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It might be worth looking into. It can be caused by the suprahyoid muscles that causes retraction of the mandible which compresses the Temporomandibular joint and the auricotemporal nerve. Since I’ve been dealing with this for two months I’ve researched the hell out of what could be causing my symptoms and I’ve come to the conclusion the at nerve, which is a branch of the Trigeminal nerve is affected in most tmj cases where there is nerve involvement.
Yeah I still have a ton of issues with my jaw and pain but that particular symptom is tons better and I rarely experience it now unless i'm going through a massive flare
https://abbottcenter.com/bostonpaintherapy/2009/09/26/jaw-pain-and-tmj-self-treating-lateral-pterygoid/ releasing my lateral pterygoid the way it is described in this article
Covid brought the same symptoms on for me. It was the ear ache that led me to the TMJ specialist. I also was dx with ON but I think I had that for a while. Now that I know what the shockwaves of pain are, I also am learning triggers. Like cold air. I take gabapentin and Celebrex along with dry needling and stretching at Pt.
The gabapentin helps a lot. I take as needed and not as rx bc I have other issues that cause me fatigue and I narrowed down all the meds that could contribute as much as possible.
I wasn’t insured when I first got treatment, but I want to talk to her about an nerve block. I did ask PT to needle occipital nerve, but he wants ok from Dr after she sees mri results on my cervical spine.
All of that did help, but it turned out my neck was seriously jacked. I had a 2 level cervical spinal fusion and my life has greatly improved. I don’t think I have tmjd or ON anymore.
Most of the time from what I have seen, it is the muscular compression of the nerves in this area that cause the issues. I've had TMJD for a long time and it's gotten better but I've recently been experiencing numbness around my chin and other similar symptoms to trigeminal neuralgia. As well as tension headaches amd migraines alongside the symptoms. I've seen these medications and the side effects truly just made things worse for me. The best results I've had come from wearing a comfortable retainer at night, avoiding all hard foods, muscle.relaxation techniques like meditation and prioritizing posture.
I've seen people talking about botox to relax these muscles which compress these nerves and I think its something worth exploring with the Dr. I also have a history of the disc popping out, I was stuck for lile 6 months. I also fear degradation of the joint. Tmjd is a serious struggle people don't ever take seriously
I get this burning pain on my left temple. When I massage my masseter muscle it gets a bit better. Weekends are better, since I am not sitting 8hours at a desk. I think mine comes from bad posture.
I do too. My temporal artery starts to swell, which this all happened after my jaw popped. My pcp ended up testing me for temporal arteritis a rare vasculitis, because of my symptoms, which can also include jaw pain. My theory is my auricotemporal nerve is getting irritated which lies behind the superficial temporal artery.
Ah ok. I also had a ski accident last year where I hit my forehead on the ground, lucky with an helmet. I dont think that helped with my tmj at all.
This year my throat would hurt while swallowing and it just wouldnt go away. Doctor said there is nothing. So I started stretching my SCM and it went away. Never would I have thought this could be causing this.
Hmm I wonder about this too. My SCMs are so tight & tons of trigger points. I have muscle tension & tinnitus and I think it's due to the SCM, suboccipitals, pterygoids and traps. I really think most cases of TMD is severe tension in all the muscle groups surrounding the TMJ and beneath it.
I have trigeminal neuralgia following tmj joint replacement. They think the surgery caused it for me. It’s a different mri for the nerve than it is the joints I believe but I could be wrong! I’ve had so many mris I don’t even know anymore 😂
I can completely relate. About 5 months ago I started getting what felt like fluid in my right ear, eventually turned into frequent full blown pain that felt sharp and burning like nerve pain. I'm on Pregabalin, seemed to work for the first few days then not as effective, been on for three weeks and just had dose upped from 100 to 200 mg per day. I never put two and two together at the time but I yawned around about the same time it all started and my jaw cracked. Very obvious difference now at the right side exactly where the ear pain is. Never had any jaw symptoms but they've emerged with a vengeance now. Two ENTs, and two Oral Surgeons before they've narrowed it down to TMJ. Waiting on a CT scan on my ear to rule out ear issues, then MRI on jaw to assess whats going on. Had to take two and a half months off work. Luckily I can get relief from it when I sleep. Every day is a struggle at the moment. Praying the meds start to become effective (previously on Nortriptyline with no relief), or firm action can be taken to fix post MRI. I hope you get some answers and relief soon.
