My own Trigeminal Neuralgia story | the first 6 months | pain, medication, diagnosis

Oh, sweetheart, I know how you feel. I have been fighting this for almost 20 yrs. I'm from the US and this "disease" is a forever battle. I am so glad you have reached out. So many people do not understand. I have lost friends and family over this. I had 2 MRI's this week, need to go for blood work on Monday, and then the Lumbar Puncture on Wed. I'm the one who does fall to the floor in pain. I pray for you that things get better. You are completely right. After taking meds, I'm sitting in a chair or in bed my brain is so out of it. I spent 4 days in the hospital in Jan. getting IV medications to take my pain away. I was at the point of screaming. It is a long journey and not many Dr.s or Neurologists really know what to do. It's all trial and error. I sometimes think IF the Physicians had this there would be more done to help us. At this time I can only eat finger foods. Nothing can touch my lips. God Bless and as you can keep up with your posts. Keep being strong. Also, my Neurologist put me on anti-depressants. I live with PTSD due to this. Life is never as we knew it.

Thank you for all the information and sharing. I had bad teeth infection. Lost the teeth. After that terrible horrible sorts of pains started, got removed 4 wisdom teeth as well. Pain continued and it seemed it was attached to another teeth, which I wanted to remove also. But was told it is not the teeth causing the pains…The pain gets better at times, but 2 days ago had again the attack after some better period and less pain. Now again feel teeth pain which shoots in the places you are describing. This is entirely destroying my life a years now. But also apartments full of mold and water damage here in Ireland are making health suffer . And of course people don’t believe the pain, but I stop talking about it. It’s isolating. Animals are my best company. Since my pains started I see pain of others people or animals, understand it, and try to help if I can. Pain changed me for better person, and showed me what is important. This are the benefits, but I wish to be pain free, but it always repeats. All the best with your journey ❤

God bless you. Thank you for being so vulnerable and transparent with us all. I was diagnosed with this as well. I had a brain tumor, vistibular Schwannoma, and had brain surgery to remove it. Ever since, I've been having such extreme pain only on my incision side. Across the incision and all across that side of my face. I was diagnosed with TN. I hope you continue to heal and feel better 🖤

As someone who will probably be diagnosed with this soon I wanted to say thank you for your video. Many of the things you said are exactly what I needed and was what I needed to hear because at times I feel alone and frustrated. It can be scary but knowing others have this makes me feel just a bit better if that makes sense. So once again thank you.

I'm so glad I came across your video. I started have pain on the right side of if my face after having a root canal. I went back to the dentist multiple times in pain and they did X-rays and could not find anything wrong. A co-worker recommended that I see an endodontist in case my root canal wasn't done correctly. The endodontist said it sounded like I had Trigeminal Neuralgia. I had no idea what she was talking about and Googled it later on that evening. I have been in denial and struggling about whether or not I should see a doctor about this because my dentist made me feel like I was just making up the pain every time I complained about the pain I was in. Thank you for sharing your story. I had a lump in my throat the entire time while I watched your video because I have felt like no one can understand your pain unless they have felt it too.

Thank you. My Trigeminal neuralgia affects my eyes. It’s like someone is lighting fireworks in them. Thank you for sharing your story with us.

