Trigeminal Neuralgia Support Group
Trigeminal neuralgia, or Tic Douloureux, is a neuropathic disorder of the trigeminal nerve that causes episodes of intense pain in the eyes, lips, nose, scalp, forehead, and jaw. Trigeminal neuralgia is considered by many to be among the most painful of conditions.
Hi all!
I was diagnosed with a macroadenoma on my pituitary gland, which wrapped around my carotid artery and was pushing on my optic chiasm. I was getting awful headaches, and had surgery within a couple days of diagnosis. This was 7.5 months ago. I also was diagnosed with Acromegaly. The bones of my face have grown because of the Acro, and I have been having pain from what I thought was bone growth. But it's been months, and every day this pain gets worse. It's in my cheekbones, jaw, etc and causes severe headaches that are like migraines. I tend to collapse from this pain and has now progressed into hours of pain, and now everyday I'm getting it. We all just thought hey - it's my TMJ! and yet today, I found out about this from a naturopath while getting cranial sacral therapy (and my friend mentioned it too who has Acro)... Apparently, tumors can cause this? I had to go into the ER over the weekend because the pain was so bad (in my teeth too and behind my eyes). It seems triggered by stress, talking, etc. I am in so much pain from this lately, that the other pain I've had daily just shrinks in comparison. And my pain meds for that stuff doesn't seem to even touch this pain.
Since you all have this group, I'd love to get some feedback on if you all think this might be TN. Anyone in Seattle with this? I'm not sure what to do, where to go, but gosh this is just awful and I can't imagine it's just TMJ when it's so much more of my face.
Thanks in advance for any help!
Best,
Lauren
I was diagnosed with a macroadenoma on my pituitary gland, which wrapped around my carotid artery and was pushing on my optic chiasm. I was getting awful headaches, and had surgery within a couple days of diagnosis. This was 7.5 months ago. I also was diagnosed with Acromegaly. The bones of my face have grown because of the Acro, and I have been having pain from what I thought was bone growth. But it's been months, and every day this pain gets worse. It's in my cheekbones, jaw, etc and causes severe headaches that are like migraines. I tend to collapse from this pain and has now progressed into hours of pain, and now everyday I'm getting it. We all just thought hey - it's my TMJ! and yet today, I found out about this from a naturopath while getting cranial sacral therapy (and my friend mentioned it too who has Acro)... Apparently, tumors can cause this? I had to go into the ER over the weekend because the pain was so bad (in my teeth too and behind my eyes). It seems triggered by stress, talking, etc. I am in so much pain from this lately, that the other pain I've had daily just shrinks in comparison. And my pain meds for that stuff doesn't seem to even touch this pain.
Since you all have this group, I'd love to get some feedback on if you all think this might be TN. Anyone in Seattle with this? I'm not sure what to do, where to go, but gosh this is just awful and I can't imagine it's just TMJ when it's so much more of my face.
Thanks in advance for any help!
Best,
Lauren
I would consult a neurologist. I can tell you that with my case of TN pain killers have little to no affect to relieve the pain. Tegretol and Baclofen works for me. It's an anti-seizure medicine that tells your brain not to feel pain. The symptoms your describing does sound like TN because you have triggers and it is very painful.
I hope you find the answers and please keep in touch. The support group here has helped me for years.
Good luck and pain free days :)
Karen