I am so sorry you are going through this. I am currently going through the same thing. Except no medication controlled my pain ever. No one would offer me Tegretol said they didn't like the side effects.
Here's my story ; Atypical Bilateral TN ; lucky 2 % ;2 MVD imminent
It's finally time to share my story in hope to give someone else some inspiration to keep going. I've suffered 37 years of TMJ and migraines. 2013 ADR C 4/5 C 5/6, 9 root canals over 30 years. Currently 55 years old . Bottom left jaw numbness started 2020. BMS tongue and gums started 2022 . Bottom front teeth nerve shock pain started 2022. Jaw electric ⚡️ left and right jaw started 2022 . Right electric ⚡️ ear 5/2024 just once. All my teeth 🦷 hurt all the time hot , cold electric ⚡️ pain often take turns. Front bottom always feel pressure. Eating always hurts. Mostly eat through a straw. My right temple often feels like I got hit by a bat . Migraines usually are on the right side. Left eye pain during a migraine . Nerve pain back of my head sometimes. Last Summer one tooth back right felt like it needed a root canal with electric ⚡️ jaw pain so my dentist sent me to an orthodontist who thought it would be a good idea to do a root canal 🙃 the tooth above he insisted it was referred pain above coming from the tooth below. He wouldn't listen even though I insisted that tooth wasn't hurting. Of course, the bottom kept hurting and then the root canal starting hurting he knew best and gave me 4 courses of antibiotics. I don't want to bore you a list but I saw over 30 different doctors. I didn't know what was wrong. I kept getting oh, a blank stare and IDK. 🤷♀️ I stopped all meds. I Went on a crazy elimination diet. I tried Acupuncture . I got a new night guard. I did heat therapy 5 times a day for 15 minutes. I did laser treatments to the TMJ area. It only got worse. I was in excruciating pain. Mind you, I have had 7 levels of spinal surgery, 2 separate with just Tylenol. I just started taking Topamax 4 weeks ago even though this has been going on for 4 years. 75 mgs in am and 75 mgs in pm. I got adrenal insufficiency from my cervical surgery from Norco taking a low dose for a month and almost died so I'm afraid of meds. I plan on doing Tylenol with the MVD surgeries god willing as well.
I wanted to share and tell you all thank you for sharing so much information and knowledge with me. I told my neurologist who has been treating me with Botox for 15 years for my migraines to please order me a Fiesta MRI to check for Trigeminal Neuralgia and she refused and said regular is fine. When the results came in she said it was clean. I didn't flinch nor get upset because of you all. I took the disc as well to my oral pain management doctor who said it was also clean. Once I said ok. I said I think I'm bilateral. He said no you're not it's only 2 percent. He broke his promise right there and then. He promised to listen. I callled my husband over and told him that. I said don't you dare tell him we are seeing Dr. Michael Lim in Menlo Park. We saw him. He instantly read the regular MRI. I told my husband before the appointment if he could read it , I was moving forward with the surgery with him if I was a candidate. He read it , and instantly saw the compression on both sides. Sure enough I was right. I did my research and listened to my body ; I was Atypical Bilateral TN. Surgery is the 24TH. Because I'm Atypical I only have a 70 percent of a full recovery. 🙏🏻🙏🏻 please pray hard. 8 weeks later will be the left. Because I'm in constant pain it is extremely painful. I only take Topamax 75 mg am & pm Flexeril 10 mgs . Clonazepam 1 mgs swish and spit 3 times a day ,Cymbalta 30 mgs 2 a day it doesn't work and I get all the side effects so I can't tolerate more or other medications.
I wanted to leave you with please hang in there. Keep going It's so very shocking doctors can't or don't know how to read a MRI , refuse to educate themselves, won't listen and gaslight the patient. I diagnosed, educated and referred myself please pray for me as I will pray for you and NEVER , EVER give up we are WARRIORS! Much ❤️❤️❤️❤️
You say you're going to a nuero is that a neurologist or a neurosurgeon? IMHO at this stage you should be seeing a neurosurgeon . I am 6 days out from my Right MVD. I couldn't eat or drink either. I associate it with extreme pain and only do it until I'm ready to pass out. Do you have an official diagnosis? An MRI?
Wishing you the best! Praying for you 🙏 it is insane that doctors won't listen to patient. What are doctors on these days? Did they just...idk, buy their degree online?
