Trigeminal Neuralgia second time

Hi, I i’am a new member on this site but not new too having TN. 6 years ago I was going through thyroid cancer and everything went well with that. When I was going through my cancer, I was dealing with a lot of pain thinking it was cause of my thyroid cancer but it had nothing to do with that. I was dealing with something completely different at the same time as my cancer. Seeing doctors, dentist, ENT doctors and finally a neurologist. 3 months later after seeking information what was this pain I was dealing with in my face , ears mouth etc… my Neurologist told me you are dealing with TN. I did hear of this before cause I was searching on the internet about my symptoms and this was the only one that made sense. My doctor put me on Carbamazepine and told me this should help me. I started taking it for about a month and then just took myself off of it cause I wasn’t feeling better. Within that time , I guess it went into remission and that was it. 5 years later, here i’am with the same symptoms as before. My family doctor just wants me to make sure I don’t have an infection in my mouth cause I do have a chipped tooth. I know this is not an infection but my doctor is only making sure before he treats me with this medication again. I understand why but having the same symptoms tells me it’s not in remission anymore and my neurologist did tell me it could come back at anytime. She was right cause it’s back again. Has this happened to anyone before? Your TN coming back 5 or 6 years later? I have been under a lot of stress in the past 3 or 4 months but I don’t think stress would bring this on. I just can’t believe I got this again.

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I am so sorry for your pain.
While it seems like a very long remission, I believe it can happen. My story is almost identical to yours, except my initial remission was only just shy of 2 years. That was 10 years ago.
Get back to a neurologist as soon as you can. Even though you felt the carbamazepine wasn’t doing anything, it probably did. It takes a while for it to build in your system. I have always felt it was the carbamazepine the helped me obtain remission since it did help me gain control the 2nd time around (at least for a while) I am med resistant and my body overrides it’s effectiveness pretty quickly. I hope you find something that works for you quickly. Good luck.

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Thank you Mutleymom. I’am waiting for a phone call from my family doctor today to discuss what he will do for me about my pain. I’m a little shocked that he hasn’t sent my prescription to the drug store yet. He wants to talk with me first for some reason. 3 months it took for me to receive the answers as to why was I having all of these issues with facial pain eye pain , ear pain and mouth pain. So many things trigger it like washing my face or brushing my teeth. We have gone over all of this years ago so I don’t know why he is not just giving me what I need to help with this. Hopefully he will give me something today. I did call my neurologist office today but because it’s been 5 in a half years I need a referral again to see her. I guess it all comes down with what my doctor is thinking. We always get along but I believe if he chooses to make me wait , the phone call today won’t go well with him. I will need too tell him how much pain I’m in and if we know 99.9% this is the issue again , why is he being hesitant by giving me what they did before. Doesn’t make sense to me. Today’s phone call with him will tell me a lot. He knows this is what I need to help me. I have never urged him to give me any kind of medication but today I will if needed. Thank you and I will let you know the outcome. :+1:

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Hi again Mutleymom , I just got off the phone with my doctor and he did tell me that it definitely sounds like I ‘am dealing with Neuralgia again. He only wanted me to double check that I never had a infection in my tooth before moving forward. I found out by my dentist I was not dealing with any infection with my tooth so he is going to prescribe me carbamazepine today. Starting off with 100 mg first week and 200 the following week. He told me I need too see him next Tuesday cause I have too be monitored very closely being on this medication. That’s the only thing he is worried about cause my liver is what he needs too make sure is ok. Thank you for reading my message and I will keep in touch with you on how things turn out.

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Please do let me know! He may want to just rule out dental issues… they usually do. :roll_eyes: Hopefully he will send you for a MRI eventually to rule out MS. These are typical procedures. But the carbamazepine is usually first line of defense. You may also eventually get referred to a pain clinic if you can’t get your pain under control… that can either be a great experience or a bad one. It’s all kind of a crap shoot. I have been fortunate so far. I’ve tried their nerve blocks, had the MVD surgery, nothing has been very helpful for me. But I’m weird. Ha! So I’m just on medication maintenance now. Good luck today.

Oops…just read your second message!
Great! Sounds like it went well!
Good luck! :blue_heart:

I just recently (March 2021) started having mild flares of TN. It’s mostly in my ear and not really shooting across my face like last time (hallelujah). I had severe TN symptoms about 9 years ago and it went away on its own without any medicine. I’m currently going through some trial and error diagnoses, so not many answers yet. Scheduled for blood work and an MRI in June, then following up with neuro and ENT.

Just wanted you to know you’re not alone!

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Thank you for sharing. I see my doctor tomorrow so he can monitor my medication so my liver is ok. No change on the way I feel. Maybe cause I’m still only taking 100mg and not 200 mg of carbamazepine. I believe I start 200 mg in a few days. When I’m sleeping I’m ok but as soon as I wake up and start my day, it’s bad. Usually around 1 pm I start feeling sick. Lightheaded kicks in and nauseous. This is everyday that it happens. I never get sick and I have an appetite but definitely feel nauseous. I don’t know if my doctor will do blood tests for something else on me that’s causing the nausea. If it was once in awhile I could handle it but it’s everyday I feel this. I want too just bring myself to the hospital so they can test me for anything that might show them something. I might do that tomorrow, possibly today. A person can only handle so much.

