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TMJ Headaches Ehlers Danlos

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Ok so I have Ehlers Danlos. Besides my hips, shoulders, and toes, one of the most "unstable" joints I have in my body, is, of course, my jaw. I was diagnosed with a high arched palate (is one of the signs of Ehlers Danlos as well as TMJ) and microstomia, or a mouth that is a bit too small (another sign of Ehlers Danlos and can attribute to TMJ). So I guess my question would be how do I get rid of my TMJ headaches? I cannot take many medicines as they interfere with my disease (especially aspirin, I do have the vascular type of Ehlers Danlos)and Tylenol does not cut it for me. I cannot take heavy prescription meds as, even in the smallest of doses, they overwhelm me. I do use a grind guard at night as my jaw cracks as often as my other joints, which are also stabilized at night. The grind guard actually seems to alleviate some of the pain. Is it safe to use my grind guard during the day as well? Are there any exercises that I can do that might relieve the tension in my jaw? Also, to my fellow TMJr's...do you also get the headaches frequently? Does your jaw sometimes get "stuck" in a slightly open "locked" position? Ugh, it's making me miserable lol.
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replied March 19th, 2009
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I did not ask for a dentist gah. I have a perfectly good one. I asked for help on how to deal with TMJ headaches. So ty but no thanks.
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replied June 27th, 2009
I too have EDS and TMJ. I used to work with at physical therapist who treated TMJ. All of her patients loved her and talked about how great the treatment was and how much it helped. My TMJ was just developing at the time so I was never treated by her. Maybe PT could help though. They may be able to offer some exercises to improve stability or some form of treatment to help with the pain.

I have had severe headaches for years but I don't think it's TMJ related. I found a trigger for my headaches to be strawberries and have dramatically cut the number of headaches since I quit eating strawberries.

I use heat on my jaw when it gets really bad. That seems to help with some of the pressure and cuts down on a little bit of the popping but it doesn't last long enough - luckily for me my jaw pain is one of the least of my worries though. My hips and other joints give me more trouble than my jaw. I find that if I stretch my jaw and make it pop (like popping a knuckle eases the strain in the finger joints) that helps sometimes.
I also was put in traction for my neck (I have fused verterbrae in my neck) and that seemed to really help with the headaches and jaw pain. Sometimes I can pop my neck and that will help as much as the traction did.

Those are the only things I know of to do except for pain medication and there you could try something like Ultram that's non-narcotic maybe? Or an anti-inflammatory if you can tolerate them? I would ask your dentist if he has any advice or if he could send you to a TMJ specialist to get some ideas. I'd stick with the same dentist but maybe get a little added help from another dentist/doctor/physical therapist/? whoever the docs/dentists recommend for you.

Hope you get some relief soon. Take care and God Bless you.
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replied June 27th, 2009
Ehlers Danlos
I recently went to physical therapy and she taught me some exercises that help. I also discovered that alot of the headaches are coming from damage in my neck and shoulders due to the instability and arthritis that results. If you are interested I can email copies of the exercises she gave me. I have discovered as I have gotten older that my joint problems are worse if I don't do strengthening exercises (even when it is uncomfortable) Sorry you can't take meds. Hang in there. Brenda
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replied September 3rd, 2010
To gracie18:
I would love to have a copy of your exercises. Especially for jaw, neck, shoulders (and if you have them, lower back). You are right - it does get worse as you get older (at least it has for me)
4Smiles
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