It's back - sigh

I’ve had 2 bouts of mild TN (manifesting as electric shock pain in my right jaw only while eating) over the last 4 years. Both times it has gone away after about 4 months of intermittent electric shock pain when chewing. During the second bout of this, I went on a long hunt for a diagnosis and ended up being diagnosed with TN after many dentist/doctor visits. (MRI showed a blood vessel close to my right trigeminal nerve as a possible cause). It eventually went away on its own (thank goodness). A couple days ago, I had my first shock in almost a year while eating. I’ve been having general tooth sensitivity and pain on my right side for quite a while that seems to be getting worse so I’m not sure if that’s related. I was hoping Monday was a fluke, but then I had an electric shock pain again today while eating. So I guess it’s back. I was convinced it was my Sonicare that was exacerbating it last time but since I haven’t used that in over a year I guess it’s just starting up again on its own. Big sigh. I have an appointment with my osteopath on Monday for some cranial work and hoping I can stave this off. I’m convinced cranial work helped me beat this back both times. I gingerly ate a chocolate chip cookie today in defiance of the potential for pain. I really hate this because now I am scared to eat. I guess it’s one way to diet…another big sigh. Just not a very fun way. Fingers crossed this episode doesn’t last too long. I feel for all of you who have really bad cases of this. I’ve been fortunate to have it pretty mild with fairly long asymptomatic periods. I hope it stays this way for me. Just venting and feeling bummed. I was hoping it was gone for good.

Hi Katherine. sorry to read your TN has come back. I hope it doesn’t stay for long. Good luck. Mary

Katherine, sorry to hear you are having bout with your TN. I have had it for about 10 years. I was finally diagnosed with it but did not find the root cause. Finally went to a neurologist and she insisted on an MRI since dental word and meds had not worked. I have a meningioma on my brain stem pressing on the nerve to my TN. A rhizotomy (second one) took away the electric shocks but left me with AD. I am hoping you will find exactly what is causing it. Good luck. Gloria

So it’s been almost a month now since this current bout started back up and it seems to be getting worse. It ONLY happens when I eat or have recently eaten. Takes all the joy out of eating!!! I can now feel a buildup of pain/pressure on my right side down into my lower jaw and throat when it’s going to happen and if I slow down and chew very carefully sometimes I can avoid a full zap. I feel like it is somehow related to my salivary glands right now since only the presence of food or sucking on something causes it. Right now I’m getting 1-4 bad zaps a day only on one side in my mandibular area . That side of my face under my neck is also itchy a lot. And I’ve had many bad migraines over the last few weeks. I am finally seeing an actual neurologist for the first time next week. My primary doc recommended gabapentin but I’m going to wait to see the neuro to see what he says. I do not suffer constantly like many here but it is causing me great anxiety and stress and ruining my appetite. Nothing like the threat of a painful electric shock when you eat to make you not want to! Anyway,if anyone out there has this stupid ailment only when eating or feels like it’s somehow related to your salivary glands or taste buds, I’d love to hear from you. The neuro I’m seeing next week is supposed to be excellent so I’m hopeful he will have some ideas. Go away dammit!!!

Migraines and TN are shown to be related. A large amount of migraines are neck related- posture, stress, trauma, arthritis etc, nastys -MRI rule out. Symptoms below the jaw line are outside of the trigeminal nerve territory and possibly indicates a different problem.

Your Neurologist is going to teat your symptoms, and sorry not the cause ( short of an MRI showing something to shout about).

Hoping it’s a short struggle.

Katherine, you’ve probably seen your neurologist by now. Hope you got some answers. TN is no fun. I am not sure if it ever goes away. Mine is there because of a brain tumor pressing on the nerve. Which can not be removed. Hopefully your problem is one that can be fixed. I found eating to be a problem as well. After a rhizotomy there is relief from the electric shocks but chewing is still a problem. Hope your neurologist was helpful. Good luck Gloria

Oh wow. Thanks for reaching out Gloria. I am so sorry you are dealing with that. I have nothing so serious. I did see the neurologist and he was helpful. He has a holistic approach which is kind of cool. Not just medication but also supplementation with herbs and vitamins to calm down my nervous system in general. He has me taking gabapentin which is also helping reduce shocks. (For which I am grateful and the dizziness from the medication is getting better). I’m still eating very carefully and can’t always avoid shocks but I can kind of tell when one might happen now so I just take it super slow and or stop when I get that weird feeling in my face. I have to get a root canal next week for a bad tooth and am definitely nervous about how that will go. My neurologist is having me preload with lots of gabapentin so hopefully it won’t trigger anything bad. Maybe it will actually help in the long run since it is a tooth that has been a source of issues for a long time (before this current episode started). Maybe it’s triggering things as well. Who knows? Anyway, take care and thanks again for reaching out!