Hi all I'm new to this forum. What a great place for information. I'm trying to connect with someone who has TN2 supraorbital neuralgia. I was diagnosed with this last year and it has been a long ride ever since.
Thanks
Tim
2 years haven’t heard that…put it in search box above…just like you typed it!
Things have gotten much better for me over the last couple of months. I still however am looking for someone that was diagnosed or have some of the the same symptoms.
Dull burning pain in the V1 trigeminal nerve that is in the forehead and around the eyebrow.
(Only 4% of TN patients are diagnosed with supraorbital)
Thanks
Tim
Hi Tim,
I'm not quite sure what supraorbital neuralgia consists of but I have burning pain in the forehead, temples and eyebrow area, to the point where I couldn't even frown or move my eyebrows because of how bad the pain was. Luckily meds have worked well in this area and I now only have bilateral V2 pain. Do you feel like your burning and sensitivity extends to your scalp too or do you ever get any stabbing head aches? Glad to hear you are doing much better :)
Is it in Google Images anywhere? Does it have another name here?
Kc here is a link. There is a very limited information on it on the web because it is so rare. The symptoms started out with the feeling of a grain of sand in my eye which lasted for about five months to mind numbing pain in the orbital notch. It was concluded that the supraorbital nerve was the cause of the feeling of something being in the eye. I had gamma knife surgery which actually made it much worse. Not because of the gamma knife but because of the Halo that irritated the nerve to the extreme. After several months I was hospitalized for my own good. As we know some people here handle things mentally and physically in different ways. I have been on Gabapentin and using litacain patches and it has kept everything pretty much under control. I do on occasions get the shock like pains two places in my gums and behind the left ear but not very frequent and the duration are short. I'm actually back at work after six months.
Like everyone else on here this has been a life changing even that I couldn't even imagine happening. Hell I had never even heard of neuralgia before this.
Let me know Kc if you need any more information.
Tamzee my pain is pretty much localized to the orbital notch. Eyebrow, eyelid, nose on my right side. I don't get any headaches. Well there pain in the head just not a headache type pain. Gabapentin and litocain patches have worked wonders.
tamzee said:
Hi Tim,
I'm not quite sure what supraorbital neuralgia consists of but I have burning pain in the forehead, temples and eyebrow area, to the point where I couldn't even frown or move my eyebrows because of how bad the pain was. Luckily meds have worked well in this area and I now only have bilateral V2 pain. Do you feel like your burning and sensitivity extends to your scalp too or do you ever get any stabbing head aches? Glad to hear you are doing much better :)
Tim,
I was wondering how you are doing?
I have TN2 and think I may also have supraorbital neuralgia also. I have tried everything except surgery. Blocks used to work, but now they increase my headaches. I had a glycerin rhyzotomy a few weeks ago for TN2, because NS wanted to start conservatively. (I do not fit any profile - maybe due to SON and Ehlers Danlos Hypermobility).
Any insight you can offer will be greatly appreciated.
Thanks,
Trish
Well, you just found a person...me! I have ATN over my eyebrows and on the bridge of my nose. I experience constant burning. I have had this horror of a disease for three years now. I fought for a year to be diagnosed correctly. I have been to hell and I hope to be coming back. My pain was sort of controlled with Gabapentin, though my doctor kept trying dozens of different drugs to help the pain. After two years, all of the medicines stopped working. I barely survived six months of extreme and unending pain. Every week it got so bad that I had to go to the hospital clinic and be treated with IV meds to bring the pain down.
Last June I made it through a successful MVD surgery. The pain did not go away, but the severity has notched down a bit. I have only been on IV's every 6 weeks or so since my surgery. I am going in on Wednesday to begin the process of getting a peripheral nerve stimulator. I have done a lot of research and it appears that I have a pretty good chance of real pain relief...finally.
I am so glad to see that there is someone like me out there. We are a rare breed. I would love to correspond with you. Maybe we can help each other. I would love to hear your story. Good luck! Lora (lsromney@centurylink.net)