The "eye thing" is probably due to the TN affecting the ophthalmic branch of the nerve. When I had my first bout with this monster, it only affected one area of my left upper teeth and the roof of my mouth. Weird, atypical pain that the usual meds (tegretal, baclofen, etc) did not help. After 5 years of going from DDS to Dr to ENT to DDS to oral to neuro and back to DDS, with no one being able to find anything causing my pain...my DDS thought it might be TN and sent me to Dr. Jannetta is Pittsburgh. He diagnosed atypical TN affecting the maxillary branch of the trigeminal nerve. After MVD, all my pain was gone for over 9 blissful years! Unfortunately, it came back..to the very same spots it had been before PLUS a stabbing pain in the inner corner of my left eye with a constant pulling, aching hard to describe sensation within & behind my eye. All eye exams are normal, of course. Neurology diagnosed as recurrent atypical TN now affecting both the maxilllary and ophthalmic branches of the nerve. Repeat MVD gave me 9 months of freedom from hell...and then it came back. I had Gamma knife after that but with no results. So now at age 65, instead of enjoying retirement....I merely exist in an isolated life of the hermit. Enough of my qvetching. Take a look at a diagram of the trigeminal nerve and you will see how it emerges from the base of the brain and then comes around the ear and splits into 3 distinctive branches: mandibular, maxillary & ophthalmic. It seems the mandibular and maxillary are the most commonly affected branches.....but it can affect any and all 3 of the branches. You have my utmost sympathy with this indescribably horrific eye pain. Hope you can find something that gives you relief.
Thank you thank you. I'm watching his video over this weekend and most likely will contact him. Nesrin, I read your story. That is horrible. I don't have an exact date of it starting. My long term memory is horrible. From times long before I started all the meds. When we lived in FL I was constantly in the ents office after surgery with 'sinus' pressure and pain especially over my teeth and had even went to a dentist about it and said my teeth were fine it was probably sinus or clenching. Also had tonsils and adenoids out aboutn6 mo after sinus surgery. Around that time I went to an eye dr. For 'pressure' behind my eyes and the feeling something wasn't quite right. I passed my eye exam and he said it was my allergies. All I of this was around 5-6 years ago. The pain has come and gone always attributed to my allergies. In April the pain behind my became constant. I was in my dry office several times. Pain above my teeth was a lot as well. she put me on another round of antibiotics and said she wanted ctscan. Since my ins had such high deductible I wanted to wait. On my bday I called her 5-29 and said the pain was horrible. She asked if it's the worst I've ever felt and I said yes and she said go to the er and make sure they give you a ctscan. They did said my sinuses were normal..they said we have no idea why u are in pain and sent me home. I was ticked. Oh and when in had gone to my dr. Previously I told her about the pain and crying she said I think you are pre menopausal and changed my antidressant. When I called her that day after er she said let's change u back to lexapro. I was really ticked. I told them it's not like that and I was also having this spasm feeling in my face and templish area. I had already tried loratab,which did nothing. Nor regular NSAIDs and am also on diclofenic. I said how about a muscle relaxer. So that did nothing as well. time for 2nd opinion in dr. By that time I have looked up tn or temple tendinitis. He said no and he just knew it was tmj. Gave me an tmj injection. Which did nothing. He told me to live with it and gave me fiorecet. MORE TICKED! So then I remembered my dr. Saying how bout getting your eyes checked. So off to the eye dr. He gave normal eye exam but then tested tracking and had issues. So he ordered prism glasses. They came in and didn't help. He re tested and ordered more prism thicker prism glasses..i could hardly walk. I was done with him. So on the internet I found vision specialist of michigan. I had a bunch of the symptoms. So off to michigan. She dx me with superior oblique palsy. Oh I do also have like overlapped vision and anxiety..which I've figured out now the anxiety is when the pain is bad. This was a 3 day visit. The glass help somewhat...vision feels better with them on than off. Have .70 astigmatism in both, .25 prism right eye, & progressives. The pain continued she said you need more prism and I was like how does this help the pain above my teeth and jaw. She said you probably have something else. So back on the internet. I kept coming back to the tn nerve as that is exactly where my pain is. Back to my gp. I told her all I had did. I said I'm desperate for relief and the pain follows then tn nerve. She said its atfp and put me on gapapentin she wanted a MRI but I wanted to wait... as long as the mends helped. They did but it's short lived..then up it, up it, up it. At 1800 mg she said you've got to go to neuro. The rest you know. The eye thing gets everyone. It's a constant pulling like a rubber and is twisted really tight and pulled back. It's sore to the touch. The meds do help but all seem to just stop then I'm back to really bad pain. Sooooo this is the looong story. I can't find much on eye pain or spasm felling.
