I have been lurking on here for the past few days & wanted to say hi. To make a long story short (for now) I started with TN i think back in Dec 2000. Went to dentists, the family dr & finally ended up at a neurologist. I remember my first zinger ( thats my word for the pain) started after biting into a toasted bagel.
Up until this past Sunday I have been pain free & on no meds for at least 4 1/2 years, could be a bit longer. I am devastated this has crept back into my life. I am seeing my beloved neurologist next Fri & am assuming he will put me back on Carbatrol. I am currently under alot of stress & am now on antiobiotics for the next 3 weeks for a stupid sinus infection. I keep questioning if this is why its back??
I am trying to not get too overcome by fear but as we all know it is not easy. I keep saying to myself, just get back on your meds & things will be fine. I just wish I could actually make myself believe it....
Thanks for listening
Stress and viruses do seem to be associated with pain triggers and sometimes recurrence, Disney (an interesting name for someone who uses the British naming for Tegretol or Carbamazepine). What did you and your neurologist do to push your TN into remission four years ago?
Welcome to the group. Well, a positive way to look at it... You were in "remission" for 4 1/2 years! WOW! That's SUPER!!
Stress and infection?
You're in our hearts and thoughts. Keep on here to get lots of support. I've found it!
Red, honestly the only thing my neurologist really did was putting me on Carbatrol ( i dont remember the dosage). So I am praying this will work again
Sara, thanks for your kind words.
Hi Disney Girl
I, too am new to this forum. I, too, refer to some of the pain that I get as "zingers". I have a question for you. Are you sure that you do have a sinus infection? I have been treated for the last 3 1/2 half years for "frequent" sinus infections due to the pain in my face and eye, and now I am convinced that it was the TN all along. Before you take a truck load of abx that you don't need like I did, i strongly recommend that you evaluate your sinus infection symptoms to make sure that is what is really going on. 3 different docs treated me for "sinus" before my rheumatologist told me I had TN.
I am sorry that you are having to experience this again. The fact that you had 4 1/2 years without it is a good sign IMO. Hang in there.
DG, how long did you take the meds for before the pain went away the first time? Hoping it works just as efficiently for you again, if needed x
Carolynlvsbrds, nice to meet you :) Believe me I sometimes ask myself if it is actually my sinues. At this point I really think it is my sinuses because about 2 months ago I was sick with post nasel drip & a double ear infection :(. I was on antiobiotics for about 10 days, felt better but within a week and a half was really sick. I saw my family doctor on thur. & she said I probably wasnt on the meds long enough to clear the infection & then caught a bad cold on top of it. God also blessed me with a cold sore ( which I only get when Im sick)
Elstep, Honestly I am assuming a few years. Its funny I found my old notebook which I used to write about my pain in ( when it first started) I became obsessed with it. When I started seeing my neurologist he suggested I stop obsessing & start enjoying life. I know I would take the carbatrol for a while & when I was pain free I'd try & stop. I know I had to re-start it a few times. Last Sun. it started when I was brushing my teeth, I got the usual zinger & I freeked. I had one zinger every nite trying to eat dinner. Lets just say I lost some weight this week cause I fear just overcame me & I was so so scared to eat. Fri & today I have had a few more but I am trying to remain calm.
Because I was without pain I have no meds & have not seen my neuro in years. I am seeing him this Fri. I would like to think the meds should work again considering I have been off them for so long. I can say that since this started again my tmj is acting up cause I know I am clenching which I am sure is not good for the TN :(
Well its easy for me to be calm & strong when Im on here but on the inside not so much. I am trying to have faith that it will get under control again & get better. I will not accept any other option then feeling better. My mom passed away 2 years ago (she was one of the only people who could keep me calm with my TN, I know we have all read worse case senarios on line) & I keep saying I have my own personal angel who will help me get thru this & will make everything better.
Thinking of you all & wishing for pain free days for all!