Everyone has a different experience of TN and that's okay!

[@esmebuitendag7131]

I have A Typical pain on all 3 levels. Went for surgery where 18 incisions were made in the Cerebral Cortex. I 'celebrated' my 9th year of TN yesterday. I'm extremely allergic, and I have tried Lyrica, Gabapentin and so many more. After surgery, I've had muscle spasms for months now. My only relief is sleeping. Stress, sugar, and speaking elevate my pain. Please stay positive and pray for this horrific pain.

[@Letsfaceittogether]

It sounds like you are struggling so much. I pray there will be some relief for you!

[@esmebuitendag7131]

@Let's face it Thank you so much. TN is an uphill battle for me, and I have lost so much weight already, but I will never stop praying for total recovery. I also pray for all sufferers of TN worldwide.

[@kenasoup202]

I have typical TN, compression originally not seen on MRI until a proper protocol MRI was performed, a FIESTA or CISS MRI must be done and interpreted by a neurosurgeon. He saw my compressions (plural) right away, as did the radiologist in the neuro department. I am currently taking Phenytoin and Carbamazepine, MVD scheduled in 2 weeks. Thank you for sharing your journey, I hope your pain ebbs quickly. UPDATE: Had MVD 5/11/23, no more spasms, no more pain, no side effects from the surgery (great neurosurgeon), wound healed, resulting fatigue from brain surgery practically gone. 😀

[@Letsfaceittogether]

What a blessing, Kena, that the compressions were found. I wish you well for you MVD.

[@kathleenmontoya-w3m]

Thank you very much so helpful 🙏❤️

[@Letsfaceittogether]

That's good!

[@sunnyvibes8528]

I agree with you about well-meaning family & friends offering advice. Same with my polymyalgia rheumatica. “Just do more stretching “. “Just start walking a mile every day”. “Take Excedrin”. “Oh I’ve had that - just get a massage”. “Try sleeping on a different pillow”. As if this condition is temporary and situational. Uggghhhh. Ive only had 1 episode of what I think was TN. I don’t know when next one will come or IF it will come. I am thankful I am not in pain now - but the ear pain you mentioned IS something I have experienced recently- so now I wonder. Thank you for your videos!

[@Letsfaceittogether]

Yes, it is very frustrating 😑 and hard to stay polite! I hope you haven't got TN, but I appreciate watching my videos.

[@debvoso9490]

Great advice

[@Letsfaceittogether]

Thank you ❤️

[@aybakhawwari9490]

Nervous breakdown brought me stabbing pain in the chest area and upper back vertebrate with extrem trigemenal neuralgia pain non stop for 8 years now

[@Letsfaceittogether]

I'm sorry to hear that, Aybak. I hope things 🙏 improve for you

[@lanetteprice7508]

Im got TN June 10. 1990 4 MVD a ruptured brain stem aneurysm and 8x strokes im 20 years post ruptured

[@Letsfaceittogether]

Sorry to hear you've been through so much. I hope things get better for you x

[@alison6684]

People try to be helpful but I’ve been dealing with it for 15 years and so far nothing has worked and it also depends on the type that you have. For me, nothing is actually pressing on the nerve so it’s not as easy for a lack of better words to have surgery. I can say that diet is not an answer.

[@Letsfaceittogether]

Yes, me too! Nothing is shown to be pressing on the scans. It's a tough daily battle! Thank you for watching and commenting ❤️

[@cherylbenish3274]

I have it too and have found something that seems to be working. It is the weirdest thing and I discovered it by accident. If you are still open to trying things after having it for so long let me know and then I can explain to you and hopefully it will help you too.

[@alison6684]

@@cherylbenish3274 I’m always open to suggestions. Thank you!

[@alison6684]

@@Letsfaceittogether did your neurologist say anything about herpes virus? Mine said they think it has something to do with lingering chickenpox or shingles. My dad even asked him if he could have somehow passed it on to me because he suffered from bad cold and canker sores as a kid and the doctor said yes so I’m freaked out and curious to find more information.

[@cherylbenish3274]

@@alison6684 My apologies for how long this will be. I am a gardener and worked outside doing snow removal this winter which was so risky with the TN pain but it was work where I didn’t have to talk to people because I had so much pain. I dressed very warmly and would return home soaked from the exercise. I noticed that I would not have nerve pain afterwards when I had a really hard workout. I started to wear a sweatshirt to bed over my pajama top and that stopped me from waking up with bad nerve pain. I also sleep with a duvet. There was something to it in that if I was dressed very warmly in layers (throughout the day and wearing a cotton Covid mask keeping my face warm) the nerve would not fire off and has gotten much better as a result. I also eliminated tomatoes and potatoes from my diet and that has really helped. I didn’t believe the stories of dietary restrictions and just ate what I wanted but then I would notice the pain after having potatoes and tomatoes. I don’t eat a lot of carbohydrates anymore but rather try to stick to vegetables,meat, some dairy and very little fruit (trying to eliminate the carbs and sugar). I think dressing warmly was essential because I lost a considerable amount of weight and I believe that my TN was caused by a freezing of the nerve by blasting the air conditioning in the car and sleeping with a fan at night. After reading a book on neuroscience I am basically trying to retrain my brain that there is no pain, the nerve is not frozen and I am not cold. I will try going to a sauna and see how the heat from that will work. I have recently suffered a little setback and I am powerwalking every day and that helps curb the pain. I hope this may help you. I have had this for almost 2 years now and it hasn’t been easy. I went on carbazmepine and it destroyed my liver after 3 weeks and now have cirrhosis as a result. I decided that I was going to try and figure it out myself since no one knows what causes it. I know that an increase in my body temperature is what is making me much better. All the best to you and I hope you find a solution and be TN free forever!

