My own Trigeminal Neuralgia story | the first 6 months | pain, medication, diagnosis
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- Опубліковано 24 чер 2021
- My Trigeminal Neuralgia story. Living with TN is far from easy. I explain my symptoms, medication, daily life & diagnosis. 6 months in, I'm hoping my Trigeminal Neuralgia story and TN journey will bring comfort and support as I explain what it's like to live with this disease. I hope to track my Trigeminal Neuralgia experiences as time goes on through more videos. I also believe that there is a need to be more aware of what this condition is, and what it's like to live with. Please subscribe and click the notification bell if you would like to know when I bring out another video.
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.
I'm sorry that you suffer from this awful disease .
I've had this disease for about 32years.
I have had two MVD Ballon and all my teeth removed when no Dr would help me. It is now in my eye and nose along with my side of my face. This sure is the worst I could ever wish on anyone. I pray someone will help us. God Bless. Lets keep us all informed. We are all strong.
Go to a Nucca chiropractor. In Illinois we have Dr Brian Laneville on Rt 83 at 75th st in Willowbrook Illinois. It will cost you around 200 dollars for xrays and 1 adjustment. Maybe you can stay in town for one week and get a couple of adjustments to make sure the adjustment stays. Dr Bryan did 3 extra years of study.Three years longer than any normal chiropractor. If you watch the Trigminal Neuralgia video on youtube by caring medical called Trigeminal Neuralgia, Strange Sensations in the face throat....Dr Hauser says at 29 seconds....the cause is irritation of cervical vertebrae...specifically C1. Nucca chropractors adjust C1 which is inside the head and almost NO chiropractors know how to do this. Pain meds are NOT the answer. Doctors are being VERY DISHONEST as to the real cause of this. They should have chiropractors IN THE EMERGENCY ROOM. Nucca adjustments are the easiest and safest adjustments and no twisting or pain is involved. If you don't fix the cause (nerve is entrapped by the off center vertebrae), you wont get rid of the problem.
@@dollymadeson3963 podría enviar el enlace de youtube por favor ya que e buscado como usted lo publico y no lo encontre
I’m 23 years with TN & anesthesia Dolorosa. In early 2000 I had a root canal on a tooth that was sensitive so he said we’d do a root canal. During this procedure the dds went thru the tooth and hit the nerve. I cried out in pain, I think i jumped out of the chair. He referred me to an Endodontist Dr. John K. Seldom in The Woodlands, TX; Woodlands where he hit the nerve again. On my next appointment was just a chance for him to tell me that he wouldn’t ever work on me again bc how I acted in his office. Jay Selden in The Woodlands, TX. Who does this? I am not letigious, but if I had sued I may have recovered some $ that I could have saved.
This can be a lifelong condition and 23 years is a lifetime. I’ve lost friends and family. I suffer from PTSD. In 2019 I tripped and fell onto a rusty metal spike. I ran to my husband and he put be disinfectant for wounds but the next morning it was a balloon they gave me antibiotics and 4 days later I was throwing up and diahreea and it was in my hair. And I remember the dr said he would have to intubate me. I had 40% lung function and severe sepsis. My husband was told I probably would not survive.
After throwing the book of antibiotics at me it wasn’t until they gave me Vancomycin that I stated to make the turn. I was in ccu for 12 days and hospitalized for 15. I had to learn to walk. Atrophy in my arms and legs. I weighted 116 lbs.
Two months later I had breast cancer. Stage one and it was behind the nipple and pea size so a day surgery and 3 weeks of radiation. Then 2020 that the pandemic. At the moment I’m no longer in pain. Groggy due to the meds, but much better.
I took gabapentin, clonazepam, Cevelimine for dry mouth. I just watched a video that gave me hope. Maybe a MRI, but something I’ve never seen before.
So my niece the one I loved so much says she didn’t call me a terrorist she. Claims emphatically that “I said, that you act like a terrorist “. So while I had cancer they had a chat about me. She turned my lovely niece, her half sister 25 stopped talking to me.
We had rsvp to her daughters wedding. My husband and I adored both of her kids. I think she doesn’t believe me!
4 days ago I was at Fantom of the Opera. Shortly into the show I began having chronic pain. By the end I was crying. Bill Anlyan took hold and ran me to our hotel in Trafalgar Square.
Since then I’ve been in excruciating pain, contemplating suicide.
Pray for me. I think I need to try some new things, especially a new mri to get the Teflon pad that’s been dislodged. I’m gonna try to live but I can’t be sure that I won’t.
