I'm so upset and panicky about having pain all the time. I don't know how to do this everyday. I feel like my neurologist has given up on me. She told me for pain management to go to my PCP. My PCP basically said "Why are you here, you have a neurologist and a neurosurgeon for your TN." No one will help me with my pain management. Everyone says this is "treatable" so there is no pain management. The medicines "should" be working. Well breakthrough pain is the game and I am sick of playing. The one neurosurgeon I saw said I can have Gamma Knife but it most likely won't help my pain. He sentenced me to a life of pain and medications that don't work. How am I supposed to have children on all these medications? Where does that fit in?
I want to be hopeful and happy. I want my can-do attitude back. I don't want panic attacks 2-3 times a day. I want out of this hole and back to my hopeful self. I don't want to feel this way. I just want my life to go back to "normal." i.e. accepting the pain for what it is, and still living my life with a smile on my face.
Has anyone seen my smiley face? I would like it back. Sigh.
I know, I know. This too shall pass. Things will get better again. But this is how I feel until it does pass.
Thanks Deb. I really do appreciate your kind words and thoughts!!!I felt better once I wrote that. Venting really is important, isn't it. Oddly, I cannot keep a pain journal because it makes me too depressed, because I focus too much on the pain. I do better when I don't think about it as much. I know that isn't helpful medically, but what can ya do. Today is a much better day! I am going to the gym today and working on my new adventures in cooking blog :).
I am sorry you are getting the run around from your doctors. Nothing is worse than when the people who are supposed to be helping you push you off onto others. TN/ATN pain is so horrible and scary. The unknown of how bad, which kind, and where the pain will be is just too much. I bet if your doctor could feel it he would not pass you off again.
What is the name of your food blog?
I felt very similar to you the 1st six months after my diagnosis. I too wondered when I'd get my smile back. Things did get better though. My neuro has adjusted my meds and I was seeing a chiropractor for a while too because it seemed to help to get an alignment. I will keep you in my prayers and one day (hopefully soon) you'll be able to smile brighter than ever.
LBH, I am so sorry to hear how rough a time you are having. I feel we all wonder when/if the pain will go away. I was already on anti-depressants when I started having the pain. When I read that TN can cause depression and anti-dep's are sometimes prescribe, I was REALLY depressed. I have found this website to be so helpful when you need to vent. And also when you don't feel the need to vent. By that I mean, it seems always help me to know that others unfortunately are suffering the daily pain that I have. Let's face it, anyone who doesn't have it, can't possibly know how awful it is. I like to write in general and so I try to keep up with the message board and post whenever a post speaks to me. I feel if I can offer any comfort to someone in the same situation, I feel a little better. So I enjoy that little improvement as I realize it's been a distraction from my plight. I hope this finds you feeling better. I am sending prayers your way. Try (and I know this is hard) not to worry about the future. We only have today. All that you dread now may never happen, and then you've lost out on today. Hope this helps you in some small way.