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Doctors are very cautious with all pain meds now. Partly because the DEA monitors there script writing practices. They are more prone to send you to a pain management program so they can monitor patients for abuse or misuse

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Hello all. I went in for a routine filling on the bottom right in April 2019 and a root canal on the bottom right. New dentist but the office was highly recommended. After he numbed my gums he proceeded to take his thumb and pressed with his body weight into my gum. Then said Oooo you’re going to be sore tomorrow and I’m thinking Ummmmm no doubt! 2 days later I’m in immense paid all over the right side of my face and my teeth on fire!!! I looked up what could cause jaw pain and found TN…I went back to the dentist and soon as I said TN he threw up his hands and Oh not my fault! :rage: He said you need to see your primary doctor.

She got me in and agreed. I found a neuro doctor who put me on Gapapentin and Oxcarabzine over the course months nothing
worked, I was ready to leave the world but I was desperately trying to not do anything because I have 2 son’s) so I found a surgeon. He recommended Gamma knife or MVD. Petrified of the brain operation so I did the radiation 3 days before my 52 birthday…it got way worse for about almost 3 months. I was pain free until mid April of this year, I woke up to a frozen hard feeling face and my teeth hurt but not on fire like 2019 but feeling frozen.

So April 20 I agreed to do the MVD THE WORST DECISION in my life!!! I’m on Trileptal, Robaxin and Tylenol 3 until the nausea got to bad the right side of my face/broke out in a horrid rash. So my primary put me on Hydrocordone. I have a sensitive stomach so I’m taking fourths of a tablet every 4 hours. The nausea, whoozy dizziness is driving me bananas!!! I hade no feeling at the top of my head to mid of it until about 2 weeks ago. The ONLY positive thing!! My face feels it’s been numbed by a dentist! Around my eye there’s a pulling and it feels recessed, heavy and swollen. Some days my nose, lips and cheek are swollen pockets of flesh other times ther individual swollen pockets. My lips stay cold, my teeth feel frozen, top to bottom gums feel swollen.

I have no feeling in my head from the side of my face across my ear to about midway of my ear. The scar has healed nicely. I stay nauseated so Pepto is all over the housr, for 2 weeks I couldn’t keep gardly anything down. I’m using a walker because of the dizziness. I am in great dispare. All the doctor’s I see say 6-8 weeks or more to see where I’m at but I’m OVER THIS!!! I’m tired soooo tired of the pain, dizziness and frozen face. Of course my outward appearance I look pretty normal, a slight droop in my eye a little swollen in my cheek meanwhile my right side feels like a SWOLLEN FROZEN BLOB!! Once again if it wasn’t for my son’s and 3 year old beautiful twin girl grandbabies I wouldn’t be here.
I know I miss spelled the meds and maybe some other words but too tired to go back and correct them. ANY couraging stories of relief. I did the operation since reading on it said it’s a longer relief.

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Hi Lorraine,

Have you had a CISS MRI with contrast. I suspect my TN is due to my SUNCT but my neurologist wants to check for micro vascular compression. I presume you did have this before your MVD surgery. (I also have Hemicrania Continua and chronic migraines).

I am currently taking Lamatrogine for the SUNCT, Indomethacin for the HC (with Omeprazole), Dymista (steroid nasal spray), Melatonin and Gabapentin.

I’ve just been told by a neurologist that it is inevitable that I will reach the maximum dosages of meds and will be on a runaway pain train :cry:

Has your neurologist thought about Trigeminal Autonomic Cephalalgias as some of your symptoms are similar to mine and it sounds as though you are having autonomic as well as pain responses?

Good luck in your fight, I hope you do better than me :wink:

ps. My dentist showed me a trick which you can do with a metal spoon. If you tap your tooth from both the side and bottom and it’s painful, it’s probably tooth ache. If it is only sore when tapping the bottom and not the side, it’s likely TN.

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So sorry to here about your TN , mine also started from a root canal ( truma to the nerve ) this is caused by an in experienced doctors . I had another root canal on April 29 2021 and this dentist was different , He drilled took an X-ray ,looked at the X-ray and drilled and prepped some more . He did drilling and prepping and X-rays three times before he finished . I never had a root canal done like that and I had no problems ,though my TN is on my upper right side and it has retuned after 5 year . I’m almost sure I’m going to have a MVD again but I’ve read that I might have had bleeding from the first surgery and the Teflon had adhered itself to the cerebellum again . I’m having an MRI July 2nd with a contrast . Here we go again ! My prayers are
With you I know the pain . Through his Strips we are healed . Keep the faith ! God bless

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After waiting 4 month and thank god my pain went into remission again. 1 moth now no pain. They did the MRI scans and found out I don’t have TN. In dealing with something that my jaw is not inline. They said some are born with it or I hurt it when I was a kid. The specialist I see in November about this already knows what I’m dealing with. 500 dollars first visit and 300 each other vist. They made it clear that I would see her once and possibly 1 per year. So whatever she is going going to do My visit will do the trick. After that she that my folllow up visits will be with family doctor. It’s amazing how much pain I was in and a month ago I woke up and pain free.

Mine never has gone away in face i get hyper salvation terrible not sure from trigeminal but now they want me to go to a dr not taking ins and 500 an hr not sure its worth finding it at that charge
Shot in the dark and how many apots? Anyone have this happen said hes former dentist and then went to face pain. I think he does mri and how much us that have to be a millionaire to get well ive had this pain 9 yrs and on feeding peg i cant drink fluids

Same story for me. Root canal, fiing and extraction kicked off this journey