Hello I have been recently diagnosed with this dreadful disease, I have been reading your forums for a few weeks before I decided to join the frey. I just want to thank you all for being here. I am comforted in knowing I am not alone. My neurologist has me on 300 mg of Gabapentin 3 times a day. It has kept the pain manageable for the most part averaging only 6 or so episodes a day until yesterday. I have had over 20 episodes a day in the last two days. Are these flare ups normal?
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Unfortunately yes, flares happen for no reason and are considered normal. I also take gabapentin with success and use a lidocaine patch to help with flares.
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Welcome Amanda, you are definitely not alone!
It is interesting that you are suddenly having a flare up. You might want to sit down and think about everything that has happened over the last few days. What did you eat and drink? Are you particularly stressed emotionally or physically? Have you taken any unusual supplements or medications? It could be a random thing, but it also could very well be triggered by something you’ve done.
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Hi all. After years of complaining about feeling I have a hot poker sitting inside my mouth with no relief from traditional dentists or doctors, I accidentally found this forum! Thanks for being here. Recently I had to change primary care physicians. When I went to my first visit with the new doctor, I went armed with the idea of atypical trigeminal neuralgia to explain my awful symptoms. After many pulled teeth and expensive treatment for TMJ disorder (which I do have as a result of osteoarthritis deteriorating those bones), the doctor agrees that ATN is a likely culprit. She put me on 200 mg of carbamazepine 2x per day and suggested a neuro workup. The carb worked but gave me awful side affects so it’s now cut to 100 mg 2x per day until I get used to it. My chiropractic neurologist (there are only 1000 of them in the country) did full testing that concludes the need for ATN treatment. Threads in here led me to topical solutions – mixing generic Aspercreme+generic Ben Gay+Capsaicin. It’s giving me quite a bit of relief. Tomorrow’s goal is to get the primary care physician and the neuro talking to each other so my treatment regimen is coordinated. Wish I could get rid of the annoying and sometimes painful feeling of ear fullness…but having the jaw, facial, and hot poker feelings dissipating is a gift. Should I expect to have frequent breakthrough pain forever or do some of you get long-term relief?
I have seen that a couple of different people on here use the patch. Can you tell me a little bit about how you use it? Desperate. For some relief.
Ziggy thanks for the input. I have been tracking my episodes, but your right I should be tracking what is going on in my world and what I am eating and drinking Etc. I think I am going to need a bigger journal. Thanks again for the tip. Hope it will provide some insight.
Seasonal changes cause flare-ups for me. Severe thunder storms, temperature changes also cause flare-ups for me. Changes in stress level, new job situation, new demands at school, etc. can also cause flare-ups.
Hang tight. Sometimes it gets better. Remember that many medicines when they are new to us, cause bad side effects. Some of these fade with time.
I am very selective about which people I tell about my symptoms. Some do not understand, having never heard of such things before. They assume that I am faking. I do not share with them anymore.
These are just tidbits from my experience. I hope that some of these help.
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I was wondering if any one has had a history of gritting or grinding their teeth…?
Amanda sorry I missed your question abt the patch! I can’t encourage you enough to try it. It’s a topical anthestic available at 5% by prescription or 4% over the counter (salonpas). I cut a strip about an inch wide and the short length of the patch and put it along the branch of the nerve that’s flaring, or feeling like it might flare for that matter. Directions on the box are 12 hours on,12 hours off but that’s if you’re wearing the max nbr of patches all at once. My doc and several pharma (I work in a pharmacy) agree longer than 12 hours when using such a small strip is OK. It’s been wonderful amazing how did I live with out it for me. I now carry a patch and scissors every where.
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unfortunately as far as breakthroughs, some people will hit the magic drug combination and will have long term relief but must continue the meds. Others like myself, can have brain surgery and still have breakthroughs. I think I’ve sort of adjusted to the pain or know the triggers, like sucking a straw, puckering to kiss, stress, anger. it’s amazing and sad. you might want to research Gamma Knife surgery (sounds worse that it is) or Micro Decompression of the Trigeminal nerves. Good luck.
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I also missed the questions on here somehow. I use both the topical treatments directly on my gums (via a Q-tip or green rubber tooth pick), as well as a lidocaine patch.
For the patch, I cut a section that is roughly 1 1/2" square and place it on my upper lip and beside my nose. Even though the pain is entirely in my mouth, this seems to provide quite a bit of relief. I only use it at home (too embarrassed to wear in public), when things are pretty bad.
I also use a soft mouth guard every night. It seems to distract and settle the nerve quite well. I did obviously grind my teeth earlier (wear on teeth shows this), but I don’t think I do now. I’ve got a new soft guard on order and will report back how that works out, as the OTC ones are not very comfortable.
I had a hard acrylic one made for use during the day, but after only a week my dog managed to get a hold of it. It was rather uncomfortable but helpful for times when I had to talk a lot.
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