First off I'm nervous. I'm scared and my new medication is making my emotions all wacky. I'm crying at everything. The underlying pain has made me so sensitive. This pain is new to me. I feel a bit overwhelmed at the changes that it can have in my life. The ones that it has had already. The pain is shocking and overwhelming my meds have made me a fuzz head. So I apologize for this disjointed post, though I feel you all will cut me some slack. :D. I just started on the chewable carbamazepine (nice mouth numbing action) baclofen combo with demi percocets. I feel like a mushy puddle of stupid. I don't need to tell any of you how strange the adjustment is. I'm so tired all the time. I guess I'm still in the angsty why me stage. Whyyyyyyyyy. Hopefully this all settles in. Unbelievable pain. Feeling pretty low right now.
(((((((((((((HUGS)))))))))))) We all know how you feel. You will jump between grief, being positive, being sad, being angry, etc.... I am up to 1200mg carbamazepine a day. It works ok for me at this dose. I still work full-time and I am a one-woman office! I AM very tired a lot, so coffee or 5 hr energy drinks are my friend, LOL. I will be praying for you. You can do this! And if it gets to the point where meds don't help or you are TOO foggy and can't function on meds, then talk surgery to the neurosurgeon. xxoo Donna
I am currently in the same situation as you,newly diagnosed and extremely confused,frightened,angry and over whelmed. Im taking 400mg Tegretol a day which is just holding me. So far just needing panadol and nurofen between doses,but feel it getting worse each day.Im having a brain MRI tomorrow to rule out other causes of my pain. But my doctor and myself are 100% sure its TN. I have kids at home ranging from 4-20 and work three days a week as a nurse and all I can think is "What if I cant function to care for my family an patients" Funny how we react. I also take 60mg Cymbalta for depression and Im finding the meds are messing with this a bit and im very irritable and teary also. So dont feel alone!! I feel for you and understand your frustrations. Feel free to chat to me or message me on here if you need to vent xox
Emrsnx & Tubby,
I know it’s a difficult time being newly diagnosed, be gentle with yourselves.
The meds need time to build up in your system before they really start to work. Most often you’ll find that the side effects you initially feel will diminish with time.
Tegretol (carbamazepine) is usually most helpful between 600 mg to 800.mg
At 800mg of the slow release version of Tegretol, I was pain free and able to live and work normally. Nobody knew I had TN. Regular Tegretol didn’t work well for me.
Although its hard you have to give the med time to work and always ask your doctor for instructions on how to increase your dose safely should your pain increase.
Many people with TN experience remissions too! Anywhere from a few days to years!
I was lucky in that my bilateral TN went into remission 9 months after it started. I had an 8 yr remission on my right side, and 10 yr remission on my left!!!
It happens!
In the meantime try and avoid triggers, use heat or cold to help minimize the pain. Rest, rest and take care of you.
And read as much as you can about TN,most of us need to advocate for ourselves as many medical professionals’ knowledge of TN is limited.
(( hugs )) Mimi
My experience thus far has been very similar - everyone should buy stock in Kleenex because I feel like I am keeping them in business. I feel for you!
I must say, discovering this website a few days ago has already been a big help. Friends and family are trying to understand but it's hard to convey accurately just what this pain and these drugs are doing to me. Nice to find people who understand.
Best of luck in the upcoming weeks and months! xo
I'm with you, honey. The pain is incredible, and the few moments in the day that are pain free the meds leave you feeling dizzy and useless and exhausted. I was feeling for a while there like I'd lost my life, but the last couple of days I've noticed the pain lessening and my body adjusting to the meds, and as I feel less exhausted by everything, I'm able to find a bit of optimism back for the future. Hang in there, this too will pass.