It's back!

I am so thankful for this website. My ATN has been under control with Neurontin for 8 weeks. All of a sudden, I am having 24/7 boring aching burning pain in the left side of my jaw and face again. I tried upping my dose...and got nausea and vertigo. Now I am taking advil and percocet and Neurontin every 4 hours along with a heating pad as o

ften as possible. I go to my GP today and will ask for Lyrica and Lidocaine patches!
I am making stupid mistakes at work. Mistakes I rarely made before...happen daily. It is humbling and embarrassing. Thank God I have a very patient and understanding supervisor. I promised her if it continues I will voluntarily leave!

My husband informed me this morning that I am now "moaning and groaning" all night in my sleep. I guess I will sleep in the guest room now so he can get some rest. Bless his heart. he has been so supportive.

I just feel terribly depressed today. Thanksgiving is coming. I don't want to stop the tradition of cooking the big meal for my loving family but if I do...I will be no company for them. My heart aches. I want my life back! It is setting in...this is for the rest of my life. How will I cope? I don't want to become a blob on the couch but my energy and positive attitude are truly being drained and tested.

Noone understands like you guys. I feel like a whiner to everyone but you!!!!! Thank you for being here. For having (unfortunately) true understanding of what this condition is like.

I pray you all have a wonderful Thanksgiving and we can all remember the things we still have to be thankful for.


hi yvonne, i am so sorry about all of your pain and your emotions and your situation. i was you and still am you in some ways. my pain has been past the point of no return for 2 1/2 years. ive had it for 8 years that i can recall the pain starting. it became relentless in 2010. i worked 40 + hrs a week as a PSW for the Redcross. my clients noticed how bad it was getting before i did. they could see my face and kept asking if i was okay because i was making pain faces and allways covering my face and turning off fans etc.. thats before i knew what was wrong with me. i waas being told for 6 years i was just depressed. i gradually decreased my hours every 2 weeks hoping i could keep working and that it would get better. because i care for a lot of elderly and i could barely take care of my self i finally had to go on sick leave. then eventually over the next 2 years it became evident that i wasnt going back any time soon and i had to go on disibility. a very hard thing for me to accept. so now i am" the thing on the couch" as you put it and the only time i can even be the thing on the couch is when im all drugged up as my pain is not controllable with any meds for TN. you said it so perfectly it could have been me writing your words. i always was the one to have the big get togethers and cook a huge meal. now im either up in my bedroom with the door closed and the bathroom fan on for white noise so my family can act normal and not cause me pain with their normal everyday noise. i have put on so much weight in the past couple months because i have been eating so much food being nervous about my MVD coming up next tues 27. i went through all of the different phases all ready when something like this happens to a person. right now i am at the acceptance phase, its not an easy one and i struggle with it. i break down crying as i write about it. i dont like it, i dont like it one bit that i have had to give up so much of myself and my life. i am learning how to find enjoyment in the simpler things in life. i think of my grandma often because she was a very simple lady. i dont mean mentally, i mean she lived a simple and very comfortable life. she took joy in all the things in life that people forget about when they get busy working and raising kids etc... well TN forces you to live life differently and appreciate the things we forgot about, we have no choice but to slow down. man i hated it so much in the beginning and its not that i still dont hate it but learning to accept it helps so much with the pain, and the sadness. its very hard to go through life being sad or angry all the time. its really hard on my family too and i try really hard not to bring them down too. not easy. i havent given up yvonne, even though there are days that i give up on. the next day i start all over again dealing with what i have for that day. my house is messier than i normally keep it and i cant make meals everyday, but when i do feel good i really enjoy those times as much as possible. i have hope for the future that i will have more pain free days in my life and maybe even completely pain free but for now it is what it is. i hope your journey is better. everyone is different so please dont pannick from my story. i think i would have handled it better though if i knew of the possibilities of what i might have to endure. one thing though that i find is very important is to look after your mental health and the sooner the better. TN plays a tole on you emotionally and in turn makes your TN worse. i have a lady from Canadian Mental Health come and visit and talk with me twice a weel right now but once a week in the beginning or when ever i needed it. shes wonderful in so many ways. she has access to programs or things i would never think of and i can tell her absolutely everything im feeling. my family still gets my sadness sometimes which is enevitable but it helps releive some of the pressure off them. my husband goes to a course for families with a chronic illness to help him cope better. we cant let this monster TN take down the family too. any way, hang in there yvonne and i hope you have good doctors who are knowledgeable about TN. if not, get one and fast. its important to stay on top of it. its sounds like yours is really bad already so youve got to get help fast. i always waited too long because im stubborn and hate asking for help but there is no room for pride with this beast. i am here to support you. please dont hesitate to look me up if you want to chat. take care. jacqueline


Thank you for your honest sharing! My doctor keeps telling me...,"one day soon it will go away. It does that with most people."

I know that is not true and it just makes me want to say, "Yeah, right." I hope this MVD helps you be able to do some of the things you love. Let me know how it goes!


Yvonne, Maybe your doc can add something to the neurontin to help, give it a lil' kick?? I hope you have a good Turkey Day. Min