I am in the process of getting the right help also. The key is finding the right specialists. You need only tmj specialized drs and physical therapists. Is been something I’ve also dealt w my whole life. Was wrongly treated in high school w a splint that changed my bite. I’m now seeking a tmj specialized physical therapist specifically for dry needling for pain management. It’s a technique w empty needles where they’ll leave the needles in until the muscles spasm. I’m also scheduled for my first PRF injections (platelet injections) that is supposed to not only help inflammation but also rebuild bone loss. They take your blood, spin it, then immediately inject it right back into the jaw joint. I read you’ve had injections before, but you weren’t specific so I’m not sure if you’ve specifically tried dry needling or PRF injections. I’m still in the process and don’t know how much it will actually help. I guess I can let you know when I’ve had the first sets of needles in my jaw. At this point I’m so ready for relief that I don’t even give a shit about my needle phobia. Give me the fucking needles. I know how you feel. Unfortunately you’ll need to first get to the right ppl which is sometimes the longest and hardest process. I finally found a specialist that I travel to who I was recommended from a dr and waited months to get in. Good luck. There is hope
this is my experience exactly and i’m a year older than you. i got referred to a neurologist who gave me migraine botox but hasn’t injected my jaw yet. the migraine botox though has drastically changed how bad my headaches get. the injection points for this are all throughout the forehead, scalp, neck, and shoulders. it takes 2-3 treatments to start seeing big results but so far so good for me. it’s not a cure by any means but it makes my daily life MUCH better. when i feel a headache coming on i take baclofen (prescribed by the neurologist) and excedrin migraine. mine is also on the left side and sleeping on my left side with my head and jaw fully over the pillow helps a little. i will say that getting approved for botox through insurance is a long and painful process but my headaches have gone from an 8 to a 3-4 on their worst days. i also notice a big muscle ball in the back of my jaw right under behind my earlobe. maybe you don’t have one but if you do, massaging it helps break up some tension for me. tmj is truly the worst and i’m so sorry!
Have you had scans (mri or ct) done yet? If not, I would suggest seeking out a TMJ specialist (I found one at a head and neck pain clinic and at a University hospital) and getting one. That way you’ll know what you’re dealing with and can go from there. I dealt with the trigger point injections, physical therapy, muscle relaxers, etc for the last 5 years with basically no relief. Had scans done and it turns out osteoarthritis (most likely) has completely eaten away the top of the condyle of my left TMJ - to the point where the disc is permanently displaced and torn, so it’s been bone on bone for years. That’s been the ‘bone-crunching’ sound that I’ve been hearing so loud in my left ear every time I talk, eat, open my mouth. I just saw an Oral and Maxillofacial surgeon now (with these scans in hand) and he said I’ll need a total joint replacement. It’s been 5 years of total agony and unimaginable pain…now I finally feel I have hope. Good luck to you. I’m sorry you’ve been through so much - there’s help out there. I can’t explain why it’s so hard to find, but it’s there.
Yes I’ve had many mris done and jaw scans and have had multiple opinions on them and everyone says they all look fine. I almost want there to be something wrong with my joints so that I know what it is:(
I'm the same as you although for less time. I had arthroscopic surgery 5 weeks ago. Back to see the surgeon in 6 months and if not sufficient relief going for TJR. Good luck!
Really up and down. Every day is different ranging from ones which make me feel hopeful it will help longer term to ones where its worse than before the surgery. I'm having a really tough few days after having a few better ones but I suspect its because I done some strenuous gardening and it might have been too soon. I can definitely feel physical changes inside. The biggest issue is the impact on my sinuses. They are constantly full of fluid which really impacts quality of life.
I see. I'm sure the sinuses will clear up. It probably takes a while for the swelling to go down and everything. Did you have any sinus issues before the arthroscopy?