[@edenfloraguerrerojacinto2331]

Its true that stress and tiredness causes the flare up its my experience

[@Letsfaceittogether]

Yes, I'm still finding it's the case. Thank you for commenting

[@OptimisticHominid]

Your videos are very encouraging. Did anyone discuss Botox injections with you? I ask because that is what has been suggested, and I was wondering if you had heard of anything that concerned you about going down that path.

[@Letsfaceittogether]

I think if had been referred to a neurologist or my pain was not under control, that may have been a suggested route!

[@OptimisticHominid]

An update: The first Botox injections (one vial's worth) along the lower jaw has had a profound impact on the pain in the area that was treated. The pain started to reduce within 24 hours, and two weeks later the pain along the jaw has pretty much gone. The pain up the side of the face and temple is still there, and still pretty bad; can't talk, chew, yawn or smile without triggering shooting pains. Further injections are scheduled and offer some hope of being able to get back to work. The Botox injections are being done by a specialist in Oral Medicine and Oral Pathology, here in Canada. Like in the UK, for most people, you have to pay for dental work, but because of the pain, the dentist made the referral to the oral specialist, which on one-hand is bad, in that you have to pay for the consultation sessions and treatment yourself, and on the other-hand, this treatment was received within two months, when it was found that the medications were having little impact on the pain. I'm aware that the Botox treatment may have to be repeated several times, and that ultimately it might fail, but for now it's helping. If it does fail, it'll be one more treatment that we can rule out. My fingers are crossed!

[@OptimisticHominid]

@@Letsfaceittogether No neurologist here either, just a lucky referral to an oral specialist who had treated TN before. The specialist isn't covered under the Canadian equivalent of the NHS, whereas a neurologist would be, however it could have taken a year to be seen. There's a shortage of doctors here too!

[@Letsfaceittogether]

@Rob Lyn I'm glad 😊 you were treated with someone who knew what to do!

[@OptimisticHominid]

Update #2: You're video today, 5 things I think you should know... reminded me to provide another update. In my last update I'd mentioned that there was still some pain that hadn't gone away after the first Botox injections. Well, shortly after that update a second set of Botox injections was administered, and wow, absolutely bl**dy wow! For the first time in 12 months, and just six hours after the injections, there was zero, yes zero pain! Chewing food, brushing teeth, laughing, and talking were all pain free. After three more weeks off work, not wanting to return too soon and have to go sick again, it was back to work. It was impossible to work prior to the second Botox injections as the slightest breeze would trigger the pain. It's an outside job often requiring travel across open water on a small motor boat; lots of wind. Three months on, and as expected the pain is coming back a little. It's currently at about a level of Annoying. However, a letter pleading for help to the local medical clinic, outlining the journey from initial pain, medications, to Botox, and the pain starting to return, resulted in an MRI being requested and a referral to a neurologist. These costs will be covered by the Canadian equivalent of the NHS. In the meantime, perhaps every 3 to 4 months, fresh Botox injections should keep the pain away. I see light at the end of the tunnel, even if that is quarterly Botox injections forever, but I'm sure (very hopeful) a more permanent solution will be found now that an expert will be looking into this. The cost of the Botox injection here is $700 (410 GBP), but $200 is covered by the company's medical plan, so for injections four times a year, the out-of-pocket cost will be about 1,200 GBP.

[@alexndannycasillas5526]

I have a question for anyone woth this condition. I am currently experiencing what they believe to be tmj. It seems though that tmj and tn have very similar symptoms. Im guessing the electric shocks is what is different? Also, can tmj turn i to tn if not treated early enough? I have a friend that had tmj but now has tmj and TN

[@Letsfaceittogether]

I'm really sorry, I don't know anything. I think TMJ is the lower jaw?? I guess as everything is connected, then 🤷 TN could come as well! At the end of the day, it's all very painful, so it's great that you are here.

[@alexndannycasillas5526]

@@Letsfaceittogether yes, it's great to find support for this horrible condition.

[@edenfloraguerrerojacinto2331]

Does smoking affect TN?

[@Letsfaceittogether]

Some people think it does. But I'm not sure if there's any evidence 🤔 to support the idea

[@alison6684]

I don’t know but I was a cigarette smoker for years, I quit about 8 years ago though?

[@cherylbenish3274]

I have a book on it from Amazon and it claims that smokers are more susceptible to it.

[@alison6684]

@@cherylbenish3274 that’s really interesting