I hear you dear soul. Have struggled with this for 17 years. I have had Vascular Decompression Surgery which helped for 10 months. I have also had another procedure which injects something into the nerve. This helped for 7 months. I will soon be 80 so prefer not to have any other procedures done. I am blessed the TN is not always as painful as other times. God HELP all those who suffer from this disease.💙🙏💙💕🇨🇦
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 ❤
Sorry to hear about your difficult experiences. I hope things become more stable for you 🙏
@@Letsfaceittogether Thank you 🙏
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'm so pleased it's helping. It's hard to talk about illness 🤒 especially when every story is different. People having been telling me it's helped them...so I'm going to try and keep sharing 🙂
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..my journey through is changing all the time. I'm due to do an update soon. Many thanks for taking the time to watch my video x
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.
Thank you for watching Chris and being part of my channel
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, Margaret. I am doing a lot better now. Things have improved
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.
So glad you have found the channel. Like you say, it may be a bit emotional for her to hear about another person's journey. I do think tegratol 🤔 is a very effective drug, if she can cope with the side effects. I hope to post within the next week or so. Thank you for your kind words x
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.
Lovely to get the feedback. Yes I was so lucky that I didn't end up with more dentistry. I'm glad the video has helped x I would say I was in denial until quite recently which is why I've been able to make the video now. There's still a part of me that hopes! X
Thanks so much for sharing. I am from the US and newly diagnosed. You have been an inspiration.
Thank you, Peggy ❤️ 😊
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.
Yes, compassion makes a big difference. Thank you for your understanding 🙏
Thank you for sharing your story ❤
Thank you ❤️ for watching
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 🖤
This must be so difficult for you. I hope you can find some relief for your pain. I am actually doing a lot better. Thank you for wishing me His blessings 🙌 🙏
You describe it so well. Very close to my experiences; also in UK.
Thanks for your feedback Paul and your encouragement 👍
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.
You are so welcome! I’m really glad it has helped in a small way to comfort you.
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!
Yes, they were a real problem in the early days of my diagnosis. I’m glad the channel is helping you, thank you for watching
Yes, I have experienced the same. I am a gardener so I am always moving and then getting into the car and being still while driving seemed to really trigger attacks all the time.
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!!!
Thank you so much. Yes the isolation really is a problem 🙄. I'm glad it was helpful and I'm going to keep sharing...it feels great to know others can relate x
Tegretol is awful. I have had several bouts with Tegretol toxicity several times. Please remember to have your levels checked several times a year.
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 so much for your kind words. It's extremely tough at the beginning of this journey. I'm glad in the end someone started listening to you! Check out my channel to see the progress I've made. God bless 🙌 🙏 ❤️
This is almost identical to my experience of only a few weeks ago. Having tapped in face/electric shocks, the results coming up were TN which I'd never heard of. Following a visit to my GP who confirmed the diagnosis, I went on to explain to my dentist that I would rather delay having more teeth pulled out and I was met with a most curt and dismissive reply! The dentist governing body should wake up to the fact that (UK dentists in my case) are untrained in spotting this horrible disease.
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.
I'm sorry to hear it's come back, Nigel, but I'm glad the videos are helping
That is my case. Botched root canal then diagnosed with TN, 6 mths gabapetin, 2 yrs remission, and now it's back!
@Mary Fiorentino Sorry to hear this Mary
Thank you so much,,,, I now know why I get my worst attacks in the car,,, I haven’t had a bad flare up in 3 days because I haven’t drove,,,it’s a scary, life destroying disease ,,so grateful for your information,,comforting to know we are not alone,,god bless 🙏🏽
Joanne, glad it's helped yoh a little. You will gradually work out what's going on. Also thongs can calm down after a while on meds. It may not always be in 'flare up' mode. God bless too
This same thing happens to,me when i take a hot shower 🚿 it's like intesnifies the pain and lasts for,up,to,3 hours straight after showering
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 👋...yes it's so hard to get used to. I'm also doing a lot better but it's always there. Thank you for supporting the chsnnel!
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.
Thank you for taking the time to watch and comment. I hope you find some sort of relief over time. God bless
Your story sounds like my own, except it wasn't a dentist, but my primary dr. and I from doing research on my pain. You are right,no one understands the pain and some think that this invisable disease is just that to some and they can't even image. I did well on the first med and it sent me to thr hospiyal so i hab\ve been on topirate. Thank you for sharing your story, I am a preschool teacher and it is hard especially bad days!
Hi Michelle 👋 lovely to meet you. Really hard to have to carry on in employment...I feel for you. For me, its got a little better over time. I've learnt about what I can and can't do c
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.
I found this post my MVD and your sharing was/is the most helpful of anything I have seen and I looked at lots-I think it is you that makes the difference as you are so genuine and even calming which God knows we need with this. I sit here with gratitude and hope that all this time gone by you are thriving in the way that you can….
Thank you John. I'm doing much better. Good days and bad days of course! But things are stable for the time being. I appreciate the kind words
How was mvd for you??
