Hello to anyone who might read this. I’m Katie, I was diagnosed with TN on September 24. I’m sure my situation is similar to many people here. I woke up one day thinking I had a tooth problem. My right jaw had a dull constant ache. Saw my dentist, X-rays came back normal. He suggested I make an appointment with my doc, that I might have an ear infection. The next day pain spread into my ear and up to the right side of my head. At times it was a dull pain with occasional intense stabbing. The doctor (fortunately) recognized the symptoms and diagnosed me immediately. I was prescribed Tegretol and sent home. It helped somewhat for a day. The next day I was in constant intense pain I was on the verge of suicide. I went to the ER and was admitted. The physician told me it was the worst case he’d seen in his 35 years of practice. Go big I guess… I had nerve block injections. Several doses of morphine didn’t work and they switched to hydromorphine. It happened within a week. Today I’m mostly pain free but being weaned off prednisone I’m having some quick pain attacks. The only trigger seems to be chewing. The emotional toll has been the most difficult, coping with the suicidal thoughts and trying to be positive is difficult. I’m 26 I’ve always been active and have been in the Army for almost three years now. I’m worried my career will be over. I do have a wonderful husband and I try to always remember that first.
Hi Katie, warm welcome to LwTN…although I’m sorry for your recent diagnosis. Glad you found us, support from people who experience TN/facial pain and truly understand has been very helpful to me.
Tegretol takes awhile to build up in your system, you need to slowly increase the dosing under doctors instruction for a period of weeks to find your therapeutic dose. Many find relief within 24-48 hours after the first dose however the pain breaks through until the right dose for you is reached.
Please make sure you give Tegretol a fair chance, I always encourage 4-6 weeks based on my own personal experience, unless you are having an allergic reaction.
Side effects are common initially, but do settle down for the most part when the dosage is low.
If Tegretol doesn’t work, there are many other medications to try.
Please know that MANY people with TN are able to live and function normally once pain is managed.
I was 29 when first diagnosed…I understand your concerns, please don’t look to far ahead…focus on pain management thats most important right now.
Also keep in mind that remissions do happen! I had an 8 year remission on my right side and 10 year remission on my left.
At 800mg Tegretol CR I was able to keep my pain under control and live a full life, work, volunteer, wife mother, be active etc
Although we all share similarities no two cases are alike, so what works fir one, doesn’t always work for another.
But we learn from each other and do our best to cope, it helps to come here and lean on one another…please don’t hesitate to call a suicide prevention line if you’re struggling emotionally. We have numbers listed on the right hand side of the page.
Have you seen a neurologist yet or had an MRI?
Hope you get your pain under control soon, you’re not alone.
(( hugs )) Mimi
Mimi, I am responding to your kind response to Katie. I am 70 years old and was recently diagnosed. I am frightened. I live alone and will probably move closer to one of my children. I am not currently in pain but my chin and lower lip are numb and have been since last week. I know your response was to Katie but it was so kind that I am taking it for myself as well. Thank you.
Hi, Katie, I truly hope that you have been able to see some relief from your pain in the last weeks. I am so sorry that you hurst so badly. Remember that every person here has experiences something similar and you are not alone. You can always find support, advice and friendship here. If you are ever in so much pain that you can't stand it, please go to the ER. You have a legit, incredibly painful condition...NEVER be ashamed of seeking help for it. I suggest that you also get a good counselor because dealing with a new chronic disease is hard. There is a grieving process that we all go through that can be difficult to manage on our own. My counselor helped me a great deal and I am so much better able to manage this new life of mine. I wish you more good days than bad days and hope you have a bright, peaceful day today. :-)
Hi KatS. I was 29 when I was diagnosed and there many other young members here. I remember so well how frightening and isolating it was in those early days. I was back and forth to the dentist, dr, hospital and specialists trying to figure out what was going on. And in dire pain 24/7. I sat in a dental chair and begged the dentist to pull out a tooth. You are so fortunate ( I know you don't feel that way right now! ) that you were diagnosed so quickly. And thank goodness the dentist knew what was happening.
I am glad that you have found some relief but it is not surprising that the pain is returning. TN can really come and go and move around. Every day can be different. And what Mimi said about Tegretol taking time to kick in is true. It can take two to four weeks plus you might need to increase your dosage before it starts helping. Also Tegretol is not the only drug that can help. There are others to try if that one does not work.
