Have been dealing with TN for almost 2 years, taking gabapentin 500mg/d to control my right-side facial pain. Just like most on this forum started with dentist, then oral surgeon, next an ENT, and neurologist - that could not identify the cause. My pain was triggered as I Iaid down to sleep or bent over. Mentioned this to my neurologist that a large hernia mesh maybe hitting a nerve like the vagus - large nerve from the brain that controls your autonomic functions (digestion, respiration, etc) and that is my cause of TN. No-way was the response.
Last month I had that mesh and many adhesion's removed, my abdominal muscles reconstructed, and a fundoplication for GERD/refllux. All went well or better than expected. As I was in recovery I had the absolutely worst TN pain I could imagine.
However, it was the last. Just a small spot of jaw numbness remains four weeks later.
Have been off surgery pain medication for two weeks and am down to 100mg gaba just at night as I wean myself from this drug.
Take home message - My TN was referred pain from impinged nerves in my abdominal cavity - Vagus? Maybe, as it had adhesion's and a 2+ lbs mesh from the scar tissue laying on it. My BMI is 21 but the hernia mesh created a situation like I was obese and probably created my GERD/Reflux that caused serious esophagus problems for me. It is your body so listen to it!!
I've never seen that here before,but i suppose it's possible and i hope you are done with it.I will say more than once my flair ups with TN ended with a huge fierce attack and then went away for months.Good luck!
Thanks for sharing George. This very interesting. Considering the vagus nerver is the longest nerve covering a large distance. Also called the “wandering nerve”. I often wonder if and about that nerve and have talked with blank looked doctors about his nerve being possibly involved in why my autonomic symptoms are so debilitating and sickening. I also have an extreme vasovagal response when my pain level goes past my pain scale 10. Anyway I wish my auto. symptoms did not kick my B… Also I have really bad GERD. Been thinking about tackling the GERD problem this year finally now that I have TN, ON & CPH under control. -Tree
This is interesting to me, because I have been sick with CFS for more than 32 years and just the last few months a new theory of vagal nerve involvement has taken the research world of CFS by storm. It essentially says that a state of constant inflammation, infection somewhere on the vagal nerve is the cause of many of our symptoms and it is the first theory I've read in all the years of having this awful illness that just flat makes sense.
We know that problems with the trigeminal nerve can cause migraine and I never had a migraine until I got sick with CFS and have had worsening ones ever since. I did not begin to have TN until about 10 years after getting sick with CFS, but chronically infected/inflamed areas of the vagal nerve would have widespread and changing effects.
Appreciate your replies and the understanding that the TN community has for each other.
I dream of the day we have a "pain box" that we can put our hand in and others can put theirs in so they can experience what we are going through. Empathy is very hard to learn in training. A surgeon friend of mine made into her third decade of practice before she was surgery patient - she now is a better MD because of it and listens more than talks to patients.
I am glad to hear your story of a successful surgery. I had hernia repairs and mesh implanted in 2005. I later developed TN in 2008. My TN was progressive and every drug therapy brought short term relief and an eventual worsening of symptoms. After two years of being told it was all in my head, my inability to work brought my income low enough to qualify Medical. I was referred to a surgeon at Stanford, Dr. Hendricksen. I brought my extensive medical records from Kaiser Permanente and offered them to my surgeon. Dr. Hendricksen declined to look at the MRI and other scans and X-ray saying that Kaisers magnets and equipment wasn't strong enough to make looking at them worth his time. Stanford's stronger equipment revealed the trigeminal nerve on the right side was being compressed by the artery and was almost severed. I had the newer nerve decompression surgery and my symptoms have ceased. I have some long term pain in my ear and temple from scar tissue remaining from the surgery. I will never know if the mesh implant increased the sensitivity to the nerve pain. It might also have been connected to dental implants as well. The problem for every person struggling to cope with TN is the health cares system is designed to avoid expense. The easiest way for Kaiser to deal with me was to tell me I was imagining or inflating my symptoms. If your insurer stalls, offers cheap diagnostics, and avoids finding the correct diagnosis, all too quickly the TN effects your ability to work and you lose your coverage and your not their problem. If your having the kind of pain I had you need to insist on appropriate action and testing be done and not accept shuck and jive answers to your questions. Your in pain for a reason.
The coming system is definitely designed to avoid expense and those of us with chronic illnesses will be the first to be denied services.
I think the biggest reason for the problems we have with the health care system is the professionals themselves who think if they don't know something it doesn't exist.
This is very interesting, George, thanks for posting.
When I was first diagnosed with TN in April last year (after suffering with it for 30 years!), I told my neurologist I also often get the pain shooting down my jaw into my throat and chest, sometimes my arms too. He just said "Well that's not TN, is it." and ignored it. My GP, when I later mentioned it to him, said "Oh, that's just your vagus nerve, nothing to worry about."
