Hello! I just found this group today and want to introduce myself. I am here on behalf of my husband. We are older and both retired. About eight years he wanted to get a snack from the refrigerator. He opened the door and jumped back in terrible pain, bringing his hands to his face. He said he just got a massive shock from the refrigerator. Naturally after that I, too, was afraid to touch the refrigerator, but did and never got shocked. He had had an attack of Bell's Palsy about 20 years ago when we lived in a cold climate, and was hoping he wouldn't ever get that again. Not sure if that has anything to do with anything.

A few years ago he told me he was getting 'shocked' on the right side of his face and could hardly stand it. I could see it was starting to work on him and bring him down. He said he was almost afraid to move. I did plenty of research and figured it could only be that thing called "trigeminal neuralgia." This was when we thought about the refrigerator and realized it wasn't that, it was this.

Took him to the doctor. Since I am better at describing things, I told her the story, that I had done the research and believed it to be TN. She was a real witch and seemed quite angry at me for "making a diagnosis when I'm not a doctor." Whoa! I guess we aren't allowed to try to find out things for ourselves anymore! She all but ignored me, and asked him a bunch of questions to which he answered yes or no. I had also read up on carbamazepine but didn't dare ask anything. She gave him a prescription for it - 300mg.

A few months later we went back and he asked to try the oxcarbamazepine. He did, and he hated the way it made him feel. So it was back to the doctor, and back to the 300mg carbamazepine. That did seem to control it. There was no way my husband wanted to go through any kind of surgery, especially if it had the word "knife" in it.

My husband really wasn't the same on the 300mg. I could barely hold a conversation with him. I'd ask him something and he would just sit there with a blank look. Inwardly, I was worried that he was getting something else utterly horrible and made him go back to the doctor. I hated the thought of explaining to her what was going on but forced myself to. Without much explanation she reduced it too 100mg which he is still on. Thankfully he is back to his coherent self and has his energy back. He hasn't has an attack for over a year.

During this adventure I've learned a few things. Number one is not to deal with nasty doctors -- they only increase the stress and that makes it worse. Doctors need to be trained in how to just be nice to people and not hate the ones who ask questions. Next, TN isn't necessarily caused by dental pain and may not be related. His was not related to ongoing dental work at the time. After going through a bunch of youtube videos I saw one saying to try massaging on the opposite side and showed him how to do that. He thinks that has really helped to hold down an attack.

I'm glad to have found this group and pour my heart out to all of you having to deal with this in any way.

My dr can’t figure out what’s going on and is considering TN following a crown and Zyn usage. I get a prickling aching pain under my jaw especially when I talk and swallow and random burning nerve like pain in lines from my chin down to below my jaw. I just don’t even know what to think or if the placement is odd? Hoping to hear others’ experiences

Botox has been the only thing thats given me any relief. I’ve had 2 rounds, the first was in June and I got maybe 2 weeks of relief then it wore off. I had a 2nd in September and got about 30 days relief and can feel it wearing off and am terrified the pain is returning. Neurologist said to only do it every 90 days and I dread the waiting period until I can do more. For folks who have had success with Botox how long did it take for you to get long lasting relief? Did you have to increase the dosage to get it to last the full 90 days? My Drs approach is to gradually increase and I am at 50 units total and was told could go as high as 90-100 but wants to do it gradually. What have folks topped off at? Or is relief with this always going to be this fleeting?

Neurologist told me not to give up on it after only 1 treatment, and glad I did, but the rebound is horrible after getting relief even for a short time. I am type 2 due to facial trauma, mri confirmed no ‘traditional’ nerve compression, also wondering if I should push for a more substantial dose increase.

I haven’t got a diagnosis yet but it’s gotten very severe and either I’m in severe pain all over my forhead and head like burning nerve pain, or totally numb and it rapidly worsens daily. Seeing a nuero tomorrow. I was sent home from ER on two occasions saying I had to see a specialist they couldn’t help me, not even with the pain. Was a waste of time and so stressful 😣 it’s taken a long time to get neuro appointment and I had to really push for it so hopefully they can help. I wake up to more numbness each day. Also loss of interoception.

Anyone have any personal experience of being on carbamazepine and methotrexate at the same time and feeling like the carbamazepine has lessened the effectiveness of their methotrexate? I take it for inflammatory arthritis and started carbamazepine around 6-7 months ago.

Does anyone take Carbamazapine just at night? Does it help with the dizziness during the day?

Hello,

I am 19 years old and live in Türkiye. In July of this year, I began experiencing a peculiar type of tooth pain. It would shift around—it wasn't localized to a single, specific tooth—and standard painkillers provided absolutely no relief. I consulted my dentist, who identified two rather deep cavities. They performed root canal treatments on these teeth and applied medication, but unfortunately, the pain persisted. It is a truly frightening and helpless situation; words fail to describe it. My teeth throb, and I feel completely powerless. Two weeks ago, a new symptom emerged: I sometimes experience pain in my forehead, and occasionally, I feel a sudden, intense, and unusual pain somewhere on my face that lasts for a few seconds. Interestingly, for about 3–4 weeks following my dental treatment two months ago, the pain seemed to disappear (or at least, that is what I believed). I should note that I do not experience sensations like electric shocks, numbness, or tingling. About eight months ago, I did have some unexplained facial itching—I suspect that may have been nerve-related.

When I last visited my dentist, I was told that I have no active dental issues.

I don’t know what to do. I’m feeling quite unwell; the pain is severe, and I feel as though there is no one who can help me.

Is there anyone who has that kind of experiences?