I just wanted to pass on what I got out of my appointment with a neurologist in Toronto, Dr. Peter Watson. I walked into his office and there were pamphlets on Trigeminal Neuralgia. After we spoke for a few minutes I could have cried--finally here was someone who finally understood what I was going through! Not only that but that he was very interested in everything I had to say and asked so many great questions. I wanted to pass on what we discussed, just in case it is helpful to anyone else. Most of it is not new but it is still comforting to hear it from a specialist. And this is all just his opinion and my interpretation of it.
Diagnosis-He calls it non typical TN. That the cause is unknown. That it can be caused by some type of injury. And because it does NOT fit the typical symptoms. ATN, AFP and neuropathy are all the same sort of thing. That much is unknown about this type of neuralgia.
Treatment-Surgical treatment for TN is not recommended for ATN and can make it worse in some cases. That Type 1 Trigeminal Neuralgia is in a sense every surgeons' dreams because they have an 80% chance of "curing" it with MVD. That using medication is how ATN is treated. With one or a combination.
Medication-Amitriptyline/Nortriptyline, Naurontin, Lyrica
I am on 60mgs Amitriptyline. He wants to me to switch to Nortriptyline because it should have less side effects. The side effects I have from Amitriptyline are dry mouth, weight gain, short term memory loss, trouble concentrating and fatigue.
Medication to ask for in the ER (hopefully I never need to again)-Percocet (didn't work for me last time), Dilaudid, Morphine, Lorazapam, Clonazepam
Dentists-to be very careful. Yes we all know this one! He said every time a root canal or extraction is preformed that the nerve is vulnerable. To only have these procedures with specialists. Never a family dentist. To choose someone very carefully. And to never have any procedure done unless there is clear physical evidence of it. He said that most dentists only know how to do one thing--fix broken teeth.
Herpes-He asked me if I have herpes. I thought this was very interesting because I do. I rarely get cold sores but have for a long time. The last one I had was on the same side as my original pain and its symptoms seemed to mimic my ATN pain and their locations in my jaw and teeth. So I read about it and it "hides out" in the trigeminal nerve and comes out as cold sores. I thought that was strange. Now lots of people have herpes but not ATN! but it made me wonder about the roles that viruses can play with this whole thing. He said there is no definitive evidence that herpes simplex can cause ATN but that it was something that caught his attention. And it should given what we know about herpes zoster and shingles (that is just my opinion). Food for thought.
Genes-I am the fourth person in my family to have TN. He said that heredity is rare but that certain people through familial genes seem to be prone to neuralgia. Beyond that not much is known about it. He was very interested in my family history with it.
Progression-This is my biggest fear. He didn't have any answers for me. Just that I have responded very well to a conservative dose of Amitriptyline which is good. And that we still have lots of options in our pocket. He said that absolutely stress, anxiety and lack of sleep exasperate ATN. To follow a Mediterranean diet, keep stress to a minimum and slow down when my body is fighting anything. Gets lots of sleep and exercise. He also told me to make sure I take vitamin D, vitamin B12 and mixed B vitamin.
And he is now my doctor which is awesome!