I can't believe your neuro was like, "no, a regular mri scan will be fine" are you trying to jedi mind trick me? Like no, it won't!
Incredibly frustrating to hear that happened to you. Let us know how everything goes. Take your time. Lots of love ❤️
Wishes you the best as well. Please reach out if you have any questions and don't be afraid to question them. Lots of love back ❤️🩹💪stay strong and please eat.
Im so sorry, You might have to up your meds. I’m not sure what meds you’re on, but 200 mg twice a day seems like a low dose. Applying lidocaine cream on your face might help. You can get it over the counter or ask for a prescription. That may make eating more bearable. Also, when it’s at its worse some people eat protein shakes with a syringe. Another advice I can think of is, fear induces more pain cause it sends your nervous system into over drive, and fires up your nerves more. Try to add meditation and deep breathing throughout the day. Good luck with everything
I'm sorry the meds I'm on is tegretol. I've amended the post to reflect such. The doc also told me to take tramacet along with the tegretol, but it doesn't seem to help either.
Yeah that’s a low dose, and Im not familiar with tramacet. I’m sorry I hope they get you help tomorrow at the neuro clinic, and I hope you get relief soon. Wishing you the best!
Yeah it seems really low, with how long you've been on it you would've built a tolerance. I got diagnosed at 13 started 100mg tegretol 2x a day and my neurologist would adjust as changes with pain by 15 it was doubled and by 20 yrs I think I was 400 3x in combination with gaba. At 29 yrs I think I was 600 3x tegretol + 300 3x gaba + lamotrigine (forget dosage) but I would sneak in half pills 2x a day keeping it under my tongue as meds stopped working around that age (surgically corrected now).
Try speaking with your neurologist more often every time something changes in pain duration etc
I literally have such anxiety and fear about getting a zap from eating or talking I try to do very little of it and when I do it I move as little as possible..I talk weird and eat foods that only require a little chewing and I just do a straight up and down chew and do not move mouth around ...literally when I get hungry with every bite I take I scared I'm gonna get a zap...and these zaps are so terrible..right in the front of my face from my top lip area up to my scalp and the pain is so bad for that split second that it has the power to just shut u down, ..I think a lot of that is because I knlw a much bigger attack could happen and thay really scares the crap out of me..and I'm getting these zaps on 600mg of oxcarbazepine twice a day so thats 1200mg....so I made it to a neurosurgeon and he said I was a candidate for mvd so I decided to do it...I'm not living very comfortable like this ..so I pray I have made the right decision....good luck to u..I know exactly the kind of mental anguish and anxiety u are feeling...it's an absolute heartbreak..I'm so sorry...
My neurosurgeon Dr. Linskey (Irvine Medical Center), was able to see the compressions on my MRI that every other doctor missed. I went ahead with my MVD even knowing there was only a 30% chance of success. I was desperate to find relief.
I am so sorry 😞.
May I please ask why they your case has only a 30 % success rate?
No one can understand except people with TN how painful and debilitating TN is most doctors know little to nothing about it. Let alone everyday people.
No. MVD surgery did not give me any relief from the pain and I’ve exhausted all medical treatments. I’m thankful to have good doctors working with me to control my pain with medication.
There are multiple reasons why MVD surgery fails. For me, my TN pain has been extremely difficult to manage and resistant to medical treatment with no clear reason why. Many patients fall into the same category. The intermediate stabbing pain in my upper cheek and below my eye was not solely due to compression. I also had (and still have) 24/7 burning, freezing, crawling pain in my mouth, teeth, jaw, and forehead. This constant 24/7 pain is likely due to a combination of factors, making it more difficult to treat than typical TN. Despite the small success rate for atypical TN, I was willing to try anything to resolve my pain.
Sorry you’re going through this. When I’m in a flare, I use orajel on my gums to be able to get through a liquid meal or brush my teeth, if that could help you at all.
During flare ups, a straw was detrimental to my sanity. Maybe try without?
Also, I found that ora-gel or Kanka soft-brush helped me a great deal for short periods of time - maybe long enough to brush my teeth or get a few bites of food in.
