I am so happy to find a place where someone may really uderstand this TN pain. My Dr. is wonderful and my husband is compassionate and a great "nurse", but I really need someone who has been there. I am taking way too much medicine for relief right now. I hate that my liver is getting loaded with this stuff. On medication I feel like I am walking on pillows...unstable and unable to think straight. I am not leading a normal, fun mom summer vacation life with my kids now. Thank goodness my last 2 kids at home are 16, a boy lacking compassion right now and a daughter turning 13 on the 4th of July, that has lots compassion but little understanding of course. My visiting 23 yr old son, still disrespectful somewhat, does not help the stressload here.

What frustrates me most is that sress is what brings on the TN. Notice I said, THE and not MINE. I refuse to own this thing! But the fact that I cannot control my brain enough to stay away from TN is maddening. Sounds like a vicious circle.

I have one friend who has had this horrible affliction and I called her for prayer last evening. She is wonderful, but also suffers severe MS. She understands the pain but also has so much to deal with, with the MS that I don't feel like dumping on her.

Sometimes I just cry in frustration and in pain. I am not a crier. I cry hard.

Has anyone had face swolling with TN? This is new, but so is some of the meds I am on. Thanks for reading. Tricia

My thoughts and hope for better are with you both Ladies xx

Do you have a pain management or TN support group in your area? I do NOT know what I would have done without this site and the other one - The face pain association --- -- but together - these sites led me to my surgeon and a boatload of supporters!

When I was on a moderate dose of Trileptal -- I had to drop out of life for a year -- my kids are older too

- brand new hubby - nobody knew what to do with me --- I dropped like 50 IQ points and was trying to go on job interviews (because TN made me leave my job at Children's Services - blessing in disguise)

It's like addiction -- except one day at a time does not suffice --- it's one 10 MIN at a time --- have you ever tried RX lidocaine patches for topical relief?

I had them before and a little bit after MVD --- I will keep a stash of them till old age -- Just In Case ! I did not learn about them from DOC - it was here!

Hi Tricia,

I'm a mom too, and understand just how you feel. My TN was the result of the rough treatment of an endodontist who cannot be held responsible for his actions. I know he didn't do it on purpose, but as a result of his treatment, I have been Suffering since 2008, almost daily. I am resentful, angry and filled with fury toward him every time the pain gets unmanageable, until I remember that isn't going to to help me or punish him. Like they say in The Sopranos, "he's dead to me" lol. I had to eventually own this thing and come to terms that it will probably never heal, get fixed, disappear overnight, etc. It's here, I'm here, and it is my constant companion, whether I like it or not. I do everything I can to supress it, but in the end it controls my life and hate that.

I read a post of a couple men who despite their pain go out, ride bikes, participate in outdoor sports, and bravely forge ahead. I can't do that. My focus is getting though 5 days of work a week, doing laundry on the weekend and buying some food, and not much else is possible.

I'm definitely not saying to you that this is how it will be for you; maybe what I'm saying is to fight against what it's done to me, and claim your life in a way I can't.

And to your question, yes my face does swell in extreme circumstances of pain. I think I also grind my teeth at night because of the pain, and a wet, warm washcloth was the only thing that gets me through the night sometimes. And a lot of alcohol too, because my meds don't address half the pain I have. My whole jaw area gets swollen and my hand is permanently to my face, covering the nerve area.

Try not to cry - only because it makes it hurt more. When I cry my sinuses get inflamed and the pain goes nuts.

- Colleen

hang in there. I am also a mom of two children 8 and 10 an I stopped all my meds for the past 5 years. My episodes were only coming once a month or so and they were short lived. I can't stand the fuzzy feeling meds give me and couldn't handle life while medicated.

Unfortunately Friday night I started a monstrous cycle with episodes happening in a 15 minute pattern for 3 days. I ended up in the ER as getting into a neurologist is damn near impossible. I am now back on meds and unable to function or drive. My poor husband is home with me while I readjust to my meds and my kids went to visit Grandma as I don't want them to witness my altered state.

I'll pray for you


You all with kids have much strength! I have no kids and can hardly function! Between working full time and all the meds I’m on I feel like the walking dead most days! I can’t even imagine if I have children has I feel like Incan hardly take care of my self! My face on te pain side gets swollen around the jaw line. Where I feel most of the pressure after the sharp attacks! I don’t know if that helps
I know better said than done but stay strong

Wow, I signed off then seen this, and I felt like we all are joined at the hip. I too don't have children and don't' know how you all do it. But I also had to come to terms and accept the TN/CH. Just like we don't have control over the blood running through our veins we don't have control over this nerve in our brain either. I also agree that crying makes it worst even through you have to let out the hurt that is deep in your heart on why does this have to happen to me. This is why I live one moment to the next moment because I really can't plan anything. But in ending this, I will not question why any longer because just what we've been sharing if I am going through this thing we call TN to help one other person get through it then I am o.k with it. I am so happy I can share my pain, thoughts and prayers with you all. Thank you TNNME