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Hello, may you please share how you were diagnosed with TN? I’ve been suffering with nerve pain for years but the neurologist hasn’t said that it’s TN. Thanks

What was the earache like? I get an electric fuzziness when I touch that area in front of my ear but I've never had pain per say.. Wondering what pre tn feels like

I was just today told yes then after my CT SCAN I was told no and to see a neurologist. This is such an annoying feeling in my face. It’s numbing, tingling and just prickly.

it's great to find you & fellow sufferers online-doesn't take away the pain but offers a level of comfort. I have MS but was never told about TN until I got it 3 years ago. Although my MS has stabalised my TN hasn't. I'm on Carbomazapine for it & seems to keep pain in check. I don't want to be on this drug for the rest of my life but what's the alternative-a nerve op, scary 😳

Thanks for posting another video. 🤍 I get flair ups with cold temperatures, stress, too much activity, talking too long on the phone. My lowest point is warm or hot temperatures like summer.

My General health has taken a bit of a dive since diagnosed with TN back in 2016 already. Apart from the depression and mental health issues, I've developed TMJ and Tinnitus, in my left jaw and ear. Ear aches common, back and neck pain with spirodic outbreaks of Shingles, I dont like taking medication so my struggle is just living day-to-day (sometimes hour-to-hour / min-to-min) without the "intensive" pain. Its a struggle to remain positive but I get there.... I probably ave 6/10 on a average day, but some flare ups are so bad I physically throw up from the pain

Let me know if you have other conditions too?

I am taking gabapentin for it, 100 mg when I feel it coming onin the afternoon, and 100 mg in the evening. Very few side effects. I'm also massaging and applying ice or warm compresses. I can drive around 15 minutes from home. I read that there is acupuncture, acupressure for it, and myofascial, cranial sacral therapy. This is new for me too. I try to keep positive. Thank you for your honesty and openess.

Thank you Nyree for sharing your TN experience. I was diagnosed last year by a dentist who ordered an OPG then started with Tegretol twice a day and then sent to a Maxillo doctor. Shortly afterwards had a reaction to Tegretol and admitted to hospital. Meds changed to Gabix which I am tolerating well and referred to a Neurologist. My life changed as I sleep for a long time and am tired most of the day. My speech changes from time to time when the lightning ⚡ bolt starts on the left upper and lower jaw. This also affects any eating and drinking. Then I see a blackness rising up from the lower part of my face to the top of my head. This is scary when it happens 😨. I was told it has no known cause and to watch out for the "in the head high blood pressure". I have reached a stage of accepting surgery as I have been told by the neurologist it is done going through the back of my left ear to separate the live nerve from the vein on the left side of my face. I reside in Nairobi, Kenya.

Appreciate your kind posting of the information I needed. Prayers for all who suffer from this life rendering issue.

Pardon what’s the medication name. Would like to try it. Hope you are well!

Thank you for this video. It took courage. My daughter Kris has this and it is as you say debilitating and total life changing. Kris is living this and must go to work and is in pain all day until she sleeps.

Thank you for continuing to share your story and advice. Your videos are very inspiring and I look forward to hearing from you each month ❤

I have TN for about 5 years now, change my life completely. Used to be outgoing working outside all day, now I only work from home. I'm a little bit better since I do have a lot of hobby which take me away from the pain and when it doesn't flare up I'm totally fine. Telling people what sort of pain we go through is pretty hard to be honest, since most people can't even begin to imagine the pain, the intensity, the length and the consequence of such pain. But if they ask I would just tell them the general idea and that's it, the pain may change my life but I don't let it dictated my life . I don't want to have my personality revolve around the pain, I want people to remember me as who I am.

Telling others about the TN I have seems to go over their heads. Some never heard of TN, a friend says I should go to physical therapy. When they say they’ve never heard of TN I tell them it’s facial nerve pain and they may want to look it up, unless they further ask me questions. Resting is hard for me, I’m retired and don’t take naps, but laying down and listening to something is what I need to do. I really appreciate you and thank you for your videos. You are a gem. 😊

Thank you for sharing. I have Trigeminal neuralgia and Idiopathic Intracranial Hypertension. I am coming up on a year since I was told that what was going on was TN. Two years for the IIH. When the IIH is getting bad, it kicks in the TN. It is not an easy thing to deal with. Stay strong.

