Member Comments are provided by individuals and reflect their personal opinions only. Under NO circumstances should you act on any advice or opinion posted in this forum. ALWAYS check with your personal physician before taking any action regarding your health! MedHelp International and our partners, sponsors and affiliates have no obligation to monitor any comments posted on this site, or the content and/or accuracy of such exchanges. MedHelp International does not endorse the views of any user.
Neurology (Expert Forum)
Lyme and Trigeminal Neuralgia
This forum is for questions and support regarding neurology issues such as: Alzheimer's Disease, ALS, Autism, Brain Cancer, Cerebral Palsy, Chronic Pain, Epilepsy, Fibromyalgia, Headaches, MS, Neuralgia, Neuropathy, Parkinson's Disease, RSD, Sleep Disorders, Stroke, Traumatic Brain Injury
Lyme and Trigeminal Neuralgia
by raymond, Mar 20, 2000 12:00AM
About seven or eight years ago I experienced a numbness along the right lower side of my face. It felt like I had just received a shot of novocaine. I went to an ENT who ordered a number of tests including a CT scan, etc., and found nothing wrong. As a last resort I was tested for Lyme, and this came back positive. I was treated with antibiotics. The numbness resolved and everything seemed fine for the next few years. I then developed severe jabbing pains in my lower jaw which got progressively worse until I ended up in the ER unable to even talk. I was given a local anesthetic similar to novocaine which stopped the pain for a few hours. The diagnosis was Trigeminal Neuralgia, and I was put on Tegretol. This worked for another two years, but my dosages had to be continually raised to the point where I was becoming a zombie. I opted for an MVD. Unfortunately it didn’t work. I no sooner woke up , and the pain had returned. After review, one of the neurosurgeons noted that my MRI had a few blotches that were similar to people with MS. He said that it was not MS, but perhaps could have been a mini stroke or something similar. At any rate he said that patients with that type of MRI often don’t do well with an MVD, and suggested I think about the Gamma knife. I returned home, and continued taking increasing doses of Tegretol, but eventually was not functioning well at all. I then saw another neurosurgeon who suggested a radio rhizotehmy. He performed the procedure placing a very small lesion on the nerve. While I had almost no numbness, I did not get relief, and the pain was as bad as ever. I went back for a second radio rhizomety. This time the surgeon put a much larger lesion on the nerve, in fact he said it was the largest lesion he had done, and he wasn’t sure it was going to work. Well it did! I had some significant numbness, but the relief was well worth it.
For nearly two years now I had been pain free, but the numbness has slowly resolved and the pain has returned Not completely resolved, half my tongue and some of my cheek still feel like novocaine, but not nearly as numb as originally. As the pain returned it started out as just a twinge, but now it is much more severe, and I have started back on Tegretol (200mg/day). I’ll have to wait and see how much I will have to take. I suppose eventually I’ll have to have another surgery.
My questions: Is it possible that I have some kind of permanent or ongoing nerve damage from the Lyme disease? I have heard of possible links, but could not find anything definitive on this subject. About three years ago I had a second test and it came back negative, but I understand there are other tests that might be done. Should I continue with the Tegretol therapy until the dosages become to high or ineffective, or should I consider another radio rhizomety right now? I am taking blood pressure medications: Toprol XL along with Hydrochlorothiazide and Zocor. Do any of these pose a problem interrelation with Tegretol?
For nearly two years now I had been pain free, but the numbness has slowly resolved and the pain has returned Not completely resolved, half my tongue and some of my cheek still feel like novocaine, but not nearly as numb as originally. As the pain returned it started out as just a twinge, but now it is much more severe, and I have started back on Tegretol (200mg/day). I’ll have to wait and see how much I will have to take. I suppose eventually I’ll have to have another surgery.
My questions: Is it possible that I have some kind of permanent or ongoing nerve damage from the Lyme disease? I have heard of possible links, but could not find anything definitive on this subject. About three years ago I had a second test and it came back negative, but I understand there are other tests that might be done. Should I continue with the Tegretol therapy until the dosages become to high or ineffective, or should I consider another radio rhizomety right now? I am taking blood pressure medications: Toprol XL along with Hydrochlorothiazide and Zocor. Do any of these pose a problem interrelation with Tegretol?
Doctor's Answer
by CCF Neuro[P] MD, RPS, Mar 20, 2000 12:00AM
Dear Raymond:
Sorry to hear about your trigeminal neuralgia. Yes, Lyme can cause trigeminal neuralgia, however it is not a common entity. The treatment is antibiotics and usually the pain will not return. The lyme will be removed by the antibiotic. However, if the pain is related to HERPES then the pain will often return. There are some signs that would idicate a HERPES infection, such as small vesicles in the ear area. Since it is impossible to fully get rid of the Herpes from the sensory neuron, the pain will return.
There are other medications for the pain. We like neurontin as it has little side effects and little reaction with other medications. Sometimes, the TCA's are used.
Sincerely,
CCF Neuro MD
Sorry to hear about your trigeminal neuralgia. Yes, Lyme can cause trigeminal neuralgia, however it is not a common entity. The treatment is antibiotics and usually the pain will not return. The lyme will be removed by the antibiotic. However, if the pain is related to HERPES then the pain will often return. There are some signs that would idicate a HERPES infection, such as small vesicles in the ear area. Since it is impossible to fully get rid of the Herpes from the sensory neuron, the pain will return.
There are other medications for the pain. We like neurontin as it has little side effects and little reaction with other medications. Sometimes, the TCA's are used.
Sincerely,
CCF Neuro MD
I too suffer trigeminal neuralgia among other things. My condition is semi-controlled and no matter what I do or take, a portion of pain remains. I am an avid promoter of Neurontin (Doc RPS knows this well) because I have used it for years and can honestly say the side effects concerning it are next to nil. It's pushable and reduceable in regard to the situation. It's definitely a time-oriented drug, so one must design a schedule and adhere to it for maximum results. I give it an A+.
As for tegretol? There are too many side effects. The major one is liver damage, and that's enough for me. I used the drug for several years, then began having light pain beneath my rib cage on the right side and was taken off it. Plus... I felt like the zombie Raymond describes. I'm a pretty active person and don't need a drug that drags me down. Go Neurontin! And you all have a good day.
Sincerely,
Christine
Yes, trigeminal neuralgia is always associated with the face. The trigeminal nerve, or CN V is the nerve affected and is the location of the facial pain.
CCF Neuro MD
CCF Neuro MD
It came on rather suddenly, but he got quick relief from decadron. In no time he was able to walk normally and had strength in his left hand. He is now re-building his muscles.
I suspect that he was bite by a tick 11/98. He had a terrible winter that year and has struggle off and on since. He also has asthma, which we thought might have caused the bad winter.
We currently have a lyme test in the lab awaiting results. The spinal tap came back with oligoclonal bands positive. Does this necessarily mean that he has some type of MS problem or could this be part of the lyme disease? Thanks for the reply.
Sorry to hear about your son. Although lyme disease is one of the mimics of MS, from the oligoclonal bands and the return of function after steriods, my first impression is MS. Some viral illnesses can give oligoclonal bands in the CSF. Although you son is young, MS has been reported in this age group. If the lyme test comes back normal, I would rule out MS by seeing a good pediatric neurologist. What did the MRI of the brain show?
Sincerely,
CCF Neuro MD