I am brand spanking new to all of this. Not new to unexplained neuralgia and mysterious sensations. Years in the making. New to ES. Bilateral. I have all the main symptoms I read about. What I would love to know from others is about tooth pain. For years, I have had probs with my lower back molars, started on the left side (my worst pain side). Dentists and endodontists wanting to try and see if a root canal or removal would help. An maxo surgeon looked back then and said absolutely not. He’s had many patients come to him after all molars of an entire aide have been removed and still have pain bc it was nerve related. BUT I have ended with two together get root canals bc the pain is so bad that my clenching still night broke those two. Before that, no cavities, infections, or cracks. But my teeth hurt if something is too hot or too cold, which is the reason for root canals usually. So sometimes the teeth are specific and their top mirror tooth will respond with a twinge. Other times, I can drink too warm liquid and one side of my teeth (upper and lower) feel like hot lightning shooting from the back to the front and stop. My mouth guard does the same thing to my upper teeth at room temperature. Anyone else deal with dental? Thank you so much for any feedback. And I’m grateful for being able to participate in this group.
Here’s a picture of the way the trigeminal nerve is positioned in our faces. Understanding its placement will help you understand why your teeth are hurting. The trigeminal nerve is one of the nerves almost always irritated by ES.
Thank you for sharing. That makes a lot of sense. This has been so many years long with the teeth, before other symptoms. I wonder if the weeks of double vision are linked to ES as well. Not even steroids helped. MRI and full eye tests and imaging never produced a reason for that episode. Idiopathic. My left eye did not track with my right eye. And everything has typically been the left side. This is my first bout of both sides. I’m learning so much in a day in here.
I had tooth pain, it started with one molar, I had the filling re-done but it made it worse…I had a salivary gland stone too around that same tooth, & it was while I was having tests for that they noticed the styloids, so we realised it was nerve pain, other teeth hurt later too . I was given amitriptyline for the nerve pain & it worked quite well.
I’ve had 2 surgeries & do still have some tooth pain, it’s better than it was though, & I have other neck problems which contribute too…
Have you tried nerve pain meds, like Gabapentin, Amitriptyline, Carbamazapine etc? They can work well, but take a little time to work usually. There’s more info in the Newbies Guide Section about that. Ben’s Friends also have a Facial Pain group which is very informative & might be worth looking at. It sounds as if you have TN & GPN from the pain you’re getting. I hope that you can get some help soon!
Hi Laraine…welcome to this awesome site! I had molar pain back initially as symptom. It was a very long needless journey with my previous dentist, and endo dentist who did a root canal and eventually an oral surgeon who removed the molar. None of this helped the nerve pain and in fact made it worse. I eventually persisted with my PCP when I felt the styloid in my throat near the tonsil although I did not know what it was at the time. An ENT eventually diagnosed Eagles and the journey began to find an ENT/otolayngologist. My molar pain eventually settled down and then the other side started to be an issue and I had surgery on that side a year ago. I still occasionally have molar pain on the remaining side but find some lidocaine on my neck and around my ear helps. I also really open my mouth to stretch the styloid area in my mouth and that is helpful. Nerve medication may also be helpful to you as Jules mentioned. Best wishes!
Thank you for responding. I hadn’t found much info on specific molars or teeth before this forum. Did/do yours respond with hot and cold as well (aside for just the typical pain)? Mine do, as well as when I first out my night guard in before bed. I think bc the dentists and endodontists hear hot and cold aggravating your tooth, they immediately want to do a root canal or extraction.
Good to hear your pain has lessened since surgery. It really takes the enjoyment out of eating. We can’t have that!
It’s strange how it’s one tooth. It really flags the dental drs for root canal. And persistent pain just leads them to believe it’s a failed root canal and then it’s out. Mine was one tooth and now it’s various ones. They can hurt just being there or they will hurt when anything is too hot or too cold.
I have heard if amitriptyline and wanted a dr, three years ago, to let me try it bc then I was experiencing all sorts of neurological things to include pain. She took me through so many antidepressants and add ons for anxiety bc she wanted to get the right matches. I think I went through almost all of them. I finally just said stop as it was making me sick and even more emotionally stressed from the changes. I did try Cymbalta and I had no pain in my back and legs or my mouth. But I ended up with some mouth ulcers. We weren’t sure whether it was food related or from the meds. Shame bc I had energy, no anxiety or blues, and no pain. She didn’t want me to use the amitriptyline bc it was an older medicine. She felt too many side effects came with the older meds.