@@iballslide7604 Surgery itself went very well and recovery from it, however, that recovery was complicated by my having experienced significant heart issues following surgery which resulted in a stay in the ICU. After d/c, with support at home, within a few days my spouse died suddenly and quite unexpectedly (beyond words), It has taken a long time to gain strength. More specifically, I weaned off Gabapentin after 4 weeks. Post surgery, I reported to my surgeon that I was having some sparking sensation just under and around my right high cheek bone and was told this was "artifact" from the surgery and would go away. It has lessened considerably but remains while not requiring any medicine; in itself not bad. In my more vulnerable state of grief, however, it has scared me; a fear of returning TN. THAT MAY NEVER HAPPEN (and it better not! I am forever grateful that I had surgery early in my journey TN (not all the rest of it!) and experienced excellent care. Very nasty business this TN and as I become more able, it is my intention to find all ways I can to be supportive of others, as several have been for me. A long answer to you question and it is just about my experience.
@Gaurav Chauhan Surgery itself went very well and recovery from it, however, that recovery was complicated by my having experienced significant heart issues following surgery which resulted in a stay in the ICU. After d/c, with support at home, within a few days my spouse died suddenly and quite unexpectedly (beyond words), It has taken a long time to gain strength. More specifically, I weaned off Gabapentin after 4 weeks. Post surgery, I reported to my surgeon that I was having some sparking sensation just under and around my right high cheek bone and was told this was "artifact" from the surgery and would go away. It has lessened considerably but remains while not requiring any medicine; in itself not bad. In my more vulnerable state of grief, however, it has scared me; a fear of returning TN. THAT MAY NEVER HAPPEN (and it better not! I am forever grateful that I had surgery early in my journey TN (not all the rest of it!) and experienced excellent care. Very nasty business this TN and as I become more able, it is my intention to find all ways I can to be supportive of others, as several have been for me. A long answer to you question and it is just about my experience.
@Gaurav Chauhan Hi, heart issue unrelated to surgery specifically--afib developed and a slow heartbeat requiring a pacemaker. Yes, perhaps stress of surgery contributed, but it was likely something that just happened and it is in my family--complicated matters though. Day after surgery, I felt just fine. I said at the time that my face just felt normal, like both sides were the same and I realized this had not been true. My MVD surgery and recovery went very well, and again while I have some tingling, I do not have pain. Hope this helps. If you really can't take medicine, and you have a good surgeon that has checked you out with the proper MRI, it is worth considering for sure. There are, of course, other options.
Guess I have a lot to learn about this. I too thought that I needed a tooth pulled. Swore I had an abscess because the pain over time spread up to my ear and along my jaw.
I didn't know it was progressive. The pulls are finally working although I have swelling in my feet and legs. Mine was caused from a brain injury in a car accident.
I will keep following you. Thank you for sharing your story
It’s such a big adjustment to start with but over time things balanced out for me. Thank you for watching. I hope to do another video soon. Glad the pills are working for you
Thanks Nyree, your video is much appreciated.
For nine months or so, I had what I thought was a bad tooth coming on. I noted that when I rubbed my left check with a towel, I got a mild shooting pain in my top row of teeth. Two trips to the dentist over that time resulted in no indication of any dental issues. I did have a tooth out in that area two years ago.
This Xmas, I had a series of attacks of what I now realise is type 1 TN. The pain was now in my lower jaw, from the hinge to half way along. I thought I had a pretty high pain threshold, till I felt this pain. Shocking, stabbing, gripping and knee-bendingly awful. Over 4 days, the attacks evolved to shorter, but more frequent. The attacks were associated with talking and eating
Having some medical knowledge, I researched and decided that TN was the most likely. My Doctor cautiously agreed and prescribed the drug Pregabalin. He said it will be a diagnostic tool to indicate if it is actually TN. From the first dose it virtually eliminated the serious attacks. For the first week, I continued to have mild electrical like pain, inability to lay on my left side and a couple of very short bursts of intense pain. I noted that the nerve was more active after a cup of coffee, and I have now switched to tea and will eventually move to nil caffeine.
Three weeks in, I have no pain, apart from a sensitive area on my top lip that gives a mild shock if rubbed. The drug I am taking is still a low dose and thankfully has very mild side effects..
I know I am at the early stages of a disease that can evolve and my journey is just beginning. You are right to say everybodies experience of TN is a bit different and hearing each other's stories is so helpful. Thanks again for your courageous video. All the best, John.
Hi John, its so great to hear from you. Its reassuring to know how quickly the medication helped you. I'm doing so much better myself than those early days. Thank you for supporting the channel.
@@Letsfaceittogether Thank you for reply, Nyree. It is great to hear you are doing well. All the best to you for better days!
@Gaurav Chauhan Hi Gaurav,
I have not have had any MRIs. I know about the Nerve Decompression surgery, but I would consider that a last resort.
I still get electrical 'activity' in my jaw along the lower teeth and in the hinge, but no where near the intensity of the original attack. I have periods of remission and periods of activity. Most of the time the activity is at the level of annoying.
