I get and aching or acidic type pain in my teeth. Behind the eye, in my ear and in my neck. This is unilateral. I also have tinnitus that kicks up when the ear pain does. Stimulants make all these worse. I also have facial and scalp muscle spasms. My pain sucks, but it doesn’t sound exactly like what you guys describe. My Neurologist says I have ATN. However everything I read says you usually have a constant migraine type pain with that. Is does anyone have any thing they can tell me? Should I get a second opinion. Is my Neuro wrong?
Zach,
I also have ATN and my pain is similar to yours although I don't have migraines. My pain is generally behind my eye, under my cheekbone and along the bottom of my jaw. I went for years thinking I had a sinus infection because of the pressure in my face. I would get antibiotics and I'd feel better in a week. Once diagnosed with TN I discovered that when I had an episode of pain it would always last ten days. I have no idea why.
Thankfully I usually only have days worth of pain a few times a year but, recently I've had pain off and on, especially when I lie down at night to go to sleep. I am currently in the middle of one of my ten day episodes in which the pain is constant. I can't eat anything cold on the right side of my mouth as the bottom tooth in the back is extremely sensitive and screams in pain if something cold touches it. That's new. Usually my pain is more like throbbing or like someone is hammering my face with a mallet. I often hold my face because it feels like my bones are as fragile as broken glass and if I don't hold onto it, the bones will all spill out. Sometimes it helps to massage my face.
That's all to say that I think your Neurologist probably has it right. Symptoms can vary considerably from person to person. Did your Dr. prescribe any medication for pain and/or anti-seizure medication? I hope you find the answers you're looking for from other posters to this forum. As I said, you'll find a lot of differences in types of pain as well as treatments.
Best.
Karen
Klonopin is the only thing that has ever helped and I have tried just about everything including tryciclics. He has gotten good results with acupuncture from a Dr. of Chinese medicine he refers to. I’m gonna give that 6 or so sessions, if that doesn’t work then on to the Narcotics and at this point the pain is getting to the point that I don’t care of have any shame about having to go on them. Hope you get through your spell quickly.
Zach
I don't think your neuro is wrong. It transpires that I've had ATN for 20 odd years but it was wrongly diagnosed because what I had for most of those years was a deep numbness in the right side of my face that came and stayed for weeks or months and then left. Over and over again. It was diagnosed as a form of painless migraine that compressed the nerves in the face.
Fast forward two years ago and it came back as the shocks and stabs but currently has settled back to mostly painful numbness ( if that makes sense) with periods of aching.
I had to dig deep to find any literature about ATN and the way it acts differently to TN1. It doesn't always act the same or even effect the same nerves. Listen to your neuro.
Thanks Catwoman. That makes me feel more on the right track. What meds have worked for you over the years.
Hi Zach,
I agree with the above posters-sounds like ATN to me. Most with Type 2 TN do not get shocks. And the locations of your pain are ones that many of us share. In my experience ATNers do not generally have constant migraine type pain.
I have teeth, tongue, jaw, cheek, ear and neck pain. Bilateral now. I have had a lot of success with Amtriptyline. If you look under the Facial Pain Info at the top you can find a list of medications used for Type 2 TN.
I hope you are able to find some relief and feel free to ask anything!
Jane
Thank you Jane, everything I have found to this point is all about TN 1. You two are actually the first other than me I have found that exclusively have ATN. I will check out the meds list. I have already called my neuro and asked to try Amtriptyline. I don’t feel I’ve given the tryciclics their proper chance.
There are lots of people on here with ATN. There is group for it under the groups tab. And all of us are very different with our locations and types of pain.
The tricyclics do take some time to start working. You need to start on a low dose and increase slowly. I have found that a dose needs between two and four weeks to really kick in. That is why I always increase very slowly so that I know what dosage is working.
Hi Zach. My doctor has me on Tegretol although that does diddly squat for the numbness. Who knows though, perhaps it's keeping the shocks at bay because I have had those in the past plus all the other symptoms of TN1. As I said but, it took me ages to find out anything about it. Good luck.
