Okay, so I went to my doctor this afternoon and something he said really ticked me off. I have not been doing well the last few weeks and I was discussing with him my options, specifically drug options. We decided to up one of my meds. I have been having horrible fatigue, probably as a side effect from the meds, but I may have some other health issues going on, thyroid, hormonal, etc. So I told him if my fatigue gets worse with this new increase, what are we going to do? He said we would have to come back down and I may just have to accept that this ( my new level of pain and my increase in fatigue) is a new normal for me. Boy, that just really made me so mad. And then, to top it all off, he said next month when I come in, he wants me to think about going on an anti-depressant, besides Nortriptyline, because he thinks there is a depression issue here. AHHHHHHH!!!!!
I normally have a wonderful relationship with my doctor and he is always so willing to try anything I want to , but today I wanted to kick his teeth in!!!
We talk a lot on here about acceptance. Accepting the fact that our lives have changed and we have to do whatever it takes to make the best of it while dealing with this monster that rips at our faces. I am all about that. If any of you have ever read anything I have written you know I wholeheartedly agree with that. But on the flipside to that, I am not ready to surrender either. I am not ready to throw my hands up in the air and say this is it, this is how I am going to spend the rest of my life, curled up in a heap of pain and misery, barely able to lift my head from the pillow. I am not that old,( not that young either) but hopefully I have a good bit of life left and I want to live it, not just get by.
Maybe I just have to find that happy middle, my "new normal" while I keep fighting this nasty beast. I guess I just have to figure out how to do that...
Karen if you run across one of my last week post's I think we are on the same pg. at the moment I only wanted to brake the mirror at home.ha! I sure hope ya all are cool this mi. heat and humidity! NIGHT, Dawn
Aw Karen, I get it.
It frustrates me to read it time and again, doctors not knowing what to do next, telling their TN patients time and again “there’s nothing left to do” or "accept that this is your new normal"
NOPE!
Like you said, there’s accepting we have TN, but no way should we give up hope for a better treatment or a cure down the road.
Not acceptable.
We have to advocate for ourselves unfortunately as you well know, don’t lose hope girl, your strong, other options will present themselves to you…
I hope you get relief soon, and the fatigue issues resolve.
(((( hugs )))) Mimi xx
Yes, my GP has kind of given up on me. Going to see neurosurgeon tomorrow to see what he thinks. Pain has come back again after second MVD. I have accepted that I may well be stuck with this for the rest of my life but I have not given up on the idea that something may be done to improve things in the future. How great that would be for us all!!!
Meds make me very tired. I am currently on 400mg pregabalin and 10mg amitripyline(not for depression, but pain relief).
Karen...do not accept that this is the "New Normal". I know how you feel because I was in the same boat 30 years ago without even being able to get a diagnosis. Doctors, dentists, holistic healers, neurologisst, I even think a medicine man or two , and noone could tell me what was causing my incredible pain. I would get episodes that would last for months with a few weeks break in between. I went through this for 8 years. All that was available to me was tegretol and the dosage was getting so heavy with no relief that I was losing my mind. I was blessed to have stumbled onto a neurosurgeon, that without an MRI , told me what I had and how he would treat it. He laid out the possible outcomes to MVD surgery but assured me he would take good care of me. I woke up pain free and have been blessed pain free for 30 years. Dont ever give in and dont ever give up. I hope that your answer, and everyone suffering from TN find there answer right around the corner. Stay strong righta
Thanks y'all for your comments and encouragement! It is so hard to find a balance. I now am trying a new doctor, a D.O. (doctor of osteopath) and she is convinced she can "fix" me. I am a bit skeptical but I am going to try to be optimistically hopeful. She thinks there is a inflammatory component. had 10 vials of blood taken today. We will see if she can figure this out.
So glad I have y'all for support! Don't know what I would do if I was all alone in this!!!