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Temporal Arteritis- Linked With Eds- Anyone Else Get This?


persephone
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I had never heard of this til today but apparently it is linked with connective tissue disorders like EDS, since it's a form of vasculitis. Anyone got any experience or thoughts on this?

I've been getting a headache for 6 days now. It comes and goes- but when it comes it's right on my left temple, over my left eye, down into my jaw and my neck. It hruts more when I eat anything or even just drink water. My neck and shoulders are aching too. Over the last week I've had joint stiffness (severe), sweating (I am usually cold) and I've noticed that the pain gets worse in my head if my pulse beats harder- it's like a man is in there with a peumatic drill!

Any thoughts appreciated. Can you imagine the fun of trying to write up a thesis like this? I can't even leave my room today. Though I have managed to have a shower and get dressed. It only took 4 hours! :huh:

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What about if your BP is higher, like after exertion, or when the blood flow increases, like lying flat? I would think the artery would complain more if arterial pressure increases (if yours does sufficiently, which I know doesn't always happen with POTS).

If it is worse chewing, maybe a TMJ evaluation is in order, as that kind of chewing pain can be excruciating.

I hope you get relief soon.

OLL

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I get bad headaches that sound like that. Maybe it's different, but the muscles in my neck and shoulders go into spasm, they pinch nerves and give me awful headaches-- where I don't want anything touching my head and don't want to move.

I still get them, but two things have helped. One is massaging the muscles in your upper traps--esp right where your neck and shoulder meet. I also sleep with a soft neck brace that stops my head from lolling to the side and pinching the nerves. Sometimes I drape an icepack on my neck.

But maybe what you have is different? I know edsers often get bad muscle spasms that cause otehr problems, as the muscles try to stabilize joints counterproductively.

and sometimes I have to take a painkiller.

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You just described my headaches exactly. And sometimes my hair hurts so bad i can't brush my hair. I always wondered if it could be temporal arteritis.

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Persephone (and others with similar symptoms),

if your headache originates from the temple and is associated with a tender scalp (+/- jaw pain on chewing) then temporaral arteritis / giant cell arteritis has to be one of the diagnoses considered. It is more common in individuals over 50yrs but not exclusive. Ask your doctor to check your ESR (erythrocyte sedimentation rate) if it is less than 40mm/hr then it pretty much excludes arteritis as the cause of the headache.

Don't worry if it does turn out to be arteritis as it is fairly simple to treat with steroids.

Flop

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My scalp hurts too with my headaches... I thought it was a weird migraine thing for me.

My sed rate is normal (just had it done last week) :) ... although my cholesterol was WAY abnormal :) and I'm now on simvistatin b/c unlike previously, my LDL was too high and my HDL was too low (prior tests had my HDL very high and LDL low, which was great).

Nina

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My sed rate is always high last test 111 and no one has explained it..so maybe this will explain my headaches and that sed rate.

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