Reaching out for support and advice!

Hello! I was just recently diagnosed with TN and although I am relieved to know what is causing all of my pain, im not as relieved to know it will never go away. I have been chewed up and spit out by this monstor of a disorder. I am a mother of a 6 year old and a 2 month old. I work full time and attend college fulltime. Up until 2 months ago my life ws normal and I was making steps to improve it. Then 3 days after my tooth extraction my world was flipped upside down. After several dr and er visits I was finally diagnosed with TN. My pain stays mainly in my lower jaw, cheek, and in front of my ear. My face burns 24/7 with about 100 episodes a day of a shooting pain. I can hardly function to be the mother I once was, my job is suffering and my school. My husband is worried about me but im getting to the point where I try not to talk about the pain becuase its there everyday and im sure he is tired of hearing about it. On top of all of this its not like anyone understands. I live this isolated world where I suffer from a pain so bad that Ican not put it into words. I just need some encouragment that my life is still livable. I also could use some medicine advice. Right now im on steroids, carbamazepine, and hydrocodone for my pain. I received the hydros from the er and im hoping my family dr will write me a prescription for them for they are the only way I can perform my job as a manager of a hotel where I have to talk all day long. Is pain medication something most drs will allow you to take long term. I dont need them when im at home because i just refrain from talking or eating but at work I have no option. Sorry I know this is long im just lost in this disease that noone around me understands!

Hey Heather,

First of all I'd like to welcome you to the group and to just say that we're all here for you, that and never apologise or feel like long messages or "pointless" venting is bad! Do it! I never even thought I had an issue with my TN and after a while I've found myself just venting away and writing all sorts of stuff on here, it's helped me a lot!

I'm so sorry that you find yourself in such a difficult position. I'd like to draw you on my experience and say that it hasn't particularly stopped me from doing anything. It's been difficult, but I'm quite well known for being the guy that goes everywhere, does everything and jumps at any chance to do something new! It helps to be honest with everyone, I don't complain but I make sure they know, every now and then, that it hurts, it's not easy and sometimes if I did go somewhere that it wasn't easy!

I don't know much about the pain medication, however here in England they're up for constantly prescribing me most things. I have a decent neurologist and I think that's one of the most important things. It took me 4 years, mind you, but with patience, understanding and so on, you can get there in the end.

I hope that, if anything, you find some of the comfort that you need from this site, knowing that so many people here know somewhat what you're going through and most of all that we're here for you, me especially. If ever you need someone to vent to, go for it!

Lots of love,


HI! I'm new here too, but not new to the pain or what you're feeling. I had a ceiling fan fall on me and damage the middle trigeminal nerve. Finding a dr. that knew about it, and getting the correct meds for me was huge. Once I got that under a bit of control, I got online and started searching for a dr. or program that would maybe help me more long term. My search took me to UCLA and a local neurologist that manages me. Don't give up. I know that right now I am about the best I will ever be, and even then they say the longest is 7yrs. I have 8 children, the oldest almost 30 and my youngest 8. So I have kids at all ages and stages and it is very frustrating not to be able to do what I think I should be able to. I too quit saying much to my dh as good and supportive he is, I too know he gets tired of hearing it, even though he doesn't say so. This has been my experience. hth. blessings~~

I was exactly where you are at three weeks ago. In fact when I saw the neurosurgeon I begged him to schedule surgery. I cried everyday. I went to work sometimes, but just shut my door, came home and went to bed! I have been in meds now for three weeks, and am actually beginning to emerge from my pain coma. I even cooked this weekend… Something I haven’t done in weeks. I even went to a dance recital today…after taking extra lunch dose of meds , and wearing an ear plug in my bad ear… But I made it! Which I never thought I would. I started on the gabapentin at first,with Percocet every three hours too…lots of pain. Neurosurgeon switched me to tegretol… And I have been increasing the dosage weekly. Also I have found that if I take a Xanax with the tegretol it alleviates the background headaches. I have had only one stab attack since I switched and and feeling optimistic. If you are not getting better… Demand to be heard and get your meds checked or switched!!! You really have to advocate for yourself because no one who hasn’t had this could imagine the pain involved! I had a really tough time being heard…I was denied a visit to the neurosurgeon and I wen there in person and plead my case… And cried and tried to explain my pain, I got in! I will pray for you , and your family, I could not imagine trying to care for children that young, I have two teenagers, and I honestly checked out on them for three weeks. Can you get a friend to help! It will get better, but you may have to push to be heard!

