I was diagnosed with trigeminal neuralfia in October by a neurologist. I had an episode on the left side of my face that I described more as a headache that affected my cheek and temple only and felt like a tight muscle that wouldn’t loosen. It went into remission for 2 weeks after I started wearing a night guard…but then I had pain on my right side that settled into my jaw and cheek that for the first 4 weeks didn’t move but then also included pain above my ear, pain in my neck and shoulders and now even tooth aches. I went for a second opinion from a neurosurgeon who said I don’t have TN type 2 but have neuropathic pain. Does anyone understand the difference? I have no known injury nor any known viruses and he agreed but said sometimes we don’t know what causes the injury. I’m really confused and he said this means I’m not a candidate for any of the procedures like MVD or gamma knife they would make it worse.
As I understand it it, understandably you worry too much, you shouldn’t.
You mention neck and shoulder pain, neuropathic pain you might expect facial pins and needles, numbness,hot and cold etc. Don’t concern yourself with TN1 or TN2 or whatever, just a description of symptoms not cause, despite what you might read.
Ask me more, but look at your situation, why now? Posture, stress, etc…
coreysarah,
Maybe of interest,
Cervicogenic model/ TN caused by the neck TN7.pdf can be found at
http://api.ning.com/files/kpD37olj0H06zifHBqzI7Ego0ZQ6W06nTWepDVXCIBzMIg3Iba4tmOSjmfL0XYmFEr7WBvL3KiwZqZd0*bT18wgxa3VgsO/TN7.pdf
For years i was told i had TN, then i was told it was trigeminal neuropathy. I had the stabbing, burning, boring, aching that affected my teeth (upper and lower), tongue, cheek, gums etc. No meds helped and i tried them all.
I just had a MVD despite my diagnosis. 3 compressions were found and many of my symptoms have disappeared. I was told that there was a 50 percent chance of 50 percent pain relief since i didnt have type 1 TN (many many docs said that it was neuropathy). I do have some pain left but i think that was due to prior injury to the nerve. So even if they put you in a box and say that there is nothing they can do for you, there may be something that can be done. Do lots of research on finding the right Drs. I had to switch insurance after 6 yrs of doors being closed on me. I met with Dr. Linskey for a mvd and i am better. Not fixed, not perfect but my life is so much more manageable. He was willing to work on me when other neurosurgeons refused. He didnt fit me in a box and tell me there was nothing. Instead he said we can improve on this. It took me 6 yrs of knocking on doors but i found the right one.
I’m so happy for you. I think the fact that I had it on left and now on right puts me in a diff group I guess?? I’m not sure but I’m sure glad that hear of your pain reduction and hope over time your nerve heals and your pain gets even better
I had my check up today. There were people from all over the country there with TN. And some had had surgery on both sides. Just research, reach out and dont give up. The symptoms are different for everyone. Good luck.
I’ve had a cervical spine MRI that came back normal so I’m not sure it could be derived from neck?
Hi coreysarah,
MRI, especially if you have neck symptoms, means nothing in regards to TN except it has potentially ruled out serious illness, which is obviously a plus.
It doesn’t mean tight muscles/joints aren’t contributing/ are the cause. In my opinion the neck issue should be addressed first- physical therapy, posture, lifestyle changes, even diet. Simple changes alone can help e.g. Stop being curled up in front of the laptop, express how relationships need to change. More importantly if symptoms were first experienced during a period where these were lacking e.g. a stressful family/ work event.
Folk will have similar MRI results, but different symptom patterns. A no findings, either means that or conducive with age. It has little to do with the mechanical function of your neck.
This is very interesting and describes many of my issues with TN2. Thank you.
Mine as well, I will be looking into it.
Thank You
Yesterday my physio and I were discussing whether this could happen.She showed me a chart with trigger points and something else caught my eye.A picture of the bottom front teeth of someone in pain.She said a whiplash injury can cause that.
Which might make sense for me.I was rear-ended last summer and after that started having dental problems on the bottom front teeth.I had two at sleep dentistry sessions where who knows what position my neck was in.
I am wondering whether there is any specific set of exercises to try?
I have TN2 after tooth extraction. My husband is an orthopedic surgeon so he ordered a cervical spine MRI. Well, my spine is a mess. Pinching up top at C1-C2 and bulging on the way down. My C2 is actually rotated to the left. I was getting therapy for a few weeks by a cervical spine specialist who did manual manipulation. I never felt better (I’ve had this condition about a year now). I stopped to get botox in my head and was told to wait a month before going back to PT. Well, by day 4, all my TN symptoms were blooming again. Headache was lessened but jabs, stabs, pulling and ear aches were full swing. My Neurologist agreed to let me back in PT despite the botox. Going back today. I’m hoping I can get back to where I was before botox.
