Hi everyone. I am sorry that all of you are going through this terrible pain. I am really frustrated. I saw my Neurologist on Thurs and my MRI came back normal. He thought I had ATN but now that the MRI isn't showing anything and my pain is in my forehead, teeth and ear that he doesn't think it is that. He says TN affects the cheek not the forehead and ear and it mostly occurs in elderly people. My grandmother had it ( the doctor called it Tic Deloreux and she would jerk her head when she had an attack) I have a lot of the same illnesses she had like hypothyroidism, asthma, fibromyalgia and arthritis. I have read on here that some people only have it in their forehead and most people on here are in their 20's,30's, 40's and 50's. Can you have a normal MRI and still have it? Should I try and get a second opinion? He thinks it is my Wegener's Granulomatosis causing the pain. It did initially but the pain has never stopped after five years. My symptoms are a constant burning pain with stabbing pain and electric shock type pain that comes and goes. My ear pain is always worse in the evening and nighttime. I have a fullness feeling in my ear and it feels like there is a knife in it sometimes when the pain is so bad.
I have all of the symptoms of geniculate neuralgia when I read about it on the internet. I was so happy to have found a name to my symptoms. That is exactly how I described my ear pain to my doctor's before ever reading about it.
I tried Tegretol first when I first saw him and got a terrible rash from it and lots of other bad side effects so I had to come off of it. Then he put me on Lyrica and it really helped the pain in my forehead and teeth but just helped a lttle bit with my ear. It made me so spaced out and confused and I gained a lot of weight on it ( I didn't eat more while I was on it and I gained weight) and a lot of other side effects. So I had to come off of it. So he put me on Nortrypiline. It is helping me to fall asleep so I am not up all night with this excrutiating pain. It is helping my ear pain a little bit and helps the nerve pain in my legs. It helps the forehead pain from getting really bad where it used to be around an eight. Any feedback would be greatly appreciated. Thank you, Jennifer
Hi Jennifer, I'm not an expert but having read people's posts on this and other websites I'd think it is possible to have ATN elsewhere than just your cheek and the pain doesn't necessarily come in just one form, it can vary quite a bit. I have pain that doesn't move around and is located in two of my teeth and half of the chin and two neurologist told me it looks like ATN (when I gave them an account of what preceded the pain and described the nature of my pain). Having said that it's always good to rule out other possible causes of your pain, so if your doctor suspects it could be something else other than TN then I would ask to have tests done for that illness if that's possible. As to your question if you should seek 2nd opinion - well, if I were you I would; I'm just not sure if your doctor is experienced enough with ATN and it's usually better not to rely on the judgement of just 1 doctor. To give you an example - one of my friends has Crohn disease and at his last check-up there were 3 doctors present and they couldn't came up with a consensus on what they saw for quite a while:)
I think the med you are taking is a good one for the burning pain you have. I take amitriptyline for mine. For my ear pain and shock pain I take Trileptal. It sounds like your doctor is on the right track. :) But a second opinion never hurts..
I have TN and my MRI was just fine also. I have so much pain in my temple like someone is pushing a wood punch into it and not letting it go, along with the burning and scalping feeling that I have in my forehead and hair line. I have found that when the pain is extremely bad that I turn off all the noises in my life and just find a comfortable spot and look into a area that is all black. It has to be all black or I sit and wonder why the flaws are there and this doen't help me slow the blood pressure down. I have found when I slow my active and blood pressure down that the pain relief comes alittle quicker.
I had never heard of this aweful condition till a year ago and it is amazing how quickly this thing can change a life. I am always taking note on what helps and what makes it worse because I am determined to not let it change my life.
Absolutely you can have ATN /Type II even if the pain is not in the cheek area. Just think, you now know more about that subject than your neuro! Get him to take a look here and learn maybe???? I wish you all the best.
Just to echo Jackie, you most definitely can have ATN/Type II without pain in the cheek. Mine mostly initiated in the temple area and spread across my forehead and down the side of my face, spreading further on bad days and not so much on "good" days. Also, my MRI came back clean.
