Help! New here. Trigeminal Neuralgia sufferer.

[S70ryT3ll3r]

Hello. I was wondering if you could help me out. I don't hear a lot of success stories on Trigeminal Neuralgia and I was wondering if you think I might have TMS as this is truly what is keeping me from moving forward... believing there is nothing structurally wrong with me.
I have TMJ for years now, my jaw clicks and makes noises and its never really bothered me before. But on november 2020 I got Trigeminal Neuralgia pains (after face exercices, some for TMJ)... at the time I went to the ER and they did a Neurological Test (which is just checking reflexes and touching and etc). And sent me away with pain killers as my reflexes were ok. But knowing about the disease and having major trauma regarding my face, I googled and googled and googled and read all horror stories cause my pain wouldnt go away. A dr told me I had the pains of TN so that meant I have the illness. It scares me to death based on the horror stories I read. I started thinking it was due to the exercises I did, or because of an artery pressing on the nerve or maybe due to TMJ (is that possible, to have that from TMJ?). I have shocks of random pain that happen all over my face, my cheeks, side of mouth, maxilla, jaw, teeth, even my eyes (common). IDK what to do and I'm constantly afraid of face deformity or paralysis or something as I have a MAJOR trauma regarding my face. I had Body Dismorphia when I was a teen and later when I was ok with how my face looked I had unexplained dysesthesias after an injury on my nose bridge that wouldnt go away and made me suicidal (No one ever knew what was wrong with me, I spent 5000+ dollars in doctors, exams, treatments, etc. Lasted 8 months, went away for 9, came back and has been ok with Gabapentin ever since). I am 99% sure those Dysesthesias were TMS because once I actually gradually stopped my medication and felt absolutely nothing for 6 months of no meds, as I was sure I had nothing... one day I thought "Maybe I have nose cancer" and fell into a panick (I'm very hypocondriac) and 20 seconds later those dysesthesias came back. So that I'm sure, but my TN... oh boy, I swear this ain't imagined, I feel strong pain that makes me cry and very sad and scared... I have no triggers, its just completely random shocks of pain.
I keep reading about back pain and sciatica but I dont see a lot of TN... I'm having an MRI but Im scared of having an MRI too because being a hypocondriac I know that if they find something, there's no going back for me.

I'm so lost... what do you think? Did you have similar symptoms? Did you get better? Do you think its TMS?

 

[plum]

Bumping this post.

 

[miffybunny]

Hello. I was wondering if you could help me out. I don't hear a lot of success stories on Trigeminal Neuralgia and I was wondering if you think I might have TMS as this is truly what is keeping me from moving forward... believing there is nothing structurally wrong with me.
I have TMJ for years now, my jaw clicks and makes noises and its never really bothered me before. But on november 2020 I got Trigeminal Neuralgia pains (after face exercices, some for TMJ)... at the time I went to the ER and they did a Neurological Test (which is just checking reflexes and touching and etc). And sent me away with pain killers as my reflexes were ok. But knowing about the disease and having major trauma regarding my face, I googled and googled and googled and read all horror stories cause my pain wouldnt go away. A dr told me I had the pains of TN so that meant I have the illness. It scares me to death based on the horror stories I read. I started thinking it was due to the exercises I did, or because of an artery pressing on the nerve or maybe due to TMJ (is that possible, to have that from TMJ?). I have shocks of random pain that happen all over my face, my cheeks, side of mouth, maxilla, jaw, teeth, even my eyes (common). IDK what to do and I'm constantly afraid of face deformity or paralysis or something as I have a MAJOR trauma regarding my face. I had Body Dismorphia when I was a teen and later when I was ok with how my face looked I had unexplained dysesthesias after an injury on my nose bridge that wouldnt go away and made me suicidal (No one ever knew what was wrong with me, I spent 5000+ dollars in doctors, exams, treatments, etc. Lasted 8 months, went away for 9, came back and has been ok with Gabapentin ever since). I am 99% sure those Dysesthesias were TMS because once I actually gradually stopped my medication and felt absolutely nothing for 6 months of no meds, as I was sure I had nothing... one day I thought "Maybe I have nose cancer" and fell into a panick (I'm very hypocondriac) and 20 seconds later those dysesthesias came back. So that I'm sure, but my TN... oh boy, I swear this ain't imagined, I feel strong pain that makes me cry and very sad and scared... I have no triggers, its just completely random shocks of pain.
I keep reading about back pain and sciatica but I dont see a lot of TN... I'm having an MRI but Im scared of having an MRI too because being a hypocondriac I know that if they find something, there's no going back for me.

