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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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So sorry to hear that. I know all of us on here understand how you feel. Have they ever put you on Carbamazepine? I am on 200mg x 2 times daily. It is the only thing I have found that helps me?
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1 ReactionThank you so much for taking the time to reply!
I really appreciate it.
I will ask my GP to look in to that👍🏼
It’s such a frustrating condition to have, knowing there are other people having to cope with this disorder gives me a little piece of mind.😌
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1 ReactionMy insurance is changing within the next 30 days. This is a good thing. As soon as it does I will be call KU to get into a Neurologist there for a 2nd opinion. I am not interested in doctors throwing meds at a problem and when one works, them saying , I am not sure what is wrong with you, but this med works. So I guess you will be on it forever, goodbye. I would like them to go through the steps to rule things out and at least attempt to find the root of the problem. @caosborn if your trigeminal is responsible as I believe mine is, why is it so pissed off. And how do you calm it down?! It is a nerve so it is part of your nervous system. I know this started for me when I was under a tremendous amount of stress in my life. I am sure all of our nervous systems are taxed. The question is how do you calm down your nervous system when it itself is what is stressing you out now.
I wish I knew those answers! My understanding is inflammation is irritating the nerve. My headache specialist and I are still searching for reliable, safe, consistent relief. As I mentioned, Vyepti infusions are helping with the nerve pain. However, I am extremely sensitive to medications and that stymies any real progress for me.
A paper in the NIH library describing surgical treatment for TN can be found with the link below. It is rather lengthy and very thorough. The authors claim that 85% of TN cases are caused by an artery or vein rubbing on the trigeminal nerve. I have copied the conclusion to the article below. I have discussed this procedure with a surgeon at OHSU but, at the moment, prefer medicinal treatment.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9452382/#:~:text=Since%20then%2C%20many%20studies%20have,vessel%20from%20the%20trigeminal%20nerve.CONCLUSION
The effect of MVD on TN has already been established. However, more advanced research is needed for clearer surgical indications, management of culprit vessels, and durability of the decompression materials. In the future, along with the continuous study on the pathophysiology of TN, a new MVD technique that is safer and can increase the cure rate should be developed.
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1 ReactionFor those who may be interested there is an organization called Medifocus who publishes a book called TRIGEMINAL NEUTRALGIA. Details are shown below,
TRIGEMINAL
NEURALGIA
a comprehensive guide to symptoms,
treatment, research and support
Updated: 05 January 2022
Medifocus.com, Inc.
3809 Clarks Lane
Suite 100
Baltimore, MD 21215
http://www.medifocus.com
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1 ReactionI understand. Inflammation sounds right. Most issues we have nowadays is from inflammation. I am in a holding pattern until the new insurance starts. I am sure it will take me months to get into KU. Mayo is not in network for me, but if KU refers me then they cover it. I will let you know if I make any headway. Please do the same. Thanks again @caosborn
Carbamazepine may crash sodium levels. Frequent monitoring of sodium levels is imperative. I nearly died from that happening to me and I have seen numerous postings on support groups of it happening to other people.
Oh WOW, I had not heard that. Thank you, I will look into it and have mine checked.
Hi! My husband was diagnosed TN and put on carbamazepine. The neurologist told him he could take more and I was concerned about the him not scheduling a blood test while he was on it. He went to his GP for physical and his sodium levels were so low he could have died from hyponetremia. So yes, ask your doctor about this. Carbamazepine is a first line of drugs for Trigeminal Nueralgia and usually works for many people.
I can understand how frustrating this is for you. I have an entire back story regarding my husband and what I have learned is the following:
1. Find an amazing neurologist. You may have to wait, but it’s worth it.
2. Second opinions can be very helpful!
3. Keep notes of your symptoms, time of day, length of pain and what seems to help or not help.
4. Keep a list of thee medications you are on or go off of and always ask if you need bloodwork to monitor for anything.
5. Make sure your neurologist specializes in what you need help with. You can see multiple if you need to.
My husband was diagnosed MS 3/2020 and then out of nowhere had shock like pain in one side of his face in 10/2020. They thought it was Trigeminal Nueralgia. Put him on carbamazepine which worked for a while and then stopped working. Offered him nerve blocks which for him made it worse. You can have a special MRI that looks at your Trigeminal nerve to see if there is compression. My husbands doesn’t have any compression. They said it’s from the MS. He had been on several medications, and his symptoms have been all over the place, but only on one side of his head and face. He has had the eye pain, jaw pain, ear pain, burning, etc. However, we believe he may suffer from cluster headaches for various reasons. We are seeing a neurologist specializing in migraines, including cluster headaches. The interesting thing is, our MS neurologist told us that the same medication is used for TN and cluster headaches and certain types of migraines, but there are a few things we have not tried, like breathing oxygen which helps with clusters.
If you do some more research there is also occipital Nueralgia. Your symptoms may match this. I have no idea.
He is finally on several medications for this pain that do not affect sodium level. Topirimate, Noratriptaline, Baclofen.
I feel like you have to find the right combination that works for you and it can be a lengthy process. Whatever you do, advocate for yourself regularly! Keep notes of what the doctors tell you, ask questions, and follow your gut.
And as for your comment about stress. Yes, that definitely seems to play into it.
I’m not telling you all of this to worry you or say I know what you suffer from, but I want people to know they have options and many different doctors they can see. You are your best advocate! Good luck to you!
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