Wow. So everything started after sinus surgery? is that right?
Your facial pain , eyes, teeth, lower jaw or upper jaw???
I am thinking you might have gum disease. have you ever checked your gums.
If your gums are infected, you will have facial pain of all kind and very bad headaches.
My mother pulled out all her teeth when she was 48. She had crazy headaches for days and finally a dentist discovered and realized that its her gums. He told my mom that the only way she can get relief is to pull out all her teeth and wear dentures. She was only 48 years old and that dentist to this day is my favorite doctor. She kept my mother alive by getting rid of her pain.
please check your gums by a periodontist if you can
Nesrin
Sent from my iPad
On Jan 26, 2014, at 9:12 AM, “Trigeminal Neuralgia (TN) - Online Support Group” wrote:
ARgirl replied to their discussion “New member need a Dr.” on Trigeminal Neuralgia (TN) - Online Support Group
Thank you thank you. I’m watching his video over this weekend and most likely will contact him. Nesrin, I read your story. That is horrible. I don’t have an exact date of it starting. My long term memory is horrible. From times long before I started all the meds. When we lived in FL I was constantly in the ents office after surgery with ‘sinus’ pressure and pain especially over my teeth and had even went to a dentist about it and said my teeth were fine it was probably sinus or clenching. Also had tonsils and adenoids out aboutn6 mo after sinus surgery. Around that time I went to an eye dr. For ‘pressure’ behind my eyes and the feeling something wasn’t quite right. I passed my eye exam and he said it was my allergies. All I of this was around 5-6 years ago. The pain has come and gone always attributed to my allergies. In April the pain behind my became constant. I was in my dry office several times. Pain above my teeth was a lot as well. she put me on another round of antibiotics and said she wanted ctscan. Since my ins had such high deductible I wanted to wait. On my bday I called her 5-29 and said the pain was horrible. She asked if it’s the worst I’ve ever felt and I said yes and she said go to the er and make sure they give you a ctscan. They did said my sinuses were normal…they said we have no idea why u are in pain and sent me home. I was ticked. Oh and when in had gone to my dr. Previously I told her about the pain and crying she said I think you are pre menopausal and changed my antidressant. When I called her that day after er she said let’s change u back to lexapro. I was really ticked. I told them it’s not like that and I was also having this spasm feeling in my face and templish area. I had already tried loratab,which did nothing. Nor regular NSAIDs and am also on diclofenic. I said how about a muscle relaxer. So that did nothing as well. time for 2nd opinion in dr. By that time I have looked up tn or temple tendinitis. He said no and he just knew it was tmj. Gave me an tmj injection. Which did nothing. He told me to live with it and gave me fiorecet. MORE TICKED! So then I remembered my dr. Saying how bout getting your eyes checked. So off to the eye dr. He gave normal eye exam but then tested tracking and had issues. So he ordered prism glasses. They came in and didn’t help. He re tested and ordered more prism thicker prism glasses…i could hardly walk. I was done with him. So on the internet I found vision specialist of michigan. I had a bunch of the symptoms. So off to michigan. She dx me with superior oblique palsy. Oh I do also have like overlapped vision and anxiety…which I’ve figured out now the anxiety is when the pain is bad. This was a 3 day visit. The glass help somewhat…vision feels better with them on than off. Have .70 astigmatism in both, .25 prism right eye, & progressives. The pain continued she said you need more prism and I was like how does this help the pain above my teeth and jaw. She said you probably have something else. So back on the internet. I kept coming back to the tn nerve as that is exactly where my pain is. Back to my gp. I told her all I had did. I said I’m desperate for relief and the pain follows then tn nerve. She said its atfp and put me on gapapentin she wanted a MRI but I wanted to wait… as long as the mends helped. They did but it’s short lived…then up it, up it, up it. At 1800 mg she said you’ve got to go to neuro. The rest you know. The eye thing gets everyone. It’s a constant pulling like a rubber and is twisted really tight and pulled back. It’s sore to the touch. The meds do help but all seem to just stop then I’m back to really bad pain. Sooooo this is the looong story. I can’t find much on eye pain or spasm felling.
