Currently on 400 mg Gabapentin plus two Xanax daily for bilaterial, post-herpetic neuralgia. Will see a rheumatologist next week in case I also have Lupus. What next?! The pain in my eyes is excruciating. Has anyone had any luck with Tramadol? I only take Xanax to put myself to sleep because of the pain. My neurologist said the Xanax would help with the nerve pain but it sure isn’t, its only making me sleepy, dopey, and it sure gives bad headaches sometimes (and no, I don’t live with the dwarfs!). I was unable to get a lidocaine patch as my neuro did not specify to my insurance company that I had post-herpetic neuralgia (even though she put that on the perscription, it only said neuralgia on the sheet I saw). Maybe it is also Lupus pain in my eyes, as I have lymph node pain and pins/needles in my feet. I am at the end of my rope - very little computer, TV, or reading because of the pain. Don’t go outside. I feel like a nursing home resident. What medicine really helps with eye pain? I am hoping to be able to get Gabapentin as a cream (I found a local pharmacy that will do it) to get up higher in dosage as this has helped in the past - but it bothers my ulcers if I take too many pills. Any advice will be greatly appreciated. Sometimes I feel like I’m disappearing and I’m really not here anymore - only the shell of what I used to be.
Dear Sue,
I truly feel for you as I too get pain in my eyes and through my temples as well and I too am suffering with the bilateral thing, though mine is tn1 not the PHN as you have. Still the pain is the same.
My doctors have also tested me for lupus, eptein barr and a host of other disorders to all come back negative, so that did not help me in any way - best of luck to you in finding out any further answers!
I too though get the lymph node pain plus pins and needles in my feet, and now also get this in my arms, hands, shoulders & knees. This is getting worse for me and I've yet to get answers for my problems, so I'll be very keen to hear the results from your appointment with the Rheumatologist next week!
I was recently diagnosed by my GP with a 2nd rare condition called Ehlers Danlos Syndrome and I'm waiting to see a Rheumatologist myself, though it's a public hospital waiting list and I'm told that appointment may take years, so I need to find a different way of seeing a Rheumy or other specialist who may help with my diagnosis.
Also, eye pain is also part of TN, its said to be less common to have the eye pain which is a result of TN in the first branch of the trigeminal nerve - but there are a good many folks here, including myself who experience that pain, and I would say it's one of the worst of the TN pains I've had.
To combat the pain in my temples and eyes, I place a heated rice pack on the back of my neck, sometimes it helps. If it's more directly in the eyes, I place a hot washer over my closed eyes and rest for a few minutes with my head reclined back on a bed or sofa.
Sorry, I wished I had better answers, but right now - I can't think of much at all - brain fog is in full effect today.
Cheers,
Kerry
The rheumatologist didn’t find any Lupus or RA. SO - I upped my medicine from 400 to 500 to 600 mg and it is helping. I knew this was what I needed, I had a hard time convincing doctors over the past 10 months that I do have PH TN! As far as the pins/needles goes, I now have a great general MD who discovered through blood tests that I have a pretty low thyroid gland and that’s probably causing my foot and leg pain. Only been on increased thyroid medicine for two weeks and already my hair and eyelashes have stopped falling out. I can take the Gabapentin if I only take 200 mg at a time, at this level it isn’t bothering my ulcers. My lymph nodes are better too. I sure wish doctors were more familiar with TN. And I wish they listened to us - we know what’s going on with our bodies!!!