@susanlurding do you get numbness with your trigeminal neuralgia? I have trigeminal and occipital neuralgia and it seems noone understands. Doctors don't offer much. I hope you can find info on the surgery and I am sorry I can't offer any knowledge on that. Just a hello from a fellow sufferer.

thank you so much for contacting me. it means so much to me to know that someone understands and thinks this is real. Yes, I have the numbness also on my skin, my teeth, really every where I touch on my face is numb to the outside touch but excruciating right below the numbness. Unfortunately, the numbness does not numb the pain which is constant. I do not know how to explain this to someone who has never had this. My face many times a day gets beet red and feels like I have been dragged across asphalt. I have. this pain especially around my eye, eyebrow, lid, lining. This area is so swollen when I get up. in the morn that it takes me about half an hour of ice cold compresses to open my eye. My eye doctor says that the shingles did not go into my cornea, but because of the tissue damage my eyesight is much worse in my left eye. I'm not sure if this is what you call occipital neuralgia. I cannot tell you how I feel for you, and pray that you stop hurting. It is nice to converse with someone because I avoid contact with others so that I don't have to explain it over and over. especially since they tell me how good I look! Take care and if I can be of any help to you please let me know. I live in Louisville, KY, Susan Lurding

What a generous message when you are suffering.

I am living in a new place and the neighbor's AC condenser is triggering really bad neuralgia in face. Neurologist says I need to move. I have hyperacusis (heightened hearing) which interacts with neuralgia unfortunate. I went out to sleep in my car one night!

Best wishes for some help to come your way, though I know how elusive that is.

@susanlurding
I’m sorry to hear about your suffering.

I have had some trigeminal nerve pain and post herpetic pain (affects my scalp, eye, lips, chin, etc.).

I’m not sure what tests/treatments you have already had or medications you are taking. I read through the links below and they provide a good overview of options. It is mentioned there is no cure for it but treatments to help relieve symptoms.

I pray that you are able to get options to help relieve some of your suffering.

1. https://www.mayoclinic.org/diseases-conditions/trigeminal-neuralgia/symptoms-causes/syc-20353344
2.
https://www.mayoclinic.org/diseases-conditions/postherpetic-neuralgia/symptoms-causes/syc-20376588

I have had TN 1 twice. Left side of head from an injury and six years later it came back. Worse pain I have ever had. I noticed that if I was careful I might only have one shock a day. A lifetime of habits now cause excruciating pain. So I wondered if I can avoid all shocks for three days what would happen. I did this for three days and continued for eight days. This was not easy. After eight days I decided to touch my nose which always produced the most excruciating pain to see what would happen. I touched it and nothing happened. It was gone. I was able to shave for the first time in two months. I know every case is different but this is what worked for me. It's worth a try. TN is demoralizing. Brain surgery was out of the question for me.

The AC hum woke me at 3:30 am (it was 55 outside!) and when I woke I already had left side pain and numbness on my face and was dizzy. I bought this place three weeks ago. At this point I will lose money selling it but it would be worth it. I thought the AC would stop soon.

@daaboss

Here is a link to your comment in May. You find it under your account (you’ll find your discussions, comments, etc.).
https://connect.mayoclinic.org/comment/1064404/

@daaboss

Here is another link later in May.
https://connect.mayoclinic.org/comment/1075784/

Yes if I write a really long post I will even copy it and email to myself, or sometimes put it in a Google doc. The non stop spinning wheel has only happened maybe three times in two years and each time it was for a long post, but that may be coincidence. I don't blame the site. The Internet can be capricious.

I have had the Laproscopic Micro Vascular Decompression you are probably referring to. I had it done 7 years ago. I had a very speedy recovery and after 10 days they said I could even drive within a 5 mile radius. I had virtually no pain and only needed a half does of morphine the first two days in the hospital. ICU 1st night then regular room the 2nd night before going home. The doctor used bone putty, no metal plate needed as the opening ing was very small. My husband was working but his two sisters and my best friend came to hang with me the first 10 days because there is a risk of stroke so they wanted to make sure I wasn't alone. I did have fatigue for a ot a month but nothing debilitating. I had this done by a Dr Johm YK Lee at Penn Medicine in Philadelphia. He placed a teflon pad between the nerve and an artery and also the nerve in a different spot rubbing on a vein. Unfortunately my TN is back after I severely broke a tooth and it was pulled. The pain is now where you describe and Dr Lee is suggesting Gamma Knife procedure. I'm not sure if I will do this. I am 70 now and am having trouble with oxcarbazapine side affects sso I'm kind of between a rock and a hard place. Hope this helps.