((((((Shelley))))))
and you too((((( EE ))))))
I feel like poo poo at the moment and dont have much to say but wanted ya all to know I care and am reading the forums.
Are the meds helping with the pain Shelley??
EE how are things with you??
PEACE
BMW

Thanks EE :hug: I really apprecaite your support. I am sorry that the docs dont know what caused your TN.

I am glad that I do because the antiviral meds really help even with the pain surprisingly. EE have your docs never thought maybe a virus could be causing it? Its an easy test for them to do a blood test for the IGG and IGM antibodies.

SO right now I am being treated with valtrex for the virus.

I am also using neurontin for the pain and today the pain doc asked me to try nortriptyline because I guess its a neuropathic pain of the trigeminal nerve so he considers it secondary TN.

He also aske dme to think about some nerve blocks but I am to give the meds a try first.

The hard part is that it not only affects the trigeminal nerve but also is affecting the occiptial nerves. He actually did a really good job of explaining why so it helps my mind to know what is happening when the pain is intense.

Anyway its nice to meet you and thanks again for the warm welcome. :hug:

Oooooo noooo BMW I am so sorry you are feeling poo poo :hug::hug::hug: BUt thanks so much for your post and I am trying to mange through this pain as best I can until I get up to some dosage that diminishes the pain. I suppose I will get there eventually. Anyway I so hope you feel better soon :hug:

Shelley,

I'll have to ask about those particular viruses as I don't know. I also suffer with ON but its due to my neck. These conditions are the pitts:eek:.

Let us know how the meds work for you as you go on. The direct nerve blocks for the ON worked for me for a little while, but they are temporary. The initial anesthetic shot is heaven while it lasts. I got some prolonged relief after a second shot with steroids, but it also wore off so right now I'm in limbo there. I've never had any blocks for TN, but I don't know if you're referring to that too, or what. Maybe I'm just over tired and things aren't real clear right now.

Take care :hug: EE

EE I asked the pain doc today why if he virus has primarily damaged the trigeminal nerve do I have occiptial pain and even swelling and occiptial muscle spasms. He explained to me that the trigeminal nerve has nerve inflammation and if swollen and damaged and that when it goes into the brainstem through the skull it loops around and passes next to C1, C2 and C3 so he thinks the inflammed TN nerve is causing secondary pain and inflammation to my occiptial nervs. He even drew a picture and I was like wow ok I get it.

Another thing that has really helped me in terms of the TN pain and this constant burning is a precription triple numbing cream that i put on my forehead and other various places. When I use it I feel relief around the TV nerve and then it progresses to the back of the head and ON nerves. It surprised me but I am thankful for the relief that I can find. But then my TN is only secondary and neuropathic in nature and atypical to some degree.

:hug::hug:

Ron, I am one of the rare V1 TN'rs. 90% of my pain has been in my forehead. My pain is typical TN. Usually if feels like I am being stabbed with an electrified ice pick. I have also felt plenty variations of the pain in my 14 year struggle. I started getting the pain in my eye a month before my mvd. I have had a mvd and gk, but still suffer. I have been hurting alot more the last couple years in my eye nose and eye socket, but the forehead is still most prevelant. I have had some, but very few pains in the other two branches. Any questions let me know.
Will

V1 with Eye pain
 

I have been dealing with V1 located behind my right eye. I had been masking the pain and symptoms with Lyrica but I have just found this* with good sucess and it is all herbal...

*neureton


2 months ago I would have laughted at anyone telling me herbals stuff works, but I have been open minded and have been taking 2 herbal remedies for other conditions and it is working.
I am going to try this and will let you all know. :winky:

severe eye pain
 

Since June of this year I have had severe eye pain - no redness, no vision problems, no other signs of an allergy. I've been to the opthamologist several times and had an MRI of my brain and face with negative results. I have had this for 2 months now, and sometimes it gets better at night. I used to get neuralgia in my face probably about 10 years ago, and it would usually last days. This eye pain has lasted 2 months, and was so painful at times I missed work and couldn't drive it hurt so much to have my eyes open. And just 2 days ago the pain stopped finally. I had put blackout shades on my windows, and also started taking Lamictal (already prescribed for me for my Bipolar, but which I rarely took because of the weight gain issues.) I don't know if that's coincidental or was actually helpful. I also went to an acupuncturist, but of course by the time the appt came, the pain had stopped. My brother told me about this kind of neuralgia, and thinks that's what I have. I was just wondering if anyone else had something like this that affected both eyes and lasted as long.
Thanks, Claudia

Hi there Jen,

This sounds so much like what I'm going through. I've been so discouraged and have not responded well to treatments. I just wanted to say hi. I hope something will work out well for you.