I still take the minimum dose of Pregabalin. No side effects. I do use massage on the jaw muscles which seems to help.
How about you?
May God Help you.
Your testimony is Helpful. Thank you for Sharing 🙏🏽
Thank you ❤️ 😊
Thanks for sharing my dear.
You are welcome 😊 🙏
Thank you for the info. I’m on vacation and at the start about a 10 days ago this started. I called my dentist and quickly figured out this is more in my neuros wheelhouse. I’ve had MS for 30 years. Never heard of this. On my way home today and have an RX waiting for me. This pain is horrific. But I’m hoping the meds will help.
You are welcome 😊 I'm sorry to hear about the MS & now the extra pain to cope with. I'm sure the meds will help
Thank you soooo much for sharing this. Our story parallels in many ways. It is isolating. Management is an uphill battle, especially if you have other health conditions that trigger flares. It is important to share your journey if your able. I appreciate you. Don't give up. Your family is supportive and that is key. Love and blessings from USA. ❤
Thank you! I am doing a lot better now, a few years on. It's still a struggle, but I feel I understand my triggers better
Thank you nyree for sharing your journey. I to have TN but mine is bilateral though its worse in the left side of my face. My pain is always in Both sides of my jaw upper and lower it goes in to mouth and throat. I had had doctors who understood TN. and believed me. My flair ups are constant at the moment. My pain started in the first lockdown November on and off. It gradually got worse and worse until last October when it was at a 10 most of the time. My TN is hard to describe that why it taken so long and not being able see doctors as frequently as normal with covid. It zaps stabs nails and needle and neurophysiology at times thrown in the mix. The my worries about MS with me I’m still waiting mri. I’m
Oxcarbamazepine. I’ve had problems finding meds that work.
I think the biggest problem with TN is finding doctors or health professionals who understand it and know how to treat it. It can make all the difference to have someone understanding. its very hard to know which type of pain is worse too. The sudden stabbing shocks or the longer deep burning pains. Thank you for reaching out to me and commenting. I hope you flare up subsides soon.
Similar story
I was diagnosed this year with TN. I have had an MRI and also did not show anything. I have different kind of pains, electric, headache, migraine and I have a sharp pain in my ears, but I am not taking Tegretol because of a lot of side effects and I still study. I have a luck that ibuprofen or paracetamol is helping me and I hope TN will not get worse. I am from Slovenia and population in our country is 2 million and not many people have it and understand how it is to live with it. I am also taking vit B12, other vitamin B, omega 3 and alfa lipoic acid and helps me dealing with my pain. I am still young and I hope I will recover one day. I am also more isolated than I was before but I like peace and it is no such a problem for me. I pray every day and I know God is good. I am so thankful for all of you who are willing to speak about TN, I get so emotional...
I am so glad that you are finding the channel helpful. TN can be so isolating. I post a video about once a month and I am much improved from this first video. But I still have my bad days with similar pain to what you are describing. Like you say, God is good and we find a way through!
@@Letsfaceittogether i agree. I found some websites where there are different options how to repair trigeminal nerve. Have you ever think about grafting operation for tn? I do not know if this is available in our country but It should be in yours i think? I am just searching all of the options. I wish you all the best in 2023, improved health, a lot of love and life without pain. God bless you🌻
@Gaurav Chauhan Chauhan I had mri without cis sequence. I will also do test for my jawline joint, because it can be Tmj.. what hurts me the most is my ear and tension headaches behind ears. But also sharp pain in my nerve. I forgot to mention The lion mane mushroom is also very good for nerves and can reduce pain episodes.
@Gaurav Chauhan my neurologist gave me referral for mri without contrast. I know my neuralgia started after I was injured with the injection ( hitted nerve in my chin) but doctor said this is not possible. But I am not sure because nerves repair after time and there are so many reasons why this started. And also my jaw is crunching.. I will tell my results for my jaw joints. Sorry for my English grammar and thank you for your advice. 😌
@Gaurav Chauhan I am very glad you mention this because I have another neurologist in July and I will ask for mri cis sequence, thank you but I doubt I will get referral cuz I already had an mri. Yes I have had a burning sensation and sharp pain is just in area of my ear and sometimes electric sharp pain in mandibular side. For Tmj I need a scan for orthopan and scan for jaw joint. And after that I will go to a specialist for this.
Thank you so much for sharing this...ive been trying to find other people's symptoms. I started getting electric shock pains a few days ago in the right side of my face. I also just recently started to get more jaw and mandible pain which is totally different from my TMJ issues (it subluxes and dislocates/gets stuck open). But this is totally different. My support group in the Ehlers danlos society said it could be trigeminal neuralgia and this seems to fit. I just don't know who to go and see for help. Thank you again.
