I think I found someone with my problem!!
 

Wow!! My pain started March 05 as well. Wasn't March 1st was it?? I have the same symptoms you are describing in both my eyes. When it's really bad it feels like I have a sizzling feeling along my lower lash line. Sometimes it feels like my eye is going to pop. It varies day to day. I had an MRI but it showed nothing. I would say if you are shown to have an artery touching the trigeminal nerve you may have more hope! Maybe surgery is a possiblility for you (though a scary one). I'm on cymbalta, tramadol, gabapentin, and lorazepam for my pain. I also have to lay down every afternoon. I'd like to um 'friend' you if that's a possiblility here (I'm new too). Your symptoms and what you've been through is all too familiar to me.

can I have that link please?

mylastnerve-contact please
 

Hi, I'd like to contact you to see how your pain progressed and see if you were ever diagnosed? If you get this can you try to contact me? I'm not sure how these forums work as I am new...but my symptoms are like yours.

It appears I'm a bit late finding this discussion, so hopefully people are still reading this?

Basically, I'm trying to self-diagnose myself as my doctors aren't really getting anywhere. After a lot of reading around, I think 'Atypical TN' is probably the cause of my symptoms. I note most of you seem to have more typical/classical TN, so I'm hoping someone will recognise my symptoms?

It's a long story, so I'll try and make it as brief as possible...

Basically, I started getting sever pain in both eyes in about October 2010. The pain was constant. It quickly worsened; by November 2010 I was house-bound as I couldn't open my eyes for the level of pain, and by Dec not only had pain in my cheek bones, but I'd also lost complete sensation in other parts of my face. Around this time I was put onto Gabapentin/Neurontin which had little effect on my eyes, but did help the facial problems. However, I was still left with the main problems:

Sever constant pain in my eyes and a firework display in my head. I my eyesight was unaffected, but it was just too painful to open my eyes.

I had to keep my eyes closed 24/7 and had to wear a sleeping patch all the time to stop any light getting in. I had this constant pain even with the patch on, but even to let 2 seconds worth of light in would take the pain up even another level (and 2 seconds of light could make this worse for up to 48hrs after).

The Neurontin dose was gradually increased up to 3600mg a day. After several months at this level the firework display in my head disappeared and I could take the eye mask off for about 10mins a day, but that was it. It simply appeared that my eyes could withstand any input, like it was just overloading my brain.

Anyway, I saw a further specialist who also prescribed Amitriptyline. After a while this started to actually have some positive effects. The sharp pain I experienced from looking at closer objects gradually subsided. It's also partly masked other symptoms. I have now been taking all the above for nearly 4 years and I seem to have plateuxed.

I can now cope with natural light and light from incandesant light bulbs (non-flickering). I do get a sharp pain from bright light, but can counter this with dark glasses. But I do still have some level of pain all the time.

However, I still have a violent reaction to fluorescent light and TV and computer screens (light with a high flicker rate). It is more of a burning sensation and an automatic reaction to shut my eyes (like neat shampoo in your eyes - you try to open them but you can't) - just from looking in the direction of a screen (my friend is typing this as I speak it). I cannot enter shops or offices because of this pain from fluorescent light, and struggle to look at even a small screen for more than a couple of minutes (swopping from eye to eye).

I think although my trigger may be slightly different and you cut through most of my story there definitely seems to be some form of neurological problem (pressure where the shouldn't be, or soemthing like that). And it's not typical TN, but ATN does seem to fit the bill more than any other condition I have heard about. I have had full examination of my eyes and the problem is not there. The MRI of my brain did not show anything particularly unusual, but then I see that is not always the case for TN. I also suffer frequent and heavy migraine attacks, but these are a very different pain.

Any questions, comments or help will be well received.

Many thanks,
Chris

I've always had it were I've had dental work toward the back of my mouth/jaw on the right side, but also in my right ear. But recently, I've had some strange bad pains in my nose and once (thank goodness) in my eye area.

Like I said...recently, I have some sharp shooting pains in my right nostril. An ENT said it was related to TN or ATN.

I also had a headache/migraine from "you know where" one night, mostly on the right side. I almost went to the ER. The very weird thing is that my right eye, drooped a tiny bit after that. I think that was related to TN or ATN. Thank goodness, it hasn't happened again. Scared me to death.

I use a compound cream with Gabapentin and other things in it, on my right side 4 to 5 times a day. I now put a little bit of the cream on top of my right nostril 1 or 2 times a day. Voila! Better.

Before getting this cream, I would use Capsaicin Cream. I burned myself many times. Also, found tiny heating pads that I believe skiers use...they heat up chemically and tie them to my face.

I take a med in the same family as Amitriptyline by mouth daily and also use a compounded cream. I've had good luck with this combo. Other meds I tried, ripped my stomach apart and gave me horrible side effects.

A great website to also try is www.livingwithtn.org.