Given that I'd been told years ago the intense and 6 monthly pain both sides of my jaw was nothing to worry about, it was just my wisdom teeth trying to grow, and it now turns out on x-ray that I don't even have any wisdom teeth, the phrase 'nothing to worry about' does not fill me with confidence.
I also have a vasovagal issue... when I suffer severe pain, my body basically shuts down and my heart rate drops, can be as low as 30.
I have an appointment with the neurologist next week. I think I'll be insisting now on some research/thinking around the vagus nerve issue. Thank you, George! And good luck with your continued recovery.
Hi tstidd- I am also a Kaiser patient and have had good luck after bad luck with them. Assuming you live in the Bay Area because you went to Stanford.
Couple of things I can mention;
#1-San Jose KP was bad for getting any help with pain issues. After transferring to the Redwood City KP in the neuroscience Dept. I also had the MVD 11 months ago there with Dr. Sedrak I am still getting better. Just in case you happen to know any one else with Kaiser needing help. I have a great pain doc there also her name is Dr. Cherry. She is awesome. I feel so lucky because she is one of a kind. Kaiser is so hard to find good docs that let you be part of the solution. They have a bad rep for not being up with Technology. But Redwood City actually recruits docs from Stanford.
#2-I had what is called Cranial Sacral physical therapy for my scare tissue pain in my scalp this last year. We have been able to lesson the pain around my scar, ear and temple, and a spot above my ear where the screw was for the halo. So by massage I was able and am still taking away the long term pain that the MVD gave me. There is a good person at SJ KP Physical Therapy Dept.named Susan Casto for FIY.
It is interesting I also have pain from my chest in front and traps in back up my neck to my face, jaw and ear. I have to work on these muscles to get relief for the pain, the headaches, and face pain it causes.IE: Therapist said you do not have TMJ but if you do TMJ therapy, neck and back muscles you will reduce your pain and she has been correct. This is how I 1st began explaining my pain to the doctors for years they told me it was all in my head. Oooooof! But it wasn't Kaiser then. Kaiser is who dx me later.
Also Stanford is now hosting TNA group meetings bi-monthly. They are great, I have learned so much from them also.
Regards, Tree
tstidd said:
I am glad to hear your story of a successful surgery. I had hernia repairs and mesh implanted in 2005. I later developed TN in 2008. My TN was progressive and every drug therapy brought short term relief and an eventual worsening of symptoms. After two years of being told it was all in my head, my inability to work brought my income low enough to qualify Medical. I was referred to a surgeon at Stanford, Dr. Hendricksen. I brought my extensive medical records from Kaiser Permanente and offered them to my surgeon. Dr. Hendricksen declined to look at the MRI and other scans and X-ray saying that Kaisers magnets and equipment wasn't strong enough to make looking at them worth his time. Stanford's stronger equipment revealed the trigeminal nerve on the right side was being compressed by the artery and was almost severed. I had the newer nerve decompression surgery and my symptoms have ceased. I have some long term pain in my ear and temple from scar tissue remaining from the surgery. I will never know if the mesh implant increased the sensitivity to the nerve pain. It might also have been connected to dental implants as well. The problem for every person struggling to cope with TN is the health cares system is designed to avoid expense. The easiest way for Kaiser to deal with me was to tell me I was imagining or inflating my symptoms. If your insurer stalls, offers cheap diagnostics, and avoids finding the correct diagnosis, all too quickly the TN effects your ability to work and you lose your coverage and your not their problem. If your having the kind of pain I had you need to insist on appropriate action and testing be done and not accept shuck and jive answers to your questions. Your in pain for a reason.
Paddy- I am so sorry to hear that you also collapse from pain. We should not have to live like this. I hate it when it happens but I have learned a good trick. You have to trick your body by putting your feet above your heart so that the blood can not pool up in the extremities. That's what is happening, all the blood from the core rushes to your feet and hands causing BP to plummet extremely rapidly. So I will lye on the floor and put my legs up on the couch until I know its passed. If I am at the hospital and having a procedure such as Botox, then I put my legs up in the air or hold them to my chest. I do not care who thinks I am not lady like, because I feel like am going to die when a full episode comes on. Plus my Pain Doc does not like me passing out on her. She thanks me when I don't. :))
It is amazing what some docs say to people. I was telling them I have been eating and drinking from a straw for a year, that smiling hurt, or air getting into my mouth hurt, or a breeze on my face. I said all the same things I said to the neuro who dx me that I said to my dentist( she said I was grinding my teeth - are you kidding me I can not touch them together- I would tell her "you are not listening!"), my GP, ENT, and my Chiropractor. They all should have been qualified to get it. It was classic.
paddy said:
This is very interesting, George, thanks for posting.
