Trigeminal Neuralgia (TN) -  Online Support Group

We are patients living with Trigeminal Neuralgia, here for your support.

I had chicken pox as an adult, and now have shingles that affects my face and eyes.  This TN episode is different than in past years.  It normally affects the left side of my face.  About halfway through Acyclovir (1000 mg/day - standard is 800/day according to my opthamologist) I started having both eyes hurt.    It's either both eyes at once, or it moves from one to another - also intermittently in either cheek, or around the eyes.  Acyclovir only gave me headaches and pain all over my scalp.  Neurontin didn't help very much (I could only handle 600 mg/day).  I just started Trileptal yesterday so it remains to be seen if I can go to 1200 mg/day.  Currently aiming for 600.  Does anyone else have burning, stabbing throbbing pain in both eyes?  This comes on from stress.  I am also very sensitive to light (I'm typing with sunglasses on).  I had a stressful event, the day of the event all went very well, so my pain went away, then it came back that night.  Maybe I need to just go on a vacation!  The doctor gave me eye drops for the pain (Pred Forte) but they don' help.  The only thing that helps a little is a very cold washcloth on my eyes.  Anyone have any ideas on how to stop this horrible eye pain?  I haven't left the house for 9 days, I can't take the light.  Thanks for your help.  I got more information from this site than from my doctors!

 

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Replies to This Discussion

Hi Sue,

I'm sorry you are having terrible pain. I developed some of the same type pain you have in and around my eye after MVD surgery. But it isn't very bad or very often. Rest always helps my pain. Maybe rest will help you until you can get over the shingles.

Liz
This has been going on for one year now.  Been through hell with doctors trying to get the the medicine I knew I needed in pill, not capsule, form.  Currently am taking 750 mg of Gabapentin sublingual each day.  Gets better then comes back again.  My body is fighting off the virus and the virus is very strong!!!   I take a little Xanax every day but may have my doctor try something else to see if I can calm the nerves down.  I don't feel stressed!!!

Donna M. Freeman said:

Hi Sue,

 

     It has been so long since you posted this but yes I have as you described..It is all the cranial nerve. Calm that down and the eyes should feel better.

 

    Blessings,

    Donna

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