Will you be on meds the rest of your life? I would assume one would or the pain would return, correct? I will look more into Ben’s Friends. Thank you sharing your info with me. Getting specifics like that helps the psyche. Sometimes you wonder if the pain is something else or ES…or if you’re bringing it on yourself. Grateful for you.
I’m sorry that you have tried lots of medications & not found any that help…I guess I will stick with the Amitriptyline; I’ve tried coming off it a few times & the pain’s returned, & the medication has taken a bit longer each time to kick in, I’m worried it could stop working one time, so I’ll stick with it for now! I don’t get any side effects at this level, so very lucky!
Well I think I could have had results if enough time was given. I think she overloaded my system as she would go from one directly to another, but it was for mental health issues. Because of the nerve pain and sensations at the time with the depression and anxiety, I asked about the amitriptyline. She didn’t want to use it. It could’ve been the one for me. Lol! I’m glad it works for you. I wouldn’t think it would stop working. I think you will be ok with it. And no side effects is a BLESSING!
Who knows…maybe my new drs will mention it.
Hi ,I had many teeth removed for no real reason and the pain is still there,
Ent said it’s dental, then dentist didn’t know it was styloid pocking through the arch of the mouth, so we thought maybe a spun wisdom tooth, even after x ray so he pulled two more and I paid him €200. It wasn’t a spun tooth.
So he said go to ENT, he had never seen anything like it , but would like to know what it is.
As for amitriptyline, for myself 20 mg knocks me out , if taken at 3pm or 11 pm I sleep well but the next days reduces me to a blob of mush
Not fit for anything unless I’m playing an extra in a zombie movie.
The dose is the poison they say, start off small and don’t pig out on narcs the way tend to do
Yes, I’m hearing that often. I refuse to go that route and I’m glad I had a surgeon tell me not to let anyone just take teeth not knowing what the root cause is. I haven’t started any meds as of yet. I am def curious about the amitriptyline as I have requested in the past bc I knew it would tend to nerve pain and my anxiety. Different dr now so we will see. I’ll take your advice into consideration as to how much to take if I do start it. I’m already feeling like a blob as is, I don’t need to be mush. Appreciate your spirited convo!
Amitriptyline for nerve pain is taken at a lower dose than for depression, starts at 10mg a day, I take 20mg, I think you can (under Drs advice) go up to 50mg. I did get palpitations when I upped mine to 30mg, I had quite a bad flare up after an over thorough dental clean!
Might be worth asking about it, we’re all different…
Ahh, I see. So this does come in flares? I wondered bc having an aching neck to all this I have right now is so very different. And it started the next day or two days after the dentist. I though he had maybe damaged something. I had upper and lower dental impressions and he held down the lower ones himself for the minutes needed. And that was a lot of pressure.
Yes! ES pain comes & goes. Some days are very uncomfy & others almost normal. Sometimes we can pinpoint the cause(s) of the difficult days but other times not.
Ooh ok, that makes more sense to me then. I’m learning so much…and still have so much more to learn.
For what it’s worth, Laraine, I’m still learning about ES & I’ve been dealing with it since 2014.
Those emojis let me add bc that’s where I’m at, the clown at a rodeo!
I had a crown, then root canal in my left back lower molar. The pain is still present after 6 months.
My dentist was treating me for Ernest syndrome. I learned of ES just before the Pandemic hit. I’m hoping to find a Dr. that can rule it out. I have been suffering 8 yrs.
Aw, I’m so sorry to hear that. I totally understand. My dental pain has been years and it’s def frustrating. I just found out about my styloids and it’s like an aha moment as to why my teeth have been in pain. Now, I’m just trying to focus on one step at a time down the path of my journey. I hope your journey also supplies you with answers and healing.
Ernest & Eagles syndromes have similar symptoms…have you had a CT done to show the styloids? that could help with differentiating between the two.
Here’s a link to the doctors list:
Dr Jeffrey Scott Magnuson, Florida Hospital Celebration has done intraoral robotic surgery, &
Dr Rui Fernandes, University of Florida and Shands Hospital has also done surgeries on several members & is supposed to be very nice, so either would be worth a try!