How DID your TN (Trigeminal Neuralgia) condition "manifested for you?"

Posted , 14 users are following.

Hi Everyone,


I was wondering “IF ANYONE” cares to share ANYTHING about their experience or symptoms of TN ""IN HERE"".


How did it start for you?”

Which were your first symptoms before it all started, and in what part Trigeminal Nerve area??

What steps did you go through, to finally establish “that it was TN?”

What methods, procedures, or medications are you currently taking to help you deal with it?

What seems to trigger your symptoms the most?

How old were you when you first started to feel these TN symptoms, and for how long have you felt them until now??

I DO APOLOGIZE FOR ALL THESE SILLY QUESTIONS, but. There are too many new faces in the world of TN, in which I must include myself, “who would love to hear” how did all get started for you, what have you done to deal with it, and how has it been dealing with it, as far as living your everyday life, since it all started for you??.

I feel this would give us a better understanding, to all of us TN newbie’s.

Having as many responses at once, “ALL IN A SINGLE QUESTION” without having to read here and read there, to find out what has been asked and what has been said about TN.

I WOULD APPRECIATE IT VERY MUCH, if you kind folks can take a brief moment of your valuable time, to share your TN experience “HERE” with all of us.

I feel it would help us gather as much input and information (all at once), all in a single question, or compiled together, to help alleviate, and eliminate some the dreaded confusion about searching here and there to inform our selves about your experiences with TN.


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22 Replies

  • Posted

    Not silly at all!  I was diagnosed September 2013. It started with nerve tingling around the left side of my mouth and started getting bad sharp pains in my mouth. I went to my dentist thinking I may need a root canal??? He did xrays and said everything was fine with my teeth but he had just read an article about TN and said it sounded like what I was feeling. I had made an appointment to see my Dr. but the HORRIBLE sharp pain just continued to increase. It moved from my ear shooting through my cheek I ended up in urgent care. The Dr there did some tests and agreed with my dentist, but could not prescribe the medicine needed. The next morning I got into my Dr and was so miserable my husband had to come with me. I couldn't talk, eat or drink. The pain was unbearable!!!! She prescribed me tegretol. It finally got better after a week or so, all I could do is lay down and try to sleep. I had read that in rare cases it could be caused by a brain tumor but in my folow up appt. my Dr said she thought a MRI was not nessesary and believed it would never come back. February 2014 came evening the tingling started again. Morning came..It started bad again, I started medicine, it was another week or so of HORRIBLE pain. I demanded an MRI at that time. morning I found out I had a brain tumor that was intertwined in the nerves. Had It removed at Mayo Clinic last April and I am pain free! If you haven't  GET a MRI!  I was 55 yrs old   Good Luck...stay strong
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  • Posted

    I have a serious automobile accident on December 9, 2016 my car flipped over. I have a small plastic cooler in the passenger seat and landed on my head on the side of my temple to be exact . Two days later I developed a twitch in my head felt unreal and It build up over time my neurologist said that could've been the cause of my TN I had a MRI and my MRI was stable and because I have multiple sclerosis that is a common predecessor to TN but on my case it was definitely from the car accident it has magnified to at least seven or eight times a day The pain has been horrible I do take take Tegretol, however I easily build up tolerance to it I'm hoping I can get surgery for it because I can't imagine having us or 20 years like some people say that they do there's no way there's no way I could do that Now the pain feels like a wisdom tooth that I know longer have hurts and I get this hot poker in my cheek under My eye it moves around. I can no longer eat my favorite Mexican food until I get a cure for this dreaded disease any questions free to email me thank you,Camille

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  • Posted

    Hi everyone. I'm so glad I've found this! I'm a 48 year old woman who was diagnosed yesterday with TM after going to my local walk in centre in absolute agony. I woke up with a weird ache in the left side of my jaw. By mid afternoon I had what I thought was a mild and unexpected toothache so I took some paracetamol to no avail. By about 5pm the pain had increased somewhat. By 5.30, I had a sudden onset of the most excruciating pain I've ever experienced. It was like the worst imaginable toothache that spread all over my entire jaw, rapidly covering the whole of the left side of my face. I then started with horrendous stabbing pains in my temple. This whole episode lasted for 3 and a half hours in total, coming in waves of severity.

    I've had the stabbing pains in my left temple for years but was told it was cluster migraines as I suffer with migraines, even being hospitalised at one point. I'm now beginning to think that may be wrong,

    Today the horrendous pain has subsided. My face feels like it's been kicked by a horse though! I've had the pains again but not to the extent of yesterday's attack. My GP has started me on Tegretol 100mg twice a day to increase after 10 days if no different.

    It's scared the heck out of me and my kids thought I was having a stroke and forced me to go to the walk in centre. I'm glad I know what it is but a future filled with such horrendous pain fills me with utter dread. Thanks for listening.

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  • Posted

    Hello TN friend! I am glad you are asking questions. It is important for all of us to understand this condition as much as possible in order to find proper help from people/docs, who know what they are doing. There are some who don't have a clue and must be open to learning. 

    Anyway, it started years ago with sharp stabs of pain on ocassion. I didn't know what was going on. And it was so slight I didn't pay much attention to it.

    then it got worse. Thinking it was tooth pain, I went yo a dentist to look at the tooth we thought it was.  Of course, that wasn't it. Finally a dentist who knew what it was told me it was TN.  It got worse and I went to neurologist who put me on drugs and would not give me the name of the surgeon who could end the pain (what a jerk!). The drug worked for a few months, then stopped. I kept being put on more drugs that didn't work, so I, on my own found the surgeon who could help me and got rid of that neurologist.

    the surgeon turned out to be a TN SPECIALIST and having done lots of these surgeries Radio frequency where they burn the nerve and you are functional quickly. Got off drugs

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    • Posted

      Wasn't off drugs. It came back in 11months, did it again, it came back over a year later, did it again, stronger, and am OK so far for over a year.

      am starting to live with no fear. It took a while. Sadly it comes back but I am just happy that there is a treatment and we can get our lives back immediately.  No waiting with this surgery. They just poke a hole in your cheek and burn the nerve. You are pain free of TN immediatelyand can wean off those aweful drugs right away. No waiting.  

      The surgery pain pain is gone in a day.

      i asked if we can just keep doing this until I get old. They said they just did a 90year old woman.

      I am 65. Good luck with getting the help that is now available!

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