Hi All!
I have ATN in the V1 region which gives me constant, horrible, burning headaches on my forehead and down my nose. For the past week or two my eyes have been aching terribly. This is a new symptom for me. Does anyone experience this aching? Just making sure that it is TN related or if it could be something else. Thanks everyone!
Pain perceived "behind" the eye is a frequent symptom of both ATN and classic TN. Are the other elements of your pain also bilateral? In any event, I'd suggest letting your primary care provider's office know what you're experiencing.
Regards Red
Yes, I have bilateral pain. It started as left-sided, but it has moved to both. It seems like I am having much more sinus (nose) pain and pressure than I ever have had too. The pain is not really behind my eyes. It feels like my eyes are really strained and light sensitive. Unfortunately none of the meds I am on seeming to be helping much with any of my symptoms. I am on Carbamazapine and Gabapentin. I am back on these two after EVERYTHING else has failed. At least I am sleeping through the nights. My application for a PNS will go in to my new insurance company this week. I have fought two other companies (job changes) over the past year. I pray this time I will get an approval. Have you seen people with ATN pain on the nose and eyes get relief in these areas? Even if I can decrease the forehead pain it will be worth it.
My wife has a mixture of typical and atypical TN on both sides. She's been successful in getting control of the pain with Neurontin, but it's at a 1-3 level "in the background" many days. I've heard from others also.
Regards, Red
Yes, Yes to all of the above. My eyes easily feel strained, and I get the 'behind' pain, too, all of it bilateral. I can no longer read, knit or any other repetitive eye behaviour (practicing knittin without looking now, he he). I cannot use backlit screens, so I got an e-reader for my browsing necessities. Sunlight and other sharp lightis also a problem. Thankfully, I can still wear contacts. Myforehead can indeed be very triggered, I have thissensation that it has to do with the eyes. I have tried a number of meds, but nothing touches the eye thing, sadly. Cannot help you much, but happy to not be alone (sorry for you, tho). this eye thing appars to be less frequent.
The eye thing is really a disability. I am only 36, and I am starting to dread what's to come. But I am thankful for podcasts, audiobooks and phones! Who needs books and movies with those :)
Tineline - My doctor decided to try a round of Prednisone to see if that may help a bit. I will let you know how it goes. I have heard of migraine glasses that help with eye sensitivity. I may check into those if this continues. I am pretty sure that the eye issues are TN. I was miserable on Sunday, but yesterday I was OK. Now today I am back to miserable. Ahhh....glad to know that I am not alone. I have had this stupid disease since I was 41. I sometimes get feeling really sorry for myself since I am still young (45). I get overwhelmed thinking that I could be fighting this for 40 more years! But, just think of all of the medical advancements that have happened over the past 40 years. There just has to be something that will work for us. In the meantime I am pushing forward and trying to get a peripheral nerve stimulator approval. My insurance request went in yesterday! This is the third insurance company (due to job changes) that I will be fighting to get this. Third time's a charm, right?
Absolutely! Didn't see your reply until now - because of eye issues, he he. I am very interested to hear about your prednisoe results, and I am rooting for you with the PNS. That is my ultimate goal. For now, trigger management helps my eyes, but the triggers are many. Glad that this world still has off scrren media, and not to mention people, in it.
I cannot wear glasses anymore, not even my own prescription ones, so I will give the migrain glasses a miss. But everything is there to be tried. If theyhelp you I will look tomigraine contacts.
Meanwhile, one of my triggers is sharp/strong light, especially the blue light in screens. I use a software for my computer that filters this - you might want to try it. Mine is called f.lux. I also quite enjoy ice on the eyes if they are particularly strained. And in the evening, eyes closed and audiobboks is a great way to relax for me. I hope you can find some relief, and please share if you do. :-)
Ànd all the spelling errors are because of the way I have to write on this bloody e-reader. But at least I can eat, brush my teeth and sleep flat without pain. :-)
I know this is an older thread, but I read it with interest, as I have had a 'sinus/nose/forehead/cheek bone' headache for more than a week. It hurts constantly and nothing touches the pain. I went to my GP yesterday, thinking perhaps I have a sinus infection, but he said it is not, and thinks it is midfacial segment pain,another neurological disease. I asked him if he didn't think this could be just my ATN moving up higher than it normally does, but he said those places are not really on the TN nerve branch. Now that I read your responses, I think he is misinformed. I appreciate knowing others have these same symptoms and perhaps this is just more of the same - but in a different location. It definitely gives me something to work with. I appreciate all of you who share your experiences, so others can benefit and learn from them.