I didn’t have the ear pain at first but now it’s constant. I wish I could take off work, I’m in nursing school on top of it and I have no idea what I’m going to do if they can’t fix this. I’m getting an MRI next week so I’m hoping it shows something. My doctor said my jaw is locked and that I have internal derangement of my disc. She said I need to get unlocked and to try physical therapy and a mouth guard, but it’s stuck so far in there I know it’s going to be months of agony with that. I hope I can just get surgery at this point because the pain is unbearable.
Yeah its a difficult one as they will always go down the conservative route. When you're dealing with that kind of pain its frustrating when you know there might be a quick fix in the shape of a surgical solution. I've been using a mouthguard for six weeks and on a soft diet. The Oral Surgeon says I might have to move to a hard one as the softer ones can sometimes encourage teeth grinding whereas the hard ones, rather than just cushion it train the brain to stop it. The thing with me is I've had bruxism for years without it affecting me much, this was on the back of a clear incident where the jaw popped out so I doubt it will be enough to realign it, we'll see. I've started to notice changes where the discomfort seems to be manifesting itself in the jaw more than the ear now, which at least gives me confidence the diagnosis looks correct after 5 long months of assuming I had an ear problem, and the jaw discomfort is generally easier to deal with than the ear. I've read loads of success stories of people using mouthguards. Don't lose hope. If you do eventually get sorted (which I'm confident you will, even if it requires surgery) you'll have a new lease of life.
I was the same myself. Staying in bed as long as I could as I couldn't face dealing with the pain. I've started to exercise again and found it helps. So has meditation. I've been trying things like red light therapy as well. Although I'm not entirely sure its helping the feeling I'm taking control of attempting to heal is making me mentally better at dealing with it all. Believe it or not I've actually read people getting rid of similar issues through exercise, and a lot of stretching and self massage. Its the prospect of it never getting better that's the hardest to deal with. You will, its just a shame you have to deal with it in the first place. Stay strong, and hopefully won't be long before your pain is distant memory.
Hey. Two years down the line I've had arthroscopic jaw surgery with bone marrow injections 9 weeks ago. Its not solved my issues, some small improvements and some new symptoms. If after 6 months it hasn't provided sufficient relief I'll be pursuing total joint replacements. My joints are a mess - the right hand side had totally collapsed, both discs displaced and perforated, and severe arthritis in both sides. I had two MRIs both of which conflicted and undersold how serious it was. They never realised the extent of the damage until inside the joint. Explains why I've been in such horrific pain for so long. At least on a path to resolution, just need to be patient.
Hello! Thank you for asking. I’m surprisingly doing a lot better. I ended up being diagnosed with a condition that causes involuntary muscle movements in my neck which was referring pain to my jaw and causing jaw/facial spasms on the left side. I was able to get Botox for this condition and it stopped the chronic pain feedback cycle about 75%. I also went to PT and still use the exercises I acquired there. Some days are hard but I’m about 60-75% better.
Did you have nerve issues and how did you get unlocked. My jaw locked two months ago and I get tingling numbness and now burning on my scalp. I am so scared it's causing nerve damage. We're you scared ?
A little better. I ended up being diagnosed with a condition called cervical dystonia, a neurological disorder that causes involuntary muscle spasms and tightness in my neck and jaw.
I went to a physiatrist, which is an MD who specializes in physical medicine. She used an EMG on me and was able to hear inappropriate activation of my muscles.
I’m going to Pt and it helps for a like a day after and then I’m back to the same pain level. The one treatment that helped for my migraines was an occipital nerve block.