I took my first Gabapentin capsule. I took it at night to sleep, immediately insomnia set in for 3 plus hours, then when getting up once during the night I felt very unstable. Next morning while fixing breakfast I felt lightheaded and unstable. I live alone, how could I leave the house at all with those side effects? I could get a ride to the dentist, but I still have to go inside being unstable or lightheaded. With the seasons changing from Summer to Autumn the nerve at the bottom of my jaw is sensitive all the time. I have placed a call to my doctor to see what else I can take or do. I’m thinking of checking out homeopathy or maybe even traditional Chinese medicine. 😒

Have you had an mri

Our summers are quite warm here in Colorado and my TN stays fairly dormant June through early September. Now it’s more active and I feel it’s slightly advancing. Please keep your channel going even if you don’t post often. I appreciate you and thank you. ❤

Thank you for sharing you condition. I live in London. I'e been suffering with Trigeminal Neuralgia for about four years. I have been taking tegretol tablets and I recently had the Gemna Knife treatment but I'm still in pain. I can't eat or talk properly. I'm now trying to contact my neurogist to see if I can change my medication.

Thank you! I am on gabapentin for my nerve pain and TN I often say to people I have a neurological condition that causes me a lot of pain. If they ask for more I tell them but they don't. I have also found it helpful to only spend time with people I like or love otherwise I find my pain is worse. Thank you again it is great to find out more and have someone keep it real take care. x

Upper cerval Chiropractor is the amazing relief

You are such a lovely person. I am so very sorry for your pain and how this is affected your life. I appreciate you sharing your story with us. It does help to not feel alone in this walk. I am in the beginningish stage of this journey, I think? I am pretty sure I am in denial. Pains in my face, jawline, and temples. Just awful at times...but then quieter at other times. I ponder if I might have gotten this due to a botched root canal and then amplified by being rear-ended badly on the freeway, causing neck surgery. All my nerves are dancing around. Not fun and quite painful at times. Does this gradually increase for most? I pray for all of us who are experiencing this and that we find comfort and healing.

I think that cure will be available soon as some genes are founded by some neurosurgeons regarding this

Hi I am sorry to hear your new symptoms. I suffered from trigeminal neuralgia agonizing pain for 15yrs and I was using tegretol for 15yrs and I developed side effects of carbamazepine which is cardiac arrhythmia then I decided to go for mvd surgery and I am in 3rd month post op now. But I developed severe numbness and heavy pulling sensation on the affected side. I am in Ethiopia . May almighty Allah help us for all those suffering from chronic agonizing pain of .TN

Hi. So sorry to hear about your new symptoms. My TG nerve acts up when the air is cold, even in the house with the A/C on. So I bought some neck warmers to put on and pull up around my jaw. I will use this winter when going out too. I haven’t checked in for a while, so my update. I went to a neurologist in June. I asked them if my TG came from taking the Zoster Vax shingles vaccine. They did not have an answer. I still think it did because it started a few months later. All they gave me was gabapentin for when I have dental work or a flare up. If you took any of the C-v-id vaccines it could the problem even though a lot of doctors will deny it. There have been any number of problems with them. May God show you your pathway to healing. ❤

I need to find a neurologist. My body feels like its shutting down with my addison's disease and trigeminal neuralgia. Its hard work full-time. Very painful 😢

Im definitely going in for surgery as medicines arent working for me. The only medicine that ever worked out of all the others I have been prescribed was tegretol. Though I was at my maximun dose, and my body is now immune to it, which my neurologist told me. So I am down for MVD

Hi, I've asked this question previously. Can you tell me please what dosage of Carbamazepine, you take daily?

Thanks for your very informative videos. You are correct that the internet is filled up with too much information, making the journey confusing and frightening. Sharing your journey really gives hope especially on the days when I get a flare up. Please continue sharing your experience as much as possible.