I suffered with all of this last winter as well. Truly is hell on earth. Ginny, I would say your dr is not well informed for sure. My lastest flare up of ATN is mimicking a sinus infection complete with a sore throat and tonsil pain. I do believe that some of those symptoms are related more to Glossopharyngeal Neuralgia but it seems that many of us have pain that crosses over into multiple cranial nerves. My symptoms have gotten better since I restarted my medication last week. TN mimics so many other things. It drives me bonkers trying to keep up all of these hideous, invisible and down right strange symptoms.
Just as an update. I will be going in for a peripheral nerve stimulator trial in January to try and help the pain. I am hoping to have the leads positioned right over my pain source and to be able to get some relief. After I posted my doctor started me on a prednisone pack. Since then the aching pain in my eyes has decreased immensely.
Ginny D., get a new doctor that understands physiology. There are three branches to the trigeminal nerve. One being the V1 branch which is the forehead, nose and cheekbones.
Thank you to those that replied and have given me renewed hope that this is not another new disease, waiting to take me down. but more of the same ATN symptoms. I am hoping it is a flareup that will soon settle down. Seems justjane maybe has given me a clue, as mine seems to have coincided with being outdoors in the cold, while walking my dog. It could be a LONG winter here in Canada, if this is any indication of how the cold may affect my ATN. Thanks all, for your continued support and wisdom regarding this very challenging and difficult disease. It really helps knowing I am not alone.
I am in Canada too ginny. An hour east of Toronto. Winters are terrible for me...the last two anyway. Already afraid of what's to come this year. Things are ramping up. Weather is a huge trigger for me. Storms and overcast days bring pain. My other big triggers are my cycle and stress. New symptoms can bring so much anxiety. Every time something is wrong-- teeth, eye, Ear, nose, tongue, throat-- it ends up being Tn. Always get anything new or worrying checked out though.
My TN started as a toothache, but that's NOTHING compared to the pain around my right eye! Sometimes it feels like a clamp on it or that my eyeball is in a vise. I can't take any of the anti-convulsants. Tried amitryptalene and it is working but I still have occasional days where it hurts so bad that I have to call in sick because I can't do anything but lay in bed with an icepack on my eye. Sometimes my migraine medicine, Imitrex, helps, but sometimes it doesn't. I take Percocet for pain cause by a herniated disk at C4, but I don't think it helps the face/eye pain a bit. I've noticed that when the barometric pressure drops, I have a bad day. Trying to keep my stress at a minimum, but as a legal assistant and handling a family member's estate, that's nearly impossible. My tongue often bothers me, too -- burning. I've tried several bottles of Nystatin swish-n-spit to no avail. I'm getting a brain MRI on Dec. 23 -- hopefully that'll show something, or at least rule out tumors or lesions. TN stinks, that's for sure!
Mine progressed and wrapped itself around my eye. I questioned whether it was TN too but it finally started with zaps now and then instead of just deep searing pain. I had a Ryhzotomy to numb it and it keeps most of the pain at bay. Hope it gets better for you.
Hey! I definitely have eye pain on my right side as well. That’s what really made me push the process along to see the neurologist. I was afraid of going blind but neither my GP or my neurologist seem concerned at this point so …
If it’s just TN it shouldn’t make you blind.
Cindylou, I have it affect the right side of my tongue as well and the pallet and into my throat. I think that is Glosopharengial Neuralgia. It’s all treated pretty much the same way. Decompression, meds. It makes sense that if your prone to compressions in one area others could be affected as well. So far Im able to manage. Hope your having a better day!