randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
the very top of head, I believe some would call it the crown. is now so sore I can barely touch it. my jaws are very painful.
base of skull hurts and on right side of neck.
am still extremely concerned about temporal arteritis even tho dr says neck issues and tension and migraines.
brain mri is very normal.
it's the pain which is off the charts.
I am getting no sleep even tho the dr gave me .5 ativan.
I'd like to have this resolved before leaving. I can't afford another visit.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Randi, ask the doctor to give you an order for a temporal sonogram so that you can have peace of mind.
This is how they diagnose temporal arteritis.
My doc was afraid I had it, so he sent me to a neurologist who ordered a temporal sonogram. The sonogram of the temporal arteries will show if they are enlarged.
My primary also ordered bloodwork to look for inflammation that will exist if you have temporal arteritis.
In my case, I had unbearable pain in my right temple and above my right ear. The scalp hurt, and even to touch the hair above the right ear hurt. To touch the temple area made me scream. I had horrendous headaches. The top of the head also hurt. I was surviving on narcotic pain pills.
My ultimate diagnosis was an inflamed temporalis muscle. I went to a special dentist who gave me injections into the temporalis muscle. They do this by injecting into your mouth at the base of that muscle. The muscle terminates at the back of your mouth above the top teeth. I needed a series of 3 injections and that was it.
The dentist injects sarapin.
It was difficult finding a dentist who did these and even knew about this problem. Generally, it is a TMJ dentist who understands this problem and treats it.
Yes, that side of the neck will also hurt. And, the pain is really unbearable. When it got bad, my entire top and front of my head hurt down through my lower teeth. Both sides of the head would hurt and both jaws.
The temporalis muscle is large and the pain can radiate a good distance.
Here is a website that talks about this condition.
I called that office (in Ohio) and he gave me the name of a dentist in my area who did the injections. But, I then found out that TMJ specialists generally know about this and do the injections also.
I understand your concern about temporal arteritis, but the technician who did my sonogram on my temporal arteries told me that she has NEVER had a case of it. That is how rare it is.
I am sure that if there was ANY chance that you had this serious condition, your doctor would have had you checked out for it. So, I think you can stop worrying about that diagnosis. If you can't stop worrying, the sonogram is the proof.
If he did bloodwork looking for inflammation markers, then check your inflammation markers. They would be extremely high with temporal arteritis. Mine were normal.
My brain MRI was totally normal and so was all my bloodwork. I went to 2 neurologists and they tried many, many things for migraine headache, etc.
I suffered with the inflamed temporalis muscle for months. I blame a dental device that I was wearing to keep from grinding my teeth at night for causing the inflammation of that muscle.
If you have lyme, that is a cause of inflammation right there.
The injections work very, very well. But, you will have to first go through an MRI of your TMJs and other expensive xrays before the dentist will conclude that all you need is the injections into the muscle.
They first have to rule out TMJ issues.
Neither dentist that did this procedure took insurance, and insurance generally did not pay much for the procedures, but it paid for the MRI of the TMJs.
Posts: 9931 | From Maryland | Registered: Dec 2007
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
thank you so much. my gp did not do bloodwork.
my head pain is almost to the point of screaming. not so at temples but around ears and jaws. bending over hurts as does lying down. even combing my hair hurts.
I'm making another appt tomorrow and going to ask for bloodwork. I do have a nightguard to wear.
I've tried vicodin.norco. excedrin. you name it. nothing touches it.
the dr said it's highly unlikely but my symptoms say otherwise.
but, yeah, I tend to worry...alot. part of depression I think.
the dr knows my personal situation and remarks that he doesn't know how I do this. hmmm this pain started after we took a trip to new mexico.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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posted
"The temporalis muscle is large and the pain can radiate a good distance."
Very possible.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
I've got a superior dentist I just love. would it help to make appt with him?
my dr also mentioned occipital neuralgia.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Oh, oh. Now it sounds more like TMJ. Did it happen to come on after opening the mouth wide, like to eat a big sandwich? or something that required a lot of hefty chewing? even potato chips?
Don't know anything about occipital neuralgia.
But, if you don't have pain when you touch your temples, then you definitely do NOT have temporal arteritis (also called giant cell arteritis). This is the major symptom which is why my dentist and pcp were so worried about me. This is why it is also known as temporal arteritis.
The artery at the temple is very close to the surface, so it will REALLY hurt if you have temporal arteritis.
Posts: 9931 | From Maryland | Registered: Dec 2007
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
ah no, I can rub my temple almost vigorously. I mean thump thump push push no pain at temple. but man jaw ear neck and top of head.
I really jerked my neck hard when I fell in the tub but that was three months ago.
I love this place. I learn more from y'all than I do anyplace.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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