After ~8 years of being on Amitriptyline (20 mg) and having minimal symptoms, my TN has suddenly escalated rapidly. I am now on 40 mg of Amitriptyline and 600 mg of Gabapentin daily and still have shocking pain most of the day. My neurologist has been great about speaking with me over the phone but I am getting very tired with the constant pain. Before I approach the doctor has anyone tried Cyberknife lately?
Let me guess you dont have classic TN?
There is no clear vascular conflict on mri pressing on nerve?
Sounds like you have some sort of damaged face nerves… like my self …
There is bad news for us…
Surgical procedures for facial trigeminal pain are not so effective like those with classic TN… which are MVD candidates…
You can try cyber or gamma knife since you are in same position like me…
I have nothing to loose…
I’m in pain 24/7 which is 9-10 on scale.
I’m bring it down with high dose of carbamenzine and tramadol to a bearable condition. Although I’m still high on pain witn twitching, crawling , numbness tightness of teeth and mouth which I endure non stop. It’s horrible…
Very miserable and debilating condition.
It’s worse then most cancers…
At least in my case.
I did have an MRI maybe 9 years ago and it didn’t show anything wrong.
Thanks so much for responding. I am trying to get a picture of what my options are (other than more medicines) before I go back to my neuro.
Sounds to me like you got trigeminal neuropathic pain or atypical facial pain.
The best procedures for this type of pain is motor cortex stimulation or dorsal root entry zone lesioning.
But those are usually the last resort when everything fails to control intractable extreme pain, and are performed in only several neurological facilities.
Though not available for most patiens/sufferers
Thanks again. Will check that out.
I had Gamma Knife, guessing it is the same as Cyberknife?? It worked for me for about 3 years the first time and the 2nd time only a few months. It is a very invasive procedure , no down time as far as going back to work. It took a few weeks before I could tell it was working. I highly recommend it. Good luck.
My first gamma knife procedure was last fall and was not successful (ps: there can be brain swelling following the procedure that actually makes the pain worse; is treatable). My second gamma knife procedure was about a month ago and so far it seem like it may be working. I would recommend extra lidocaine at pin sites when needed!
Thanks!
Thanks!!
Hi dfw56, I’m so happy you’ve had good relief from the Gamma Knife. Can you please tell me if you have suffered any side effects? Dr. Linsky recommended it to me, but my neurologist said she does not recommend it because radiation can bounce around (even when delivered to a pinpoint target) and affect other areas of the brain, hearing, stability etc. I am hoping you have had no such side effects? Also, would you mind telling us the name of the doctor who performed your successful procedures? I’d love to hear more. Thanks!
Lukas13, I am so sorry for your suffering. It sounds similar to mine, which is present every waking moment, but usually goes away when I fall asleep (my only respite). Also, your pain level is somewhat higher that mine, so you truly have my sympathy. Does your pain level dissipate during sleep?
I have the same thing as you. I found the best doctor. Dr. Ken Casey from Michigan. He gives me lidocaine infusions. If you look him up online you can email him. He is great at getting back to you! I don’t know how I would have survived without him!!! Good luck and message me if you want to know more.
Katie
Hi there, see my feed… I kind of chronicled my moms journey with TN and her cyber knife treatment, definitely worth exploring. She is doing well, only takes one 150mg trileptal pill a day, down from 7 at the height of her zombie stage…wishing you the best , feel free to ask any questions
Cyber knife is different, no halo or holes, procedure itself is completely painless
Hi, I have classic on one side and non-classic on the other. I have found great relief with Sphenocath. I did a round of 5 (maybe 6) treatments and it made me so manageble for most of a year. There were a handful of bad days, but they were limited. Sphenocath isn’t typically done by your neuro, instead it’s done by your pain management specialist. It’s definitely worth looking into.
I had no side effects from the Gamma Knife, nothing your doctor is describing. I recommend this procedure.
Good luck
so sorry about your pain. mine is chronic atypical face pain. I seem to have tmj, nerves that need ablated what is your diagnosis. carbamenzine did not work have had 2 sinus surgeries and found my nose was broken right where it hurts. they have ablated 1 trigeminal nerve . hydrocoedene and klonopin opiates I want to get off of.
Hi Katie. Did your lidocaine infusions work for atypical TN or the constant kind that comes after nerve damage (which is what I have). My NS is suggesting lidocaine infusions, so I’d love to know what type of pain you had and how much relief you get from your infusions and for how long, etc. Thanks and I wish you continued relief!