I'm so lost... what do you think? Did you have similar symptoms? Did you get better? Do you think its TMS?

Hi! Trigeminal Neuralgia is definitely TMS. Like CRPS (which was the label bestowed on me), it's called "the suicide disease" because of the intense and scary nature of nerve pain. I just finished a course with Dr. Schubiner and this subject came up in one of our case studies. You can email him as well and he will respond . The good news is that these are just false alarms from the brain. I've experienced nerve pain in the face as well, and I think for me it goes back to childhood when I had herpes on my face, which led to blistering and scarring. I was bullied for 2 years straight during 7th and 8th grade because of it as well. During the first few months of Covid, I had a reoccurrence of herpes (every few years it pops up from stress) and nerve pain ensued in my face. I realized it was TMS pretty quickly though. This is definitely reversible and common!

 

[S70ryT3ll3r]

Hi! Trigeminal Neuralgia is definitely TMS. Like CRPS (which was the label bestowed on me), it's called "the suicide disease" because of the intense and scary nature of nerve pain. I just finished a course with Dr. Schubiner and this subject came up in one of our case studies. You can email him as well and he will respond . The good news is that these are just false alarms from the brain. I've experienced nerve pain in the face as well, and I think for me it goes back to childhood when I had herpes on my face, which led to blistering and scarring. I was bullied for 2 years straight during 7th and 8th grade because of it as well. During the first few months of Covid, I had a reoccurrence of herpes (every few years it pops up from stress) and nerve pain ensued in my face. I realized it was TMS pretty quickly though. This is definitely reversible and common!

Thank you very much for your story! I have TMJ and my fear is that TMJ joint is so degenerated or misaligned that is damaging the TN nerve. The pain is terrible and I'm always scared of it and face paralisis... thank you for your answer to my post

 

[miffybunny]

Thank you very much for your story! I have TMJ and my fear is that TMJ joint is so degenerated or misaligned that is damaging the TN nerve. The pain is terrible and I'm always scared of it and face paralisis... thank you for your answer to my post

You're welcome! Definitely write to Dr. Schubiner as he is an MD and can allay your fears. The notion of nerve damage is also a murky one. Nerves regenerate. I highly doubt you have true nerve damage. These awful sensations are signals coming from the brain as a result of trauma (medical and emotional).

 

[jipavl]

Here is a success story from this forum.

 

[aniseday]

@S70ryT3ll3r Oh yes - I recognize your spiral and hope over the past 6 months you have found some peace for your fears. I agreed to the MRI because someone mentioned "tumor" along the way and my imagination ran wild. The did find a vein and although it did not confirm nerve compression it is considered a suspicious finding. I also have degeneration occurring in my left jaw - which it felt to be due to my drawn out extraction - implant - crown placement process. I have visited with nearly a dozen care providers (dentists, physicians, acupuncturist and a somatic therapist). Several have had their own experiences with chronic pain. One physician has even experienced the dental implant/TMJ/TN trifecta herself. What has helped me overcome my MRI finding is the fact there are studies that report people have nerve compression with no pain. People that have the MVD surgery may have their pain return. The medication I have been given to try to combat the pain have had absolutely no effect on it but have caused me loads of undesirable side-effects. My physician is working with me now to reduce the medication and see what happens. I agree the MDs and their grim prognosis is not helpful but I suppose they don't want to be accused of giving anyone false hope either. They have been trained to only treat the pain and not get to the real root of it. The anger I once felt at the dentist for telling me I was just an overly sensitive middle-aged woman...is dissolving into acknowledgement that he may be on to something. Sensitive without the ability to express my emotions effectively. He was INsensitive in his delivery. He dismissed my pain as being all in my head. BUT - pretty sure my Googling of psychosomatic dental pain lead me to this site and the Curable app. There definitely is not much shared regarding TN that is positive. I hope by the end of the year I will have a success story to share and that you will too!

