I saw a new dr today who obv. doesnt know a thing..or am i loosing my mind? he told me that tn can go into remission forever, and going for surgery would be the last thing to do and wouldn't recommend it bc its invasive. I was told to stay on my amitriptyline but he wasnt happen i was on vicoden so added prozac to help with my pain? I live in Florida and im from NY, everywhere i go down here no one can answer my questions correctly and now i see why im so confused. I cant keep fighting this. I went to this DR bc of my mad blurry vision and red eyes on top of the TN and he said eyes look great but go see an eye dr. All i wanna see is my bed. HOw many people and gonna make me think my life is over and im gonna live on meds, i refuse unless i for some reason cant have the surgery or i do and it doesnt work. Im literally letting all my emotions out from the past year and i cant stop crying. All i can think is why did this happen> what did i do? i know silly and i shouldn't feel sorry but im plain scared and life is now all maybes. I hope moving back to NY will help because im at my breaking point. The only support i have is my mother. I still have more work to do on my mouth (caps) but im so closeto being done i cant wait. Ill have the perfect smile for a life where i may have nothing to smile about. I dont want pity, i just want others to understand and let me talk about my fears. Its scary when no one knows whats wrong with you ( my vision) that comes and goes throught the day ...i just want to feel like theres hope, i know im very depressed and could use some people to talk to and cheer me up...i wont give up because i cant...but feel its already beaten me :(
have you thought about the skull base institute in Florida?
Call Johns Hopkins tomorrow I can help you navigate
Listen ALOT of days suck but no matter how terrible (and some are horrible horrible) you need to find 1 positive thing and just latch onto it (check out my blog entries I’ve been and the farthest edges with this TN ,blah)
Are you having shock like pain, or the constant, aching, burning type pain? If you're having shocks, have you tried Tegretol and Trileptal? If you're having the constant aching pain, how much Amitriptyline are you on? I take it and once I got to 100mg/day, it made a HUGE difference in my life. I still have daily pain, but it's nowhere near as severe as it used to be.
Also, if you're still having dental work done, you should take 60mg of Dextromethorphan the day before, day of, and day after the dental procedure. It blocks the NMDA receptors in your brain, which lessens the chance of the procedure inducing a neuropathic pain flare. It's cheap, it comes in pills, and it's an easy preventative.
I've been where you're at, and I know how you feel. I had tried every med and I thought I'd never get any relief. But once I reached the 100mg/day dose of Amitriptyline, it made enough of a difference that my quality of life was greatly improved.
I have both and its getting nothing but worse...i tried those meds and im not allowed to be on any anti ceizyre because i became suicidal and had really bad reactions Ill def talk to my dentist about that bc i need 9 more teeth capped. Also getting scared bc of my vision going
Amitriptyline is not an anti-seizure med, it's a tricyclic anti-depressant that happens to be really good for fighting pain.
Good luck with everything. When I'm in a really down state, I try not to think about the future and take it one day at a time. If you think too much of the future, things get too overwhelming.
Aww Jen, I am so sorry. Getting back to NY sounds like an excellent choice. Family and some of the best docs in the nation. You broke my heart when you were talking about the beautiful smile you hope to have and nothing to smile about. I used to smile more as well. I try to make a conscious effort to smile but lately I bite more than smile. It's hard on the family, some more than others and I hate myself later. There is hope sweetie...trial and error is a scary thing with TN sufferers but it's the way this affliction goes. Keep this community close and gobble up all the info you can get. It's like armor when you get to seeing doctors. I hope to hear that you're finding help. Be sweet to yourself today...PeacenLove Always~Laurel
One, you did nothing. It just happened. Two, I fear the maybes will get you. Try to keep you thoughts into today and deal with tomorrow, tomorrow. Sounds like you are close to getting your dental work done. That is cool, as for the vision check to make sure that your meds could not be the problem. I am on one that causes blurry vision. There is hope. The Trigmeinal Neuraliga association is in Florida. Gainsville to be exact, which is about four hours north of you. The University of Florida departments of neurology/neurosurgery are doing amazing work in TN and I would suggest that you check them out. Yes, it is far to travel, but if there is not a doctor in Fort Lauderdale who can help you the trip might be worth it. I grew up in Fort Lauderdale. I am wearing my Uinversity of Florida sweatshirt as I type this. I wish you well, please keep me posted.
I just read your symptoms with the red eyes and vision loss. I’m cure panty living in Memphis, TN and will be relocating to Miami, FL at the end of the month. The neuro that I was seeing here said that my red eyes and vision loss was not due to TN. I never had this problem until I has a root canal due to an accident. I’m now missing five front teeth and I’m in constant pain. I have the needle prick all the time and when it rains or turns cold I have the electrical shocks that are accompanied with major face pulling. I have to have my pain under control before I can have reconstructive surgery. The accident happened 7/6/13. Since 2/17/14 after numerous OS an OS pulled and scraped my maxillary. I thought I was fixed. I have found that if I take 1500mg a day of antibiotics my symptoms/pain is completely gone. I’m looking for a dr to treat me in the Miami/Ft. lauderdale area. Any suggestions would be greatly appreciated.