Monday, July 12, 2010

An open question for Topamax users

Spoke to my orafacial pain Doc today, who said he didn't think Topamax would help, though I've heard from several of you that you DID find relief so I want to pursue this. His questions were what does it help with, specifically -
neuropathic pain? Tongue burning? Face hurting? Teeth aching? migraine headaches? etc... any info you can provide? You can also email me privately if you choose.

Any help you can give would be much appreciated so I can get him to write a script and give it a try. The gabapentin seems to have very little side effect, as I'm taking a very low dose (200mg/day) but I still am in a good deal of pain every single day, and want to explore anything that's been working for others!

In terms of drug interactions, I still use Clonazepam for the burning tongue but spit it out vs. swallowing it for a more topical than systemic effect. I am meeting with the dentist who did this to me today. I'm now at seven months post-injury and counting. How's everybody else doing?



  1. Funny world we live in where we must search high and low for a treatment then try and convince our doctors to provide it. I was at my wits end and my doctor said that he had sent an older patient with bone cancer to a pain clinic and she was prescribed Topamax and it helped her. It helped with the burn. Her are some reviews from people who have used it. They are worth reading as some are off label usages

  2. This comment has been removed by the author.

  3. Kev- you make a great observation, as always!
    We have to become medical experts.

    Dr. feels Topamax is really for migraines not neuropathic pain, and worries about me losing more weight - so I'm eating like a pig now before I start LOL. Neuro can't see me til Aug 3rd

    I hate to say it but the only SURE relief I get is with hydrocodone in the smallest possible dose they dispense (then cut in half) depending how bad a day it is. Some days (like today) I take none at all because I'm doing o.k.; many days just half tablet - on a really bad day I need another half by evening.

    Lately it seems I have 2 good days, then 4 or 5 bad ones, then 2 good, and so "good" I mean the nerves ache, but the burn is mild, and I am not completely distracted by it, I go about my daily activities with minimal meds.

    That script is almost used up, so I'm searching for another pain reliever that works as well; haven't found one yet. Lyrica comes the closest, but it made me loopy, and research online shows lots of complaints and lawsuits from this stuff. Of course, you could say that about most meds, I guess...

  4. jane,

    oh dear, am i sorry i have neglected your blog.

    get yourself to a pain management doctor or a neurologist who deals with trigeminal neuralgia. your symptoms are close enough to the atypical form of TN, and you need to be seeing a practitioner who knows how to medicate you. ditch this doctor; he does not sound knowledgeable. topamax is used for neuropathic pain and trigeminal neuralgia. weight loss is not evident until you get into high 400mg. i take 125mg and i enjoy a healthy appetite.

    topamax works on multiple CNS functions. it tones down glutamate a chemical which fires off nerves. it works on the sodium channels which get screwed up in nerve injury and need to be regulated. and it works on GABA which is a chemical that quiets down the nerve. all these things can work in your favor to give you pain relief. you may need to titrate up to a dose that gives you unpleasant side effects before you get relief; this is always the !@#$ catch with these drugs because they cross the blood brain barrier. researcher around the world are trying to develop drugs which dont do this but until then we have to walk around a bit dopey.

    topamax has a couple of red flags you have to watch out for when you take it. they are rare but serious when they happen. one is sudden onset glaucoma. any eye pain, quit the med and go to the ER stat. another one is kidney stones so make sure you are always drinking your water and take a full glass of water with every dosage. like i said, rare but possible.

    topamax was designed for epilepsy but in the early 2000's was marketed for migraines and it became trendy. the fact that your doctor is still touting this proves to me he does not do his own research. get rid of him. get to a neurologist. the best scenario would be a pain doc who IS a neurologist.

    if you combine the nortriptyline at a low dose (i know you hated it but i am talking 25mg) with topamax, beautiful things may start to happen. the two drugs synergize with each other and may offer you some much needed comfort.

    listen to me. i do my research. you have a neuro appt aug 3rd yes? tell him you have trigeminal neuropathic pain and you want to try other options. there is also savella, keppra, cymbalta. ask him about these. keep me posted.

    also, we need to talk in more depth about our injuries; we have similar symptoms.


  5. ps. describe the burn; fire, hot pepper, sunburn, sting? i was telling kev i ate a hot pepper the other night by accident and my tongue burned like it like that? does your face burn on the outside? a patient told me her burn feel like a lighter being held up to her gums.


  6. Kritty-
    So glad you are back - you are such a valued contributor here!
    I will see how I can adequately describe the feelings.
    The tongue: ever spent all day in the sun without any sunscreen? Ok, it's kind of like you've somehow really sunburned the heck out of the edge of your tongue. Some say like the burn after piping hot coffee that normally goes away in a day or 2, but it just never goes away; some say like a rugburn; mine's more like it's been scraped along the sidewalk. So weird.

    The nerve pain in the face is more complex; all I can think of is like a hot poker being pressed internally, where the upper teeth are embedded in the gums.
    My whole head is still sensitive to touch, from upper jaw to temple, left eye, even the top of my head but ONLY on the left side. It still smarts to wash my hair, apply makeup, wear sunglases, even scratch on itch on the left side. Crazy. My teeth are very sensitive and achey most days, but only on the left side of the mouth.

    ALL of these feelings are worse in the afternoon and evenings. Mornings are blessedly quiet until I get active and moving.

  7. jane, you poor thing. this is no quality of life. you need proper medication. describe this in full detail to your neurologist. ask for a thin slice MRI/MRA with contrast to rule out vascular compression. let him prescribe you some meds for a trial run, then get a referral to a competent pain clinic. dont let him give you the follwing:


    these are old drugs used for TN. tegretol actually works quite well for people with classic TN, but at a costly price. it makes people very out of it; some might say a zombie. also, the liver can be fatally compromised.

    tell the neuro you want to try contemporary medications....topamax...keppra...trileptal is tegretol's sister drug, potent but less toxic, you could try it and see. cymbalta is a newer anti depressant which is being marketed for neuropathic pain. and you could always do two low dose meds to synergize instead of one high dose med.

    do you have any numbness anywhere (or did you?) a referral to a microsurgeon may be a possibility to see if there is a chance for surgical intervention.

    have you seen this neuro before? do you like him? does he have experience with facial pain pts?


  8. Maybe the way to describe is more like an internal bruising which sometmes burns - I kind of feel like a prize fighter that's been beated about the left side of the head from the inside out. The right side is completely normal, thank GOD.

    Thank you for the great advice on meds, I am going to take this info with me to my visit. Apparently this nuero only comes to the orofacial pain clinic once a month so I have a short opportunity to make my case. I agree with you that the other doc, though kind and caring, is simply not up to speed with the latest treatments or perhaps doesn't have enough depth of knowledge to recommend anything but his tried and true methods. Nothing like being a f-cked up guinea pig - yay!! (sarcasm)

  9. hey jane,

    how did the neuro visit go?