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Tingling Sensation, Right Side of Head
Three years ago, I developed a mild tingling sensation on the right side of my head, right next to the eye. To this day, I still do not have a clear explanation or solution to this very annoying matter.
Early on, I discussed this with my eye doctor and my chiropractor. It went away for a while but always came back. Now I get it almost daily. More recently, I saw a neurologist and had an MRI of the brain which showed nothing unusual. The neurologist threw up his hands and said the absolute only solution was injecting medicine right into the nerve. (He said this despite not getting optimum results after doing so.)
I don't know what else to do. I don't wish to spend the rest of my life trying countless doctors hoping someone gets it right. Please share if you have any ideas about this, and I'll certainly answer any questions about my situation if it helps.
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Hello @michael1973, Welcome to Connect. It sounds like the symptoms similar to Trigeminal Neuralgia or Trigeminal Neuropathy depending one whether or not you have facial pain in addition to the tingling sensation. There is another discussion that might be helpful to determine whether or not it's similar to your symptoms.
-- Trigeminal Neuropathy vs. Trigeminal Neuralgia: Is it the same?
https://connect.mayoclinic.org/discussion/trigeminal-neuropathy-versus-trigeminal-neuralgia/
You mentioned that you have seen a neurologist. Have you thought about seeking help at a teaching hospital or major health facility like Mayo Clinic that use a multi-disciplinary team work approach to patient care?
Sounds better than a stabbing pain!
@johnbishop I suppose Trigeminal Neuropathy could be what I'm dealing with. Hard to be sure. And still no idea what may have caused it.
How would I go about finding such a place to seek help from? I work full-time, so it would need to be local to me.
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1 Reaction@michael1973 Here's a list of teaching hospitals by state if that helps - https://www.healthguideusa.org/teaching_hospitals.htm.
This is very rare, but trigeminal neuropathy can be caused by numerous things. One of them is from IgM monoclonal intrusion for someone that has higher IgM antibodies (often associated with non-hodgkins lymphoma like Waldenstroms Macroglobulinemia (WM). This is a rare indolent (slow growing) lymphoma or blood cancer. I have it. My neurological manifestations are in the feet (24/7 foot/toe numbness). It's not bad yet but I'm aware of it. The IgM antibodies attack the myelin-sheathing of the nerves (anywhere in the body). I met another WM patient at the office and he had the same symptoms as you. We both are taking a WM targeted therapy drug called Brukinsa for WM AND it is 71.4% likely to resolve the neuropathy issue in an average of 4.6 months. They can run a IgM ANA test to see if you have an elevated number of IgM antibodies in the blood.
None of this helps you if you don't suffer from a blood disorder, but at least it might you frame your search to include blood-related possibilities. Good luck.
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2 Reactions@marcwall ... In addition, I forgot to mention this. If someone has high IgM monoclonal cells in their blood (while being diagnosed), they can do an Anti-MAG Antibodies test to confirm if those immunoglobulin cells are infiltrating your nerves. My test confirmed they were (at least in-part) causing my neuropathy. So, that helped guide the proper treatment for both the cancer and the peripheral neuropathy. Killing two birds with one stone!
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1 ReactionI appreciate all of the information provided here. I wonder, though, how to go about getting checked out for some of these things. I can't see myself being taken seriously just calling a doctor's office and asking to be tested for random rare conditions I heard about online.
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1 ReactionAlso, I looked into the above list of teaching hospitals, but it seems to list every mainstream hospital in my area. I don't find that particularly helpful
@michael1973 --- Of course you would not, Michael. I'm just letting you know there are a lot of reasons for our maladies and research is the best way to become aware of them. Then, when you are speaking with doctors about "other" symptomology or problems, you can "ask" them "what if" or probing, open questions. Do you suppose my "X" issue could have something to do with my trigeminal neuralgia (neuropathy)? For example...
I had neuropathy symptoms for a couple years that varied widely, but generalized around the feet/toes. It was not gout. So, no one had an answer. It wasn't until I was diagnosed with a blood disorder (cancer) that I made the connection using ChatGPT to analyze my broad blood tests, morphology (genetics/epigenetics), and pathology (marrow). That empowered me to ask a tactful question to my oncologist, while NOT putting him on the defensive. That's important. He said that it could be related. Then to his credit, he ordered a test that the health industry had available for that determination. (I already knew of the test but had said nothing). Needless to say, I was thrilled when he suggested it and I gave him "credit" for his decision.
The test results "positive" led to treatment that would kill the cancer cells and remove them from the nerve myelin sheathinig that was causing my neuropathy. I know it should take 4.6 months on average IF it works for me, but it's the best option available today.
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2 Reactions@michael1973, Just my non medical opinion but I think the real problem is to find a teaching hospital with the specialty you need to help with a diagnosis and treatment. Just looking at the list can help you find the closest one but it may not be the best one to help you. You can search for the different teaching hospital ratings but I think the real advantage for teaching hospitals and major health facilities like Mayo Clinic is the specialty team approach and the patient centered care. Here is some research that I found awhile back.
-- Teaching Hospitals and Quality of Care: A Review of the Literature
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2690120/