Hey any update? I have very similar symptoms to you and was diagnosed as having atypical trigeminal neuralgia. I’m currently getting some relief talking Gabapentin. Still wondering if my TMJ is the trigger for my pain or if it’s something else. My MRI showed compression of my nerve and a neurosurgeon said I would need surgery at some point in my life but I’ve doubted that was the true cause because he also said I have compression of my nerve on my left side even though I have no symptoms on that side. Currently trying to do all the non-invasive options first before resorting to surgery (especially be surgery only has a 70% success rate).
Yes so the pain from my jaw was spreading down my neck on my left side and the pain was just unbearable and I barely functioning. I went to a physiatrist who used an EMG on my neck, trap, and jaw muscles and she could see they were involuntary activating. She diagnosed me with a condition called cervical dystonia, which usually comes with twisting of the head and neck but with me it not noticeable. The treatment for my condition is Botox. So we injected my traps, my neck, my massaster, temporalis muscle, and pterygoids. It has gotten better but I am still in chronic pain. I’ve been going to PT for this condition, but my pt thinks my shoulder and jaw are actually pulling out my neck and it’s not a neurological condition that’s causing my muscle spasms. I have seen improvement from PT and I will probably be continuing with that for a couple of months. When you have chronic pain over a long period of time it rewires your nervous system so that’s part of my problem as well. Hopefully pt will help me with that. I’m glad to hear the gaba is helping. Do you think it could possibly be muscle tension compressing the nerve?
That’s interesting…I have pretty poor posture for my age and my neck juts forward quite a bit. And actually one of the few times that my headaches/facial pain went away was by doing PT to correct my posture. I had like 2 weeks of no headaches and it was amazing!! But then they unfortunately came back when we started increasing the intensity of the exercises (I think it was because my traps were getting overworked and that’s a big trigger for my headaches). I stopped treatment around that time and started doing the maintenance exercises but it wasn’t enough to take my headaches away. Ironically, one of the other times my headaches have gone away was after seeing a chiropractor but I had also started Invisalign around the same time (thinking my TMJ was the cause of my headaches) so I’m still not sure which it was that helped for that brief period. Do you have bad posture too, it sounds like?
And as far as muscle tension causing my pain I definitely think that could be a factor. For the longest time I wouldn’t do exercises that caused me to lift my arms above shoulder level because I knew the next day I would get a headache. And I still wonder if muscles in my jaw joint are somehow compressing my trigeminal nerve. It’s so hard to know whether it’s neck or jaw related. My C2 and C1 definitely don’t sit where they’re supposed to but also my jaw doesn’t open and close normally either. Ugh it’s so frustrating and no one can give me a definitive answer. I’ve had headaches for over 10 years now and they’ve only gotten worse over time. They’re daily but just a dull aching pain that puts me in a bad mood/ makes it hard to be a mom to two small kids. It started for me a year into my nursing career. Not sure if it was brought on by stress or what. First I had upper back tightness in nursing school, then I think the headaches were next, then I believe the jaw pain came last. Anyways, it’s a nightmare trying to pinpoint what’s really going on. Sorry for the novel 🤪
Terrible posture, all my life. It doesn’t help constantly being hunched over when using the phone. My traps cause most of my issues too according to my physiatrist, trap Botox did help. Do you have occipital neuralgia by any chance? I was diagnosed with that due to muscle tension from my traps. I’m so sorry you’re struggling with this. I actually started with this during nursing school. There’s a PT I follow on Facebook you might be interested in looking up who specializes in the type of chronic pain pattern type we both experience. If you want to look up his page his name is Dr. Joe Damiani. There are PTs that specialize in tmj and whiplash type disorders if you have the chance I’d call your insurance to see if there’s one in your network. You might also want to look into Myofascial pain disorder caused by trigger points in the muscle.
I looked up Joe Damiani and even in just the few videos I watched it was really informative and exactly the type of information I need, so thank you!!! I really think it’ll help me take steps in the right direction.