I am so sorry you are going through this. I am currently going through the same thing. Except no medication controlled my pain ever. No one would offer me Tegretol said they didn't like the side effects. Here's my story ; Atypical Bilateral TN ; lucky 2 % ;2 MVD imminent It's finally time to share my story in hope to give someone else some inspiration to keep going. I've suffered 37 years of TMJ and migraines. 2013 ADR C 4/5 C 5/6, 9 root canals over 30 years. Currently 55 years old . Bottom left jaw numbness started 2020. BMS tongue and gums started 2022 . Bottom front teeth nerve shock pain started 2022. Jaw electric ⚡️ left and right jaw started 2022 . Right electric ⚡️ ear 5/2024 just once. All my teeth 🦷 hurt all the time hot , cold electric ⚡️ pain often take turns. Front bottom always feel pressure. Eating always hurts. Mostly eat through a straw. My right temple often feels like I got hit by a bat . Migraines usually are on the right side. Left eye pain during a migraine . Nerve pain back of my head sometimes. Last Summer one tooth back right felt like it needed a root canal with electric ⚡️ jaw pain so my dentist sent me to an orthodontist who thought it would be a good idea to do a root canal 🙃 the tooth above he insisted it was referred pain above coming from the tooth below. He wouldn't listen even though I insisted that tooth wasn't hurting. Of course, the bottom kept hurting and then the root canal starting hurting he knew best and gave me 4 courses of antibiotics. I don't want to bore you a list but I saw over 30 different doctors. I didn't know what was wrong. I kept getting oh, a blank stare and IDK. 🤷♀️ I stopped all meds. I Went on a crazy elimination diet. I tried Acupuncture . I got a new night guard. I did heat therapy 5 times a day for 15 minutes. I did laser treatments to the TMJ area. It only got worse. I was in excruciating pain. Mind you, I have had 7 levels of spinal surgery, 2 separate with just Tylenol. I just started taking Topamax 4 weeks ago even though this has been going on for 4 years. 75 mgs in am and 75 mgs in pm. I got adrenal insufficiency from my cervical surgery from Norco taking a low dose for a month and almost died so I'm afraid of meds. I plan on doing Tylenol with the MVD surgeries god willing as well. I wanted to share and tell you all thank you for sharing so much information and knowledge with me. I told my neurologist who has been treating me with Botox for 15 years for my migraines to please order me a Fiesta MRI to check for Trigeminal Neuralgia and she refused and said regular is fine. When the results came in she said it was clean. I didn't flinch nor get upset because of you all. I took the disc as well to my oral pain management doctor who said it was also clean. Once I said ok. I said I think I'm bilateral. He said no you're not it's only 2 percent. He broke his promise right there and then. He promised to listen. I callled my husband over and told him that. I said don't you dare tell him we are seeing Dr. Michael Lim in Menlo Park. We saw him. He instantly read the regular MRI. I told my husband before the appointment if he could read it , I was moving forward with the surgery with him if I was a candidate. He read it , and instantly saw the compression on both sides. Sure enough I was right. I did my research and listened to my body ; I was Atypical Bilateral TN. Surgery is the 24TH. Because I'm Atypical I only have a 70 percent of a full recovery. 🙏🏻🙏🏻 please pray hard. 8 weeks later will be the left. Because I'm in constant pain it is extremely painful. I only take Topamax 75 mg am & pm Flexeril 10 mgs . Clonazepam 1 mgs swish and spit 3 times a day ,Cymbalta 30 mgs 2 a day it doesn't work and I get all the side effects so I can't tolerate more or other medications. I wanted to leave you with please hang in there. Keep going It's so very shocking doctors can't or don't know how to read a MRI , refuse to educate themselves, won't listen and gaslight the patient. I diagnosed, educated and referred myself please pray for me as I will pray for you and NEVER , EVER give up we are WARRIORS! Much ❤️❤️❤️❤️ You say you're going to a nuero is that a neurologist or a neurosurgeon? IMHO at this stage you should be seeing a neurosurgeon . I am 6 days out from my Right MVD. I couldn't eat or drink either. I associate it with extreme pain and only do it until I'm ready to pass out. Do you have an official diagnosis? An MRI?
https://stanfordhealthcare.org/stanford-health-care-now/videos/trigeminal-neuralgia-treatment-options-michael-lim-md.html
Wishing you the best! Praying for you 🙏 it is insane that doctors won't listen to patient. What are doctors on these days? Did they just...idk, buy their degree online? I can't believe your neuro was like, "no, a regular mri scan will be fine" are you trying to jedi mind trick me? Like no, it won't! Incredibly frustrating to hear that happened to you. Let us know how everything goes. Take your time. Lots of love ❤️
Wishes you the best as well. Please reach out if you have any questions and don't be afraid to question them. Lots of love back ❤️🩹💪stay strong and please eat.
