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Intro Trigeminal Neuralgia & Sialadenitis

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Old 03-07-2018, 05:14 PM   #1
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Default Intro Trigeminal Neuralgia & Sialadenitis

I am new to this forum. I am 60 something, but not retirement age. I am a 7 year survivor of papillary thyroid cancer. My cancer treatment led to hypoparathyroidism 3 years ago, which lasted only for 1 year. When my hypoparathyroidism went into remission spontaneously, I continued on my high dosage of calcium and calcitriol oblivious to the fact that my parathyroid gland had started functioning again. This led to acute renal failure and stage 1 kidney disease, which is not in remission. I also experienced loss of taste for salt immediately following my radioactive iodine (RAI) treatment that lasted 3-4 months. I had a numb chin for a short time which is also a symptom of hypoparathyroidism. My tastebuds came back for salt, but the RAI had left me with damaged parotid salivary glands. In 2012 I had bilateral sialendoscopy with stents to open up the glands. In 2017 about 9 months ago, I started being diagnosed with salivary gland infections based on what I now believe was trigeminal neuralgia. Nevertheless, an MRI did show that my parotid glands had atrophied resulting in me trying a 2nd sialendoscopy with stent on the right side only. After the procedure the pain got to be much worse, and they believed that I had another salivary gland infection. They pulled out the antibiotics for about the 7th time in 9 months, and they did not help. In fact I continued to get worse. By this time I had 3 different specialists pointing to my neurologist saying work her up. As soon as he heard "trigeminal nerve" he made an opening for me so I did not have to wait. I was diagnosed with trigeminal neuralgia and started carbamazepine, which was like face crack for me. Unfortunately I developed an allergic reaction in my 3rd week of treatment, itching on my face but also in many other places. I was weaned off of that and onto amitriptyline. It seems to work during the day but to stop working the minute I try to go to sleep. I have the pain mostly on my right side, but at night it likes to visit both sides. My neurologist wanted to find out if my ENT could make any more progress with my Sialadenitis, but he told me that it was only going to get worse with time and that repeating the sialendoscopies was not going to be productive anymore. I did try a medication that makes you produce more spit, and it was extremely effective. However, the spit could not get out of the gland very easily on the right side and this made the facial pain much much worse. Nevertheless I asked the ENT again and his response was that if there was anything he could do, he could not do it until the TN was under control. (Do you every feel like a ping pong ball?) I do not get electric shock pains, and my facial pain is mostly unilateral but sometimes bilateral. Some activities make the pain get worse very quickly. When I smile, talk, chew, or laugh to name a few. I actually started to limit how much that I spoke, which did not go over very well at work. So I asked for accommodations and was met with a request that I take FMLA. My health care team told me that it would be therapeutic to continue working. I was lucky to be able to find another job doing the same thing that I do now so I jumped on it and start next week. The new employer is willing to give me accommodations. My DH was very sweet and explained to our church that it hurts to talk, and everyone at church was supportive when I remained silent and declined to talk. I have tried gabapentin in the past and due to side effects my neurologist does not want to try it again. I do not take anti-inflammatories because of the stage 1 kidney disease. I can take a few now and then but not on a regular basis. The MRI of the salivary glands does show an inflammatory process going on, which I cannot treat. I am negative for rheumatological conditions. I have only gotten a 2nd opinion on the TN from my PCP. I am reading Striking Back. From what I have read I am atypical, probably because of the salivary condition. I asked my ENT how would I know if I have a real salivary infection? He said to look for fever and redness. Interesting since I had none of these when they continued to dose me with antibiotics.
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Old 09-20-2018, 04:54 AM   #2
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There is a Facebook group that has a lot more action than this one in case you don't get enough info here. I recommend both, especially if you are complex like me.
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