid of the weekend. I have used the ER twice with terrible TN pain. I usually try to just ride it out, because I can't run to the ER every time the pain gets bad. But sometimes it is necessary. Granted they had to give me several shots of morphine to even bring the pain down, but it stopped the level 10 pain.
I am so glad you have a loving boy like Austin in your life!
Leeters said:
Dawn, you just remind yourself that you have dealt with this type of pain before, maybe not to this type of intensity or level, but you CAN do it again!!!!!
Look, not everyone on here will agree with me, so take it with a grain of salt, but if you are worried about it being the weekend and not being able to contact your Dr, and not having any type of breakthrough pain medication - I have had luck at the ER before. If your pain is absolutely out of control over the weekend, they do have rescue morphine drips they can put you on. It isn't a long term solution. It is expensive, even with insurance. But the option is THERE. You do not have to be afraid of the weekend. I have used the ER twice with terrible TN pain. I usually try to just ride it out, because I can't run to the ER every time the pain gets bad. But sometimes it is necessary. Granted they had to give me several shots of morphine to even bring the pain down, but it stopped the level 10 pain.
I am so glad you have a loving boy like Austin in your life!
Lester's, sorry to keep bothering you I have been to the er when the pain was mote then I could take and I knew that a 2 Mg. injection of didluid would stop it but 3sat. ago I went and because I smoke mm they won't give it to me again I am real sure and I haven't been able to get it out of my system so I failed the drug test. Thanks again for sharing you are helping by just being here right now, more then you will ever know. Soft HUGS! I am so open to any suggestions right now . You are a life saver in my moments SOFT HUGS, Dawn
I am so glad you read my post, and my blogs. I know some of my writing is “raw” and can be hard to read because it’s so emotional, but now I know that to hold back would be to lie. Yes, this is a terrible condition. Yes, we think about getting rid of the pain permanently, and we feel like we aren’t treated the way we should be by doctors… it sounds like you have at least one good friend in this world, and if it makes you feel better, then know that that one friend is more than some others have. And of course, don’t forget this amazing support group right here! I’m glad you wrote about your frustrations; sometimes, to write it down and then take a step back and rereading it is all it takes to life your mood and gain some insight. I reread my own things frequently, to remind myself that feelings change, moods change. Maybe this disease doesn’t, maybe it gets worse, but the one thing it can’t take away from me is my will to survive. My personality is still intact, that’s very important to me. So I win, and I am going to keep winning this fight… I’d wish you nothing but pain-free days, but since sometimes our wishes don’t come true, instead I’ll wish you peace of mind and some form of contentment. Keep reaching out; you might help someone the same way that I’ve helped you.
Danielleq,thank -you so much, you are so right I have my friend, but I have my (angel baby) Awesome Austin and if I cant seem to want to live for me I have to fight to live for him.Right now I have just been on such a bad spot for so long and I know you have too. So I will try hard just like you are doing.Your an amazing woman, and awesome mom. I just wish I could be better for Austin. I feel it is so unfair to him.danielleq if you don't mind would please send me a friend request. I am crying so hard I can't see what I'm doing. You are an inspiration! I know our feelings change when the pain changes.SOFT HUGS AND AN AWESOME DAY TO YOU! Dawn
Can you and Austin put together an email to dr Casey…
you are in MI… CAN YOU do an MVD? My pain is gone at year 2, let me know if I can help
But before that… Call GP OR dentist to call you in prescription for lidocaine face patches!
Kimberly
Kc Dancer Kc said:
Can you and Austin put together an email to dr Casey.....
you are in MI..... CAN YOU do an MVD? My pain is gone at year 2, let me know if I can help
But before that... Call GP OR dentist to call you in prescription for lidocaine face patches!
Kcdancerkc@yahoo.com
Kimberly
Kc, ok, I just got a call back from gp office the will pass message to the Dr. and her nurse will call me back with her answer, I have no need for a denist if you get my drift I think that is why I have tn to start with. That story is a mess that was back in 1989 and 1990 and then in 92 I started having worse migrains and then the tn pain started.I don't know how to email but Austin does he will be home from school around 3:45 pm.Just wondering why email Dr. Casey. A family member whoops my ride so now I don't see him untill Nov.8 th at 9:00am. Hugs, dawn
(( Dawn)), you’re not alone…the roller coaster of TN, the pain, the side effects of high doses of meds etc etc All of these and more have caused me to be short tempered and lash out in anger at my family. It’s terrible, and not like me at all. What we need to remember is forgiveness, for ourselves. I try now to be more aware of my mood and recently found myself in a doozy of a bad one…I isolated myself, and really tried hard to think before I opened my mouth. It’s so not fair to our loved ones…and I feel so badly afterwards…as do you I know…just want you to know its not only you…
I don’t know what meds you’re currently on, or what you’ve tried in the past, my saving grace (before my MVD when my pain was resistant to meds) was a heating bag called the magic sack, heat for me, helped take the edge off. I had non-stop high levels of pain all day, everyday. Without this microwaveable heating bag I don’t know how I would have gotten through it… I also bought a lidocaine cream called Emla, this too helped for some of the pain.
Finding a doctor or neurologist to support you especially during a pain crisis is so important.
I hope you’re able to find one to stand by you. Maybe your old pain doctor can offer something new to try?
All this to say, I’m thinking of you, wishing you a quiet day with minimal to no pain, sending you positive thoughts and prayers to get through another day,
gentle ((( hugs ))), Mimi xx
Thank-you so much Mimi. Gentle hugs to you also. Dawn
I know this is hard. I too struggle with the pain and wonder how it affects my family. I hope that when I lash out, the kids understand it is the pain talking. Afterwards, I do my best to find a quiet place and apologize to each one for being angry (usually about the smallest trivial things). But even when the pain is the worst, I try and think about my kids and that I want to see that smile on their faces. I hope you find a good doctor like I did, who is willing to try things I suggest. I have learned a lot on this website and I hope I can help other's through my journey as well. I am still on basically one medication and hoping to stay that way, but I understand that there is a high possibility I will need others. I have noticed that the side effects tend to go away after a few weeks so hopefully there is something out there that will help you.
Hope you have a slightly better day than yesterday. Be thankful for the people you have around you and maybe the pain will start to calm down.
Dawn, like everyone has said, know you are not alone, it doesn't help the pain, but it can help our frame of mind. I have had a heck of a few weeks, had moments of pure hoplesness, but I get back up somehow. I am 47, I grew up with my Grandmother, she died of natural causes when I was 15, to this day how I miss her, Austin is blessed with you and you with him, on days you can't fight for you, do it for him!!! I am the caretaker of my disabled husband and the proud mom of 3 Saint Bernards and 4 cats, on days I feel like giving up I look at my precious family and know I have to find that fighting spirit, hard as it can be. Don't get me wrong, I have my days and yes, I could use some help in anger management, that just comes with this as we all know. I am glad you have such a close friend as well, my friends seem to have disappeared between my hubby's illness and my TN, but thats okay, I have this group and my little family. Love and support are so important, I feel like I know everyone on here as a friend! I wish I had a magical suggestion for you, but I can tell you we care, you will be in my prayers and please keep posting. Sending you love and a gentle hug,
Betsy
I’m confused, are you already going to see dr CASY ? Soon!?