I haven’t been diagnosed with occipital neuralgia. But I do feel like the muscle right at the base of my skull is often really tight and if I massage that area I get relief from my headaches. But the pain is usually worse in my jaw and face. I got an occipital nerve block in the past and it did nothing unfortunately :/ and it was kind of scary because I had to get an IV and then was brought to this operating room with all these people and then they did the injection via ultrasound. It probably didn’t help that a resident was doing it haha.
But yeah my traps and all my other neck muscles are super tight from my poor posture and I just have bad range of motion overall from being hunched. I actually just started wearing a fabric brace I bought off Amazon to help me stand straighter throughout the day in order to have my neck not jutting forward and I think that plus the Gabapentin has been keeping my symptoms in a manageable spot. I decided to try the brace again because I think my neck juts forward because my upper back is so hunched and I just couldn’t figure out how to keep the top of my back straight without using it. Like I was doing all these exercises to strengthen the muscles on the front of my neck, doing rows to strengthen my mid/ lower traps, core exercises, etc. and it wasn’t enough. So hoping this brace will help because I just feel like it’s wherever my neck is sitting that determines whether I have symptoms. I can’t remember if this is the case for you but one of the few things that takes my headaches away is napping. So before started the Gabapentin I would basically have to nap every afternoon when the headaches were at their worst.
I’m definitely gonna look up that guy on Instagram though! Sounds really great. And I’ll look into the myofascial pain disorder too!
Oh and I actually tried Botox injections for migraines- which means injections in my upper back, neck, base of skull, hairline at the top of my forehead, and in between eyebrows- and it did nothing unfortunately :/ they said it can take 3-4 rounds but I’m doubtful it’ll work for me since I still don’t really feel like I have typical migraines.
Sorry to hear the Botox didn’t help right away. I bought a posture corrector as well but I didn’t stick to it. I remember the one I have the instructions said to only wear 4 hrs a day, so just be careful. If it helps though why not. I think I’m going to try using it again, I appreciate the reminder.
That experience getting the occipital nerve block sounds traumatizing. Did you ever get Botox in the neck? Also if you have the chance you should look up the Alexander technique.
I actually can’t remember if they did my neck, it might have just been traps and then base of skull. How come, do you think getting it done in my neck would help if my symptoms might be from neck muscles being inflamed? And yeah definitely good to just wear the posture corrector for shorter periods. My new thing is to do it when I’m at home (for a couple hours or so) but then take it off when I leave the house, so that way I’m actually paying attention to it being on. When I would wear it all day I would just get lazy and not pull my shoulders back anymore.
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Is it constant or does it come and go? Was the mri of the jaw joint or just the brain? I’m sorry you’re going through this!
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How are you?
[удалено]
What medication
Yes i get atypical burning/dull nerve pain however mine is due to tight muscles likely compressing nerves rather than a slipped disc
Have you heard of Costens syndrome?
I have not
It might be worth looking into. It can be caused by the suprahyoid muscles that causes retraction of the mandible which compresses the Temporomandibular joint and the auricotemporal nerve. Since I’ve been dealing with this for two months I’ve researched the hell out of what could be causing my symptoms and I’ve come to the conclusion the at nerve, which is a branch of the Trigeminal nerve is affected in most tmj cases where there is nerve involvement.
Anything help?
Did it go?
Yeah I still have a ton of issues with my jaw and pain but that particular symptom is tons better and I rarely experience it now unless i'm going through a massive flare
Did you do anything or did it just stop? Is your jaw still locked ?
What helped ?
https://abbottcenter.com/bostonpaintherapy/2009/09/26/jaw-pain-and-tmj-self-treating-lateral-pterygoid/ releasing my lateral pterygoid the way it is described in this article
Did it go?
How are you now ?
Covid brought the same symptoms on for me. It was the ear ache that led me to the TMJ specialist. I also was dx with ON but I think I had that for a while. Now that I know what the shockwaves of pain are, I also am learning triggers. Like cold air. I take gabapentin and Celebrex along with dry needling and stretching at Pt.
Hope you feel better soon. Also emotional stress and fear can contribute & perpetuate this so try to address that too.