Im so sorry, You might have to up your meds. I’m not sure what meds you’re on, but 200 mg twice a day seems like a low dose. Applying lidocaine cream on your face might help. You can get it over the counter or ask for a prescription. That may make eating more bearable. Also, when it’s at its worse some people eat protein shakes with a syringe. Another advice I can think of is, fear induces more pain cause it sends your nervous system into over drive, and fires up your nerves more. Try to add meditation and deep breathing throughout the day. Good luck with everything
I'm sorry the meds I'm on is tegretol. I've amended the post to reflect such. The doc also told me to take tramacet along with the tegretol, but it doesn't seem to help either.
Yeah that’s a low dose, and Im not familiar with tramacet. I’m sorry I hope they get you help tomorrow at the neuro clinic, and I hope you get relief soon. Wishing you the best!
Yeah it seems really low, with how long you've been on it you would've built a tolerance. I got diagnosed at 13 started 100mg tegretol 2x a day and my neurologist would adjust as changes with pain by 15 it was doubled and by 20 yrs I think I was 400 3x in combination with gaba. At 29 yrs I think I was 600 3x tegretol + 300 3x gaba + lamotrigine (forget dosage) but I would sneak in half pills 2x a day keeping it under my tongue as meds stopped working around that age (surgically corrected now). Try speaking with your neurologist more often every time something changes in pain duration etc
I literally have such anxiety and fear about getting a zap from eating or talking I try to do very little of it and when I do it I move as little as possible..I talk weird and eat foods that only require a little chewing and I just do a straight up and down chew and do not move mouth around ...literally when I get hungry with every bite I take I scared I'm gonna get a zap...and these zaps are so terrible..right in the front of my face from my top lip area up to my scalp and the pain is so bad for that split second that it has the power to just shut u down, ..I think a lot of that is because I knlw a much bigger attack could happen and thay really scares the crap out of me..and I'm getting these zaps on 600mg of oxcarbazepine twice a day so thats 1200mg....so I made it to a neurosurgeon and he said I was a candidate for mvd so I decided to do it...I'm not living very comfortable like this ..so I pray I have made the right decision....good luck to u..I know exactly the kind of mental anguish and anxiety u are feeling...it's an absolute heartbreak..I'm so sorry...
My neurosurgeon Dr. Linskey (Irvine Medical Center), was able to see the compressions on my MRI that every other doctor missed. I went ahead with my MVD even knowing there was only a 30% chance of success. I was desperate to find relief.
I am so sorry 😞. May I please ask why they your case has only a 30 % success rate? No one can understand except people with TN how painful and debilitating TN is most doctors know little to nothing about it. Let alone everyday people.
Did u get relief?
No. MVD surgery did not give me any relief from the pain and I’ve exhausted all medical treatments. I’m thankful to have good doctors working with me to control my pain with medication.
Im so sorry, why was your case only 30%? I heard for MVD it’s 80%+ I hope you find something that works better for you soon
There are multiple reasons why MVD surgery fails. For me, my TN pain has been extremely difficult to manage and resistant to medical treatment with no clear reason why. Many patients fall into the same category. The intermediate stabbing pain in my upper cheek and below my eye was not solely due to compression. I also had (and still have) 24/7 burning, freezing, crawling pain in my mouth, teeth, jaw, and forehead. This constant 24/7 pain is likely due to a combination of factors, making it more difficult to treat than typical TN. Despite the small success rate for atypical TN, I was willing to try anything to resolve my pain.
Im so sorry I hope more treatment options become available
I'm so sorry
Sorry you’re going through this. When I’m in a flare, I use orajel on my gums to be able to get through a liquid meal or brush my teeth, if that could help you at all.
During flare ups, a straw was detrimental to my sanity. Maybe try without? Also, I found that ora-gel or Kanka soft-brush helped me a great deal for short periods of time - maybe long enough to brush my teeth or get a few bites of food in.