Does anyone else have TN that affects the left mouth? Lips go numb. Tongue touch of mouth roof send zings. Gums zings. Can’t speak without zings. Take oxcarbazapine and gabapentin but they take a bit to kick in. Any suggestions?
I had left mouth pain that made it almost impossible to talk or eat. I had my second MVD in 2012 & thankfully have been pain free. The meds I took I believe were Trileptal & they kicked in very quickly. They had added Backlifin ( not sure of spelling) when I needed something else.
So sorry to hear about your pain.
Yes, I have pain left size. Same symptoms as you plus more! Not having a good year this year. I am on Pregabalin and Amitriptyline. Take care x
Thanks for letting me know your meds. In need of a quick remedy.
Sorry to hear. My pain also flaring up this winter. I take Carbamazepine ER 900 daily. Mostly helps. Get a consult for an MVD. Took away pain on my left. I have right side now 🥲
I’d like to be positive so close to Christmas, but with TN I can’t. My trigger points in the 2nd branch can range from top outer cheek area near the ear down to the lips, over to the nose and. on into the mouth/gum & teeth and back to my pallet. TN is by nature enigmatic. There is no consistency or predictability. I assume you are relatively new with this. Best to be sure you can find the best doctors and support people you can and work on developing a spiritual foundation to help handle life. I’m 30+ years with it but still try each day to make it to the next. You must do the same. Stay strong and positive.
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I have the same symptoms. I take Gabapentin and Lamotrigine. Having a bad time right now…I do think it is the stress of the Holidays and the very toxic events happening in this world. right now. It makes it hard to cope. I hope everyone is vaccinated.
Hey Boots,
My trigger is left side of nose but sometimes easting on the left side of mouth sets me off. Yes I think season changes affects TN. I’ve had this for 15 years. Here is my current Rx:
Gabapentin, Carbamazepine, Vimpat (lacosamide). Fish oil, D3 and B-12. I have Clonazepam as needed. These drugs are taken unusually Am, Afternoon, Early evening and then bedtime. It depends on the day, sometimes more, sometimes less. If I have a horrible breakthrough I take another round of drugs (if I can get them in my mouth and swallow), Ice works for me and also lidocaine patches. It is all so different for all of us. Take Care, Be Well. Quell the Beast!
I have the same issue. I take Trileptal 900mg.any more affects my thinking clarity. I found my pain to be set off by nerves. Knowing that, I have used Valium judiciously, plus a CBD spray on my gums, particularly at nighttime and lastly, I use vaporized MJ if I’m eating or having a conversation. I found that they all help to some extent and my Neurologist sanctions all of what I do. I also have Botox injections once very 3 months.
Those are all my learned experiences that work foe me after 20 years with TN. I feel what I do has put me in control of my TN and that gives me the upper hand.
My best to you in finding what you need to control your situation. Michael Zimmerman12/23/21
Thank you all for sharing. I, too, intend to get a handle on all of this and live life to the max. Merry Christmas and a blessed New Year!
Boots (and all in this position), I understand your pain for I have been there. And experience occasional shocks every now and then still. Only I don’t call them zings anymore, more like electric shocks. My problem is a meneginoma sitting on my brain stem and resting on my TN. at my age inoperable. A rhyzotomy helped by deaden the nerve. Enough about me I do hope you get relief from the meds suggested to you. Anyone that has TN can sympathize with you. Good luck. Gloria37
Thanks for sharing your info. I, too, have a meningioma on my brain stem. Had it nuked in 2015 because it started to expand. They also targeted the trigeminal nerve and I had relief for a while but man did it rage when it returned. Getting a better handle on it now but realize more than ever how stress can trigger those shocks. I’m doing better with that too. Thanks again and God bless!
Boots, when you say nuked for the meningioma on your brain stem, exactly what did they do ? Could they operate? My first one in ‘98 was removed with an 11 hour operation. Well it decided to grow back and at my age operation is to risky. Hence, my interest in how yours was nuked. Praying for all of us TN suffers. Here’s hoping you’re pain free. Gloria37
They drilled a halo to my head and for 3 days I had the meningioma targeted and radiated for an hour or so each day. No way to remove it so this was the choice. Followup MRI s show no more expanding. I am very grateful for the team at University hospital in Columbia MO. Just wish the procedure for the TN had worked. I was warned it may not. Thankful that current meds are working. Except for the mouth which requires additional. Getting used to taking extra before eating and gatherings with much talking and laughing.
Boots, thanks for that clarification. It does sound like you had radiation. I had radiation also, 28 days for 15 minutes each day in 2014. MRI tells us it didn’t shrink much but hasn’t grown to much. The pain came back and in 2016 hence a rhyzotomy. It seems like we’ll be on meds forever. Thanks again for the description of your treatment. Praying for us to be pain free. Gloria37
Left side is the only place I get pain. I had a Gamma Knife procedure which lasted many years. Then a Glycerine injection over 3 years ago. Lately it may have been barometric pressure that caused a much milder return due to weather extremes. But it is tolerable taking Keppra(Levetiracetam) which is RX as needed. I am allergic to the usual meds! No caffeine and a diet with minimal Sat. Fats has helped.
Hi Boots, I do hope you find something that helps.
I haven’t been active in the group for years. I do have constant tongue and tonsil pain on the left side. Zingers and burning all the time. Had surgery for GPN years ago. No relief unfortunately. Not a great success with meds either.
So sorry I have nothing to offer in the way of meds. Just to let you know your not alone.
I do hope you find some help on this page.