5 days ago, sharp and stabbing pains on left side of head/face, ear was very sore, hurt with wind, when talking, swallowing. Went to doctor and he said Trigeminal Neuralgia and gave me carbamazepine. Now, problem is a little better, but pain is behind ear and down left side of neck. Very consistent, very painful to the touch. Carbamazepine and pain medicine don't help. Is there something else?
Hi this may or may not be helpful to you. I have experienced similar pain off and on for the past 12 years. No doctor has ever seemed to diagnose it right. I stumbled upon the coincidence of having what I feel was a minor scratch on my gums in the back of my mouth and possibly a slight infection. I decided to take some left over antibiotic (I know not recommended) because my daughter had some which wasn't finished because she switched medication, and low and behold all of my sypmtoms, ear pain, jaw pain, scalp pain, and neck pain all cleared up. I'm not sure if this is the reason or the cure, but I welcomed the relief. Good luck.
My story is a long one, I will try not to ramble on and apologize in advance if I do. Its a very emotional one for me to tell. Well...here it goes. About 11 years ago, I had a bone graft for the possibility of having implants for my first and second molars. Despite following the dentists instructions, it became infected. The dentist packed the wound with gauze and meds and I visited him daily to have the dressing changed. After a few days, I began having pain in my left ear, similar to an ear ache. We all assumed it was from the swelling and infection. After the infection had cleared up, I decided to abandon the implant idea, at least for the time being, but I was still having ear pain. Just here and there, nothing that was intolerable, but the dentist thought it would be fine to proceed with a root canal on my third molar, on the same lower left side. As he injected the numbing meds for the root canal, I felt a pain shoot through my ear. I can only describe the pain as a stabbing, electric shock feeling. It hurt so bad that I jumped almost right off the chair. It was one of those pains that brings instant tears to your eyes. Despite my jump, the assistant braced my arm and the dentist continued to inject me over and over again in the same area. I was very hesitant to move because he still had the needle in my mouth. When he was finished I asked, "What was that?!?" The assistant looked a little nervous, probably because I have reacted that way to any procedure before, and said "Oh...he must have hit a nerve." They didn't seem concerned, so I wasn't concerned. My dentist, the assistants and I had a very good natured relationship. He worked on my entire family for years, and I trusted him/them. I should have been VERY concerned. That night, I woke up in the middle of the night with the weirdest wormy feeling over the whole left side of my head. No joke...it literally felt like worms were squirming around inside my head. I tried to explain the feeling to my husband and he just looked at me like I was exaggerating the whole thing. The wormy feeling only happened that night. The days and weeks following became a nightmare, which I will explain shortly. At my next dentist appointment, I told him what had happened. I had NO intention of letting him laying a hand on me. I just wanted to see what he had to say. He suggested that I see a neurologist. As the days and weeks went by, I began having stabbing, shooting pain throughout the left side of my head, face, ear and neck. It got so bad that if the wind blew, it felt like someone was taking a bat to my head. I woke up every morning feeling like someone was smacking me upside the head all night long. My face and ear became bright red and would burn and feel warm to the touch, every morning and sometimes for no reason at all.I would hearing clicking, high pitch buzzing and my ear would twitch. Every once in a while I would get that wormy feeling, but only for an instant. SOOOO WIERD!!! At the time, my two children were young and it was very difficult for me to be the mom I knew I was. I was a great mom who did it all, and this affected my life in EVERY way. To top it off, I saw 23 different doctors over a 3 year period and none of them believed me. They all thought I was trying to get pain meds. I know my body and I know when the pain started and when it became unbearable. I also know that it had something to do with either the infection, the injection, or both. I actually had one doctor tell me that the dentist could have injected the needle so far that it could have hit the base of my skull, and there's no way to prove it. I finally was able to make an appointment with a very well known neurologist who began treating me for Trigeminal Neuralgia. He tried many different meds and combinations of meds, but nothing helped. Sometimes I think that even he didn't believe me. Finally after 2 years, he decided to do a craniotomy and decompression of the nerves. Imagine his surprise when he found a knuckle size mass of nerves pressing against my brain stem. WOW!!! I wasn't crazy!!! I wish I could have been a fly on the wall to see his reaction. (Actually, that would be really gross considering he was opening up my brain.) He said that he never saw anything like it and o prevent it from happening again, he reconstructed my ear. All these years later, I am still dealing with chronic head, face, ear and neck pain. Sure, its not as bad as it was before the surgery, but I do have some REALLY bad days. I know it sound strange, but the weather seems to have a major affect on my pain. If it storms or snows...I'm not having a good day. I do see a pain management doctor once a month and I am doing better. Of course, with pain management comes pain meds, which slow you down, make you tired and, in my case, cause weight gain. I'm in the process right now of trying to get approved for the Spinal Cord Stimulator, for the second time. It is considered experimental for my case. No one knows what this pain is like and how it affects your life until you live with it. I often think back and can't help but wonder if that "wormy" feeling I had was my nerves actually moving around in my head. Is that even possible?
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