I have had it for 10 years no meds just constant toothache . Got medical marijuana card 4 years ago saved my life .

I am concerned that I may have this condition. I do still have 3 impacted wisdom teeth and I can't quite figure out if they are also part of my problem. I see my dentist this afternoon. It hurts to eat and talk and I have been through several bad headaches and migraines. One time I had pain that went from my mouth up the check to the temple and stopped at the top of my head above the left eye. I have noticed more droopiness and swelling too. I just don't know how it started.

I’m on a 1000mg of carbamazepine, 400mg in the morning and 600mg at night, and TN is the worst thing that has happened to me. I love your channel because I relate and feel seen. I’m from Nigeria and would like to connect with other sufferers who are in Nigeria .

Thank you for your videos. This is a very lonely condition and hearing from you makes things a little easier ❤ Glad to hear you’re doing well x

1500 mg gabapentin, 10 mg carbamazepine, 10 mg flexeril, 1000 mg Tylenol, washed down with a full bong load and some tums. Luckily ive been in remission for about the last 5 days. God bless

Ps: I was diagnosed in May 2021. I'm 68 now and live alone. My 3 sons always have kind words and are supportive, but really have no clue. Fed up with myself 😢x

Hi Nyree, I'm in the middle of a flare-up. I've had to increase the carbamazepine from 200mgs daily to 600mgs. I try to titrate according to the pain. Can I ask you what dose daily you're on please? I have MS. My neurologist is really only interested in the MS. So glad I found your channel. Haven't been able to eat or speak, for the past 3 days😢 Jackie x

Im happy for you that they are rare though, as dealing with it constantly does suck. None of us should have it at all, but man I am glad you dont deal with it so often ❤❤ I hope its calmed down for you.

I’ve subscribed to your channel but how do I know when your live chats are on. Not computer literate at all.

Yes even my husband. Says in my head, he’s right but do I wish he could experience the pain. Take a pain killer (that’s my tegretol ) he says. Your explanation is what I will tell people in future. I’m crying listening to this because it’s such an easy thing to tell people if they ask. I relief that there’s someone else out there like me. Thank you. 5 months in still waiting for t neurology appointment in October 24.

I just found your videos after searching for info on this condition. I have it in my left side lower jaw area. But when in a flair up the whole side of my face radiates in pain. My flairs usually last 1 hour on the nose. 🤷‍♀️. It’s nice to have someone to share this with. Thank you for creating and sharing your journey. I have not been able to take my meds yet as my anxiety is very high. I am just so fearful of the side effects. Hope I get over it, so I can function again.

Hi, thank you for your video. With regards to the liver, do you think drinking something for the liver, like we have Essential for Liver here in South Africa, to help the liver?

thank you for this video! I appreciate your content and it is so encouraging to hear from TN sufferers who rarely have flare ups, I hope you'll keep your channel up and running and that you'll be able to keep up your routine!

Carry on with the channel please. It’s such a rare diagnosis and people feel alone. Even if you don’t post often, please interact with us. I feel it in my top earlobe right now, it’s one of my common symptoms. I don’t want to tell my husband it’s gotten worse cause I don’t want to stress him out, also it’s hard for ppl to really understand because I appear fine. Anyway, please definitely keep the channel going.

Do you follow a diet for the trigeminal nerve ? Can you tell me what you eat because like you I suffer from it

Hi Helen. I’m very proud to be your first member. Looking forward to that Nyree. I hope your flare has abated. Xx

I’m not sure if I’ve asked before. I’m laying here feeling minor symptoms, do you feel your pain daily? Cause I feel mine daily but it’s not that huge lightning bolt. Thank God it’s not very often but daily I’ll feel a minor shock or tooth ache for a little while. Nothing too high in pain level.

Hello, I have been watching some of you videos and it seems your story is not too much different then mine. I have not been diagnosed with it I would love to learn more from you as our stories are somewhat the same, looks like yours is your left side mine is my right side though. I have not seen every episode but do you have a trigger? Does it cause immediate pain every time?

Before your pain was under control did you have any of the strong shocks?

Myofascial pain syndrome is the most common manifestation of chronic pain.