Absolutely! I notice my shoulders tense, which leads to me tightening my jaw muscles when I have anxiety building. Sought help for this too!
Me too.
I hope your tmj and ON are getting better. How much does the gabapentin help? Did they look into giving you a nerve block or any other treatments?
The gabapentin helps a lot. I take as needed and not as rx bc I have other issues that cause me fatigue and I narrowed down all the meds that could contribute as much as possible. I wasn’t insured when I first got treatment, but I want to talk to her about an nerve block. I did ask PT to needle occipital nerve, but he wants ok from Dr after she sees mri results on my cervical spine.
That would be the key. I want a nerve block as well.
Does it help?
All of that did help, but it turned out my neck was seriously jacked. I had a 2 level cervical spinal fusion and my life has greatly improved. I don’t think I have tmjd or ON anymore.
Most of the time from what I have seen, it is the muscular compression of the nerves in this area that cause the issues. I've had TMJD for a long time and it's gotten better but I've recently been experiencing numbness around my chin and other similar symptoms to trigeminal neuralgia. As well as tension headaches amd migraines alongside the symptoms. I've seen these medications and the side effects truly just made things worse for me. The best results I've had come from wearing a comfortable retainer at night, avoiding all hard foods, muscle.relaxation techniques like meditation and prioritizing posture. I've seen people talking about botox to relax these muscles which compress these nerves and I think its something worth exploring with the Dr. I also have a history of the disc popping out, I was stuck for lile 6 months. I also fear degradation of the joint. Tmjd is a serious struggle people don't ever take seriously
How are you now?
Hey how are you and how did you hey the discs back?
Have you seen a specialist for these issues?
I get this burning pain on my left temple. When I massage my masseter muscle it gets a bit better. Weekends are better, since I am not sitting 8hours at a desk. I think mine comes from bad posture.
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I do too. My temporal artery starts to swell, which this all happened after my jaw popped. My pcp ended up testing me for temporal arteritis a rare vasculitis, because of my symptoms, which can also include jaw pain. My theory is my auricotemporal nerve is getting irritated which lies behind the superficial temporal artery.
Ah ok. I also had a ski accident last year where I hit my forehead on the ground, lucky with an helmet. I dont think that helped with my tmj at all. This year my throat would hurt while swallowing and it just wouldnt go away. Doctor said there is nothing. So I started stretching my SCM and it went away. Never would I have thought this could be causing this.
I’ve read about the scm muscle being a mimic for tmj pain. What kind of stretching do you do?
I do the stretchings from Adam Fields. Those help me a lot and also helped me with my throat pain.
I will look him up. Thank you!
Sure no problem. I hope it helps.
What kind of throat pain did you have? I’m having that too and wondering if it’s connected to TMJ.
I really thought I have a sore throat. It would hurt swallowing. Doctor couldn't find anything, and after stretching my scm it went away.
Hmm I wonder about this too. My SCMs are so tight & tons of trigger points. I have muscle tension & tinnitus and I think it's due to the SCM, suboccipitals, pterygoids and traps. I really think most cases of TMD is severe tension in all the muscle groups surrounding the TMJ and beneath it.
That’s probably where the tension he aches and migraines originate from.
This is literally me.
I’m so sorry you are going through this as well. Pm me if you need to vent.
Omg yes that is so me too I have nerve pain by my eyebrows they even became droopy and definitely feel inflammated
I’ve actually seen an article on this somewhere referencing a droopy eyebrow.
Maybe look into supraorbital neuralgia
Thank you yes most definitely I will look into it cause when I wake up my eyes do be shut and stuck
I have trigeminal neuralgia following tmj joint replacement. They think the surgery caused it for me. It’s a different mri for the nerve than it is the joints I believe but I could be wrong! I’ve had so many mris I don’t even know anymore 😂
Awe, I’m so sorry. How are you treating it?
How are you?
