LymeNet Flash: Trigeminal Neuralgia

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»	LymeNet Flash » Questions and Discussion » Medical Questions » Trigeminal Neuralgia

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Author

Topic: Trigeminal Neuralgia

tonysgirl
LymeNet Contributor
Member # 11202

posted

Ok, I am just lighting up the boards tonight with questions, sorry!

Has anyone had Trigeminal Neuralgia as a result of their lyme infection and were you successful in treating it? I am getting pains in the side of my nose and corner of my eye. I am also getting a dull aching in the cheekbone area. It is not sinuses as I am clear. I am deathly afraid that this is a prodome to Trigeminal Neuralgia.

Posts: 157 | From connecticut | Registered: Feb 2007 | IP: Logged |

cozynana
LymeNet Contributor
Member # 34270

posted

So sorry to hear you think it might be TN. My girlfriend had it. It was not due to Lyme. Hope you can get it addressed soon.

Posts: 620 | From Ks | Registered: Oct 2011 | IP: Logged |

jlf2012
LymeNet Contributor
Member # 36002

posted

Yes, I was diagnosed with TN about three years ago. I think it was from the undiagnosed lyme though. Now that I'm in treatment I notice the pains when going through a herx. I'm hoping it will go away with successful lyme treatment. Tegretol will most likely help the pain if it's unbearable. However, tegretol has many side effects:(

Posts: 463 | From Sandusky, Ohio | Registered: Jan 2012 | IP: Logged |

TF
Frequent Contributor (5K+ posts)
Member # 14183

posted

I got trigeminal neuralgia while on lousy lyme disease treatment.

For me, taking Benadryl made it go away. Then, I got good lyme treatment and all of my symptoms went away.

It is now over 7 years ago that I completed my lyme and coinfection treatment.

I didn't get any prodome to TN. I just got a full-blown attack one day near the end of dinner.

The attacks came after chewing for a while. Hard chewing especially. So, many with TN eat only a soft diet.

I definitely became afraid to eat. After a number of attacks near the end of dinner, I could get an attack at any time. (The TN is "kindled" as they say.)

I tried various things that didn't work and just accidentally hit on the Benadryl. Give it a try.

If you are not getting the symptoms after chewing for a while, then it doesn't sound like TN to me.

Posts: 9931 | From Maryland | Registered: Dec 2007 | IP: Logged |

sickmate
LymeNet Contributor
Member # 31502

posted

I also have neuralgic pain in the face, a kind of atypical TN.

Mine is triggered by using my eyes, not by chewing.

Its hell and I havent found something that helps yet. Also tried an allergy med (not benadryl), but didnt help.

Trying high dose B12 at the moment and desperately looking for an answer.

Posts: 214 | From Home | Registered: Apr 2011 | IP: Logged |

Lymetoo
Moderator
Member # 743

posted

I had what I believe was, at the very least, cranial nerve pain.

Taking cortef made it subside. I tried to go off the cortef 4 yrs ago and the pain returned with a vengeance. Back on cortef to stay! I take 10 mg a day. (for adrenals)

--------------------
--Lymetutu--
Opinions, not medical advice!

Posts: 96239 | From Texas | Registered: Feb 2001 | IP: Logged |

tory2457
LymeNet Contributor
Member # 10384

posted

I too have TN and had it for years off and on. I understand how hard this is to deal with and feel for you and others who do.

When I was first diagnosed with MS my neuros stated TN was not a symptom of MS cause "pain" wasn't a MS symptom. ha ha

Years later TN was considered a MS symptom and so was "pain".

My first appointment with my LLMD he said he sees MS and lyme patients with TN.

During treatment, my head pains came back with a fury. I hung in there continued with treatment /pain and found that treatment was in fact helping.

I no longer have the amount of on/off again pain and I am a believer that abx treatment helped me with this one symptom that was so intolerable.

This is my experience, but the advice I was given was to do my best to get through what treatment brought about, and for me it made a difference.

It's not easy due to the level of almost intolerable pain, but whew..I guess it can be done.

do try Benadryl or anything else to help with the pain..for me nothing helped..but keeping positive always is a winner.

Having a doc familiar with TN (finally) and understanding how treatment Might work was a relief as well.

the best to you,
tory

Posts: 158 | From PA | Registered: Oct 2006 | IP: Logged |

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