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Trigeminal neuralgia with Sjogrens disease
Autoimmune Diseases | Last Active: Dec 20, 2024 | Replies (11)Comment receiving replies
I’m so sorry for your loss and that your poor grandma had to suffer for so long before anyone would actually pay attention and help her. Our healthcare system needs so much work/improvement. So yes, my mom has tried I think oxcarbazepine and/or possibly carbamazepine. My mom is a tiny lady who is vegetarian and doesn’t eat much very much anyways, but it’s the same with her….horrible pain when she tries to eat, drink water, brush her teeth, etc. She just had the flu and I think that the virus increased her inflammation causing the trigeminal neuralgia to flare up. I just spoke with her last night and she said it had improved and she’s recovering from the flu. So it seems like it’s improving now that the virus is maybe getting out of her system. However, she does need to find a solution to this problem because she also has Sjogrens Dz which I’m sure doesn’t help things. She also had Hep C that she contracted from a blood transfusion in the 80s so she has a lot of neuropathy from that. She’s very stubborn when it comes to caring for herself, unfortunately, and I live in CO and she lives in TN which limits my ability to do anything to help her. I’m an RN, but all I can do is advise her and then it’s up to her to follow through. It’s very frustrating. This disease is so strange. It just popped up out of nowhere around 6-7 years ago. Just like with your poor grandma, it took a while for them to figure out what was going on and then still she hasn’t gotten the best care/treatment for it. No one has even talked to her about exercises that might help. I’ll share that with her and what you said about alternating hot and cold on the face. Thank you so much for your response!
Replies to "I’m so sorry for your loss and that your poor grandma had to suffer for so..."
Thank you I appreciate it and I too am sorry your poor mom and you are going through heath issues as well. When they get elderly they go through so much and stubborness comes with the package unfortunately.My grandma fell taking out the trash cans to the curb she hit the side of her head and we believe that was the trigger for it. Ct scans came back negative but it seems to have affected the nerves in the face going up to the side of the head, as she always complained about that. I had to bring her to live with me so I can provide full time care and get her to eat she weighed about 130 lbs. Elderly will tell you they have spoken to the physician about everything when in reality they didn't fill them in, which is why I had to make sure I went in and talked to the doctor myself. Unfortunately that isn't the case for many people being on their own, so doctors don't always know the entire picture of what is going on with the patient. My grandma also had high BP and I noticed when it would get close to 180 it would trigger the trigeminal neuralgia pain, even though she was on 3 BP meds, her BP wasn't always controlled as doctors tried everything, and she had been living with only 1 kidney due to having kidney cancer in her mid 50's.A suggestion for you,perhaps ask your mother if you can help her out and share her health information on the doctors patient portal and from there maybe you can send messages to her doctor and talk about the issues going on with your mother.
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Oh and I mentioned her being tiny because she can’t tolerate medications like most people. Every time she has taken the medication prescribed for this pain she says it makes her too dizzy. Like I told someone else on here, I have suggested to her that she ask her doctor to send in a “special” dose of that medication to a compounding pharmacy where she can take maybe a quarter of the lowest standard dose and see if that helps without the severe side effects, but idk that she will. I just can’t do it for her because she is of sound mind. Lol. Very frustrating.