I am pretty new to the support site. I live in North Louisiana. And I am having trouble finding a doctor that knows how to treat TN. I am pretty sure that mine happened from an accident I had a month ago. I tripped and slammed the right side of my face onto concrete at Target. My symptoms first started two weeks after the accident when I would smile or grimace. Then progressed with throbbing of my cheek, felt like someone was stabbing in my eye...my nose swells.....I swear I could be Owen Wilson's sister in the afternoon.....Then I get these horrendous headaches.....I have Migraines anyway that I have had for 20 plus years. I am a medical coder and can hardly stand to look at my computer when this hits. So this morning I accidently hit the right side of my face.....So the throbbing has started.....
Also have ADD ...so if I jump around that is why ...please forgive me....I can't find any doctors that we have that treat for TN here in North Louisiana.....Any suggestions? Also have TMJ dysfunction....
Does anyone know if you injury this particular nerve will it heal itself or will I have to live with this forever?
You may have to cross a state line! I went from Missouri to Kansas to get my neurologist to diagnose.... Then a year later flew to Michigan to the top surgeon to make it go away.
Best way to manage this progressive disease - if you have it, is to get started skimming thru the book
"our bible of TN'
"Striking Back" by Dr. Ken Casey
Get a highlighter out - and what you want personal perspective on - mark it up and come here and ask!
You can go up to the doctors tab and see who we put up there - some are surgeons - some are neurologists
Usually first step is to do a MRI to rule out brain tumor or MS or something else.... Mostly cannot see compressed nerve on MRI - so it's a tool to rule other similar things out.
If it's been a month and you need immediate pain relief - ask your regular doctor for lidocaine patches prescription -- cut them small and put on face for reduction or elimination of pain - if costs too much - try the lidocaine cream.
Go to Google Images: Type in Trigeminal Neuralgia
Then do it again but put in Atypical Face Pain
See which images better match your pain
Don't want to overwhelm you - most doctor/ gp / neurologist will trial you on an antiepileptic drug--- the meds in this family can really take the pain away - but make one tired, confused and just aren't much fun = why I flew to Michigan for surgery!
If there is stuff you want to remember from here - print it off. Even the google images.
If you are not medicated for your ADD - the typical meds we take will make you more unfocused.
I actually have lidocaine patches … I will try them ASAP!!! I am 150 mg topamax and I take .5mg of klonopin at night but I have a toddler and I need flow function if I needed to…I am on Vyvanse 60 mg but when I have the attacks like today I can’t think of a single word… I did have MRI done Friday and it was normal except that I have chronic ischemia of the deep white matter if my brain. Which means I have not enough blood supply going to that part of my brain… At 38… I can’t imagine later in life!! At least that is what internist said …thank u for info!! Had my husband put me on a small lidocaine patch ony face! Thanks you again!!!
Have you gone to doctor to see if there are any bones broken or fractures? Saw you had an MRI, but if that was just of the brain that might not catch it…. . Sometimes a nerve might be compressed or gets irritated by bone if something is broken and got moved around. Pressing on it would increase the pain then.
If you haven’t gone to one yet and they find one, they can reduce the fracture and could let the nerve recover and relieve pain (example)
Funny, topomax is usually not first line med - but like you said, you need somebody who HAS TN patients
if you HAVE TN : (
Please Let us know if the patch helped...that way we can help others as we help ourselves!
Few people get a rash and don't have the luxury of the relief from them.... For some people they just don't do a thing.
You have to be ruthless in your pursuit of pain-free ! Oh, I meant Pro-Active LOL
You are the customer - if a doctor doesn't feel right, or have enough patients with good results - move on please!
Many take a little Klonopin at night or during the day --- I've been on it for years for restless legs, just a side benefit that it actually helps reduce stress, which reduces pain.
TN pain is aggravated by stress, and stress is aggravated by pain!
I have never heard of your white matter issue - is there a treatment for that? Have you had second opinion?
I don’t have much to add that would be helpful but I remember an incidental finding on my MRI that was something to do with white matter, can’t for the life of me think what it was.
Anyway…my neurologist said it was consistent of having a 30 year history of chronic migraines. Maybe yours is a similar thing??? Hopefully you can see a neurologist and get it sorted.
Best wishes and I hope this turns out to be a temporary thing.
Thanks you guys!! I on Topamax for my Migraines … I was getting them daily… I have had a Ct of face/ Brain- no broken bones… I do have maxillary hairline fractures that should not according to the physicians I have seen cause the throbbing … Headaches… Pressure behind my eye… My optic nerve is thinning…nobody knows why… I seriosly want to go on the medical mystery show …Here’s hoping hoping for all of us to have a better day!!!
Welcome, you have found a Great group! Great information and a place where others truly understand. Now that I see comments on “white matter” on MRI’s, I remember my Neuro saying “we see a little white matter”, not sure what that means? I’m told I have ATN. Since you have migraines, have you tried the P-Stim for pain. Non invasive, goes on ear?
You might check again on that hairline fracture in maxillary area. You might consider ENT doc to look at that. Just an idea. Hoping you feel better, Daryla
Thanks Daryla… I have been to an ENT… Told him about the fractures showed him pictures of my face swelling in the afternoon and my face throbbing and he at me like I was nuts! I have been pretty frustrated!! Getting referred to a neurologist who is supposed to be the best! Do you guys ever have arm pain associated with any of this??