About 9 months ago I went sheepishly to my GP with a long list of complaints. This is not at all like me and I felt like a hypochondriac, but I was really hurting. As I read more about TN patients, I’m beginning to think this could all be related.
Numbness in my right arm and hand
Terrible neck pain
Tooth sensitivity, mostly to cold or even slightly cool drinks, later to any food or drink
Pain along the bottom gum line that stopped right at the middle of my mouth and the same pain on upper gum line and jawline to nose. I( now know this is the trigeminal nerve.)
Felt very tired.
I also had bells palsy 10 years ago.
The GP told me to see an ENT or TMJ dr and said with big eyes, let’s hope this is not trigeminal nueralgia!
Then the big attack a couple weeks ago and now the dentist says I have a crack in a filling, back right top, so afraid of getting that fixed, but also hoping and praying that this is not TN but a bad tooth. That hope is quickly fading and I am slowly accepting the TN dx.
I was put on 600mg of tregretol, but weaned myself down to 100mg with only some throbbing pains here and there. My neuro said this is only to control pain. My question, shouldn’t I get off this ASAP if possible? When I get another attack I don’t want my body used to this stuff.
In the meantime I am reading Striking Back. If I need Mvd surgery, I want it ASAP.
I don't know about the neck and arm pain but can certainly relate to the gum pain and tooth sensitivity. My teeth on that side just can't handle anything!
Debbie, Can I ask if you have ever been in a car accident or injured your neck in any other way? I was in a severe car accident when I was younger and a few other bone-headed things I've done and they are catching up to me now. My doctor said I have the neck of a 75 year old and I'm only 51. Lots of calcium buildup that are pinching nerves and the carotid artery.
I don't know much about tegretol but I had a lot of neck pain/base of skull pain along with back pain and numbness in my fingers and pain in my elbows and wrists. Also have the tooth, jaw and eye pain all on the left side but finally found that Topiramate helped me a lot.
Don't be afraid to tell your doctor anything, ever. I even make a list so I don't forget anything, and if they don't listen to you, find a new doctor. In fact, run!
Hope that helps...don't be afraid of having the filling replaced. No biggie there.
I had bells palsy too then developed tn! After a while I developed pain in the base of my skull and down my neck. This is called occipital neuralgia. I’ve just had my 2nd set of nerve blocks to the tn nerves and occipital nerve. All on the bells palsy side. Hope this helps. X
Thanks Helen! I've never heard of that...will have to bring that up with my doctor!
Helen said:
I had bells palsy too then developed tn! After a while I developed pain in the base of my skull and down my neck. This is called occipital neuralgia. I've just had my 2nd set of nerve blocks to the tn nerves and occipital nerve. All on the bells palsy side. Hope this helps. X
Hi jack,
I have injured my neck a few times but the worst was in 1989, trying to push a very heavy board onto a loft, I felt a painful pop in my neck and couldn’t move it for a few days, then headaches, x-ray that showed a herniated disc, chiropractic care on and off, now having a lot of pain and waiting for results from another x-ray and follow-up w spine dr next week. I had numbness in my right arm and hand (tn and bells palsy also on rt) spine dr wanted me to get an MRI but I guess insurance makes me have to have x -ray first to see if MRI is necessary.
I did have a brain MRI with and without contrast. No signs of compression, but I’m not so sure my neuro knows much about TN.
I also wonder if a molar I just had removed was causing my tn pain and if my nerve can heal.
Thanks for your help. I will make sure I give my list of complaints to the spine dr. I just turned fifty and I try to stay fit, but, wow, getting old is painful! : (
Jack said:
Debbie, Can I ask if you have ever been in a car accident or injured your neck in any other way? I was in a severe car accident when I was younger and a few other bone-headed things I’ve done and they are catching up to me now. My doctor said I have the neck of a 75 year old and I’m only 51. Lots of calcium buildup that are pinching nerves and the carotid artery.
I don’t know much about tegretol but I had a lot of neck pain/base of skull pain along with back pain and numbness in my fingers and pain in my elbows and wrists. Also have the tooth, jaw and eye pain all on the left side but finally found that Topiramate helped me a lot.
Don’t be afraid to tell your doctor anything, ever. I even make a list so I don’t forget anything, and if they don’t listen to you, find a new doctor. In fact, run!
Hope that helps…don’t be afraid of having the filling replaced. No biggie there.
Thank you Helen, I will definitely look into this and ask my spine dr next week!
Helen said:
I had bells palsy too then developed tn! After a while I developed pain in the base of my skull and down my neck. This is called occipital neuralgia. I've just had my 2nd set of nerve blocks to the tn nerves and occipital nerve. All on the bells palsy side. Hope this helps. X
Sorry to hear Debbie. After hearing what Helen told you I think I have more of the Occipital Neuralgia than the TN! First time I've ever heard of that too. So you never know. I'm so glad I joined this website, I've learned so much from it in just the last few months since joining. After looking up Tegretol, I guess I do know something about it...didn't realize it's the brand name for carbemazepine. That was the first thing I tried when they first diagnosed me over a year ago with TN. It didn't do a thing for me good or bad. Only you can decide whether to take it or not. I only recently started taking the Topiramate and it has changed my world so much for the better that I can't imagine not taking it as before I spent half the week in bed with so much pain life wasn't very much fun anymore. So for me it's a no-brainer. I just hope it keeps on working for years to come.
I too had the MRI with and without contrast and it showed nothing, and the xrays didn't show anything that major. I was very tired all the time too and knew it wasn't just because I was 50. I also have the tooth pain both upper and lower but it's not along the gum line, it's right in the teeth at times. Luckily it's not real bad but just enough to almost drive you crazy sometimes. Lets hope that was the molar and things can heal up now.
Have you tried any physical therapy? That helped me a lot. Especially if you can find anyone that specializes in the McKenzie Method. It does wonders for anyone that has hurt their neck. My problem with that was I was beyond repair since most of my damage was over 30 years ago. Even then it still helped loosen everything up and I actually had a few days that were completely pain free. If you need help finding anyone that specialized in that I would be glad to help, but the guy I saw was in Texas.
I hope that you get the help you need. Keep us all posted on the Spine Doc and best of luck!