No longer in remission

Hi everyone, I have suffered from sinus infections and sinuses, allergies etc including bronchitis and pneumonia. In Jan 2010, I had sinus surgery, I’ve had some dental work, root canals, one bridge and cavity fillings. In 2015, I was diagnosed with TN. I kept going to my dentist who took many xrays, checked my teeth, removed bridge & replaced it and found that there was nothing wrong with my teeth. He suggested I go to my primary dr because he suspected TN and needed a referral to a neurologist. That was 2015. Prior to 2010, I had oral surgery in 1997, where they removed supernumerary teeth. Two baby teeth that never grew. I read somewhere that dental work, surgeries or even sinus surgery could be what causes TN in the long run. About 2014, I almost went through the TMJ surgery, canceled because I was afraid of the procedure. Between 2015 and last year up to October I had sporadic pain lasting sometimes from days to s couple of days. The pain was sudden and lasted seconds but felt like an eternity. Late 2016, I had s new bridge put on and told the dr about my TN I was feeling the tingling sensation that you get minor pain and the anxiety that I knew I was going to get it. She told me if I had any problems or pain to tell her. She numbed me pretty good and let me tell you I did not have any pain or symptoms for approx 11 months. In remission for a long time. By October 2018, I felt I’ll got sick after the flu shot prior to that my ears kept getting blocked. My cold last four weeks, then a cough, by late October I was in pain with TN the worst pain I’ve ever been. Excruciating psin. I was on oatmeal, mashed potatoes and soft foods. I eventually went to see my dr gave me carbamazepine (tegretol) 100mg, 2x a day. My sinuses were still plugged, ears, no sense of smell, or taste. By Xmas eve I took Sudafed and started to feel so much better along with the carbamazepine. Thinking it was related to my sinuses which I think it’s still related, I got off carbamazepine cold turkey, by dec 26, I was crying in my bed in excruciating pain. The pain cane back 100 times stronger. Needless to say, I’ve been out of remission and feel hopeless because I haven’t had TN this long (3monyhs already) consistently, everyday. The worst part I’ve had to up on my dose and now I take 300mg a day because it is true the meds start wearing off. To this date I’m still fighting a sinus I infection hit antibiotics and hopefully I get rid of it. I’m hoping for a miracle that it is related to my sinuses but for now, I have to continue taking more meds until I see the neurologist and even then I don’t know if he will recommend the MVD which I ultimately want. I don’t want to go the rest of my life incapacitated per say, I am unable to live my life like a normal person, I can’t eat, chew, slurp, touch my face, wash my face, talk, have a conversation with someone without holding my cheek or making funny faces when I talk. I’m normally a very active person so unable to work our is making me very depressed let alone keeping myself away from my family, friends and people I would like to socialize with. It’s pretty sad. I hate this disorder and not sure why I got it. They say it’s nerve damage but I always wonder why? What about people that play contact sports, boxing, football etc and I get nerve damage? I’ve also read it’s lack of vitamin B6,2,12 thiamine so I started on Vitamin B injections and take s tone of vitamin bs and lecithin but I think the damage has been done unfortunately :cry: I’m hoping to hear from some of you. Is it sinuses, sinus surgery, dental work, lack of vitamins? Etc… I’m willing to try anything that’s his bad this pain is. I literally sit at the table and try to eat cream of wheat, oatmeal with difficulty. Very frustrating. I don’t have as many headaches as some of you. I do have the facial pain, scalp, nose, cheeks etc. my TN pain travels from my head to my lower jaw/teeth. Unbearable. I’ve tried heating pads and I’m about to try tooth ache medication. I’m wondering if the numbing from the last time I went to the dentist helped with being in remission. Anyway, hopefully Someone can shed some light.

This is going to sound crazy, but try ice packs. I think it has something to do with the numbing sensation of cold that ends up helping in some cases. I love my gel cold pack for flares.

Try a lidocaine patch. In the USA and Canada you can get some at the drug store under the name SalonPas. I cut the patch into strips and place the strip along the nerve branch that’s firing. For me it’s been a miracle.

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You should at least try Charlotte Web
CBD oil. It works well for my TN2 but not for TN1 in my case so far.

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Thank you! I will definitely try the Sal on pas. I have heard of them but never thought of using them for my TN.

Thank you! I actually went on a website for medical marijuana and thought if it worked for the little baby with seizures I think it should work on my TN and they named it after the baby Charlottes Webb. Thank you so much I will definitely look into this as well. I wrote down the doctors closest to me that would give me a medical marijuana card.