I’ve been to a dentist back in April he said I had basically no decay. I went to him a couple of times for geographic tongue which he thought was thrush. After a month of thrush treatments to no avail. He sent my to my gp and she said it was geographic tongue and gave me magic mouthwash. I still have it and think it’s somehow related as it came when my face got bad. I do have one spot on both sides of top molars that stays irritated. Dentist thought it was from my ecig. Wouldn’t a dentist see gum disease? This dentist has been practicing like 30+ years. I don’t ever have bleeding or really have sons active gums…only the sensation they are. I’m going to research gum disease more. I also had my teeth cleaned.
Any decent hygienist that does teeth cleaning should be able to detect if there is gum disease. And certainly any dentist doing an exam should be able to tell. If you have regular dental care & cleanings, I would highly doubt that you have gum disease. If you review the course of the branches of the trigeminal nerve (especially the maxillary branch) you can easily see why it feels like the teeth/gums/roof of mouth are painful. I also have geographic tongue (as does my 7 year old granddaughter...there's a hereditary component)....but it is totally unrelated to any TN pain that I have.
Not again…yes I’ve looked and looked at the trigeminal nerve diagram. I just really can’t find much info on tn in the eye? The only thing I find is the shocks which I’ve only had one time in the eye. I can tell you for whatever reason the glasses help. When I take them off my eye pulls more and feels lazy. If you still have the eye pain maybe look into prisms. My prism is in the opposite eye. I think it basically makes the left eye work less. When the pain is really bad they don’t help and I have vision problems. If possible try to get out. I try to just ignore the pain I loose the battle often but I refuse to let this take my life away. It’s like a battle of wills.lol. Most people I know don’t even know I have it. I hide it. Only my close family knows. I don’t know where to go now. I don’t know if I need a neurologist or neurosurgeon. I just know I need to find someone that can help me! I have a wonderful family and they are so supportive but there is a loneliness that comes with this pain and fear. But I remind myself I’m not dying. My theory on geographic tongue is it’s a response from pain. It’s just a guess tho. When u were pain free was it as bad?
I strongly urge you to consider coming to St. Louis to consult the neurosurgeons at Barnes Jewish Hospital, a top ten medical center affiliated with the Washington University School of Medicine. My neurosurgeon, Dr. Keith Rich, has extensive experience treating TN, as does his colleague Dr. Joshua Downey. There are five other professors in the Dept. of Neurosurgery who also work with TN patients. Dr. Rich performed the gamma knife procedure once, and I was pain-free and medication-free for five years. Then the pain returned. He did the procedure again, and I was pain-free and medication-free for another five years. Then the pain returned, and gabapentin kept it barely in check for a year. He performed MVD surgery last May, and I am once again pain-free and medication-free.
TN and Atypical Facial Pain are different, but sometimes it's hard to diagnose which is which. The symptoms I reported at first seemed to veer from one to the other.
I cannot say enough good things about the care I received when I had MVD. There is a special Neurosurgery ICU that is a model of excellent medical care. I was there two days, and then transferred to a regular surgery floor (also excellent) for two days, and then went home. The prescription was "do nothing." I was cleared to drive after six weeks, but was still under orders not to lift anything heavier than five pounds, not to work out, and to take it easy. I was pain-free, and slowly cut back gabapentin to nothing. I tended to tire easily, but by the time I was formally "discharged from surgery" after my four-month checkup, I had my energy back.
Do check out the website for the Department of Neurosurgery-Trigeminal Neuralgia at the Washington University School of Medicine. They have a long-standing commitment to TN care.
Thank all of you for all the information. Knowledge is power. I finished watching Dr. Casey's video last night with my husband (he's wonderful through this) and It was helpful, scary and empowering all at the same time. From what I gathered I have some version of TN and it's progressed to basically everything including eye reacting. Now I have to decide on a Dr. I really really like Dr. Casey. I guess my one concern is if it's not TN will he still be able to help me correctly or send me elsewhere. My gut says yes, but want opinions.