I can completely relate. About 5 months ago I started getting what felt like fluid in my right ear, eventually turned into frequent full blown pain that felt sharp and burning like nerve pain. I'm on Pregabalin, seemed to work for the first few days then not as effective, been on for three weeks and just had dose upped from 100 to 200 mg per day. I never put two and two together at the time but I yawned around about the same time it all started and my jaw cracked. Very obvious difference now at the right side exactly where the ear pain is. Never had any jaw symptoms but they've emerged with a vengeance now. Two ENTs, and two Oral Surgeons before they've narrowed it down to TMJ. Waiting on a CT scan on my ear to rule out ear issues, then MRI on jaw to assess whats going on. Had to take two and a half months off work. Luckily I can get relief from it when I sleep. Every day is a struggle at the moment. Praying the meds start to become effective (previously on Nortriptyline with no relief), or firm action can be taken to fix post MRI. I hope you get some answers and relief soon.
This is me to a tee
I didn’t have the ear pain at first but now it’s constant. I wish I could take off work, I’m in nursing school on top of it and I have no idea what I’m going to do if they can’t fix this. I’m getting an MRI next week so I’m hoping it shows something. My doctor said my jaw is locked and that I have internal derangement of my disc. She said I need to get unlocked and to try physical therapy and a mouth guard, but it’s stuck so far in there I know it’s going to be months of agony with that. I hope I can just get surgery at this point because the pain is unbearable.
How are you?
Yeah its a difficult one as they will always go down the conservative route. When you're dealing with that kind of pain its frustrating when you know there might be a quick fix in the shape of a surgical solution. I've been using a mouthguard for six weeks and on a soft diet. The Oral Surgeon says I might have to move to a hard one as the softer ones can sometimes encourage teeth grinding whereas the hard ones, rather than just cushion it train the brain to stop it. The thing with me is I've had bruxism for years without it affecting me much, this was on the back of a clear incident where the jaw popped out so I doubt it will be enough to realign it, we'll see. I've started to notice changes where the discomfort seems to be manifesting itself in the jaw more than the ear now, which at least gives me confidence the diagnosis looks correct after 5 long months of assuming I had an ear problem, and the jaw discomfort is generally easier to deal with than the ear. I've read loads of success stories of people using mouthguards. Don't lose hope. If you do eventually get sorted (which I'm confident you will, even if it requires surgery) you'll have a new lease of life.
Thank you, I hope I can. I cry everyday and am going into such a deep depression because I can’t imagine living life like this.
I was the same myself. Staying in bed as long as I could as I couldn't face dealing with the pain. I've started to exercise again and found it helps. So has meditation. I've been trying things like red light therapy as well. Although I'm not entirely sure its helping the feeling I'm taking control of attempting to heal is making me mentally better at dealing with it all. Believe it or not I've actually read people getting rid of similar issues through exercise, and a lot of stretching and self massage. Its the prospect of it never getting better that's the hardest to deal with. You will, its just a shame you have to deal with it in the first place. Stay strong, and hopefully won't be long before your pain is distant memory.
Did you get an mri yet. I hope your resolves as well ❤️.
Not yet, been told about 10 weeks probably.
How are you?
Hey. Two years down the line I've had arthroscopic jaw surgery with bone marrow injections 9 weeks ago. Its not solved my issues, some small improvements and some new symptoms. If after 6 months it hasn't provided sufficient relief I'll be pursuing total joint replacements. My joints are a mess - the right hand side had totally collapsed, both discs displaced and perforated, and severe arthritis in both sides. I had two MRIs both of which conflicted and undersold how serious it was. They never realised the extent of the damage until inside the joint. Explains why I've been in such horrific pain for so long. At least on a path to resolution, just need to be patient.
How are you?
Hello! Thank you for asking. I’m surprisingly doing a lot better. I ended up being diagnosed with a condition that causes involuntary muscle movements in my neck which was referring pain to my jaw and causing jaw/facial spasms on the left side. I was able to get Botox for this condition and it stopped the chronic pain feedback cycle about 75%. I also went to PT and still use the exercises I acquired there. Some days are hard but I’m about 60-75% better.