So I am ahead of the game then since I have a diagnosis. It really stinks because I’ve tried a lot of meds and most made my tinnitus worse. Klonopin is the only on that’s helped but is no longer doing what it did. Due to the neck pain it is radiating down my arm right now and I get tingling in my hand. I feel like I am on the verge of a panic attack and might have to head to the ER if the muscle spasms do not stop on the left side of my head. Picking up a script for Amitripline tomorrow, but I’m so afraid to take it because Nortript made me sick. I just feel lost at this point.
Zach,
Ahead of the game and TN, that's not usually two things you find in the same sentence!! At least it didn't take you twenty years! I thought the Tegretol was going to kill me at first I was that dizzy. Upped the dose after a while and I was dozing off as I was getting out of chairs!! Both times it took about 3 weeks to adapt. Hang in there, it sounds as if your neuro is a smart cookie. Let him guide you and stay strong.
I have an appointment with my neurologist today (one appointment a year). My main questions for him are how much I can increase the dosage of my Lamotrigine and Grabapentin without overdosing or resulting in serious side effects. Yesterday I took 900 mg of Grabapentin over an 8 hour period. After the third pill, I got up out of bed and had a tough time keeping my balance. I actually fell into the wall.
I also want to ask him to prescribe me a muscle relaxant. After long periods of time with constant pain my muscles in my neck, shoulders and back just seize up and hurt. He already has me on Tylenol with codeine which does nothing for my pain. I want to switch the two.
I luckily see mine at least every 10 weeks. He requires it. I called today and asked for narcotics, he has offered before. I have tried all the AED’s accept Carbazapine. However I tried Ox-Carbazapine and could not tolerate it. Neurontin just made the ear pain worse. I am having problems even drinking water and my teeth are in constant aching pain w constant tinnitus. I just can’t take much more. Idk how you.guys live with.this stuff for 20/years with no relief. At least I don’t have kids and can just rest. I know a lot of people say exercise, but that makes me so much worse. Low on hope right now. I also have anxiety attacks as well. I’m tired of listening to myself complain, so I’m gonna stop this post right here.
I've had both TN1 and TN2 but mine started as facial numbness. The TN1 symptoms or the "shocks" have only came and went for brief periods of time but the TN2 seems to continue on and on. In the beginning they diagnosed me with severe migraines, then corneal issues with facial pain, then atypical facial pain, then finally trigeminal neuralgia. The symptoms are different with everyone and you may not have them all. At first my facial pain would start as numbness, then pain and swelling. It would come on go. Unfortunately, now it just stays and feels like someone is constantly crushing my cheek, ear, jaw, and throat. I keep searching for meds that will help but they only help me for brief periods of time. I am glad you got a diagnosis early so perhaps the meds will help you. I will keep you in prayers as I do all of us!
Zach,
This is the one place that you can complain! We all understand what you are going through. It is frightening, exhausting and isolating to be in chronic pain. I have terrible anxiety too when I am suffering with the pain. Who wouldn't! Anxiety, stress and lack of sleep can exacerbate your symptoms and pain levels. They are my worst triggers. I think being aware of that is something.
It does sound like you have a good neuro. That and the fact that you are diagnosed do give you a head start. Keep trying with the meds--Amitriptyline is helpful to many of us. Sometimes the side effects are too much to handle. But sometimes the side effects greatly decrease after three or so weeks, once your body gets used to it.
And if any narcotics help than use them. At least for a break and to give the other med some time to work. Some people also need two medications to work together.
Jane
Zach Walraven said:
I luckily see mine at least every 10 weeks. He requires it. I called today and asked for narcotics, he has offered before. I have tried all the AED's accept Carbazapine. However I tried Ox-Carbazapine and could not tolerate it. Neurontin just made the ear pain worse. I am having problems even drinking water and my teeth are in constant aching pain w constant tinnitus. I just can't take much more. Idk how you.guys live with.this stuff for 20/years with no relief. At least I don't have kids and can just rest. I know a lot of people say exercise, but that makes me so much worse. Low on hope right now. I also have anxiety attacks as well. I'm tired of listening to myself complain, so I'm gonna stop this post right here.