Trigeminal neuralgia with Sjogrens disease

I have some autoimmune disorders but it appears that my trigeminal neuralgia is coming from my neck (cervical spine). Has she had any imaging?

People seem to use anti-convulsants (Tegretol aka carbamazepine), gabapentin, and atypical antidepressants.

I seem to be unable to take most meds and clonazepam helps me some.

I get it and am sorry for her pain!

As a Sjogren's sufferer who doesn't have trigemnimal pain but who does take pregambin for spinal arthritis' I would caution her to start at the lowest dose possible and taper up to see how she reacts. Some people don't need very much of the drug to get some relief as compaired to the side effects, which can make a person not have anything to do with them. Some docs seem to want to rush the patient to start out with a high dose, and this doesn't work for everyone. Use her own judgement on how fast to taper up. Slow is better. I hope she finds relief soon. It must be awful for her. It would probably be a pain specialist who would help and then she can explore the cause. Best Wishes.

My grandmother developed trigeminal neuralgia in her early 90's after being misdiagnosed for so long.She was prescribed carbamazepine and sometimes would feel dizzy too but it was the only medication that worked. She took it with soft foods because the pain was unbearable especially to eat. She would also use warm wet washcloths to calm the pain, sometimes it would be an ice pack depending on how she felt. The therapist recommended facial exercises such as chewing gum, and trying to move the jaw back and forth so heat would work. She suffered a great deal and also had moderate dementia, she passed a year ago at age 99. Hope this helps.

I’m so sorry you too experience this pain. I have chronic active sarcoidosis that plagues just about every aspect of my life. These diseases/conditions are just awful and others do not understand the absolute struggle that we go through. I too have chronic debilitating pain, but I wouldn’t dare compare it to the pain of trigeminal neuralgia. I’ve seen what my mom goes through and it’s awful. She has tried oxcarbazepine and maybe carbamazepine, but she says the dizziness is just too severe to tolerate. I keep telling her to ask her doctor to use a compounding pharmacy and ask for a “special” dose, a reduced dose for her to try, but I’m not sure she has. I’m thinking that if she could possibly try maybe even a quarter of the lowest standard dose, maybe it would help and not have such severe side effects. I’m so sorry you have to live with this too. I’ll say a prayer for you.

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!

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.

Thank you so much. I’m sorry you have Sjogrens. That’s not a fun disease to have either. I have chronic active sarcoidosis and it’s a nightmare. I 100% agree! I’m trying to get her to talk to her doctor about prescribing a dose of either carbamazepine or oxcarbazepine that is maybe a quarter of the lowest possible available dose and see how that goes, but it’s up to her to ask them and idk that she will. She can be very stubborn when it comes to her own healthcare. I don’t understand why parents become so difficult about their own care as they get older. They teach us to care for ourselves and not ignore things and then they do exactly that! It’s so frustrating! I wish you well too and thank you for your input.

In regard to the neck/cervical spinal problems, my mom did have a pretty serious cervical spinal injury several years ago, but I think this may have started before then…not sure. I’ll have to ask her. She had Hep C from a blood transfusion in the 80s and was diagnosed with Sjogrens several years ago as well. She also has osteoporosis so who knows! She has a lot of chronic pain everywhere anyways, but this is unimaginable pain. She did say when she tried the medication (either the carbamazepine or oxcarbazepine) that it did help, but she was too dizzy to function. She’s 74 and still won’t retire because she afford to do so, but she REALLY needs to.

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.