Hi everyone. Kinda new to posting. I’m 43 yr old who in 2004 had an upper molar extracted. This was the beginning of my pain. My maxillary nerve(infraorbital nerve) was damaged. The oral surgeon fractured the maxillary sinus. I have had injections, pulsed ablutions, Botox injections, many meds and an unsuccessful MVD. I suffer from Traumatic trigeminal neuropathy. Was hoping for anyone who has had success with Neurostimulation?? The meds are wearing me down. I love my job and hoping I could get some support and ideas on this. My pain is aching and burning. Not too bad in morning but as day progresses it gets worse.
Thanks in Advance
Chris
1 Like
Hi Christopher,
I’m so sorry for your pain, but I do admire your ability to continue working! Your pain sounds similar (but not exactly) like mine. I had a dental/sinus injury combined with Lyme disease, and have had many differing diagnoses. I’ve tried loads of treatments as well (3 rounds of ketamine comas, radiofrequency ablation which was horribly botched, Botox, etc.) I’m currently experimenting with ketamine nasal spray, only 2 days so far, so no conclusions as yet. The only thing that has truly given (partial) relief so far is opioids. Not the preferable treatment, but it keeps me from banging my head into the wall (most days). I use alternating hot and cold packs. My favorite is the Headache Hat because it stays cold for a very long time. Hang in there. I hear there are some promising treatments in clinical trials.
I have a stimulator implant with the leads on V1 & V2. It will be 2 years at the end on June. It has been a great help, i was at my max with medication and still able to work. With my medication and stimulator my pain level was down to 1-2 on my pain scale and stayed there for the 1st year. in the last year my pain has been increasing slowly. I have changed my settings and still have relief. It was a life saver for me.
C.P.
2 Likes
Look at my posting on Cyberknife treatment (not Gammaknife)…
Want to thank you all for reply’s
So lost on what to do next sometimes. Really helps to talk to others about this. Others even most docs have no clue.
I am a 73 year old woman with constant bilateral facial and intraoral pain and numbness that started suddenly in November 2015. The numbness runs from midscalp down to neck and from ear to ear. They saw trigeminal nerve inflammation on an MRI, so diagnosed me with trigeminal neuropathy. They have not been able to determine the cause of my trigeminal nerve inflammation which has now disappeared from subsequent MRIs. My rheumatologist thinks that it is an autoimmune condition. In April 2016, I was suddenly struck by polyarthritis. The rheumatologist thinks it is rheumatoid arthritis, although tests can’t confirm that. I am taking methotrexate and hydroxychloroquine for that. Those medications have put me in medical remission as far as the arthritic symptoms of terrible pain and stiffness go, thank goodness, but have not touched the trigeminal neuropathy. The rheumatologist can’t pin me down to a specific autoimmune disease, so after several tentative diagnoses, he has decided on connective tissue disorder.
I have a horrible time chewing because my mouth is not only numb, but also ultrasensitive in the mucosa areas. Speech is affected. Taste has been severely affected. Saliva drools out. Nose runs most of the time. Face looks weird. Luckily, the pain is not that of trigeminal neuralgia. I so pity the people who suffer from that condition.
When this first started, I was put on Tegretol. It ended up almost killing me. I have also tried prednisone, gabapentin, nortriptylene, amitriptylene. Nothing has touched the neuropathy. The neurologist and rheumatologist said that they have never seen a case like mine and appear to have given up trying to help me. So, I bumble along taking my hydroxychloroquine daily and injecting myself weekly with methotrexate and toddling along to my monthly blood tests to watch for medication damage.
Every time I spot the words trigeminal neuropathy online (which has been 3 or 4 times) I get a breath of hope that I am not the only one suffering from my exact condition.
Chris, who diagnosed you with trigeminal neuropathy? Is yours bilateral? What areas are affected and how? Did you have a brain MRI? What meds are you taking and have you ever had any relief at all?
Good Lord! And bless your heart! Your story has me cringing! Did you know that in Canada ( I have not found statistics for the USA yet), Veterinarians receive six times as many hours of education on pain than do doctors or nurses. Doctors are ill-equipped to handle pain especially pain like you’re talking about. They used to have shut up pills to make people go away but congress decided their medical diploma was more valid than the physicians and ruled that they cut down on the use of opiates. I’m so mad I could scream!
There is hope. I promise you that there is hope and that I’m trying my best to find a way to get the word out without violating any rules or crossing any lines or endorsing any criminal behavior. I get so frustrated because the Constitution is very clear, we all have a right to life. That is not to say we all have a right to be in a plastic bubble hooked up to life-support being fed through a tube that my friends is not life. The constitution further says that if a law is unlawful or unconstitutional, non-constitutional or anti-constitutional it is null and void but try telling that shit to the judge!
I’m very curious about your methotrexate. Those first four letters wouldn’t indicate the methyl group was present would it? Did you know that at the turn of the century the police officers in New York City had to turn in their service revolvers from .32 caliber weapons for .38 caliber weapons because of the “Cocaine Crazed Negro"s superhuman strength? Of course that was just powder cocaine. When crack cocaine became the craze it was the most addictive drug modern science it ever seen. It caused users to have superhuman strength! When the hell are we going to grow up and look at facts based evidence and our choices of treatments and medications to use to help us not be in agonizing pain?
Yesterday I went before the judge I was awarded more time to figure out what I want to do with my situation. My situation is caused because I found something that made my pain stop completely for three years solid but it’s not legal. So now I can do drug court or I can take a plea deal or I can go to trial. I don’t know what drug court entails other than at the end of it all if I was successful there would be no record, I have no idea what no contest would include and I don’t know what I’m facing if I were to go to trial and lose! It’s one of those “You’ve got to pass the bill to see what’s in it” things. Tomorrow I’m filling out an application for the doctor to see if he and his office manager will except me as a patient - he does Botox and he prescribes what I’ve been using off the street but except for in pharmaceutical form. Wish me luck. The second that I get a script from physician I will be screaming it from the hilltops.?I may even climb up on my roof and scream “this is the face of ___________ free from pain for three full years. No unpleasant side effects!”
I’m sorry, I’m ranting, again. I got to go beat my head against a brick wall for a little while - good luck keep an eye out for me.