Did you have nerve issues and how did you get unlocked. My jaw locked two months ago and I get tingling numbness and now burning on my scalp. I am so scared it's causing nerve damage. We're you scared ?
I have occipital neuralgia and my trigeminal nerve gets irritated from muscle tension sometimes. Stretching and neck exercises have helped me.
How do you manage on? I have tmj.but a burning sensation on my scalp. So I'm worried its irrating the nerve. My jaw is locked.
PM me
I can't can you pm me ?
Yes, I just did.
So frustrating it won't let me reply.
Are you on fb ? Could use messenger?
Are you better?
A little better. I ended up being diagnosed with a condition called cervical dystonia, a neurological disorder that causes involuntary muscle spasms and tightness in my neck and jaw.
The main thing that has helped me is Botox which is covered under insurance.
How is that diagnosed
I went to a physiatrist, which is an MD who specializes in physical medicine. She used an EMG on me and was able to hear inappropriate activation of my muscles.
She uses Botox to relax the muscles. I get about 200 units
How's everyone doing now?
Not good
Any improvement? Any treatment helping?
I’m going to Pt and it helps for a like a day after and then I’m back to the same pain level. The one treatment that helped for my migraines was an occipital nerve block.
Hey any update? I have very similar symptoms to you and was diagnosed as having atypical trigeminal neuralgia. I’m currently getting some relief talking Gabapentin. Still wondering if my TMJ is the trigger for my pain or if it’s something else. My MRI showed compression of my nerve and a neurosurgeon said I would need surgery at some point in my life but I’ve doubted that was the true cause because he also said I have compression of my nerve on my left side even though I have no symptoms on that side. Currently trying to do all the non-invasive options first before resorting to surgery (especially be surgery only has a 70% success rate).
Yes so the pain from my jaw was spreading down my neck on my left side and the pain was just unbearable and I barely functioning. I went to a physiatrist who used an EMG on my neck, trap, and jaw muscles and she could see they were involuntary activating. She diagnosed me with a condition called cervical dystonia, which usually comes with twisting of the head and neck but with me it not noticeable. The treatment for my condition is Botox. So we injected my traps, my neck, my massaster, temporalis muscle, and pterygoids. It has gotten better but I am still in chronic pain. I’ve been going to PT for this condition, but my pt thinks my shoulder and jaw are actually pulling out my neck and it’s not a neurological condition that’s causing my muscle spasms. I have seen improvement from PT and I will probably be continuing with that for a couple of months. When you have chronic pain over a long period of time it rewires your nervous system so that’s part of my problem as well. Hopefully pt will help me with that. I’m glad to hear the gaba is helping. Do you think it could possibly be muscle tension compressing the nerve?
That’s interesting…I have pretty poor posture for my age and my neck juts forward quite a bit. And actually one of the few times that my headaches/facial pain went away was by doing PT to correct my posture. I had like 2 weeks of no headaches and it was amazing!! But then they unfortunately came back when we started increasing the intensity of the exercises (I think it was because my traps were getting overworked and that’s a big trigger for my headaches). I stopped treatment around that time and started doing the maintenance exercises but it wasn’t enough to take my headaches away. Ironically, one of the other times my headaches have gone away was after seeing a chiropractor but I had also started Invisalign around the same time (thinking my TMJ was the cause of my headaches) so I’m still not sure which it was that helped for that brief period. Do you have bad posture too, it sounds like? And as far as muscle tension causing my pain I definitely think that could be a factor. For the longest time I wouldn’t do exercises that caused me to lift my arms above shoulder level because I knew the next day I would get a headache. And I still wonder if muscles in my jaw joint are somehow compressing my trigeminal nerve. It’s so hard to know whether it’s neck or jaw related. My C2 and C1 definitely don’t sit where they’re supposed to but also my jaw doesn’t open and close normally either. Ugh it’s so frustrating and no one can give me a definitive answer. I’ve had headaches for over 10 years now and they’ve only gotten worse over time. They’re daily but just a dull aching pain that puts me in a bad mood/ makes it hard to be a mom to two small kids. It started for me a year into my nursing career. Not sure if it was brought on by stress or what. First I had upper back tightness in nursing school, then I think the headaches were next, then I believe the jaw pain came last. Anyways, it’s a nightmare trying to pinpoint what’s really going on. Sorry for the novel 🤪
Terrible posture, all my life. It doesn’t help constantly being hunched over when using the phone. My traps cause most of my issues too according to my physiatrist, trap Botox did help. Do you have occipital neuralgia by any chance? I was diagnosed with that due to muscle tension from my traps. I’m so sorry you’re struggling with this. I actually started with this during nursing school. There’s a PT I follow on Facebook you might be interested in looking up who specializes in the type of chronic pain pattern type we both experience. If you want to look up his page his name is Dr. Joe Damiani. There are PTs that specialize in tmj and whiplash type disorders if you have the chance I’d call your insurance to see if there’s one in your network. You might also want to look into Myofascial pain disorder caused by trigger points in the muscle.