I have had geographic tongue all my life...long before the TN began. As I mentioned, my 7 yr old granddaughter has it and we discovered hers when she was only 2. It is a benign condition and there is absolutely no relationship between it and my TN. My eye pain is caused by the ophthalmic branch of the trigeminal nerve being involved. It is no different than people who feel pain in their lower teeth and jaw because the mandibular branch of the nerve is affected. Going outside for me is tricky.... cold air is a huge trigger for me. And what does it matter anyways...I have no where to go and no where that I want to go.
ARgirl said:
Not again..yes I've looked and looked at the trigeminal nerve diagram. I just really can't find much info on tn in the eye? The only thing I find is the shocks which I've only had one time in the eye. I can tell you for whatever reason the glasses help. When I take them off my eye pulls more and feels lazy. If you still have the eye pain maybe look into prisms. My prism is in the opposite eye. I think it basically makes the left eye work less. When the pain is really bad they don't help and I have vision problems. If possible try to get out. I try to just ignore the pain I loose the battle often but I refuse to let this take my life away. It's like a battle of wills.lol. Most people I know don't even know I have it. I hide it. Only my close family knows. I don't know where to go now. I don't know if I need a neurologist or neurosurgeon. I just know I need to find someone that can help me! I have a wonderful family and they are so supportive but there is a loneliness that comes with this pain and fear. But I remind myself I'm not dying. My theory on geographic tongue is it's a response from pain. It's just a guess tho. When u were pain free was it as bad?
Not Again, where do you get the topical cannabis oils? It must have been great to have those 9 years pain free. Too bad it came back.
We are stuck with it! Not Again said:
Wow Kathy! Your story sound similar to mine. I had my first MVD with Dr. Jannetta too...followed by almost 9 blissful years of NO PAIN :) Unfortunatley it came back and a repeat MVD only gave me about 9 months before it came back again. I tried stereotactic radiosurgery (like Gamma knife) but it did nothing but make my forehead numb and screw up my memory. I've tried the entire gamut of meds and none of them seem to relieve my pain and ALL of them gave me horrible side effects..from stomach pains to altered personality to suicidal ideation. I finally decided to give them all up and just stick with pain meds (low dose oxycontin twice/day), which takes the edge off the worst pain and makes it tolerable. Normal for me is to have constant pain of a 3-5 level. I have recently discovered that topical cannabis oil works to decrease the pain I feel in the area of #12 tooth root. I just dab a little on my cheek over the area and it seems to help. I have tried other combo "salves" that have been suggested on this site, but they have not helped me (and they were expensive and NOT covered by insurance). Good luck.
teetat11 said:
ARgirl, very sorry to hear about your condition. I have had ATN for 13 years. I went through everything imaginable.
All medications, nerve blocks and MVD surgery with Dr. Peter Janetta. That helped a little for about 8 months, then came back with a vengeance!
I am now taking a combination of Percocet and oxycontin. It is the best combination so far.
I am reluctant to have the stimulation leads put in. I have also read where some people with ATN are using Medical Marijuana. Also reluctant about trying that.
My pain starts in the middle of my forehead on the left side, and runs down through my neck. On real bad days, it goes to my shoulder.
Eating, sneezing, coughing, wind, sun, stress, pretty much anything starts my pain.
I know two days ahead when we are going to have rain or snow!
It is burning, aching and raw, and I feel like I want to take all my teeth out!! Just like most of us with ATN.
My geographic tongue is totally benign. It doesn't hurt and foods do not affect it. It comes and goes (mostly comes) and moves around to different areas of my tongue and looks really weird. Thankfully, same goes for my granddaughter who is 8 now. And I just found out my daughter has it too....started after she turned 40. Guess there really is a genetic component to it. From what I read, only about 1 in 10 people have discomfort with it. So sorry you are one. We should be so lucky buying a lottery ticket, eh ;) Are you sure it it not some other form of glossitis (tongue inflammation)? http://www.webmd.com/oral-health/guide/geographic-tongue