posted
Hi folks, I sent a post last week about TMJ and Lyme. My doctor and I have figured out that my problem is not TMJ, but Trigemminal Neuropathy.
I have an appointment with a non-lyme-literate neurologist tomorrow. He is not responsive to the idea tha Lyme disease can be long term.
I am not going to argue with him because of coure I need his help.
Have any of you had this problem where portions of your face, teeth and neck are in such pain that no drugs will help it?
Have you had trigemminal neuropathy?
Thank you, Lemonhead
Posts: 156 | From Corpus Christi, Texas USA | Registered: Sep 2004
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bejoy
Frequent Contributor (1K+ posts)
Member # 11129
posted
Are you sure you don't have a tooth absess? I have had that kind of pain with a deep infection in a root canal.
-------------------- bejoy!
"Do not go where the path may lead; go instead where there is no path and leave a trail." -Ralph Waldo Emerson Posts: 1918 | From Alive and Well! | Registered: Feb 2007
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
My daughter has trigeminal neuralgia and she is just being tested for lyme....I'm sure she has it.
Because lyme affects the nervous system, it can affect any of the cranial nerves. Inflammation of cranial nerve #5, the trigeminal nerve, will cause this.
Any cranial nerve can be affected, accounting for symptoms like difficulty swallowing, light or sound sensitivity, Bell's palsy, etc.
Go to the link that I added below and go about 1/2 way down the essay and look for a paragraph that starts with....
"The more commonly noticed neurologic deficits....."
This is a fantastic and eye opening essay. I recommend reading all of it.
good luck.
-------------------- 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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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
While I was inadequately being treated for lyme disease, I got trigeminal neuralgia. It caused severe shooting pain to fly across one side of my face, usually near the end of a meal (from chewing). It caused me to scream out each time. After so many episodes, I had continuous dull pain there.
I got to ask Dr. Burrascano about this during a lyme question and answer session and he said that lyme can continue to progress even during treatment and can cause this.
I tried many things but what finally helped was Benadryl and then getting better lyme treatment. The Benadryl, I believe, reduced the sinus swelling which took the pressure off of the trigeminal nerve. No doc recommended this. I studied and came up with this remedy by myself. Hope it helps you. And, put ice on your face while having an attack. That helps.
People who don't have lyme get this also, and it causes severe pain. The doc will try various meds to try to help you. No need to even mention lyme disease to him.
I also had a severe burning pain in my jaw for many months prior to lyme diagnosis. I took anti-inflammatories and had to live on pain meds for it. Had 2 root canals which did nothing. Had the dentist & dental surgeon stumped.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
lemon, this is very interesting...my hubby has had head & eye pain now for over 7 yrs...had every test known to man...2 yrs ago got a pos for Lyme...in treatment and no change...but all along i wondered if his bad discs 3,4,5 he hurt in a car accident could be pressing on this nerve and giving him this pain...
i told so many dr about this...last fall he went to yet another dr and they took mri and others and said they don't think this could be the cause.
Lyme dr also thinks that maybe his head and eye and light and noise pain is not caused from lyme...
i thank you for your info and it gives me more to think about and work on....Madge
-------------------- madgen Posts: 342 | From newjersey | Registered: Oct 2007
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posted
Mayo actually dx my trigeminal neuralgia. (No idea what caused it, just the dx.) It is miserable ! Mine feels like a very sharp pinch that will pulse or remain constant. I also have a nerve in the back of my head that does the same thing. (Neuro said that is a damaged cranial nerve. Again, no idea of cause just the dx.)
I've tried Lyrica and several other drugs. They didn't stop the pain and made me really dopey. The only thing that helps is ice. I have some of the gel ice packs and I will literally lay with the pack on my head. Sounds crazy but it gives me some relief.
Lisa
Posts: 41 | From SC | Registered: Jan 2009
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posted
Some of my first symptoms were with the trigeminal nerve on the left side. It started out with numbness in one branch, then spread to all three branches (including crawling feeling inside gums).
I only had the shooting trigeminal neuralgia shooting pain 2 -3 times (thankfully) and then started a daily medicine for migraines that seemed to stop the pain (the numbness continued).
Later on, I developed glossopharyngeal (9th cranial nerve) neuralgia where I got stabbing pains deep in my ears and throat. That went on for months until I was finally diagnosed and started treatment.
posted
Yes, I have been diagnosed with trigeminal neuralgia, it has been absolutely excruciating at times, especially when I was actively treating...aside, or in addition to the shooting pains, there was a constant, and still is a constant pain.
At times it felt like a drill was boring into my bone.
I went to five dentists over the years and several neurologists. Finally, a neuro decided trigeminal neuralgia and while he does not treat lyme, he does understand how it can lead to this, or, he said, it could be/have been post herpetic.
Either way, nothing helped with the pain and while I was actively treating with antibiotics, it was severe and intense.
I just completed several months of weekly accupuncture, which has helped the daily/constant pain level go down to a lower degree. It still flares up, and when that happens.....it feels like a vice grip on the nerve on the right side of my face, sometimes just the eye part, sometimes the maxillary part, and then the "source" which is between teeth 29 and 30, possibly from 30 alone (although dentists have not come up with it as being a dental problem).
To this day I am considering getting one of the teeth pulled but this would not help the trigeminal neuralgia. It has been a pretty nasty thing.
posted
wow I was beging to think I was the only one out there with this pain.
My neruo said I have trigeminal sensory nerp. He put me on a round or steroids to take the inflammation off the nerve and it was like i was cured.
after 10 the pain was back the second i stopped so i am on it again 16days now and no pain. no facial twitching and that's a blessing because i cant relate the pain is BAD....
I am still being diagnosed ,I have had bells 2x I have tried every medication on the market to get rid of the pain.. I was to the point of suicide.
even did the accu that lasted 30min. I am still fighting doc to get diagnosed and hopefully someday that will happen.
so hang in there i know what you are feeling!!!! my life has felt like it was ripped away... and this med has temp gave it back to me.
good luck...
Posts: 47 | From maryland | Registered: Jan 2009
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posted
Yes, I am also one of the unlucky ones that has this horible afliction, It is actucaly known by many as the suicide dieses. I have found that certain foods , most likly a alergic responce, can afect it also. I can no longer drink any form of alcohol. It will take several days later to flair but it always happens if I just have a few sips. I have also been told some think the herpies virus is attacking the nerve.And for me I believe this is correct for I always get a blister type rash on the side of the face when it is flairing. Thanks for the Benadryl advice TF, I will definitly try that next time.
Posts: 203 | From tipp city oh.45371 | Registered: Jul 2003
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
Lyme is most certainly a major cause of TN or TMJ. TN feels like the entire side of the face and jaw hurt, like a real strong pressure/ache, sometimes a burning feeling.
If you have other symptoms outside of TN, fatigue, neurological, cardia, digestive, moods/sleep -- that's a pretty good sign that it's a systemic issue, not just a facial nerve issue. Poking at just the TN alone probably won't get you far treatment wise unless sorting out the rest.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
posted
Trigeminal neuralgia was the big thing that led to my diagnosis. About every four weeks, it will still flare for a day or two. Very nasty.
Posts: 581 | From CT | Registered: May 2008
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