Can atypical bilateral TN come in flares? I’m not diagnosed yet. Neurologist appt is 7/31. I feel like I have some level of pain on a daily basis but sometimes it’s so mild that I don’t even notice it. Those days I wonder if it was really that bad and if this is all in my head. Ive had these flares for many years. The last flare has lasted around 2 months, with fluctuating intensity. Recently I’ve had a break from the severe face pain, but its been replaced by migraines and neck pain. If it isn’t one thing, it’s another. When I have the breaks from the face pain it makes me question the severity and my sanity. However i routinely say “i could easily go to the hospital right now, my face hurts so bad” I can’t even enjoy a almost pain free day anymore because I am so focused on what changed, why pain yesterday and hardly none today? What could it be? Is it this, is it that? Is this the “pre TN stage” I’ve read about? I just wonder what everyone’s experience is and if anyone has been through something similar?I have also noticed when I get canker sores, which is frequently, my pain is much worse. Wonder why that is?
You said exactly spot on to how I feel right now!! I have the same thing and was doing pretty good and now all of a sudden I have the worst flare up. I want to scream!!! I have had times when the pain is barely there like you said but usually it’s a constant pain that fluctuates and I think the heat right now is what caused mine to flare up. My doctor just wrote me out a perscription for pain. I am praying it works. I hope you can find relief. It is so hard to find a dr who has any idea how much this hurts. It is frustrating!! Let me know what you end up doing. I hope something works for you! Thanks for sharing your story too.
I had the intermittent burning for years also. Some days I hardly noticed it, and some days it would lay me out. I always attributed it to another condition I had, so never sought medical attention. In January 2012, it became severe, and the shocks started. It took 6 months to get a proper diagnosis of TN, and then it started on the other side 4 months later. Since I started Gabapentin in July 2012, the burning pain is MUCH less severe, but I do know when the medicine is wearing off. The shocks are much better too. Not very frequent, and much less painful.
That being said, I think just about anything is possible with this disorder. I hope you have a good appointment with the neuro. Keep,us posted!
Christine
That's funny you mentioned the canker sores, I got some but it may have been caused by the tegretol which also caused me to have a rash and pain in my side. Anyway back to your question, I have had what you have. I have shocks in my face then they subside, then a burning feeling (which is almost constant with me now) then I get the big shock on the top of my head, and then I have eye jabbing pain, neck pain and migraines too. I noticed when I get a big shock lately it feels like storm clouds are gathering in my head first and then kapow! I doubt any of the pain you felt was all in your head, sometimes I will forget certain things that hurt or tend to make them less than what they were and need to be reminded by people how bad it was
hey sara--
sounds like me for many months!! pain--no pain-- aching jaw-- fine... in between the pain you feel so normal !! I thought it was a abessed tooth-- but logic told me it would not come and go like that... mine was more TN1 type. The dental x ray did not show anything..
Then about a month ago i had a classic attack--severe scary "am i having a stroke?"pain...all three branches of the nerve-- and then for days couldn't eat or it hurt, sometimes talking, sometimes riding in the car..sometimes for no reason...it hurt enough to make me nauseous... and it ached all night long too! Looked the syptoms up online and TN popped up. Freaked me out...I was asking all those questions and in a panic based on what I saw online... but fortunately my doctor was really receptive to what I thought it was and pretty much did what I suggested from this site-- he loaded me up on painkillers (if I needed them for a bad attack) he gave me steroids-- also-- if I needed them...and put me on tegretol (epitol-generic--really cheap at walmart)
Good news is that tegretol really does the job--for a lot of people! I know everything can change in a day--but for now --I am having very little pain... sooo...I hope you can get on a med that helps for a long long time!! some people are good for many many years-- go in to remissions, etc... also-- message me if you want some good MRI info if they send you for one... hope you get this under control ASAP!!!
I also have those kinds of headaches. I think the best way to describe them is like a cluster headache. The only thing that takes that horrible pain away is imitrix but then I am a bit loopy all day. I am on gabapentin 600mg anywhere from 3-7 times a day. Everytime I go down on them I end up trying to play catch up with the pain and its not easy at all. I have tried most all of the other anticonvulsants and most work but the side effects weren’t worth it. So now I am on gabapentin, diazepam, and hydrocodone. My face burns like a fire and my cheek bones actually feel broken. That is how the last few days have been however 3 weeks ago I was doing great managing the pain. It is not your imagination and it is hard to find a doctor that believes in bilateral or atypical trigeminal neuralgia. It seems like I am the one that does all the research and then I am at the dr’s mercy. It’s hard not to panic when the pain gets so high. I would love to hear how any of you handle the constant burning pain and the flare ups. Hopefully we can all find something that works for us.
Katie
Hi Sara,
I do have ups and downs but they don't sound quite as extreme as yours. Mine goes from a 3 -6 or so, but can vary from hour to hour and less day to day. At best it's a mild pain but still enough to make me quite aware of it, at worst it feels like my face is on fire or a dense ache.
I however have Trigeminal Neuropathic Pain brought on by trauma causing nerve irritation, and is not bilateral. I can't say whats going on in your case, but the canker sores with the pain is an odd symptom . So I would definitely tell your neruo about them so they can make sure there isn't some sort of underlying autoimmune disorder. Hopefully they can find out whats going on with the test, and treat it, and that leads to less pain!
Sara I know EXACTLY what you're going through. I have the same thing - the dull ache that's daily, almost like your face is "bruised" - and then the sudden episodes of extreme pain. I thought it was in my head too - thanks to some doctors I saw. I have read that this is how TN starts. There is a gradual build up of symptoms that gets worse over time. The good news is you are NOT alone and you're not imagining things - or else I'm imagining them along with you. I have faith that over time, I'll find the right medication and hopefully I won't even need the pain killers as much, and the preventative non narcotic meds can manage it.