Here is a bit of history of my TN story which began over 5 months ago. At first my TN started as a toothache, then facial ache, then shocking, stabbing pains in lower jaw and under the eye and then the 24/7 burning pain in mid face/ear as well as the shocking/stabbing pains. I could not chew, eat hot or cold foods, talk, go outside due to coldness, or lay down from the pressure of the burning pain in my ear. After about 10 days of taking tegretol, the neck and groin lymph glands were very swollen, and I had night sweats, blocked submandibular gland, very weak, extreme fatigue, hair loss as well as ice pick headaches. My blood work showed inflammation and low blood count. The internal medicine specialist said I had a severe viral infection. Now I still have twinges of TN pain/burning and am still very fatigued and weak. I have discovered I have thyroid nodules, I am low in B12, vitamin D and I am now getting anemic. My other symptoms have disappeared but my groin lymph glands remain swollen. I have been referred to internists, endocrinologist and an ENT to sort out my non TN symptoms. My doctor checks my bloodwork every 2 months because of the tegretol. My internist is now wondering if the swollen groin glands are the result of Tegretol. Has anyone had this side effect? He has asked my neurologist to put me on another drug. Any advice would be helpful.
Hi Collette, I have been following your story with interest, only because some of our symptoms were the same. I have very high levels of inflammation in my blood, i was dx with Temporal Artritis but you are too young to have this. Mine is an auto immune problem I wonder if your could be something like that also. Hope they get to the bottom of this before too long. Hang on in there, I know and remember how frustrating it is. Take care Elaine
Hi Elstep -- I do not show high levels of inflammation any more. It went high, normal, high, normal. I think it is an auto immune problem but finding it out is another problem in itself. I find the doctors and specialists take one test for something and rule it out. How long did it take for them to figure out yours? Thanks for sharing -- hugs.
elstep said:
Hi Collette, I have been following your story with interest, only because some of our symptoms were the same. I have very high levels of inflammation in my blood, i was dx with Temporal Artritis but you are too young to have this. Mine is an auto immune problem I wonder if your could be something like that also. Hope they get to the bottom of this before too long. Hang on in there, I know and remember how frustrating it is. Take care Elaine