Thank you all for your support thus far. I will warn you, i'm full of questions!
I'm very thankful to now have a clearer understanding of ATN; I really think this is what I have (as does my GP) but since i'm still in the diagnostic stage I have this underlying fear they'll say, "Oh, it's all psychosomatic". I know without a doubt it's not, but i'm sure you have all experienced that fear of being called paranoid.
Anyway, I wonder sometimes how i'll ever be able to continue on with my work due to the pain. Some days it takes everything in me, all my motivation, to make it through the door to get to work. Every hour, every minute can feel like i'm in the midst of a triathlon and i'm so ready to just walk out the door. I fear sometimes that I wont be able to continue my career.
How many of you have had to leave your job due to this? If you had to leave, were you able to get disability? Also, for those of you who have been able to continue, what has worked for you? Have your coworkers or supervisor been supportive?
I love my work so much and am just beginning my career. I've been talking with my therapist about ways to cope and how to live in the midst of such debilitating pain. Some days are just so much harder than others.
Laura, if you haven't already visited our Help with Research tab on the menu above, the following sub-sections of that article might be of some interest to you.
There is also information in that tab concerning disability application. Please note that I am not generalizing any observations on whether or not you may eventually find yourself needing to apply for disability. Cases vary too much between individuals. However, the process itself can be harrowing.
Tell us a little, please, about the meds you are presently on, and their effectiveness for you...
Tegretol 200mg x3: This "seemed" to work at the beginning but more than anything made me dizzy, loopy, and forgetful. I haven't given up on it and will probably be going up on it soon, which the neuro told me to expect.
Bacflofen 10mg x2: Definitely better than flexeril or soma, but still think I need a higher dose. My GP plans to up this probably in the coming week.
Celexa 20mg: This has definitely helped with the depression factor. Being in pain all the time and having the isolation that comes with in my opinion makes both therapy and meds essential.
Naproxen 500mg as needed: I have been on either this or 800mg Motrin for several years. Before any real diagnosis with TN or TMJ I was taking motrin or excedrin like candy since high school. I really don't think it is very effective and feel like I should stop, if nothing else than to save my organs.
Prilosec 20mg: No surprise here, my stomach has been giving me issues. This was started last month and seems uneffective. We may be moving to something different.
Ambien 10mg: The doc suggested this both to help me sleep through the pain and possibly to loosen my jaw during the night. In the beginning it knocked me out but not that well any longer.
Hydrocodone as needed: My doc had to talk me into this and i'm glad she did. Unfortunately I am taking it more, some weeks most days at least once in a 24hr period. With all these meds you would think I wouldn't need to but I do. Sometimes it seems to help, other times it just makes me sleepy. This really seems to depend on how often I take it as it looses it's effectiveness.
The fact my pain is bilateral, constant, and opiates help (even a little) makes my think this is type 2. The bilateral factor is what makes me fear being pushed into a psychosomatic type diagnosis. I had never heard of the so-called AFP until coming to this site. How the docs can just push it off as that kinda blows my mind. My pain is so very real and has been my constant companion (growing stronger) for many years. I hope and pray for an authentic diagnosis soon. I desperately need help. If nothing else, my GP is very convinced and supportive in the TN diagnosis; i'm so thankful to have her.
Laura - I'm at the start of my career as well and understand what you're going through! As for getting through work, sometimes I'll have a flare up and it's extremely tough. I filed FMLA paperwork to get the time I needed to have a flexible schedule during flare ups and time off for appointments.
I was on Tegretol for awhile and could barely function. I was actually so drowsy I fell down my stairs and wound up with a separate injury. While Tegretol did make me want to fall asleep at my desk, I powered through with lattes and going to sleep before most toddlers. Quality of life = heck no!
Lately what has been working is going to the office super early. Sometimes when I can concentrate things aren't as bad. Also, my triggers are laughing and smiling (I currently can't do this without pain), so after a the hours of interactions with co-workers and clients, I'm completely burning/stinging and finish up the day from home.
Oh, and the neurologist recommended occipital nerve blocks which i'll hopefully be getting in the coming weeks.
Has you Neurologist done A EMG on you ? I had a MRI and that didn't show any thing. Then my Doctor sent me to a Doctor who found out where the pain is coming from. I would suggest that you have a EMG.
It's almost sleepy time for me so just wanted to pop in and say Hi and I'm a new comer and new to TN as well just being generally diagnosed last week. The exact type I have is still up in the air.
Everyone is different, we all have different professions, doctors etc. So I will just say with my condition thus far and the meds I have to have in order to even get out of bed...I wouldn't feel safe driving much less talking 90% of my day. Talking is my job. So, my wonderfully understanding GP has gotten me Short Term Dis. through my work but let me tell ya I have to do SO much work making sure with getting all the docs to the right person, to sign, in triplicate, fax, confirm the fax, etc. and so forth; that I am so tired by the time all that is done, I am useless.
I can't imagine long term disability but, it's been almost 2 months since my pain started, so I am thinking about that too. How can we not? We just got diagnosed with this. As a professional, I'm sure you are asking the "what next" questions with your career as am I.
When I experience more, I will let you know! And, I'm sleepy right now so please beg pardon for not giving more useful detail.
Rockhopper, given how recent your diagnosis and treatment are, it's possible you will find that the brain fog eases after your body gets acclimated to your medications. That happens for some patients. Meantime, recommend you take a look at the Face Pain Info tab on our top level menus. There is a lot of information there.
At least there is a master index in the paper... {:-) Feel free to get back to us through the comment box on that page, in this thread, or elsewhere...