Yet, I ended up in a neurosurgeon's office and he recommended that I consider the MVD procedure anyway. I did pursue it, he performed it, and he found a compression that would likely have never shown up on a MRI, due to its location/size, etc. Yet, he said with every heartbeat, he could see the vessel "slapping" against the nerve, and now I'm on the road to recovery and hopefully never have to face the full brunt of this condition again.
Also, I'm 35. My understanding is that TN type 1 does mostly affect older individuals, although Type II does not have a "mostly" about it; it affects different people of different ages differently.
So, my point is: I think your doctor is likely lumping his knowledge of Type I and Type II together, and may not be knowledgeable enough about the condition in general.
Learn all you can about the different things that trigger the severe pain. I have breath taking pain when I go into the cold, which in the winter that means going outside and in the summer that means going into the air conditioning. So I now wear a scarf to work and out on date night with my husband. This way when it gets bad I can cover that side of my face and bring the pain level down and get a little relief. I now understand why my doctor calls it the 75 year old unexplained face desiese and he is so awesome that he continues to learn more about it also and makes calls to me every once in a while to see how I am doing. That is a stand up doctor that cares about his patients. He is even open to hearing about what I have learned and ready what I have wrote in my journal that will help.
When I firt got the TN symptoms, it was on on the tip of my nose, then on my forehead, if the wind moved one strand of hair, I would get a stab. Then it moved to the side of my nose when I touched it, and eventually to my jaw. The pain was unbearable when I took a shower, brushed my teeth or just wash my face. I didn't know what it was until I did a reasearch on line for the symptoms I was getting and found out that it was TN, my doctor prescribed Trileptal and whithing two months, it was gone, then back in November the next year for about 2 months or so and this year I got it since April and it moves up and down but on the forhead only if I touch two parts of my face at the same time withou medication, sometimes on my upper gums, other times on the lower jaw, although it is always right in the middle of my lower lip (24/7), even after I take 300 trileptal, 20 mg baclofen and 7.5-100 hydrocodon. The MRI looks good, going for a second opinion this Monday. I still don't know if it's ATN of just TN, really.
Does anyone get it so bad that they are not tired but the best relief to close the left eye and just listen to what is going on to help bring the stress level down on the left check,ear, eye, forehead. lip, etc on the left side. That is all I want to do about 8 hours a day cause it hurts so bad and then the warmth or burning in that area just keeps growing.
Learn all you can about the different things that trigger the severe pain. I have breath taking pain when I go into the cold, which in the winter that means going outside and in the summer that means going into the air conditioning. So I now wear a scarf to work and out on date night with my husband. This way when it gets bad I can cover that side of my face and bring the pain level down and get a little relief. I now understand why my doctor calls it the 75 year old unexplained face desiese and he is so awesome that he continues to learn more about it also and makes calls to me every once in a while to see how I am doing. That is a stand up doctor that cares about his patients. He is even open to hearing about what I have learned and ready what I have wrote in my journal that will help.
Dr. James Lukasky is my MD and Dr. Naylie is my neuroligist He is a traveling doctor from New York and comes to Branson every 3 to 4 months. Both of these doctors are very awesome and very compasianate.
I have found the meds just make my ear pain like I am under water and at least it isn't sharp. The biggest thing I have found to help with the pain at night and get a good night sleep is to cover my face on the left side. I was wearing a ski mask that was made with fleece and wearing it side ways so it would cover my whole left side. Then my sister in Texas found me a thing called puff I think and it isn't as thick as the fleece but it keeps my face warm and the rest of me is not hot. I gotta say that is the best sleep I have had since I was diagnoised with this. I hate meds and wont take sleeping meds so this is a great alternative to that.
Dr. James Lukasky is my MD and Dr. Naylie is my neuroligist He is a traveling doctor from New York and comes to Branson every 3 to 4 months. Both of these doctors are very awesome and very compasianate.