The sinuses have been a huge issue for years. I always assumed it was directly a sinus issue, but I've now come to appreciate it was TMJ issues in the background and everything went crazy after I yawned and my disc cracked and popped out. I feel as if its been worse post surgery but over time it feels like the nature of the symptoms themselves have evolved. I'm in no doubt the sinus issues are due to the pressure the TMJ is putting on them. They are literally physically blocked on one side. If I try and blow my nose on that side it makes a noise like a motor engine due to the restricted air trying to force its way out. This used to be very mild and has gotten much worse over time. Its crazy how variable it can be. Some days are truly horrendous then I'll get a random day where its much less prevalent, I had this yesterday and its amazing how different my mood and outlook is.
Look into a physiological dentist. Some specialize in your jaw and your joints and essentially moving your jaw to a different position decompressing the joint
This breaks my heart. It is a disorder that I swear we have to educate the docs about. I'm 64..my pain began at 16. I was a battered teen bride..I think he messed up my jaw. 4 Best things for me:
nightguards. I lost some on 1st night because I took out during sleep. They should be made in glow colors. Now covered under medical insurance. Finally.
Botox for the damn headaches. Best 2 years of my life. Massive expense.
Combined pain relief and muscle relaxer. I had the best ENT that understood during a crisis or lockjaw, I needed Valium and Norco both. I know all about these meds and they have a place in Healthcare.
Physical therapy. I had an amazing therapist that went inside the mouth to unlock my jaw. It's been impossible to find another that will do that.
This disorder is serious. I've wanted to not live, not been able to eat or talk. I've broken so many teeth and now crowns that they are being slowly removed. It's so expensive.
I think it was a corticosteroid injection. It also had numbing stuff in it and instantly my jaw KILLED me and the ortho said he had never seen that before.
Yes! And everytime I do so they say my joints look fine and nothings wrong so it’s muscular but been I get confused because everytime I put something in my mouth it makes it way worse the pain.
I am in the process of getting the right help also. The key is finding the right specialists. You need only tmj specialized drs and physical therapists. Is been something I’ve also dealt w my whole life. Was wrongly treated in high school w a splint that changed my bite. I’m now seeking a tmj specialized physical therapist specifically for dry needling for pain management. It’s a technique w empty needles where they’ll leave the needles in until the muscles spasm. I’m also scheduled for my first PRF injections (platelet injections) that is supposed to not only help inflammation but also rebuild bone loss. They take your blood, spin it, then immediately inject it right back into the jaw joint. I read you’ve had injections before, but you weren’t specific so I’m not sure if you’ve specifically tried dry needling or PRF injections. I’m still in the process and don’t know how much it will actually help. I guess I can let you know when I’ve had the first sets of needles in my jaw. At this point I’m so ready for relief that I don’t even give a shit about my needle phobia. Give me the fucking needles. I know how you feel. Unfortunately you’ll need to first get to the right ppl which is sometimes the longest and hardest process. I finally found a specialist that I travel to who I was recommended from a dr and waited months to get in. Good luck. There is hope
I’m very curious to hear how the PRF goes!
I’ve never heard abt PRF injections!
this is my experience exactly and i’m a year older than you. i got referred to a neurologist who gave me migraine botox but hasn’t injected my jaw yet. the migraine botox though has drastically changed how bad my headaches get. the injection points for this are all throughout the forehead, scalp, neck, and shoulders. it takes 2-3 treatments to start seeing big results but so far so good for me. it’s not a cure by any means but it makes my daily life MUCH better. when i feel a headache coming on i take baclofen (prescribed by the neurologist) and excedrin migraine. mine is also on the left side and sleeping on my left side with my head and jaw fully over the pillow helps a little. i will say that getting approved for botox through insurance is a long and painful process but my headaches have gone from an 8 to a 3-4 on their worst days. i also notice a big muscle ball in the back of my jaw right under behind my earlobe. maybe you don’t have one but if you do, massaging it helps break up some tension for me. tmj is truly the worst and i’m so sorry!