I'm sorry to hear that you 😔 may have this, but I'm glad the video has helped. I would say your regular doctor, but it's different here in the uk
I am 55 and 12 days ago I started getting these symptoms. 2 days ago I was diagnosed with TN. I have Idiopathic Intracranial hypertension, and they think that it was caused by that. Mine is the lightning bolt strike to the right side of my head. Thank you for sharing your story.
I'm so sorry that you are suffering from this. I hope that over time, they will help you relieve the pain. Welcome 🙏 to the channel.
Massage Therapy has been known to help calm down and desensitize neuro pain. Cranial Sacral Therapy is also helpful. Having someone to give you a detailed massage to your scalp to your neck and shoulders which helps to relieve tension areas. Also there are massage techniques that you can use to help desensitize nerve pain. It is worth the try! Also some gentle passive stretching of the cervical neck may help also. Many blessings! ❤
I have had this over 10 years and still cannot get used to it and to all those meds and people who don't understand especially those around you
I'm sorry to hear you have had it all those years. But yes, it's a tough thing to live with, when so few understand it. Thank you so much for supporting my channel.
I suffer with it too. its the pits. but lately I have found that exercise is good. A brisk walk to get the heart beating and blood pumping distracts the pain away
Yes, that's a positive way of dealing with it if you can.
I’m going to have hemi facial surgery for twitching in my face it started soon after a tooth extraction had Botox never did any good for me. Pray that everything goes well for me. I know what you are going through
Theresa, wishing you all love and prayers
Im coming up to 2 years with TN now. Thank you for sharing your story resonated with me.
Thank you Luna for your feedback. I'm glad it made sense to you. I'm much better than I was...about 18 months on!
@@Letsfaceittogether Thats womderful to hear that you are doing better. I thank you for sharing so openly it helps to hear stories that sound similar to my own it makes me feel like im not the only one out here dealing w this thing on the daily.
@@lunalite1817 absolutely the isolation is the worst part about it
I have seen a holistic chiropractor that does low level laser therapy. So far has helped me without using meds!
That's great news. I'm glad it's helping
How are you feeling now? I have started this therapy at home with a machine I bought and I’m curious if it is something that will help.
IT IS SO COMFORTING KNOWING OTHERS KNOW WHAT ITS LIKE DIFFERENT IN SOME WAYS TOOK 2 YRS OF CHRONIC PAIN B4 I DIAGNOZED IM ON STRONG PAIN RELIEF AND YES IT ISOLATES ME I CANT MAKE PLANS IT COMES ON SO QUICKLY YOU HAVE. NO CONTROL I WOULDNT WISH THIS ON ANYONE IVE ACCEPTED IT IM NEARLY 72 MY QUALITY OF LIFE IS NOT HOW ID LIKE IT GOD HELP US ALL THANKYOU AGAIN 😊
Thank you for your encouragement 🙏...accepting this disease is part of life, is very difficult.
I have bilateral TN which started as polyneuropathy and went up to my face. It started as widespread numbness and sharp pain my ears sensative to touch. I have a lot throat pain hard time with my voice talking too much hurts in a very sharp way. I'm still trying to get testing done being referred to many doctors to find the cause because it's getting worse. I'm trying to educate myself and see if it is a comorbidity of premature aging due to my cerebral palsy
I think it's so hard to deal with bilateral pain! I too get very sharp pain in my ear. I hope that you find some answers...but most of all I hope that you find ways of coping with the pain. Thank you so much for watching my video...there are some more on the channel x
Try cupping for trigeminal neuralgia on the face and the back for about three months and hopefully you’ll feel better 🌸
Yes! Thank you!
@@Letsfaceittogether also try Transcentaneous Electrical Nerve Stimulation treatment at the chiropractor hope this will make the remissions period longer 🤲🏽
Thank you for sharing your story. My late mother had it and she would scream in pain. I was shocked that her her geriatric doctor couldn't diagnose it. She went on in pain for 6 months before being referred to a neurologist.long story short, she had a balloon blockage done and never had the pain again.
It is one of those things that takes a long time to diagnose. So glad your late mother's story had a happy ending!
What is balloon blockage??
@@iballslide7604 A neurologist surgeon places a Ballon over the nerve to stop the friction and alleviates the pain. It depends on your case but it helped my mother.
@@patsmith6946 did she have any vascular contact in mri on nerve
@@iballslide7604 I don't think that she did. She had no vascular problems.
I use a hot water bottle inside a tea towel & lay down in silence. It has been helpful & also a tea towel size heat pap, also the medication. 💊 x
Yes, these are all things I've tried too x
Have you considered you might have TMD? It also impacts the TN since they are so closely related. Correcting your bite might help elevate the symptoms. You have to find an orthodontist who specializes in TMD and uses DTR as a tool, an oral-facial therapist to help with tension in the face, and a cervical chiropractor to ensure the spine (C1-C7) is aligned. I feel this is the only way to get rid of all of these symptoms permanently. It’s good to use the medication, but it’s important to find the root cause.