I relate so much to what you are saying. I basically have TN2 as a result of a bad tooth infection 10 years ago. I was trying to get a cracked filling fixed. Dentist determined I did not need a root canal, put a crown on, it was never right after going back to his office numerous times, him making adjustments to the crown, one night it basically felt like it exploded. My guess is there was an abscess that ruptured. I don't really know. I started going numb in my lower jaw right away. He told me that would go away once the infection cleared up. He told me not to go to the emergency room because they couldn't do anything for it anyway (I shouldn't have listened to him). Essentially, after a long root canal, losing two teeth, it was determined the infection had gone into my jaw bone and I had to go on intravenous antibiotics for 8 weeks. Needless to say, 10 years later, I still feel like I'm coming out of being in the dentist chair for a filling and that numb, pins and needles feeling you get as the novacaine is wearing off. Initially, I had the electrical zaps that felt like a lightning storm in my mouth. Sometimes like a lightning strike and other times like watching a lightning storm when the lightning branches across the sky. At first, I did go to a pain specialist and a neurologist and after a while, like you said, I just got tired of explaining over and over again what I was going through. I tolerate things as best as I can. Sometimes I will have a flareup... it seems like this year I've been having a lot more... And I just have to lay down in a dark room with some sort of heating pad and not talk and try not to even think because it all just seems to hurt... For me, it's the entire left side of my face from my lower jaw to my upper teeth, through my nose and eye out the top of my head. I'm considering trying to seek treatment again, but at the same time, I don't want to. Again, I'm fortunate where most of the time, I can deal with it. But days like today are hard. The one thing I can take is baclofen, the muscle relaxer. It does help some. God bless you and all the others going through this too.

Thanks so much for sharing. I am from the US and newly diagnosed. You have been an inspiration.

Oh sweetie, sending hugs and love from the US. I wish you could be seen here. You're very brave and I appreciate that you posted to all the people who also suffer from TN.

Thank you so much for this video! Your story is so incredibly similar to mine and your feelings are exactly how I've been feeling. Please keep sharing because I think it will help a lot of people. Peace to you!

I was diagnosed with trigeminal neuralgia in 2018. Also saw a dentist and referred to neurologist. It’s very intense. It’s been really hard for me too. It happens less often than it used to be still plagued with it. I wish you all good things😊❤️

Hi Nyree Thank you for this video , our paths are very similar and I miss every day life as it used to be and yes there is isolation which is really hard to come to terms with when you have been so active as I was, jumping in the car and going shopping and taking out my dogs is over now, I live in fear of that shocking pain.I am eager to watch all your videos now I have found you, thanks again Nyree

Thank you Nyree for sharing your story and experience. My adult daughter, 28 yrs old started with the pain on January 10, 2022 and was diagnosed at the emergency room with this. After many dr. visits she now has a referral to a Neurologist but no appt. yet...Yesterday her pain was lessened alot after the second day on an increased dose of Tegratol, the same medication you mentioned. It is really good for me to hear your experience so I can better understand it all. I"m an RN and have been reading up on it - I hope you are doing well and will watch more of your videos now. I will also mention to her about your channel so she can look it when she's ready. It has been emotional and difficult for her as well. Thanks for your bravery to share your story and help others. I just want to be the best support person I can be to her. Thank you for your kindness.

I am so thankful for your video and for hearing your story, Nyree. I am new to TN and you are so right that people just don't understand. I haven't been to a neurologist yet - my GP is the one who diagnosed me after I went through the dental work, etc. with no explanation of my pain. (My dentist - unlike yours - obviously had no clue what this was and encouraged me to go to more dental specialists such as a periodontist and endodontist and to have root canals and more intense work done). It is very helpful to know I am not alone and your video was a great explanation of what it's like living with TN - even though we experience our pain in different ways. I pray every day that this will just go away and I suppose I'm still in denial because I want to believe it will. In the meantime, the Trigeminal Neuralgia Network and people like you give comfort to those of us learning to live with this disease. Thank you. I look forward to more videos.

Thank God for compassionate medical professionals. It matters. I enjoyed your very sincere and helpful video. I understand. I have atypical TN and the pain is indescribable. Accepting that life will never be the same.

You are right not many people. Know about this condition it is rare but some of us have it. It happened to me right after I had a tooth pulled. I was good before that. So. This is where I am now.

Thank you so much, you are the first person that I have found that talks about the car rides. Car rides kill me and I never knew if others experienced the same!

Thank you for sharing your story ❤

A huge thank you for sharing your story. Tegretol is also “frying my brain”. There is so much of your story that I can relate to. Please stay strong and take it “one day at a time” and think that tomorrow will be a better day. This a very lonely disease and no matter who you tell how you are feeling, they just cannot relate. I DO!!!

I started with TN two years ago but luckily went into remission, it has just started to come back. Your story has given me a lot of good information. Thank you.