thanks for the welcome words from everyone. hope I won’t talk too much, but I have so many questions & this is so new. also, I live alone - as I’m sure many of you - and to be alone with the pain and all it engenders can be frightening and discouraging.
I really needed this community. I have several well-meaning friends who have said “great news! so glad you have a diagnosis!” and “hope you get better soon” as though I have the flu. I don’t blame them at all. they don’t know what to say, and they have their own lives to live & problems to deal with. heck, I dont know what to say!
I just left a rather well-paying job and successful career; this TN is a great equalizer. my colleagues have pretty much stopped keeping in touch now - I can’t really blame them
I’ve read a fair amount on TN, which is rare enough, but I guess since ATN is more rare, I’m having trouble finding hope. I really appreciated Vic’s comment about having a somewhat normal life, I needed to know that was even possible.
thanks for those who are still reading, & I’ll try not to make all my posts this long
I'm so glad that you found the site and that it's helping you. It's been important for me - not only for information, but also support from people who really know what we deal with. Also, you still have hope -- there are several different meds that you haven't tried - one of those might work. I know it's hard. But you're not alone. When you're at home alone and you're scared, log on here and chat with someone else online. Or write blogs. :)
Just wanted to say hello and offer you hope that you can go into remission, I did for almost seven years. I have been researching all this past weekend and reading all the blogs as well. I go to my oral surgeon today and plan on going back on topamax. Seven years ago I was on different meds and eventually lasted on topamax until remission came. I am starting to think the ATN stayed away due to my taking clonazepam during those years of remission. I stopped taking clonazepam because I just felt I wanted to stop (did so in March of this year) and the ATN came back in April. Maybe just a coincidence but don't think so. I never realized clonazpepam was a med for TN too. Ok, going too long. Glad I found this site.
I dont want to encourage negative talk, but you hit something so specific to what I struggle with in your post. One of the main reasons I joined...
I am single, live alone (exception-3 cats and and dog), my family is 3 states away, and so here I am battling this thing alone. Add on to that, before my latest breakthrough, I have been actively trying to date and find someone to share my life with. I am 38 and running out of time, and really can't "date" when I am constantly in pain and feeling weird from all the drugs I am on.
Anyway, I am only on my second medication, and Im am actually hoping it wont work. How crazy is that? I dont want to be on this med and my doctor would not give me a choice. I am obviously looking for a new neurologist, and one that will discuss more than just the one medicine she is familiar with.
My biggest goal for now is to find a way to keep my job. I will be forced to move home if I were to lose it as I have no savings. This job has changed my life over the last 8 years and I want to prove to them that I will be able to keep up my duties, and then some, despite this evil condition that I have been given the opportunity to fight.