I have had TN on and off now for ten years. And there is light at the end of the tunnel for a lot of us. I am a mom and I work full time. I have had pretty good success with medication and I have a Dr that is amazing. You need to take a deep breath and just focus on the now. You will get through this. It will take some time to find relief but you probably will find a med that helps. You need to be kind to yourself right now and allow yourself the time and energy to get through this. Stress, anxiety and lack of sleep REALLY contribute and make TN worse. I know it is easier said then done when you are in so much pain but you really need to get some rest and try to remain calm.
We are all here for you. Ask anything at all and keep us updated on your experience.
Oh and if you don't already--you need an MRI and to find a neurologist with experience with TN, which is not easy but they are out there!
What a helpful and encouraging post. Thank you.
Hello Katie,
Sorry you have had to join our ranks. You sound very similar to my TN2/ATN pain. People look at me funny when I tell them the left side of my face has hurt since the second Tuesday in November 2014. I am 25 and in the last 10 months I have spent 4 months in undiagnosed agony, barely sleeping 4 hours a night on near-dangerous amounts of narcotics and OTC pain killers. After diagnosis my drug side effects included, memory loss, Increased Depression and Suicidal thoughts (I wanted to die more, shortly after getting on Lyrica and being mostly pain controlled, than when I was in full pain, weird right!) and extreme vertigo and nausea. Needless to say 2014-15 rank very high on my list of terrible years. I had to come to the decision to quit my job and move to the city with my parents so i could find better doctors than in the small town where I was.
From someone who spent months imagining driving over steep drop offs, and staring at the Vicodin bottle wondering if I should down all 20+ pills, please find some way to keep going. My main reason for living became my family and friends. I imagined how my mother would collapse in tears if she heard the news and how finding me dead would mess up my roommate for a long time. How my best friend would no longer have someone to tell about her work stories and guys she is crushing on. I literally lived for the well being of other people, because I felt all my hopes and dreams were gone and all that was left in my life was this pain. If I couldn't take away my own pain I could at least keep others from hurting too.
During a very depressive weekend when I couldn't get out of bed, and I wanted nothing more than to escape the never ending pain, I called my mom in tears and told her "I want to die, what do I do?" She told me to DO NOTHING! because she loved me and we both cried for a while. She smartly looked up the side effects of Lyrica and found that Depression and increased suicidal thoughts were common side effects (it is also a side effect of chronic severe pain.) I had to stop taking it and by the end of the week my doc put me on antidepressants and I found a councilor. It still took 5 more months to get my pain under control.
Eventually I was put on Nortyptiline,which is an anti depressant AND blocks ATN pain, I am not pain free, but I am "pain low." The dual nature of the drug has left me feeling the best I have in almost a year. I highly recommend it!
I wish you all the luck in the world! and hold you loved ones close. they need you even if you are dying inside and slowly going crazy from the pain (not saying you are, but I certainly was). Remember there are wonderful people on this site ready to offer support, and advice. My heart goes out to you, stay strong!
-Erika
Katie, I wanted to welcome you too. I want to echo what Mimi and Grumpycat both said. Tegretol takes time to build up and find your correct doseage. Don't give up!!!!! When I was first dignosed, I made several trips to the ER looking for relief. it is okay to do this. Please do.
Grumpycat is right on about one more thing. I have struggled with this conditions for 4 years now. I had a 3 year remission inbetween episodes. I WISH I would have found a good therapist for dealing with chronic pain from the get go. I did not. I am just now doing this. Pain leads to feelings of helplessness and depression. But more importantly, we know that chronic pain rewires your brain. You can experience phantom pain as well. You can experience all kinds of effects on your body that are terrifying and it is a result of your body trying to protect itself. You also can be like me.......I live my whole life anticipating the next episode and trying to protect myself. It has put my body into a state of constant fight or flight adrenline rush existence. That creates insomnia, anxiety, and all kinds of other health issues - one being hypertension. Be proactive in this area. I really, really wish I would have.
This is a great place for support and to feel like you are not alone. That last part has been the scariest for me. Feeling alone. You may never meet a person who has had TN in real life because it is a fairly rare condition. And most people cannot understand because you look fine, that you are not fine. I did meet someone with TN and it as an amazing experience to meet someone who just "got me." But that is what you have here... a community of people who get it.