I was diagnosed with Trigeminal Neuralgia a couple of years ago. I have been on Neurotin, Dilantin, Trilipetal, and Tegratol. I quit taking those medicines because of the way they made me feel. I started taking the herbs Hops and Skullcap. They worked the same way but didn't make me feel bad. Now, I'm having numbness in the face and I'm not sure if it is due to the Trigeminal or something else. Also tingling in arms and fingers. I've been fighting diaherra for almost 2 months and wonder if the 2 are possibly connected someway. Maybe there is nerve damage due to the diaherra, possibly from straining sometimes to get bowels empty.
I was diagnosed with TN last summer, or myofacial pain, caused by dodgy dental work and now what seems like even some side effects of viruses are contributing. Have you been to an immunologist or inf dis dr? I know it sounds crazy and farfetched but a lot of viral diseases cause neurological problems and could explain the bowel problems as well. To top things off, I have in inflamed temporal vein, lung problems, stomach problems as well which lead me to urge my dr to take some blood tests for viruses as antibiotics never seemed to kick in. I have tested positive for several viruses which explain some of the "other" problems...my arms or one foot also tend to alternate and go numb. My TN radiates from my lower jaw where there has either been nerve damage from wisdom tooth extraction, a cyst, or osteomyelitis from a silent dying tooth. I have severe ear pain, sinus pain, and the eye pain drives me nuts because it impairs my vision when it starts. I was also on Neurotin and Gabaptin which made me feel trashed so I had to stop. The Neurotin caused general lymphedeopathy, so it basically did more damage than good.
Try testing for a few "different" things...you may be surprised.
I have had so many blood test done. Right now they are testing me for Celiac disease and Malabsorption. I feel like I'm going crazy. With the stomach problems, facial numbness and pain. I also have numbness in my arms and fingers, high cholesterol(281 total w/ldl of 198. Sometimes I think it's a stroke or heart attack, but the symptoms don't last long and my husband tells me its just panic attacks. I don't understand that either because I don't eat much with my stomach bothering me. And no one understands the pain TN causes. It has put me in the floor screaming. I just hope they find out what it is soon.
You both need to contact the Neurology Dept, University of Pittsburgh, Presbyterian Hospital, in Pittsburgh, PA. They are the experts in TN. My sister had surgery there several years ago and is very pleased with the results. Good luck to you both.
I have been suffering for 3 months with Terrible Ear pain, jaw pain and face pain. I have seen ENT's and Neurologists and had numerous MRI's and Cat scans and all were normal. The doctors all have their own diagnosis and I am ready to loose my mind and my job. One dr said Trigeminal Neuralgia another said A tyical facial neuralgia, another blood vessel disorder (facial migraines) and the last said a very serious infection that can't be seen on MRI unless they are actually looking for it.. I have also been put on Neurontin and am now up to 1400mg a day and when it starts wearing off you better hide. I am absolutely miserable. I am in pain constantly and no one gets it. I will be functionable for a few days (but like a zombie from the meds) and then its gets real bad and I end up in bed for 4 days with no let up in site. The attackes seem to be getting worse the more I get them and If they get worse I think I will die of pain before they figure out what is wrong. I am hoping someone out there can talk to me about this because everything I am reading on the web says "I HAVE TN" Why is it so hard for them to diagnose?
I am having so many side effects from all the meds it is impossible to go back to work. I am dizzy, off balance, drunk feeling. I have fallen a few times already. Broke my finger, bruises all over and even chipped my tooth. I am only 37 and getting very depressed feeling that I am not the wife and mother I was 2 months ago. No one seems to understand the PAIN this causes so I was happy to find this site.
looking forward to any help you offer
My sister was just like you...suffered badly, docs just gave her drugs and sent her on her way. She did her own research and found this program at U pf Pittsburgh. She was in her early 50's at this point. She went and was evaluated and luckily was an excellent candidate for the surgery. She did beautifully. She said she knew if had worked on the way from recovery to her room when they wheeled her under an AC vent and the blast of air did not cause her pain. Please call the TN clinic there.
This might sound crazy but try having tests run for all of the Herpes viruses. All of my CTs, scintographies and MRIs would come back clean. I landed in emerge several times without any cause ever being found until recently. I have managed to contract 6 forms of herpes in my short life and the reactivation of a couple has caused my trig neuralgia. Viruses will not show up on any imaging tests. There is usually a reason behind TN, it doesn't just blow in from no where.
Just an idea.