I am really curious about this cervogenic correlation. I had never seen this before. I have been recently diagnosed with thoracic outlet syndrome because my neck no longer has any curve in it. I actually had a facial injury that damaged the trigeminal nerve. Now I am wondering if they are a joint problem and should be treated together rather than being treated separately as individual illnesses.
My MRI of my cervical spine shows restrictions.
Hopefully someone can sort this out.
I don’t think I can last another year without the pain being managed.
I wish my neck MRI had shown something but it didn’t. I did visit a chiropractor so we will see
I went to a neuropsychologist to try and help manage my pain and help me cope with the loss of my pre-TN life. I moved a few years ago so I haven’t gone to anyone for awhile but I did learn some things. One thing that truly helped was the way he explained why I have trouble with my memory. I was truly beginning to think I was losing my mind and he put it in a way that I could (and my family could) understand.) It helped them understand that I was not intentionally ignoring what they said, or I wasn’t listening to them, nor being defiant or just don’t care about them or their feelings. He told me that your mind is like a stage with a lot of actors on it. There is an actor for everything you are doing at that time. There is an actor for breathing, for pumping your heart, etc. Those things your body does without you thinking still takes your brain to operate them so they permanently take up 1/3 of your stage. Because you are in constant pain, your body is trying to counteract the pain with all the things it can do subconsciously, too. It is always going to take up another 1/3 of your stage because it never goes away. The last 1/3 is taken up by your conscious effort to do a specific task. Talk on the phone, write a grocery list, read a book, etc etc. So your stage is now full. If your pain increases it has to have more actors. Those actors need a space on your stage and the only way it can get that is to push something off. It can’t stop the permanent functions so the only actors it can push off are the ones doing your conscious task. So you may stop what you are doing and you may not remember what it was, why you were doing it or that you completed the task. If you have an interruption, such as someone starting to talk to you or the phone rings or something falls off the counter, your brain will jump to that and it pushes off the actors doing the task. Because it gets pushed off, it doesn’t have time to move into your long term memory and you just can’t remember things. The medications don’t help either. Their side effects compound the problem. He also told me that I should try to find things to distract me from the pain. He said reading and doing puzzles/games like sudoku or word scrambles have double benefits of distraction plus memory buildets. We also worked on other things to try to help with the pain above and beyond the medications. There is no cure (at least in my case because mine was caused by a direct injury to the nerve) so I will probably never be pain free in my lifetime but I am embracing the moments where I am at a pain level that allows me to spend quality time with my family and to do modified versions of some of the things I used to do. So as part of your treatment plan, you may want to see someone that can help with the mental part of chronic pain.
Love to hear an up date on your PT, any luck?
wishing you well.
I went to PT twice a week for 2 months with no change whatsoever. I tried two chiro adjustments and the pain for so bad I got scared and haven’t been back
Hi Dana,
I’m really not sure if I have TN2 or a direct injury. Two neurosurgeons say it was an injury, an oromaxiofacial doc says it’s atypical face pain, and my neurologist thinks it’s atypical face pain as well. It is definitely not classic TN (not yet anyway). I do plan to see a psychologist to help me deal with the daily pain. I’m beginning to think this may be my lot in life - I’m 47 years old and otherwise healthy as a horse. There are some days I wish I was much older because I can’t imagine managing this for 30-40 more years. Then there are days that I am thankful to be alive and realize there are people out there who have it much worse. I can only imagine this is what a lot of us go through. I am realizing a few things: sleep is important, keeping myself occupied is just as important, and I may never get to the root of this.
Anyway, just curious - what type of injury did you have?
My PT is a cervical spine specialist - also trained in facial issues such as TMJ. The PT somehow works for me. It takes the edge off. It does not take the pain away completely. I take 500mg of gabapentin and 30 mg of nortriptyline per day. My main symptom is an occipital headache on the right side. Second to that is ear ache pain. The facial symptoms (tightness, zaps, toothache and burning) are quick and fleeting. I do think in my case, the manual manipulation (very gentle) helps ease my headaches. I do not think my headaches are cervicogenic in origin. I had a tooth pulled one day that happened to be a root canal gone bad. A week later, the toothache came, then the headache, then everything else over 6 months. Can’t be that coincidental unless my oral surgeon gave me whiplash (I was under mild sedation - don’r remember).