Thank you for your kind words. This has taken a huge emotional stress on me. I am always the strong one in my household who keeps going no matter how rough it is. My husband was just diagnosed with bipolar so I am trying to be strong for him so he can get well mentally. I am so glad a found a place where people know how it feels to be in this pain and still tried to maintain their normalcy. Due to my husbands condition it makes it rough to express how I am really feeling on some day.

It was the two last molars in the back of my mouth right before the wisdom tooth. I think mine actually happened either during my gum scraping( I had bad gums after my last pregnancy) or when I got the shots for numbness. It reacted in the opposite side of my face then where the work was done. It was just a general dentist, I am at loss to this happening. I went to the dentist to prevent pain and end up with this awful thing :(

Hi Heather!

First of all let me give you lots of (((hugs)))! I am new here too, and I can't tell you what a relief it is to talk to people who understand.

Jeeesh, you sure do have a lot on your plate!!!I dont know how I would get through this if my children were younger (I am a single mom of three, but my youngest is 10) I admire your strength and your commitment to your husband, kids and career!

I have been struggling with TN, the meds for TN and other neurological issues for mainly a year now. For me personally it has meant that I have had to re-prioritize my life. This has included that I will be changing my job to one that is less stressful and sadly (very sadly) I have put off going back to school because I feel like my meds situation is just not stable enough. I cannot imagine trying to study and pay attention right now.

Mostly I am sad about my limitations (although I am encouraged and inspired to hear that Will hasn't let it stop him doing anything!) But also I very much accept that right now that's where I am at.
I hope to get things better under control, I am praying for a remission and I will handle things as they come.

I hope you find the support and strength that you need to take care of your loved ones and to take care of YOURSELF. Please don't be afraid to not be a super hero all the time!

Best wishes and I hope things get better for you,


I have no idea what he used....I just know that 3 days after I left his office my face started hurting and didnt stop. I havent seen an oral surgeon. I have no health insurance so my simple extraction was suppose to be my gift to myself to ensure I have teeth 10 years from now. Instead I ended up with this and no money to maintain it. My dr said that the dentist didnt cause it but could have triggered it.

My story is similar -- Had 2 extractions in back and part of jaw bone sawed off--- when I woke up from the 2nd procedure - after the meds wore off - I RAN to the ER. Of course I had the most highly successful Oral surgeon who did this - TN can be caused by whiplash - much jerking of the neck --- I have had several people rear end me over the years -- so he just finished me off - when I woke up - he got me out of there fast, assisistant was having no color in her face - and there was blood all over my arm -- like it was all done in haste.

BUT -- good news - to stay on less meds -- I had MVD by the best surgeon out of state -- and use lidocaine cream and patches to take care of breakthru pain.

Keep Posting! Learn all you can here!

AND There might be a support group in your area, or one of us, look at the members map and the support group area.

I had 3 fillings and my gums scraped on the 27th of feb. Went back on the 28th and had 2 extractions and the rest of my gums scraped and a cleaning. After the last appt I never felt right again and it just went downhill from there. When my husband called the dentist freaking out and told them they did something to me because I was crying everyday they told him to hold for a sec to look at my chart, said to take ibuprofen and I was no longer welcome as a patient....

I didn't put 2& 2 together until I did weeks and weeks of research on here, at and reading Striking Back book.

Oral Surgeon's office shrugged me off --- called the only dental lawyer here - and he said - unless you can prove it, he will make you look looney like he did my last client -- case closed.

Been hard to forgive because of his greed he is well known on the internet to pull as many teeth as he can in haste

I don't think there is a price he could pay me for what its worth.