Hi 👋 I'm sure it's possible there could be a lot of things wrong, but for now, I'm happy with the treatment and diagnosis I've been given. Thank you for being part of my channel
Ive had it for 8 years and im taking Tegratol as well. I was taking 3 in the morning and 3 at night along with Gabapentin and Estela pram. I felt like a junkie and i slept all day, no life. Ive been on Disability for six years. They lowered my dosage so my pain is coming back. I have a Neurologist taking care of me because its a Brain issue as well as nerve. May be this will help.
You have definitely been on a very difficult journey. I'm glad you have a neurologist on board. I pray they can keep your pain levels down. Thank you for supporting the channel.
My god, I’ve had this pain for 9 months it started on July 4th 2021 when I had a breakdown after a build up of multiple traumatic stress inducing events. I continued with the pain for like 6 months until I had enough and went to the ER for an MRI since I couldn’t stand the pain. I thought I might have a tumor but nothing was found. So I went home and just wondered what the hell could be wrong, I was told to try to see a neurologist but I’m a big procrastinator and didn’t see a primary doctor until 9 month+ which was this week, she explained to me how I most likely have trigeminal neuralgia. The part that effects me is the ophthalmic zone, just right at the tip of my eyebrow, very sharp intense pain. I’ve been on oxcarbazepine for two days now and my pain has reduced immensely!!!! Only downside is the medication makes me very nauseous and very drowsy. Also I have major double vision due to my trigeminal neuralgia! Nonetheless I am on a waiting list to see a neurologist and finally feel glad to know what my diagnosis is! For 9 months so many people around me made me feel like I was crazy, or exaggerating. No one knows the pain others could be experiencing in their body. I find it to explain other things that happened to me as well! I went in to get four wisdom teeth removed and had my jaw open for like 1hr + no break or anything, shortly after my dental surgery I became extremely ill. It was ruled out as a dry socket but now that I’m aware of this trigeminal nerve and already being affected by trigeminal neuralgia I believe that surgery affected my mandibular zone because anti biotics were not helping me after 2+ weeks nor were all the narcotics they were giving me, my jaw locked and I mean locked I couldn’t eat for two-three weeks had to drink protein shakes because my mouth would only open 2cm at most!!!! The pain I felt was so excruciating I ended up in the ER because if I had felt that pain for one more day I really wanted to kill myself with all the narcos the dentist gave me, I believe that surgery further made me feel tremendous horrible pain I wish upon no one! I eventually got better with muscle relaxers for my pain and nerves but my god this can be a horrible thing to live with if it goes undiagnosed and untreated. I wish the best to everyone on their TN journey!!! You are not alone. So far I don’t have much negative things to say about the medication because it is taking that facial nerve pain away! Went from a 10 to a 2 in two days with the medication!!
Absolutely 💯...if the meds help with the pain to get you through the day..then it's worth it. Like you say, they can make you very drowsy. I hope things can gradually improve for you x
Sorry to hear that, which medicine did they give you? 🙏
Currently laying down in the dark just listening to this I feel like the room is spinning, I do feel that “drunk” feeling :(
Yes it can feel like that for sure. I found my body adjusted over time
@@Letsfaceittogether that’s great news!!! Gives me hope!!
Same I also apply topical Organic Castor Oil and heating pad to face it does help
I just wanted to say my heart breaks for you. I have TN also. I am now 68. The demon in my face started when I was 40. I took a bite of a "jordan almond". I was driving at the time. I was lucky not to hit the car in front of me. The pain that jolted through my jaw and face felt like a lightening bolt. I cannot go through my whole story here, but I am one of the lucky ones. Dr. Peter Jannetta, the doctor that created the MVD procedure, operated on me. I am always on gabapentin for the residual pain from the damaged trigeminal nerve. Occasionally, I get a twinge of pain, but otherwise, the demon in my face has been gone since the year 2001. My story is very long. Maybe I should leave my story on you tube also. I would love to help anyone that is feeling alone and defeated. It is a very lonely disease.
Yes, Kathleen people need to hear lots of stories about this. I'm doing a lot better these days. Thankfully!
@Letsfaceittogether I am so happy to hear that you are doing better. It is a devastating, isolating disease. My husband was not as supportive as it sounds like yours is. I think bc it is not a "visible" disability, those around you can only take your word for how horrible the pain is, etc.
Sis am scared at least they should tell me that it’s a major surgery MVD but the pain am going through is more worse and tinnitus too. Yesterday after the MRI is done they told it’s TN and suggested some medication if not feeling on still then on April 6th need to re visit and discuss about MVD surgery they mentioned it’s a major surgery as it is Grade 3 is surgery bad
Try to take it a day at a time. The medication has really helped me, but it's worth considering all the options open to you.