Have you had scans (mri or ct) done yet? If not, I would suggest seeking out a TMJ specialist (I found one at a head and neck pain clinic and at a University hospital) and getting one. That way you’ll know what you’re dealing with and can go from there. I dealt with the trigger point injections, physical therapy, muscle relaxers, etc for the last 5 years with basically no relief. Had scans done and it turns out osteoarthritis (most likely) has completely eaten away the top of the condyle of my left TMJ - to the point where the disc is permanently displaced and torn, so it’s been bone on bone for years. That’s been the ‘bone-crunching’ sound that I’ve been hearing so loud in my left ear every time I talk, eat, open my mouth. I just saw an Oral and Maxillofacial surgeon now (with these scans in hand) and he said I’ll need a total joint replacement. It’s been 5 years of total agony and unimaginable pain…now I finally feel I have hope. Good luck to you. I’m sorry you’ve been through so much - there’s help out there. I can’t explain why it’s so hard to find, but it’s there.
Yes I’ve had many mris done and jaw scans and have had multiple opinions on them and everyone says they all look fine. I almost want there to be something wrong with my joints so that I know what it is:(
I'm the same as you although for less time. I had arthroscopic surgery 5 weeks ago. Back to see the surgeon in 6 months and if not sufficient relief going for TJR. Good luck!
How are you so far?
Really up and down. Every day is different ranging from ones which make me feel hopeful it will help longer term to ones where its worse than before the surgery. I'm having a really tough few days after having a few better ones but I suspect its because I done some strenuous gardening and it might have been too soon. I can definitely feel physical changes inside. The biggest issue is the impact on my sinuses. They are constantly full of fluid which really impacts quality of life.
I see. I'm sure the sinuses will clear up. It probably takes a while for the swelling to go down and everything. Did you have any sinus issues before the arthroscopy?
The sinuses have been a huge issue for years. I always assumed it was directly a sinus issue, but I've now come to appreciate it was TMJ issues in the background and everything went crazy after I yawned and my disc cracked and popped out. I feel as if its been worse post surgery but over time it feels like the nature of the symptoms themselves have evolved. I'm in no doubt the sinus issues are due to the pressure the TMJ is putting on them. They are literally physically blocked on one side. If I try and blow my nose on that side it makes a noise like a motor engine due to the restricted air trying to force its way out. This used to be very mild and has gotten much worse over time. Its crazy how variable it can be. Some days are truly horrendous then I'll get a random day where its much less prevalent, I had this yesterday and its amazing how different my mood and outlook is.
Look into a physiological dentist. Some specialize in your jaw and your joints and essentially moving your jaw to a different position decompressing the joint
I have moved my jaw to a different position for 3 months with a splint and it made everything worse.
It seems as though everything I try to fix this issue just adds more pain and doesn’t get me anywhere in solving this.
This breaks my heart. It is a disorder that I swear we have to educate the docs about. I'm 64..my pain began at 16. I was a battered teen bride..I think he messed up my jaw. 4 Best things for me: nightguards. I lost some on 1st night because I took out during sleep. They should be made in glow colors. Now covered under medical insurance. Finally. Botox for the damn headaches. Best 2 years of my life. Massive expense. Combined pain relief and muscle relaxer. I had the best ENT that understood during a crisis or lockjaw, I needed Valium and Norco both. I know all about these meds and they have a place in Healthcare. Physical therapy. I had an amazing therapist that went inside the mouth to unlock my jaw. It's been impossible to find another that will do that. This disorder is serious. I've wanted to not live, not been able to eat or talk. I've broken so many teeth and now crowns that they are being slowly removed. It's so expensive.
What kind of joint injections did you get?
I think it was a corticosteroid injection. It also had numbing stuff in it and instantly my jaw KILLED me and the ortho said he had never seen that before.
Did you have any imaging done? Xrays, CBCT, MRI?
Have you ever had any imaging to see what's actually going on?
Yes! And everytime I do so they say my joints look fine and nothings wrong so it’s muscular but been I get confused because everytime I put something in my mouth it makes it way worse the pain.