When I was first diagnosed with TN in April last year (after suffering with it for 30 years!), I told my neurologist I also often get the pain shooting down my jaw into my throat and chest, sometimes my arms too. He just said "Well that's not TN, is it." and ignored it. My GP, when I later mentioned it to him, said "Oh, that's just your vagus nerve, nothing to worry about."
Given that I'd been told years ago the intense and 6 monthly pain both sides of my jaw was nothing to worry about, it was just my wisdom teeth trying to grow, and it now turns out on x-ray that I don't even have any wisdom teeth, the phrase 'nothing to worry about' does not fill me with confidence.
I also have a vasovagal issue... when I suffer severe pain, my body basically shuts down and my heart rate drops, can be as low as 30.
I have an appointment with the neurologist next week. I think I'll be insisting now on some research/thinking around the vagus nerve issue. Thank you, George! And good luck with your continued recovery.
These stories are really making me think about the vagus nerve. I've had several abdominal surgeries and am very prone to adhesions - even requiring additional surgeries because of them. I am currently using a neurologist who prescriped Tegratol 3 yrs ago and after 1 month the symptoms were so bad I had to go off it and went into remission for about a year. It started up again in AUgust 2013 but by the time I made an appt with him, I went into remission, so even thought I kept the visit he gave my a Rx for Amitripyline which I never took - waiting for next episode. I dont even know where to start to see if possibly this is my issue - does anyone have any suggestions?
I'm very interested in knowing more about what you posted below last month. I have CFS/EB, Parvo virus and HHV6 alongside the TN. My boyfriend has read that there is a study linking TN and CFS but at the moment I can't recall the details...my memory is SOOOO bad right now and has been for over a year. Long and short term. I also had migraines and chronic sinusitis which I had surgery for a few weeks ago.
Would you be open to discussing further with me? If so I can give you my email. I'm going to start a petition to the CDC and WHO to try and get more funding to TN and CFS.
I'm so sorry to read you've had CFS for so long....
Have a healthy day
Brandi
Anywho I don't know much about the vagus nerve, I feel like my neurologist didn't give me enough information....I'm going to get a second opinion.
grace said:
This is interesting to me, because I have been sick with CFS for more than 32 years and just the last few months a new theory of vagal nerve involvement has taken the research world of CFS by storm. It essentially says that a state of constant inflammation, infection somewhere on the vagal nerve is the cause of many of our symptoms and it is the first theory I've read in all the years of having this awful illness that just flat makes sense.
We know that problems with the trigeminal nerve can cause migraine and I never had a migraine until I got sick with CFS and have had worsening ones ever since. I did not begin to have TN until about 10 years after getting sick with CFS, but chronically infected/inflamed areas of the vagal nerve would have widespread and changing effects.
I had a vassalvagal attack this week in a doctors office. Have not been floored for a long time. Since I have gotten better from mvd. I believe it was caused by a bacterial infection in my eardrum which began in my mouth around the wisdom tooth and drain for estacian tube. Taking a antibiotic that is making me I’ll also. After switching to a different med. I am now feeling better. Funny all this ATN stuff started up the same way. Face, eyes, jaw and ear swollen and hurts let hell. So I am gonna ask and get some new test done to make sure that this not all from infection. My glands are still swollen and I still have night sweats after this 5 year flare up. I have had this pain starting 20 years ago. But 5 years ago it changed to full on ATN on one side and TN on the other with knock down migraines and chronic proxsymal hemicrainia.
Update - After my abdominal surgery last December my ATN was gone, but started to slowly creep back into my life as spring turned to summer. Along with the ATN came weekly or so pseudo-bowel blockages from adhesions that lead to a blockage resulting in an emergency small bowel resection followed by several complications. Yup, ATN that wakes me in the night a few times a week. Back on GABA 500mg at night so I can sleep most nights. Adhesion caused blockages were seen on CT Scan only days after surgery. So does that mean my vagus nerve is impinged again? Maybe. Will have other surgeries as the scar tissue grows and hope to ask the surgeon to check my vagus next time in there. Be well! George
Tree69 said:
I had a vassalvagal attack this week in a doctors office. Have not been floored for a long time. Since I have gotten better from mvd. I believe it was caused by a bacterial infection in my eardrum which began in my mouth around the wisdom tooth and drain for estacian tube. Taking a antibiotic that is making me I'll also. After switching to a different med. I am now feeling better. Funny all this ATN stuff started up the same way. Face, eyes, jaw and ear swollen and hurts let hell. So I am gonna ask and get some new test done to make sure that this not all from infection. My glands are still swollen and I still have night sweats after this 5 year flare up. I have had this pain starting 20 years ago. But 5 years ago it changed to full on ATN on one side and TN on the other with knock down migraines and chronic proxsymal hemicrainia.