I was diagnosed a week ago and the neurontin is not working as well as I would like. We have been having storms the last 5 days and I have been experiencing pain like I have never experienced before. Feeling overwhelmed! I have plenty of experience with pain as I have Lupus & Sjogren's Syndrome. I don't know how to explain to my husband, who is wonderful by the way, what I am experiencing. My moods to say the least are all over the place. Does anyone else have burning pain in their eye and ear? I feel it behind my ear and my hair even hurts! I know that sounds crazy but if anyone would understand I know someone on here would. Any tips? My doctors appointment will not be until Tuesday.
Hello,
I may not be of much help since I have a different kind of pain but stormy weather does make my teeth and ear hurt worse than it usually does.. My face was really sore yesterday when it rained ...Some people on here use heating pads on their faces and some have compounded medicated creams they put on their faces...I totally understand about the ear pain..I only have pain in my left ear and underneath it..Someone will be along to give you more suggestions..I hope you feel better soon...
Thanks its nice to know that someone else can relate to me. I will try the heating pad. THANKS!
Go to the groups tab -- there should be lidocaine patches - mouthwash - maybe eardrops discussed in the topical med group.
Ask your pharmacist how long the med should take to work for your nerve pain
Read allllll you can - Look up images of atypical face pain on Google Images
Its just like when you get diagnosed with anything - nobody can truly understand except those who have it.....
link I posted about this "disease" we have -- goes in and out of remission but is ours to keep ---
We have a local - IN person support group in my city --- look above and see if you do....it helped my husband
There is stuff above also to click on about caregivers to help them understand
If at some point - you might want to ..... Read "Striking Back" by Dr. Ken Casey -- Mannny good ideas for face pain - kind of our "book" around here
Also google "Spoon Theory" - applies to all chronic pain
Welcome : )
Hi Jen,
The anti convulsant meds take time to build up to a therapeutic level. It can take several weeks until you find the dosage that works for you. If you haven’t already done so, make sure you ask your doctor how to increase your meds if/when you’re pain gets worse. It’s good to plan ahead, so you know what to do.
Unfortunately it’s trial and error with the meds, and we all respond differently to them.
I always used a heated bag that I microwaved which provided me with much relief. It took the edge off many a time… I’ve also used a lidocaine based cream called " emla ", that I purchased over the counter at the pharmacy. This numbed the area of my face also taking the edge off.
Remember Tn can and does go into remission…talk to your doctor about how long he wants you on the meds pain free before you start to wean off…
It’s hard to explain our pain but I’ve found googling TN images you’ll find descriptive images of where the pain radiates and then I use my own words…
(( hugs ))Mimi
Oh my goodness thank you all for your encouraging words of advice. Xoxoxo