My llmd tells me that my Lyme is the cause of my TN. This is by FAR the worst symptom. The pain is excruciating when I have a flair up. Does anyone else here have this? What kind of treatment/meds have helped you? I have had some success with a chiropractor that is also a neurologist...my flairs ups are a little farther between and better under control.
Posted by beaches (Member # 38251) on :
I had god-awful pain from trigeminal neuralgia. I was laid up and completely incapacitated with this condition.
The ONLY thing that ever helped was percocet. Nothing else even came close to touching that pain.
Thankfully, I haven't had to deal with this for a long time.
Posted by susank (Member # 22150) on :
Did I read somewhere that Benadryl can help?
If yes, I wonder how/why?
Posted by jlf2012 (Member # 36002) on :
I was diagnosed with trigeminal neuralgia before lyme disease. Pain killers didn't help this awful pain at all so I went on a medication called tegretol and it took the pain away. I still had pressure and bad reactions to the tegretol though, so they did surgery, going through my skull...now I know this wasn't necessary because it was lyme disease all along:( ...but try tegretol. It was the only thing that took the pain away for me.
Posted by cozynana (Member # 34270) on :
You have my sympathy. I have witnessed the horrific pain with a friend a and an uncle.
I will see what med my uncle used, it seemed helped.
Posted by TF (Member # 14183) on :
Benadryl worked for me. The ultimate answer was good lyme treatment.
I believe the benadryl works by decreasing the swelling around the facial nerve. The sinuses are nearby, etc.
This IS an unbearable symoptom. I tried other things, but only the Benadryl helped me.
Posted by Dekrator48 (Member # 18239) on :
Alpha Lipoic Acid helps my adult daughter's TN caused by Lyme.
I think she was taking 300 mg twice daily and her LLMD told her to increase the dose even more.
She said the ALA makes the pain much more tolerable.
Posted by cozynana (Member # 34270) on :
My uncle took neurotin, that was most effective. He thought that wind and heat set it off.
Posted by Ellen101 (Member # 35432) on :
I took neurontin many yrs ago for trigeminal neuralgia it was the only thing that helped.
Posted by desertwind (Member # 25256) on :
Yes, big issue for me.
Mine came on after a base of skull surgery where some of the nerves were injured BUT I also think TBI's effect that area as well.
Neurontin (Gabapentin) is a miracle med for me and I can take it PRN/as needed at a very low dose. I take 100-300 mg.s when it is bad and I get relief. Soma also helps but makes me too dopey...
BTW..I am finding that gluten makes it worse. I try not to eat gluten but when I do eat it I get a bad flare up of TN. So there could be an allergic aspect to it - for me anyway.