Trigeminal Neuralgia*

Hi Jenn @jennheadlee, Welcome to Mayo Clinic Connect. There is another discussion for Trigeminal Neuralgia where your post will receive more visibility and you will be able to meet other members discussing the condtion. I'm tagging our moderator @lisalucier to see if we should move your discussion into the following discussion. While we wait you may want to read through the discussion and meet some of the other members.

Groups > Brain & Nervous System > Trigeminal Neuralgia*
-- https://connect.mayoclinic.org/discussion/trigeminal-neuralgia-2273cc/

Are you able to share a little more about the symptoms you are having now?

Mayo Clinic’s info on trigeminal neuralgia treatments list a variety of anticonvulsants, antispasmodic agents or botox injections:
-- http://mayocl.in/1Mz18C8

You may wish to read this older discussion thread where Connect members are talking about their experiences with treatment
-- http://mayocl.in/28SOKk5

John

I have been busy, sorry I haven't had time to view my e-mails anywhere. The reason I can say that is that I am not thinking or looking at the time as to when I van take my next pain killer for my pain. I can live with the numbness feeling and when I get into my day I forget about it and live my life. I am 70 years old and never told you people that I was a building contractor. i am building a home for the baby (41 year old), as I have aided or built some kind for the other three children. I can't believe I am doing this and the stamina is still there and on top of that I lost some weight and have gotten my muscle tone back. All this would not be possible if I didn't have the surgery. I did my homework on the doctor and educated myself on my condition. Whatever you have or are going through, just remember the internet is there for you, this coming from a old school contractor with a new way of looking at things. Be well and hope you are as lucky as I have been. Truly wishing you well Carmelo

Dear Carmelo. Thanks for you note and inspiration. I am five months out since second Gammaknife surgery, am off all medication (was on gabapentin for years). Between the first and second surgery the pain was, as it always is, horrific. Most meals were liquid as I could not chew, days I could not speak, and forget teeth brushing!But one foot ahead of the other I managed to stay the course and in fact took up outdoor and indoor (ERG) rowing. In February I won double gold (Masters Div) in the World Championship games in Long Beach, Ca. I recount this because besides being proud of this accomplishment, I retell it to let all of us who have Trigeminal Neuralgia know that you can get ‘outside’ if the pain and not let it be the defining feature of your life. It is not easy, no doubt, but reading your journey and your building a home for family is inspiring. Hope others share stories of moving beyond the pain. Thanks Carmelo

Well John I wasn't happy the way I had to live and when I visited my son and his family that May the year of my surgery (2017) I was living on my pain medication and was not working. I am a no nonsense person I take charge when I need to and this was that moment. I added a second pain-killer to my meds and I had time to research my options. I did my research and choose the right DOCTOR. I never looked back. Your surgery was not a option for me, as my nerve was wrapped around my artery, and as you know the gamma pinpoints the spot and this was not possible in my case. John I will let you on a joke made about this problem to my friends and family. As you know that this is mostly women issue who get effected, so I tell them I am coming out of the closet,lol. Peace to you Carmelo

after that pain this a option I would sign up for. Until you are living in those shoes, you can't compare. My teeth I needed many trip to the dentist to fix that problem, after surgery. You CANNOT brush your teeth, you cannot forget your meds, your life line. You don't have a life, period. A little numbness I'll live with. The options are not in my inventory, or thoughts I just return this evening from seeing that Chinese dance production Shen Yun, I forgot or did't remember any numbness, it has become secondary and try not to dwell on it. It's there when I have nothing to direct my attention on. But again I will take that and consider myself lucky. The fear of it returning is the only thing I sometime dwell on. Would I want to go through that surgery again, I don't know. I am a realist and will address those issues if I have to, right now I am living each and everyday as it could be my last and don't want to miss a minute of it, Peace Carmelo

Hi Jenn I didn't know what I was having, except discomfort when I was eating. So I went to the dentist and she suggested that I was having pain in that area, my upper tooth on the left side, because stuff was getting in from the back of the tooth and dropping into my tooth and that was the pain I was feeling. That tooth had to be removed, according to her. Well I got up and said that was the most idiotic explanation I ever heard and left, never to return to that office again. Later as the pain became more intense I seek a neurologist in my health group and he explained to me without touching me, that I had Trigeminal Neuralgia. He then proceeded to tell me how it would all play out, he was right on and prescribed my first medication. I did my research then about my way of dealing with the pain and lived my life until I had none. I got the surgery, after I found the doctor I felt was my best choice and I am 1000 % better. I keep stressing this point that you are your best advocate for what you have or need and pursue that first, if you feel adamant as I felt, do your homework and get all the information that YOU need and then decide with all that info, what is the best course for you. I hope that helps you in your journey to a solution of what you are going through.

@carmelo1marrone...teeth pain was my first indication of trigeminal N. After having teeth and a bridge removed, I was diagnosed. Food entrapment on left side, off center causes terrible pain. Always . At least now I know and don't beg to have tooth pulled, lol. The pain has spread to all the branches, but have pain without the zaps. So I guess that's type 2 TN.

Pain in my head is always. But sometimes have a hard time distinguishing if it's truly trigeminal or if it's from stroke I had 3 years ago.

@carol94, Would you please let us know what medications are helping you? I have used several but they don't seem to be working anymore. Thanks so much

I started with oxcarbazepine only when I felt the discomfort half in morning and half at night. That worked for a few years, because the discomfort wasn't on a regular basis. After I had my first attack (electric shock,) that lasted for 15 minutes on and off pain in the time, which you knew the next bout of pain was coming and you couldn't do anything about, but hope it wouldn't last as long as the last one. As the years went by the attacked were coming and I used the meds to stop pain before it came. It got to a point that the med didn't work and added another called gabapentin which pick-up the slack that oxcarbazepine wasn't doing on its own. When that happen I seek out a surgeon and had the mvd done. I spoke to many people I know who had or still have TN, everybody is different and your going to have your doctor and you figure out whats going to work for you. I know I was not going to be living or existing on drugs to get thru the day. if I had another option, which I took.. I am grateful every day to live a full day without meds and pain. Be well Carmelo.

Hi everyone. I just joined and was recently diagnosed with SFN earlier this week, after struggling with many difficult symptoms for over 18 months. The main question two questions I have are 1) does anyone suffer from SFN affecting their cranial nerves? I’ve had burning in my right ear, right side of my tongue and throat since this all started fall of 2017. 2) does SFN cause muscle twitching for anyone?

I was originally told this was affecting my trigemnial nwrve, but it’s more body wide now. However, the most pain I feel is constant burning pain in my ear mouth and throat.

I have follow up tests next week as my neurologist continue to try to pinpoint the cause of the SFN. They have been skeptical of my symptoms up to now, since they couldn’t find a cause until the recent punch biopsy. I’m on lyrica but it doesn’t offer enough help, especially for the burning pain in my face and mouth. Any treatment suggestions would be incredible. Thank for your time!