 

[Kittyruns]

I am certain TN is TMS. I have had pains in my jaw, teeth, face, neck and head and they all went away with TMS knowledge. I am so aware of this now that I rarely have any issues. And if I do start to get some issues, I pick up a Dr. Sarno or Steve Ozancich book and feel better almost immediately!

 

[Missdee]

H

@S70ryT3ll3r Oh yes - I recognize your spiral and hope over the past 6 months you have found some peace for your fears. I agreed to the MRI because someone mentioned "tumor" along the way and my imagination ran wild. The did find a vein and although it did not confirm nerve compression it is considered a suspicious finding. I also have degeneration occurring in my left jaw - which it felt to be due to my drawn out extraction - implant - crown placement process. I have visited with nearly a dozen care providers (dentists, physicians, acupuncturist and a somatic therapist). Several have had their own experiences with chronic pain. One physician has even experienced the dental implant/TMJ/TN trifecta herself. What has helped me overcome my MRI finding is the fact there are studies that report people have nerve compression with no pain. People that have the MVD surgery may have their pain return. The medication I have been given to try to combat the pain have had absolutely no effect on it but have caused me loads of undesirable side-effects. My physician is working with me now to reduce the medication and see what happens. I agree the MDs and their grim prognosis is not helpful but I suppose they don't want to be accused of giving anyone false hope either. They have been trained to only treat the pain and not get to the real root of it. The anger I once felt at the dentist for telling me I was just an overly sensitive middle-aged woman...is dissolving into acknowledgement that he may be on to something. Sensitive without the ability to express my emotions effectively. He was INsensitive in his delivery. He dismissed my pain as being all in my head. BUT - pretty sure my Googling of psychosomatic dental pain lead me to this site and the Curable app. There definitely is not much shared regarding TN that is positive. I hope by the end of the year I will have a success story to share and that you will too!

How are you?

 

[Missdee]

Thank you very much for your story! I have TMJ and my fear is that TMJ joint is so degenerated or misaligned that is damaging the TN nerve. The pain is terrible and I'm always scared of it and face paralisis... thank you for your answer to my post

Are you well?

 

[S70ryT3ll3r]

Are you well?

Hello lovely!! Yes! I haven’t had those shocks of pain in AGES. At the time I remember therapy helped and also a channel on YouTube called “Pain Free You”. Now I just live my life normally, but there are many problems that chronic pain sufferers usually have, like mental issues, trauma, ATTACHMENT issues, etc. I strongly believe all of those MUST be tackled to prevent relapses and etc. For that I recommend EMDR therapy and another channel that has been godsend - Adam Lane Smith on YouTube.

Best of luck and reach out to me if you need anything. My email: s70ryt3ll3r@outlook.pt

 

[Missdee]

Hello lovely!! Yes! I haven’t had those shocks of pain in AGES. At the time I remember therapy helped and also a channel on YouTube called “Pain Free You”. Now I just live my life normally, but there are many problems that chronic pain sufferers usually have, like mental issues, trauma, ATTACHMENT issues, etc. I strongly believe all of those MUST be tackled to prevent relapses and etc. For that I recommend EMDR therapy and another channel that has been godsend - Adam Lane Smith on YouTube.

Best of luck and reach out to me if you need anything. My email: s70ryt3ll3r@outlook.pt

Sent an email thankyou

 

[JanAtheCPA]

For the record, I'm quoting an AI response to my Google search for a generally-accepted answer to the question "why is it a bad idea to post your personal email address on a public forum?" :

"Posting your email address on a public forum is a bad idea because it exposes your personal information to anyone on the internet, making you highly vulnerable to spam, phishing attacks, and potential identity theft, as malicious actors can easily harvest your email address and use it to send unsolicited messages or launch targeted scams."​

This is why most, if not all, social media software, such as our forum software, includes the ability to use direct or private messaging between members. Our DM system is referred to as Private Conversations and if someone says" feel free to DM me" there are multiple ways to access the PC feature for that member.

Mind you, just as an aside (and not relevant to this instance but worth adding here) members should also be mindful about accepting unsolicited contacts from unvetted members who could be scammers "phishing" for victims. The same "Report" function available below every post can also be used to report a questionable private message.