I have had tn 34 yrs worst pain ever dropped to my knees at times 2yrs ago had gamma knife radiation at st micheals hospital out patient in Toronto took 8months before it worked but I have no tn pain in 2 yrs unbelievable I also take carmazapine Lycra amitriptiline 150 mg a day I have ms
I'm so glad they found a solution to your pain. That's great news
I think I want Gama Knife treatment. I live near Toronto. I am waiting to see a neurologist and taking meds to get by. Were you referred by a neurologist?
Your situation sounds similar to mine. I caught the Epstein-Barr virus and now have trigeminal neuralgia. My pain was extreme at first before medication. I have burning mouth syndrome from it. It's totally changed my life from being happy to now having extreme anxiety and depression. I'm seeing a neurologist that is guiding me through this. Hoping to find some relief! Thank you for posting this video.
It's definitely a shock and a life changer. I hope things improve for you
You said you initially had pain on one side of your throat and they thought it could be a gland. What kind of pain did it feel like this area? I feel “sore” and tender in that exact area. No sharp pain, no shooting pain, just tender. My teeth on that side have been hurting after I had a deep filling in my back tooth.
It was a very painful deep pain, enough to make it hard for me to eat and talk x
My trigeminal nerve pain started 8 years ago. It felt like a blip on the radar, and came every few months. Now it seems to have settled at the edge of my jaw. I’ve been checking online and came across a medical article that talks about a possible link with Zoster herpes vaccine which I had taken just months before it started. I’m going to continue to research all I can. Mine is atypical because I have not had any dental problems associated with it.
I hope you find some answers. Thank you for watching my channel
When i was diagnosed, and i read about it, i cried. It terrified me. I was right to be terrified. Shit gets worse as time goes by. Ugh laying down is one of my worst triggers . Its rough. I cant ever sleep. I dont go anywhere anymore. Only to doctor appointments. My husband helps me tons. He goes above and beyond. He the man! I couldn't do this if he wasnt here. He keeps me going.. im in America so once i finally got into neurosurgeon things went quick. Mvd surgery didnt help me. Made it worse. Balloon surgery, numbing the entire right side if my face damaging all 3 branches of my Trigeminal nerve helped. But my tooth still hurts. Guess who has a failed root canal thats been bad for 2 years in my mouth. Hopefully i dont have permanent damage when they pull it in a few days. To say im angry is a understatement of a life time! Its been absolutely hell! For 2 years! For a bad tooth! I cant tell u what i want to do, cops may bang on my door. Pain has been mindboggling bad. I scream my self horse, bawl and cry because my dentist is a absolute idiot!
really sorry to hear such a difficult story! we put our trust in the professional people. I hope that things settle down for you now xx
But why mvd did not help you ...did you have any vascular compression on trigeminal nerve before as you went for mvd??
Hi everyone. Today I was having a super bad day with a migraine also. I got scared because my lips got numb and my arm. I also have trouble with one eye and sometimes my ear will feel full. Has anyone experienced soreness or scalp pain? I’m 66 years old and have had a lot of dental work done ie 17 root canals This started suddenly one night with what I thought was another abcessed tooth but then it moved to the other side of my mouth. I’ve had 3 gamma knife procedures which didn’t seem to help. I’m too old to do the mdecompression brain surgery which I don’t believe works anyway. I’ve on read about it not working or coming back later so that is my opinion couldn’t take carbamazepine, so I’m on morphine which doesn’t work that great anymore cos I’ve been on it 12 years. I feel really sad because I don’t feel like I have much life right now. This is my story. Thank you all for sharing. Sending prayers to everyone and thank you for letting me vent. TK in USA
I'm so sorry 😞 to hear you're story. You have been through such a lot. Of course, you will have our love and prayers. Nyree
Hi iam thinking about getting an mri i had a couple of upper molars removed and ever since i have had facial pain whay aera do you live in many thanks
Yes, it's probably worth it. I live in the UK
I keep going back to the dentist as well and she keeps sending me away, did tooth in question have an infection? My pain is near two root canals
No, it Never had an infection which is how she knew it was trigeminal neuralgia. Hope you find relief soon.
@@Letsfaceittogether thank you
That's how mine started an infected root canal.
Is there anything we can apply topically inside the mouth on the teeth and gums as that's where my pain is like a gel or cream?
I don't think so, as the nerve pain comes from within. However, I'm not an expert, so there may be some options!
YES! ORGANIC CASTOR OIL ALL over face and neck I use spring valley organic castor oil and a heating pad on my face it helps if your at a 10 and suicidal for sure
Hello I was just wondering if you actually had pain in your inner ear. I just got diagnosed this but I get a shocking pain in my ear it’s awful. I just started to take carbamazepine and I can not function on it. I have no pain in my face it’s so strange but only in my ear
Yes, pain in my ear was and is very common. It can be very intense. It took me a long time to adjust to carbamazepine x
How long does the treatment last with carbamazepine? I read its anywhere from 6-12 months.
It works with each tablet. It’s a daily effect.
