I am new to this forum, so hopefully these questions have not been asked.
I will start by saying that I have a GP who has NO experience with TN. I told her what I thought I had and she agreed. She has referred me to a neurologist who I hope is better than the one I saw 15 years ago. I had an MRI. When I saw him, he made me touch my nose, walk a straight line, and then told me I had ATN. I have asked to see a different neurologist.
Question #1: Does anyone have a similar experience to this? I almost ALWAYS feel a "sensation" around my lower right molars. It is not a pain, but I know that if I touch it, or eat, or talk, or sometimes even drink, it will flare to pain. If I leave it alone and don't touch it, I can have hours of pain-free existence, but as soon as something bothers it -- a touch, eating, talking too much -- it flares up into either pain or the typical electric shocks. Is this common to always "know" where the "pain zone" is?
Question #2: My one eye sometimes waters like crazy. Is this a tegretol (carbemazapine) side effect?
Question #3: I began to experience the onset of TN in early December. Over Christmas, I went to Cuba and the TN completely disappeared. I could eat what I want, sleep on both sides of my face, etc. When I came back to northern Manitoba and -40 weather, it came back with a vengeance. Does this mean that I need to live in a hot place? Has anyone had a break like this?
Question #4: My Doctor prescribed 200 mg of tegretol twice per day. She told me that I could add another 100 mg in the morning if I needed to. Then she went on holidays. I have added 100 mg in the morning and evening. Now I am thinking that 200 mg every 8 hours would likely be better than 300 mg 12 hours apart. I find that by the time I take my evening dose my face is crying for it. Will spreading it out over the day make a difference?
Yes, I had a constant electrical hum around my gums, soft palate, and teeth and a sensation of them being being “strangled”, which was made worse by the things you mentioned. I’m on a lot of meds now and they do help. The constant electric hum and the strangling feeling is gone but I can still be triggered into razor-blade-like pain and intense burning from probing those areas with my tongue or if food gets nears them, or yes, sometimes even drinking body temperature fluids.
My eye doesn’t tear up but I am not taking tegretol (taking gabapentin and trileptal and have just started nortriptyline).
Cold is a top enemy! I am bundled up all the time. I’ve lived in the north before and visit Montreal regularly and it poses a real problem. Not so bad here on the coast of Bc but I’d much rather be in the Caribbean
I take the gabapentin 4x a day and need a tramacet to get over the hump of the afternoon. Also take extra if I’m going out and will be talking or exposed to a lot of sound. My pain builds though the day too.
It rarely gets that cold here in Houston, but when we have a freeze I have to stay inside. Super windy days I try to stay inside also. I can tell my mom all the time that one side of my ALWAYS feels different than the other side even if I’m not having an attack. I have both type 1 and type 2 TN. I constantly have a dull pain on my cheekbone. On good days it just feels like I have large sunglasses on that just touch my cheek there so yeah, I think quite a few of us can feel our “pain zones” even when they are not in full blown attack mode. I take tegretol and do not have the problem with the eye watering. I take 200mg 3 x a day right now. I’m also on gabapentin and because of my recent surgery and some complications lots of pain killers as well. I find for the TN my gabapentin probably does me the most good. I’m at 600mg 4x a day on that. I think you need to find a neurologist with experience with TN immediately. Having great doctors makes all the difference. Welcome to the forums. I’m pretty new here too, but it has helped SOOOOO much to have an outlet for my thoughts and have a group of people who all understand and have walked the same walk I’m walking. I feel 100% less crazy and alone here. I hope this place does the same for you.
Welcome Cheryl,
All of doctors do not have experience with patients with TN. I have read that if they see 1 or 2 patients in their career with this they are lucky. Some people have to go thru many various specialists to even get to a diagnosis. I live in New Enland and the cold is killing me ,i have been in exaserbation since the fall. Some say its the cold, some say the heat. It can be triggered from chewing, eating, talking. Its different for everyone. Each branch for each person is also,different. The tegretol dose is on the low side, so maybe thats why you may not be
getting enough relief. Once you see your doctor he will let you know to increase it. There are also different combos of meds . I take 200mg/tegretol four times daily and elavil150mg a bedtime. Along with other pain meds. What works for one may not work for another. Your doctor will guide you with that. My pain worsens at nite also its worst time of day for me. The slightest cool air in my house triggers my pain. I have been sleeping with a heating pad on my head for months just to keep the cool air of my face and head.
I hope this helps abit. I had my MVD left since 17 months ago,unfortunately for me it has returned but for 6months it was better after surgery. Mine was from a vein compressimg the nerve. I just recently was diagnosed with right sided TN. I would do the surgery again in a heart beat just to have the hope of being pain free Nd having my life back.
Dont be afraid to ask all the questions to your doctor. If your comfortable with her great. If you dont get what you need find another doc who will help you. Good Luck to you. There are alot of resources available on this website and people to talk to and guide you if needed.
Sometimes I have days where I feel my lower teeth, and know like you that if I talk, laugh, eat, drink etc it will set off the pain.
I don’t have the eye watering thing, but then we’re all unique in how we respond to meds or pain. ( I’m on 1600mg Tegretol XR (carbamazepine) . This slow release version of Tegretol works better for me!
I live just outside of Edmonton, cold snow etc and the cold air really affects my TN.
BUT, I’ve also spent time in warm climates and TN is still present. Any breeze from the ocean or wind of any kind affects me, sitting by a pool in +30C my TN still attacks…
I wish I could say moving somewhere warmer makes a difference, but it doesn’t. ( for me at least)
Tegretol takes time to build in your system, so finding the right dose can take awhile. I found the slow release version worked better for me. When I was at 800mg I would take 2 200mg in the morning and 2 200mg at night. Now I take 600mg in the morning, 600mg around lunch and 400 mg after dinner. ( I’m also on two other meds)
The side effects will lessen as your body adjusts, however each time you increase it will take a few days to get over the side effects again.
Talk to your doctor and have a plan in place on how to increase your meds when you’re not getting enough pain coverage. With Tegretol “they” usually say that between 600-800mg is where most folks experience pain coverage. But again we’re all unique with our pain and what works to relieve it.
I use a heating bag called the Magic Bag (any drug store, I got mine at Shoppers Drug Mart) that I microwave and that helps to take the edge off…
Can you get your gp to get you a prescription for lidocaine mouthwash and/or lidocaine patches for your face?
These can bring instant relief for many
Make sure any neurologist that you get - has TN patients - if not - keep going to the next one!
There are over 3,000 members here now! So if you want to know about a specific med/topic -- just put a word or two in the search box above....or ask more questions!
I took a poll recently about hot/cold weather = cold weather worse- but hot climate still pain for many - like a breeze from a blowdryer = owwww!
#1 I frequently feel burning/tingly sensations and sometimes a "tight" feeling. During those times, if anything slightly brushes my face, I will get zaps.
#2 I don't know. I never have that and I take 1200mgs a day.
#3 Yes you can get a remission for hours, days, weeks, months, or even years.
#4 Yes, you can play with your meds to find the right amounts at the right times. I was supposed to do 600mgs twice a day and it was TOO much for me. Made me drunk and sick. So I split the 1200mgs into taking 400mgs 3 times a day and it helps me to function.