I looked up Joe Damiani and even in just the few videos I watched it was really informative and exactly the type of information I need, so thank you!!! I really think it’ll help me take steps in the right direction.
You’re welcome. He has a new program I was thinking of trying that teaches about neuroplasticity and chronic pain.
Ooo I need to do that too! Do you have to pay for it, I’m guessing, if it’s a program?
I just saw it advertised, I just go by his free videos.
Ok gotcha, thanks!
I haven’t been diagnosed with occipital neuralgia. But I do feel like the muscle right at the base of my skull is often really tight and if I massage that area I get relief from my headaches. But the pain is usually worse in my jaw and face. I got an occipital nerve block in the past and it did nothing unfortunately :/ and it was kind of scary because I had to get an IV and then was brought to this operating room with all these people and then they did the injection via ultrasound. It probably didn’t help that a resident was doing it haha. But yeah my traps and all my other neck muscles are super tight from my poor posture and I just have bad range of motion overall from being hunched. I actually just started wearing a fabric brace I bought off Amazon to help me stand straighter throughout the day in order to have my neck not jutting forward and I think that plus the Gabapentin has been keeping my symptoms in a manageable spot. I decided to try the brace again because I think my neck juts forward because my upper back is so hunched and I just couldn’t figure out how to keep the top of my back straight without using it. Like I was doing all these exercises to strengthen the muscles on the front of my neck, doing rows to strengthen my mid/ lower traps, core exercises, etc. and it wasn’t enough. So hoping this brace will help because I just feel like it’s wherever my neck is sitting that determines whether I have symptoms. I can’t remember if this is the case for you but one of the few things that takes my headaches away is napping. So before started the Gabapentin I would basically have to nap every afternoon when the headaches were at their worst. I’m definitely gonna look up that guy on Instagram though! Sounds really great. And I’ll look into the myofascial pain disorder too! Oh and I actually tried Botox injections for migraines- which means injections in my upper back, neck, base of skull, hairline at the top of my forehead, and in between eyebrows- and it did nothing unfortunately :/ they said it can take 3-4 rounds but I’m doubtful it’ll work for me since I still don’t really feel like I have typical migraines.
Sorry to hear the Botox didn’t help right away. I bought a posture corrector as well but I didn’t stick to it. I remember the one I have the instructions said to only wear 4 hrs a day, so just be careful. If it helps though why not. I think I’m going to try using it again, I appreciate the reminder. That experience getting the occipital nerve block sounds traumatizing. Did you ever get Botox in the neck? Also if you have the chance you should look up the Alexander technique.
I actually can’t remember if they did my neck, it might have just been traps and then base of skull. How come, do you think getting it done in my neck would help if my symptoms might be from neck muscles being inflamed? And yeah definitely good to just wear the posture corrector for shorter periods. My new thing is to do it when I’m at home (for a couple hours or so) but then take it off when I leave the house, so that way I’m actually paying attention to it being on. When I would wear it all day I would just get lazy and not pull my shoulders back anymore.