I'm new to TN and have a few questions that I'm hoping csomebody can answer. I'm not sure which variation I have yet as the ENT, family Dr. and neurologist all call it something different. I am going back to the neurologist after my MRI so hope to ask more questions then. I do NOT get the electric shocks but have face pain that runs along the trigeminal nerve so I'm assuming this makes it Atypical TN or Type II ... does that sounds right? If so, does it progress to Type I?
I have noticed that some days I am in severe pain and others I barely notice it ... is this typical of TN? The reason I ask this question is that I was in SEVERE pain the other day and ran to my doctor for a prescription of Tegretol and now today the pain is barely noticeable so I'm wondering if I should take my first ever dose or not.
Thanks for listening and I hope you're having a pain free day :)
A lot of newbie questions are answered in our "Face Pain Info" tab in the menu above, Nancy. But to address yours here: If you don't have the stabs but instead have constant burning, aching, boring pain, then your diagnosis is likely to be either Type II (Atypical) Trigeminal Neuralgia or Trigeminal Neuropathic Pain. The latter is a general term assigned to face pain that appears to be associated with MS, dental work, or any discrete mechanical trauma to the face. Some patients see a progression to Type I (classic or typical) TN and some don't. It's not always clear why the character of facial pain evolves and changes over time.
Pain can fluctuate from day to day or even minute to minute in TN and its variants. Although it sometimes goes into remissions of days, weeks, or even months early in the course of the disorder, it usually comes back if you've ever had this type of pain before. As a general rule, physicians try to control this pain medically as soon as it is recognized. Left untreated over time, it can become more resistant to medications whenever they are used. If at all in doubt concerning the advisability of taking your prescribed medication, please call your doctor's office and ask for a telephone consult to confirm his or her judgment on this question.
Yes, i would start it ..thats what i did had pain then it stopped so i didn't start the med then when the pain came back WOW !! it was pain in the ear ,jaw,teeth, ...I wish you luck they have already increased mine from 150 mg daily to 300mg daily which i know what is still a low dose ..i'm on TRILEPTAL it's lower in side effects....God Bless
Tegretol is most effective for Type 1 pain, aka "the shocks." If you have a constant, aching, burning pain, I'd recommend you talk to your doctor about taking a tricyclic antidepressant, such as Amitriptyline or Nortriptyline. It made a big difference for me.
Yes, you are correct in that your symptoms do sound more like Type II TN. If you haven't already, I invite you to join our subgroup. Sometimes it progresses to TN I. Each case is different. A lot of factors, which no one can know come into play and it's anyone's guess. I hope you are spared having combo symptoms.
What you describe sounds like what my condition started out being.
I am glad to hear that you are finding some help with Tegretol. Unfortunately, it never worked for me.
Wishing you a no pain or low pain day, as well as compassionate, effective and informed medical care along your journey with your condition.
crystalv, I have a few health issues and it's difficult for me to keep it all straight. I have Type I TN and I just need to ask, "Is Tegretol one of the meds that carry the risk for possible liver damage?" I know that a couple of them do, but forget which ones exactly. Thanks, Rick
crystalv said:
Tegretol is most effective for Type 1 pain, aka "the shocks." If you have a constant, aching, burning pain, I'd recommend you talk to your doctor about taking a tricyclic antidepressant, such as Amitriptyline or Nortriptyline. It made a big difference for me.
Tegretol has a low but non-zero risk of causing liver problems or suppressing bone marrow. It is also sometimes associated with Vitamin D deficiencies. If this is a concern for you, Neurontin might be an alternative. It is metabolized outside the liver and seems to have fewer side effects for many people. Trileptal also has fewer side effects (though I forget where it is metabolized at just this moment).
Yes, Type II aka ATN. I have this. When mine was first developing mine, I would have days of no pain, then severe pain. Then no pain. When it first came on, I had a few weeks between each episode. Eventually, by 4 months later, I was getting an attack every day. I am now in a period of good control by taking gabapentin and trileptal. Controlled enough I think I can work again. :)
Please take those meds. They take awhile for them to build up in your system. The attacks are only going to get worse for you as time goes on. I know that most people believe when they are first diagnosed that maybe it is a mistake, maybe they don;t "really have it" or "don't really need the medication." This just prolongs the issue.
When my Neurologist worked with me, he said the medications the first year are crucial. He has had patients go into a remission from taking them during that first year. Of course, that wasn't the case with me or obviously anyone on here BUT you could be in that very small percentage. And like everyone else says, as this continues - it gets worse. That is what happened to me over the course of only a week until I was in on my knees crying in pain having my kindergartner help me through it because I couldn't think properly. Meds are good.
When my Neurologist worked with me, he said the medications the first year are crucial. He has had patients go into a remission from taking them during that first year. Of course, that wasn't the case with me or obviously anyone on here BUT you could be in that very small percentage. And like everyone else says, as this continues - it gets worse. That is what happened to me over the course of only a week until I was in on my knees crying in pain having my kindergartner help me through it because I couldn't think properly. Meds are good.
I had Type I and II, both the shocks and the constant boring pain in my lower and upper jaw. Sometimes to my eye and temple . I had the shocks first, then the boring constant after about 8 months was added. How lucky am I. LOL I too had days of no pain, but as my neurosurgeon tells me, this is how TN usually works. I can tell you that in my case I had Type I that progressed into Type II also. Bummer. Both are just terrible. I don't know if this works in reverse.