posted
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.
Posts: 8 | From vagabond | Registered: Feb 2013
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beaches
Frequent Contributor (1K+ posts)
Member # 38251
posted
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.
Posts: 1885 | From here | Registered: Jul 2012
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susank
Frequent Contributor (1K+ posts)
Member # 22150
posted
Did I read somewhere that Benadryl can help?
If yes, I wonder how/why?
-------------------- Pos.Bb culture 2012 Labcorp - no bands ever Igenex - Neg. 4 times With overall bands: IGM 18,28,41,66 IND: 23-25,34,39 IGG 41,58 IND: 39 Bart H IGG 40 Posts: 1613 | From Texas | Registered: Aug 2009
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posted
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.
Posts: 463 | From Sandusky, Ohio | Registered: Jan 2012
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posted
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.
Posts: 620 | From Ks | Registered: Oct 2011
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
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.
Posts: 9931 | From Maryland | Registered: Dec 2007
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
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.
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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posted
My uncle took neurotin, that was most effective. He thought that wind and heat set it off.
Posts: 620 | From Ks | Registered: Oct 2011
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Ellen101
Frequent Contributor (1K+ posts)
Member # 35432
posted
I took neurontin many yrs ago for trigeminal neuralgia it was the only thing that helped.
Posts: 1750 | From United States | Registered: Dec 2011
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desertwind
Frequent Contributor (1K+ posts)
Member # 25256
posted
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.
Posts: 1671 | From Tick Infested New Jersey | Registered: Apr 2010
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