I have pain on both sides of my face, on the sides of my head, and in my teeth. I also get the crawling skin. I'm taking gabapentin (800 mg 3X/day), carbamazepine (200 mg 3X/day), and baclofen (10 mg 3X/day) and up until now I've been doing okay. Now I'm getting shocks in my teeth and in the back of my mouth. I'm waiting for the results of the MRI my new neurologist ordered. Does this sound familiar to anyone?
Yes many here
Get dr to get lidocaine mouthwash for you ASAP
Kc you always talk about magic mouthwash. I was prescribed lidocaine 2 percent viscous to use as directed. I never knew what as directed was. I have applied it directly to my tooth, since I have horrible burning there and have diluted it with water and rinsed with it. I don’t even know what the dilution should be, but whatever I try doesn’t work and sometimes it feels worse. I have googled magic mouthwash and there seems to be many different combinations. Can you tell me which is the mouthwash combo that you recommend?
Thank you Kc Dancer
I put it on my list for my Wednesday appointment. Hopefully, the MRI will shed some light on my condition. Dr said he didn’t think I had TN1. My symptoms seem to indicate ATN, but I still get shocks. Some just feel like two bare wires touching, others feel like they’re 4-5 inches long, very quick. Pain is bilateral, but no shocks on the right side.
Hi Liz,
Yes this sounds very familiar to me. I have bilateral ATN with some Type 1 type bolts mostly on left side. Everyone with the disease is different and many have overlapping symptoms.
From what I have seen most doctors are not even willing to diagnose Type 2, I guess unless something shows on your MRI. I have had two MRI's with contrast and without which have not shown anything.
I have had my ups and downs but have had a lot of success with Amitriptyline. I think people that have symptoms of Type 1 and Type 2 sometimes do need a combination of medication to help.
I hope that your MRI shows something concrete and will help you with your diagnosis and treatment.
Liz said:
Thank you Kc Dancer
I put it on my list for my Wednesday appointment. Hopefully, the MRI will shed some light on my condition. Dr said he didn't think I had TN1. My symptoms seem to indicate ATN, but I still get shocks. Some just feel like two bare wires touching, others feel like they're 4-5 inches long, very quick. Pain is bilateral, but no shocks on the right side.
Kc Dancer Kc, I saw my doctor last week and he prescribed me the Lidocaine wash. It was the first thing I asked for. Thank you.
Gizmo, My directions say to swish and spit 15 MLS, which I think is about a tablespoon, every 3 hours. I don't like how "thick" it feels in my mouth. I've used it and it numbs my gums and teeth, but it only lasts about half an hour.
justjane37, Two neurologists could not find anything from my MRI so my doctor diagnosed me with facial pain. I'm weaning off the carbamazepine and starting on lamictal. I'm staying on gabapentin and baclofen too. He wanted me off the carbamazepine because the dose I was taking (200 mg in the morning and 400 mg at night) wasn't working anymore and he didn't want me to have to keep increasing it.
Thanks everyone for all the helpful information.
Teeth shocks hurt the worst for me because they are fast and sharp. Im pretty familiar with them!
My teeth were shifting because of a bad nightguard (which i was using for months stupidly to help my jaw clenching). It hurt worse when a tooth was mis aligning but I still get them sometimes on account of after my trauma, my teeth went completely numb for a few weeks. Nerves are crazy!
Hi justjane37, how strong are your Type 1 bolts? Right now I get shocks in my teeth and on my face. They mostly feel like two bare electrical wires touching, but when I get anything stronger, that area stays sore for a couple hours. I'm almost off the carbamazepine so the only meds in my system are gabapentin and baclofen. I'm hoping the lamictal will help, but it will take two months to reach the complete dose. I start Friday at just 25 mg.
I also get shocks that are a little stronger behind my ear and on my forehead. My neurologist said he hasn't heard of anyone getting shocks behind their ears.
justjane37 said:
Hi Liz,Yes this sounds very familiar to me. I have bilateral ATN with some Type 1 type bolts mostly on left side. Everyone with the disease is different and many have overlapping symptoms.
From what I have seen most doctors are not even willing to diagnose Type 2, I guess unless something shows on your MRI. I have had two MRI's with contrast and without which have not shown anything.
I have had my ups and downs but have had a lot of success with Amitriptyline. I think people that have symptoms of Type 1 and Type 2 sometimes do need a combination of medication to help.
I hope that your MRI shows something concrete and will help you with your diagnosis and treatment.
Liz said:Thank you Kc Dancer
I put it on my list for my Wednesday appointment. Hopefully, the MRI will shed some light on my condition. Dr said he didn't think I had TN1. My symptoms seem to indicate ATN, but I still get shocks. Some just feel like two bare wires touching, others feel like they're 4-5 inches long, very quick. Pain is bilateral, but no shocks on the right side.
Liz,
My shocks are not that strong. At least I don't think they are compared with what I have heard others describe. They are fairly new for me...just the last few months. Before that my symptoms were only Type 2. They are so fast that they are gone before I can even register them happening. They scare the beans out of me!
My ATN is mostly in the bottom two branches affecting my teeth, tongue, roof of mouth, jaw, cheek, under my lip and ear. These bolts that I get happen in the teeth sometimes but they mostly happen in the top branch. It really worries me because I never had any pain there before. With these flashes I am also getting little muscle spasms on my temples and under my eye.
I do get pain behind my ear and also underneath and above it on my head. I have had pain radiate down my neck a bit too. Mostly Type 2 pain with that though.
The flashes and muscle spasms for me are very random and come and go. My Type 2 pain has a couple of usual spots that it always starts in and follows familiar patterns. Once it sets in it is there for the day and my flare ups usually last a few days. I may go a week without pain and then a week with. It seems the weather and my cycle really affect my ATN.
My ATN is pretty well under control with the Amitriptyline. I still do get flare ups but I know they are no where near the pain they would be if I weren't on Amitriptyline. I have had to increase a couple of times too. It seems that all of my symptoms are gradually getting worse :(
justjane37, I still don't see a pattern with mine. The pain, which started on the left, now acts up on the right in the same areas. On one occasion, I did get five or six "ice picks" in my right ear, extremely painful and scary. I've been trying to pay attention to the pain in regards to the weather, but I haven't noticed anything specific. There aren't even any triggers that I've noticed, so nothing to avoid. My symptoms have definitely gotten worse since everything started in January 2013. All I started with were a lot of tooth aches, but the dentist couldn't find anything wrong, and some zaps under my left eye. I'm very thankful for the medication.
Liz,
I have been dealing with it for a year and a half straight on the left side and about four months on the right side now. Much of my right side pain mirrors the left but it does have some different locations.
I do not have specific triggers either. It doesn't seem to matter what I do or don't do the pain does whatever it wants. It took me a long time to notice patterns with it. Although it could have changed too. It seems that it is continuously morphing.
Most of us do not fit into the mold that Drs wish we did. I have had a terrible time trying to get a diagnosis as well and am waiting for yet another specialist appointment in August.
I am also so very thankful that my medication has worked so well for me. The future frightens me though. Considering I keep having to increase my medication.
Stress, anxiety and lack of sleep really affect my pain as well.