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Trigeminal, but not Trigeminal Neuralgia. What is it? HELP
I came down with a virus mid December that would not go away. 5 rounds of antibiotics later and a CT-scan, I got into a ENT. He told me that my sinuses looked great and I had no sinus problems, but that it was my trigeminal nerve. I had sinus pressure behind the eyes, pain, mucus, and I felt like my eyeballs were being pushed out of my head. ENT referred me back to my PCP and said for her to put me on Carbamazepine. The carbamazepine worked on 50% of my issue. Then a MRI and an appointment with my neurologist. She said it was just migraines and nothing to do with my trigeminal. She put me on nortriptyline and said to start weening off the carbamazepine after 30 days. While I was on both, all was great. I felt like I had my life back. A week after I hade weened off of the carbamazepine all the sinus symptoms came back. So I called and she put me back on the carbamazepine. It has been a month since I have been back taking both. I started to feel better and then, AGAIN, I am having sinus pressure behind my eyes, pain, mucus, and bad headaches day and night. Every time it feels like the flu, but the flu goes away.
Has anyone been diagnosed with anything like this and told it is an overactive trigeminal nerve?
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Over the last 15 yrs. I experienced pain in my teeth on upper left side of my face. The dentist called it my phantom tooth pain and she couldn't explain it. I had a tooth removed and an implant, but the pain didn't go away. at times the pain felt like an electrical shock, at other times sinus pressure or throbbing. It would come and go, sometimes lasting a few hours, days or weeks. I was sent to 2 endodontists, but my teeth were fine. One recommended I see an ENT. She said my sinuses were impeccable and suspected Trigeminal Neuralgia. I was started on 100 mg of gabapentin 2x daily and it didn't help. I was then put on 300 mg of oxi- carbamazepine but it made me dizzy and nauseated. My primary doctor started me on 100 mg of pregabalin 2x daily and sent me to a neurologist. MRI with and without contrast of the brain did not show any problems. The doctor told me that oxi- carbmazepine is the suggested drug and that I was started on too high of a dose. He told me to stop the pregabalin to see how I do. I stopped it and experienced a severe headache for as long as I was off the drug. Once I started back my headache went away. Has anyone else experienced, severe headaches? I also have sinus pressure and there are times when my nose will just run and not stop. Unfortunately, doctors don't know much about TN or what to do about it. There are very few neurologists that specialize in TN. Thank you all for sharing your stories.
As an aside the trigeminal nerve can be aggravated by CPAP straps and poor fitting eye glasses or anything that puts pressure on the trigeminal nerve around your ear.
There is a Mayo Clinic doctor at the Jacksonville, FL location who writes he is "interested" in hemicrania continua. That doctor is Dr. T. Rozen. I've never seen him. Do you know the Latin expression sin qua non? That means "without which, not." So, the confirmation for hemicrania continua (HC) is if your headaches are helped by indomethacin, that means you have HC. And if I apply the sin qua non correctly: without help by indomethacin, then you do not have HC. Writing here because I also heard "oh, it is just migraines"--that anyone would dismiss migraines with "just migraines" is uncaring/unknowing. Migraines hurt. HC hurts a lot and is continuous. Many doctors do not yet know about it. Read up on it so you can help yourself. I've had headaches for decades, *maybe* both migraines and HC--how to separate types of head pains? Indomethacin has helped me. As with most drugs there are side effects. Start reading and help yourself and your doctors. I showed up to a neurologist appointment with a printout of a medical paper I found on the internet. For HC, look for Dr. S. Prakash in India. I found his paper, perhaps 4 years ago, it matched my symptoms. I also have chronic nasal congestion, by the way.
Here is an update to my Jul 6, 2023 post. I have had several MRI's which have ruled out MS and a tumor. On Aug 20, 2024 I had an MRI arteriogram which led to a preliminary diagnosis of a blood vessel impacting a branch of the trigeminal nerve. On December 6, 2024 I will have a special MRI which is meant to allow a surgeon with whom I have an appointment on December 9, 2024 to be able to diagnose specifically where such a blood vessel/nerve involvement might exist. This MRI might lead to my having Micro Vessel Decompression Surgery(MVD surgery) to correct the blood vessel/nerve problem. If anyone wants to know what MVD surgery is and what the results are, there is a lot of information on Google.
This is really interesting 🤔. I read a patient who had a face lift reported at follow up after surgery = presto! Her migraines were relieved + her surgeon felt a nerve had been impinged before surgery. After the surgeon's skill at lifting + draping the facial tissue = the nerve seemed to be freed up! Perhaps the amazing neurologists at Mayo #1 top ranked can test for facial nerve compression + recommend a customized treatment plan for you? Take care 🌠