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» LymeNet Flash » Questions and Discussion » Medical Questions » Any one with trigeminal neuralgia caused by Lyme?

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Author Topic: Any one with trigeminal neuralgia caused by Lyme?
ktkdommer
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I am trying to help a fellow teacher who is on medical leave with atypical trigeminal neuroalgia. When I asked more about her condition, I found out she lives on 7 acres with deer and mice and that as a young girl she had a tick removed from her scalp that was the size of a dime.
Do you think it warrants Lyme testing through IgeneX? Any experience you have with it would be appreciated.

--------------------
Things are never dull. After 3 fighting Lyme, 2 are in remission. Youngest is still sick, age 22. He has new diagnosed Chiari Malformation and Ehlers Danlos Syndrome.

Posts: 1366 | From Perrysburg, Ohio | Registered: Nov 2010  |  IP: Logged | Report this post to a Moderator
TF
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Lyme disease gave me trigeminal neuralgia. The pain of it is unbearable.

So, if that is her case (unbearable pain and nothing the docs do helps her), I would assume she would be willing to find out if she has lyme, since lyme treatment would eventually get rid of it.

In the meantime, tell her to try taking Benadryl. For some reason, Benadryl got rid of my trigeminal neuralgia. I believe it did this by shrinking my sinus cavities and that got rid of the pressure on the trigeminal nerve in the face.

The people I have known with trigeminal neuralgia will try anything to get rid of this pain.

I tried cranio-sacral therapy, but it didn't work in my case.

One woman I know who has had this condition for years eats only soft foods. I can understand why. I always got my attacks near the end of eating dinner, especially if it involved some food that required significant chewing, like meat. (Breakfast is usually soft food, so no problem.)

I couldn't get to the end of the meal without an attack. And, once you get a number of attacks, then you can have pain continually, even when you are not being "electrocuted" in your face.

I would not wish this condition on anyone!

Since lyme is a disease basically of the nervous system, it is not uncommon for it to cause trigeminal neuralgia.

"It is clear that in the great majority of patients, chronic Lyme is a disease affecting predominantly the nervous system." (page 4 of Burrascano Guidelines)

Lyme gave me many types of facial conditions--bilateral bells palsy (a type of facial paralysis), dental pain, dry eye, dry mouth, jaw pain (a burning pain), nearly continual headaches, etc.

God bless you for trying to help this woman. Just let me know if I can be of further assistance.

Posts: 9931 | From Maryland | Registered: Dec 2007  |  IP: Logged | Report this post to a Moderator
SashaC
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I developed cluster headaches and bilateral atypical trigeminal neuralgia from Lyme.

The facial pain was one of my first symptoms. The neurosurgeon I went to for a TN surgery consultation told me that one in four LD suffers will acquire some form of TN. He said that the spirochetes invade the trigeminal nerve, as well as the other facial nerves.

I was considering having a Microvascular Decompression surgery since my pain was so terrible.

The neuro told me that I could have every surgery out there, but my TN was not going to get better until I successfully treated my Lyme.

I tried a dozen anti-seizure meds that had no effect on my pain. I finally found lamictal, which does a pretty good job of controlling the shocks and pain I had.

It still hasn't gone away, but it is slowly improving.

Posts: 151 | From SW US | Registered: Feb 2009  |  IP: Logged | Report this post to a Moderator
SashaC
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Also, TF is correct, benadryl worked for me too.
Posts: 151 | From SW US | Registered: Feb 2009  |  IP: Logged | Report this post to a Moderator
Runner17
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Tooth pain was my first Lyme symptom. It started in the teeth on the left and progressed to the ear. And then it jumped to the other side. Now my face is constantly numb. If I touch my face it will go numb or I'll have a dull aching pain where I touched. After eating or drinking my mouth burns like I ate something hot.

I read somewhere that tooth and gum pain can be a manifestation of trigeminal neuritis. And the 5th cranial nerve is the second most likely cranial that can be affected ( behind the facial nerve which causes Bells Palsy) in Lyme.

I wish I knew this sooner because I spent a long time going to the dentist for this. When searching on the internetfor information to give my dentist. I found the name of a dentist who has done some work on Lyme and orofacial pain. Have your friend google "Dr Heir Lyme". And some good information will pop up.

Best of luck to your friend.

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lpkayak
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i get it but much smaller degree than the others here

had it 2-3 months as ear and toth pain...then fgured it out thanks to lymenet

i use neurontin and benedryl to control it the few times it flares now

oxycodone didn't touch the pain

i think it is my ongoing lyme tx that has made it mostly go away

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Lyme? Its complicated. Educate yourself.

Posts: 13710 | From new england | Registered: Feb 2004  |  IP: Logged | Report this post to a Moderator
IckyTicky
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Yes, worst pain in the world. Upper Cervical specialist chiropractor got me back to normal. There is a book, very cheap and quick to read, called "What Time Tuesday?" it's about a man who was going to kill himself due to this TN pain and his last ditch effort was atlas orthogonal technique on a Tuesday. If it didn't work he was going to kill himself that night. It worked, he didn't kill himself and he wrote the book [Smile] It helped me so much.

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IGM: 18+, 23+, 30+, 31+++, 34+, 39IND, 41++, 58+++, 66+, 83-93IND
IGG: 31+, 39IND, 41+
Also positive for Mycoplasma Pneumoniae and RMSF.
Whole family of 5 dx with Lyme.

Posts: 1014 | From Texas | Registered: Jul 2009  |  IP: Logged | Report this post to a Moderator
ktkdommer
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Thank you everyone! I will send her your responses. I think she will be very open and appreciative. We are in NW Ohio and if her doctors are like the ones I had, they just are clueless. The info here, I think will help her follow through with IgneX testing.
Thanks again for your time and replies!

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Things are never dull. After 3 fighting Lyme, 2 are in remission. Youngest is still sick, age 22. He has new diagnosed Chiari Malformation and Ehlers Danlos Syndrome.

Posts: 1366 | From Perrysburg, Ohio | Registered: Nov 2010  |  IP: Logged | Report this post to a Moderator
   

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