posted
hi i have had lyme for many years now. i was treated a long time ago, i have not been on any treatment for 8 years. 3 years ago i was diagnosed with a illness called trigeminal neurrolgia which i will use tn to shorten it. it is very severe nerve pain. i have been treated with meds which did not help and then a mvd operation for it. they said they found a blood vessel pressing on my nerve. recenlty a old doc thought i might have something called lyme trigeminal neur olgia. there are a few people on another site that said they did have lyme and tn together. i was wondering if anyone has heard of this or has this and is caused by lyme. my pain feels like its in my tooth but they say its really the nerve. and the pain is very severe. any answers will be appreciated. thanks michelle
-------------------- michelle cervera Posts: 2 | From connecticut | Registered: Oct 2012
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Haley
Frequent Contributor (1K+ posts)
Member # 22008
posted
TF had that. She has told her story many times. You may do a search for TF and trigeminel neuralgia (not sure on spelling).
Posts: 2232 | From USA | Registered: Aug 2009
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posted
Hi Michelle glad you found your way here. Be sure to do a search like I told u. Lots of talk about TF in the past. Hugs Joyce
Posts: 905 | From Santa Cruz,Calif | Registered: Aug 2005
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posted
TF is the one that talked about TN in the past. And others mentioned having it also. Hope u can find the threads in search.
Posts: 905 | From Santa Cruz,Calif | Registered: Aug 2005
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Yes, Michelle, when I was being given lousy (inadequate) lyme treatment, I developed trigeminal neuralgia. It was unbearable. It felt like someone was electrocuting me in one side of my face.
At first it was brought on by hard chewing (like chewing meat at dinner time), but eventually, it could come on me at any time. This is a horrendous condition!
I got to ask Dr. Burrascano about it at a lyme conference. I asked what he thought of a patient on high-dose antibiotics who then developed trigeminal neuralgia.
His reply was, "If the therapy is inadequate, the disease will continue to progress."
So, that means that Burrascano was blaming the tn on lyme disease.
I completely agree with this. I switched doctors and got Burrascano-type treatment and the tn went away and never came back. That has been 7 1/2 years ago now. No recurrence. When I got rid of lyme, I got rid of all of those types of nerve pain.
Before I even knew that my diagnosis was lyme, I got severe dental pain from lyme disease. It felt like liquid fire was flowing down one side of my jawbone. I ended up at an oral surgeon for this. He told me it was caused by inflammation.
I had to take a lot of anti-inflammatories and live on pain pills until warm weather came. It was so bad that I wanted to cut my head off. It went on for months. Wet and cold weather made it worse. It went away when spring and summer came.
Lyme can attack all facial nerves. For example, it also gave me a mild bells palsy on both sides of my face. That is known as "facial drooping." It is not as dramatic looking as the severe one-sided bells palsy.
So, get good treatment for your lyme disease and I believe your tn will go away. That will be a great blessing. My heart goes out to anyone who has that terrible affliction.
Here is a quote for you from Burrascano:
"It is clear that in the great majority of patients, chronic Lyme is a disease affecting predominantly the nervous system." (page 4)
And, from page 10, list of common lyme symptoms:
"Tingling, numbness, burning or stabbing sensations, shooting pains, skin hypersensitivity
So, you don't have to look any farther to find out what is causing you this agony.
Posts: 9931 | From Maryland | Registered: Dec 2007
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
i have it and have been dealing with lyme 30 yrs...not sure if my lyme is active now...but something is
i am lucky. neurontin works immediatley for my TG i only have to take one or two 300s and it goes away
many ppl here take more neurontin than that every day
i cant cuz it makes me very sleepy but it does stop the pain and i am ok
my pain is what you describe-and if i couldnt control it...i dont know what i would do. to me-that is a pain you cant live with
i have a cousin that takes a med everyday for it-his is a structural pressure not operable
good luck...this is one thing i have and so far can control so be positive about it
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
if you get worse in wet weather be sure you are not dealing with mold
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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desertwind
Frequent Contributor (1K+ posts)
Member # 25256
posted
I get TN along with Occipital Neuralgia. The Occipital N. may be a result of my nerve being damaged/cut during skull surgery but I believe lyme is also to blame.
TMJ is a major factor for my TN - lyme and bite related problems.
Cold weather is a bear on it and I can get a flare up from just moving my head in a certain way.
Neurontin works great and I can take a low dose 100-200 mgs. PRN and get good results.
Soma is also been a life saver for me. Sometimes works better then Neurontin.
Magnusium Oil on my face helps the pain as well. Mine does not seem to get better with tx..so I am not 100% sure it is lyme related or just due to TMJ (occlusion issues) and post Chiari surgery damamge.
Posts: 1671 | From Tick Infested New Jersey | Registered: Apr 2010
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posted
TF I saw u mention some alternatives in some other threads that u were on. Can u post here please.Thanks
Posts: 905 | From Santa Cruz,Calif | Registered: Aug 2005
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
For me, Benadryl did wonders. I tried cranio-sacral therapy, but it didn't help me at all.
I tried neurontin but I could not tolerate the dose needed to be effective.
I think this is what you were referring to HinSC.
Posts: 9931 | From Maryland | Registered: Dec 2007
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