Well, I finally made it to the neurologist this past Tuesday. Unlike my regular doctor, this one does not want to call it TN. He said I have all the symptoms, but the trigger and most have a known trigger that sets off their pain. Instead, he is calling it atypical facial pain with migraine tendency. If that is the case, I do not have the migraine symptoms either...no nausea, vomiting, dislike of bright light. I'm so confused now. What do I have? He couldn't explain the deep ear pain I have, but said he believes it does come from the TN???
I'm to go back on Nortriptlyne (sp?) and double what I was taking before. He said that it was interesting that while I was on Tegratol it helped, but I had to stop that due to hands and feet swelling.
So, what do you all think? Should I just wait and see how things go, find another neuro, I have no idea what to do. I am getting an MRI next month, but he didn't think it would show anything.
Your story sounds very similar to mine. I've been going through this for 10 years but was only dxd with TN 4 yrs ago. I get "regular" migraines and then I would get other ones that did not include nausea, vomiting, or photosensitivity. My biggest complaint was deep eye and ear pain (which IS from TN in my case). After years of it it started hurting my teeth and then my cheek, nose and throat. I spent so many years going from neuro to neuro because they would pump me up with all these different meds, from Depakote to Seroquel to Effexor to Neurontin, etc., to no avail. The first time I EVER felt some kind of difference was with Tegretol (but I an't go above 600mg because I get very sick from it). I feel that so much time was wasted because no one ever really listened to my symptoms and I ignored my gut feeling for their "expertise".
Go with your gut. If you're not happy with the answers he's giving you, see someone else. In my case, because it took so long to get the proper diagnosis, things got a lot worse. I'm only 30 but have been on disability for the past 7 years. It just plain sucks. I fortunately found a good neurosurgeon and I hope to get some of my life back after surgery.
I'm going thru something similar as well. My neuro has always seemed reluctant to verbally give me any diagnosis, but I always request copies of the report from my medical records after each visit, so I know that he was fairly confident about my TN diagnosis. That Dx was also recently confirmed by a neurosurgeon. However, after my follow-up today he wrote down a Dx of Atypical Facial Pain on my billing/checkout form. I'm not sure what to do with it. I feel hopeless and frustrated. I too will be adding nortriptyline to my medication cocktail. I'm keeping my fingers crossed that it might be the miracle I've been looking for. Good luck to you and keep us posted!
I have TN2 and have found that Trileptal gives me more relief and any other med I have tried. It is supposed to be as effective as Tegrotol without the bad side effects. Ask your neuro if he thinks that might help you. I take 600mg morning and 450mg at night as well as 50mg Amitryptiline. Might be worth a try.
I can say that I have no triggers for this whatsoever, the only constant I have is that the pain always starts around 3pm regardless of when I take my meds or get up in the morning. So for him to say that you dont have it because you have no triggers is bull.... I would start looking for someone who specializes in TN.
I thought it odd that he was discounting TN based on the sole fact that I do not have a trigger. I mean, I'm of course, not saying that I want TN, but I'd really like to know what is going on. Atypical facial pain, just seems like a technical way to say, I don't know what it is. I'll wait and see if the MRI shows anything before switching drs.
I had to fill out all kinds of surveys for both neurosurgeons I saw, they both knew I had it by the description. You cant make this crap up..but I guess some try, but those questionaires were used more than my mri to determine, the mri just confirmed I had it.
I wish you didnt have this either, hopefully you will get some answers soon
Well, I haven't been on in awhile, but wanted to update. My insurance company denied the MRI because I am (to them) not showing neurological symptoms like slurred speech. I called the neurologist who said to just wait and see how I do. I have doubled my dose of Nortriptyline and it is slightly better. It seems my ear pain is getting worse though. I am at a loss as to what to do.
I hate that insurance companies do this to us. VERY frustrating.
But KC is right: not all MRI's don't show compressions even though there might be one. Mine were negative yet when the NS went in for my MVD i had 3 nerves compressed by 2 arteries.
I am so sorry about the ear pain. Towards the end I couldn't stand the ear pain. It was affecting me to the point that I would walk away from family dinners and eat in another room because the noise would make the pain worse. I honestly can't believe I've had so much improvement since surgery. I hope you find something that works for you, Lauren.
Keep reading and posting - the more you learn - the faster you can guide your own treatment..... it's an unfortunate fact in a large percentage of us - most dr. don't know squat about TN -- LOOK at the doctors tab above and see if one is recommended near you. 2nd opinion can be priceless.
That sounds odd to me. Not everybody has known triggers, and some can not figure out what the triggers for pain when you first have tn, and then others still after years of having tn still don’t know the triggers are. This came from one of the doctors I saw up at OHSU. I will always say get another opinion if your not comfortable with the doctor or their diagnosis. Your insurance also may have denied the MRI depending on how the neurologist coded for the use of the MRI. You might want to ask your insurance company about this. I hope you get relief soon, and lastly if you have been off that medication for some time you will need to start on low dose and work your way up to the higher dose. Hope you have a great day tomorrow and it is pain free.