I'm so glad I found this medical website. I hope this note isn't too long.
I was dx'd with trigeminal neuralgia in 2000 and, because I have it on both sides, the pain mgmy doctor I see calls it 'atypical neuralgia'. I am treated with oxycodone, hydrocodone, valium and Baclofen to control this insidious disease. [I got TN from two botched novocaine injections at the dentist many years ago.]
For more years than I've been dx'd with TN, I've been getting an occasional (3-4 x month) but very piercing, throbbing, burning pain in my left temple which sometimes makes my left eye close on its own. It can last for a few minutes to hours to a whole day. This pain is completely different from the facial pain I have with TN. I also have a lump in my left neck which pulsates when the left temporal pain occurs. This lump has been there for over 15 years, but my PCP says it's nothing to worry about. Well, I'm worried, and I'm worried because of how it reacts when I get the pain in my left temple. Sometimes this lump burns. My PCP is very, very conservative and feels that I shouldn't worry about either the pain in my temple or the lump - because, he says, I have enough to worry about with the TN. OH ... I also have scleroderma with several 'sister syndromes', and I've been put on prednisone for polymyositis off and on over the last 12 years. My PCP says that all the meds I've been on (mainly the prednisone) and am currently on should help with the pain in my temple. He also suggested that I take OTC ibuprofen, which I do at times.
Could anyone, maybe one of the doctors, give me advice on all of this? I've asked my pain mgmt doctor about this, but he defers to my PCP. Should I see a neurologist and what kind of tests are done to check for temporal arteritis. I know that "itis" means inflammation so the ibuprofen probably helps that a bit. I've had a lip biopsy for Sjogrens and a muscle biopsy for polymyositis. I'm not looking forward to having an artery biopsy if that is what has to be done, but I'll do it if I have to.
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