A pharmacist told me that, to be effective, carbamazepine must be taken every day.
thank you for doing this video. do your teeth fit btw? it looks like you're deviating a bit when you close
Do you mean..do I still think it could be my teeth 😬?
@@Letsfaceittogether well yeah. did you think it was your teeth before?
@@ollied2025 yes, was convinced it was a troublesome tooth x
@@Letsfaceittogether well maybe it is a tooth or maybe its the way your teeth fit putting pressure on a nerve near your joint
@@ollied2025 it could be...but they don't think so, they don't think it's anything to do with my teeth
Hi all i trigeminal neuralgia I have one doctor in Australia can operate or one overseas in India a client of mind who is a neuro surgeon. I go to some doctors they say don't need surgery but send me away in pain hell.
Healing love to all.
It's a very difficult decision 😕 maybe, wait a bit and see if things settle down? 🤔
I can’t function at all. The pain is so bad. 10+. I can’t imagine being in continued pain until a doctor sees me. I have approximately 30 more days you just want to give up like you don’t feel you can make it.
Maybe you could go to an emergency room to get immediate treatment
Hold on I know it’s hard but I had gamma knife surgery for this and it is starting to to inprove
Do you happen to have hypomobility my mum had severe ms i have fybromyalgia upperbody constant and tn is related to this to having another mri next week so hard pain everyday my mum had tn when she was 15 got severe ms at 59
Hi, no, i don't think I do. I'm sure evert case is different. Thank you for supporting my channel ❤️
@@Letsfaceittogetherhave you ever had OCD thankyou it's linked to Asperger's hypomobility is
@@Truerealism747 No I haven’t
Have you seen an Upper Cervical Chiropractor?
I have seen chiropractors before as I have back issues. Wasn't aware they were recommended for TN?
@@Letsfaceittogether Yes upper cervical chiropractic can be very effective for TN you should see one and get X rays done to see if the atlas in your neck is out of position.
Did you have the tooth removed in the end?
We were almost at the stage but when she realised it wasn't my tooth, everything changed. Here advice was to leave well alone. For months I brushed very lightly an avoided anything near that area.
@@Letsfaceittogether im thinking of your story and im ruling out TN for myself, the 3d xray shows I have two root canal infection, i have a lump in my jaw from the abscess and also ibuprofen helps me, so i feel like TN might not be my diagnosis, i could be wrong and have my teeth out for nothing
@@thehardlife5588 yes the difference for me was there was absolutely no infection. You may be right.
@@Letsfaceittogether just out of curiosity did they do a cone beam ct 3d xray on your jaw, because they can find hidden infections that way as my infection wasnt picked up on a 2d xray, just a thought, also they can see nerves with that scan
@@thehardlife5588 yes they did.
Did ibuprofen help you even slightly?
No not really!
Same here, ibuprofen, naproxen or acetaminophen don't do anything. Simply because those don't do anything for nerve pain. ☹️. I don't tolerate any of the nerve pain meds very well. I'm fortunate that most of the time I can deal with the typical ache, burning, numbness and sensitivity, although I do have flare-ups more often now that are hard to deal with.
Is this disease tooth related ?
As most people in the comments has been affected by this after visiting the dentist
Not necessarily, but major disruption to the nerve through dental surgery can trigger it.
@@Letsfaceittogether ok so major dental surgery like getting a tooth pulled out or root canal etc ?
@@qIsrael98 well, I can only speak from my own experience. My wisdom tooth was very close to a nerve. I was warned before they operated on it that it was risky, but it had broken so I needed to have it removed
The NHS is not free, we pay for it through our taxes
Well, yes, we do! I just meant we don't pay for our health care at point of entry like the USA, for example.
Gabapentin puts me on my butt. I cant even form my words properly. I do better on tregadol. And that aint saying much lol
It’s a tough balance between medication and pain. There are more videos on my channel and I’m gradually improving. Hope that gives you some hope x
Thank you so much for sharing ❤️🩹 it's just heartbreaking. I just got diagnosed with TN and migraine. I'm still naive enough to think I'll be able to change the condition with diet. But to be honest it feels a bit hopeless right now.
It’s always worth a try, but tbh I’m glad of the tablets I’m on. I’m sorry to hear you have TN.
I just tried some medicine and got really sick. But I guess it's a part of the journey trying different meds. Medical Medium claims it's treatable. Right now I'm just willing to try everything... Even if it means drinking celery juice every morning
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.
I'm so glad you reached to me and posted here. It certainly is life changing in so many ways. I'm definitely more of a TN2 type. But in the early days there was TN1 elements. I so hope they can find some relief for you.
You are the first person I've heard who has mentioned their lips. Do you have pain in your lips? I do. I have a burning in my lips sometimes. It feels like I'm wearing braces. I haven't found anyone else who feels this. None of my doctors know what this is?
My tongue goes numb.