I really hope someone here can help me figure out what's going on.
Thank you for allowing me to participate in your forum. I really hope someone here can help me figure out what is going on.
Just over 2 months ago, I suddenly started experience numbness in most parts of the right side of my face and scalp. No pain, no burning just numbness and sometimes tingling. Occasionally, i get spasms in my jaw (it has started to lock up a couple of times). I have no other symptoms, though sometimes the numbness does travel into my right neck and shoulder, and once of twice into my right thigh. Last year, and again about 3 months ago, I experienced numbness down the other side of my body that came and went in the course of a day. Spent all night in the emergency room, had a CT, EKG, and a host of other tests. Nothing turned up.
Since then, I have had an MRI (clear), been checked for thyroid, B12, electrolyte and iron imbalances, plus liver and kidney function, blood pressure, blood sugar and cholesterol. Everything normal.
The neurologist is throwing her hands up and saying it is all stress and there's nothing more she can do. She doesn't think this is TN because there is no pain or burning involved. But I am scared this is a precursor to full-blown TN, given my lack of other symptoms (doesn't explain the other paresthesias, but perhaps there is more than one thing going on). I will admit I went though a very stressful year and an acute bout of depression/anxiety about 3 months ago (I have suffered from chronic depression all my life that ebbs and flows). I'm willing to believe those factors have had an effect, but at this point, given that things have been ok for a while, I find it hard to accept this is all just stress-related.
Does this sound like the beginnings of TN? If so, what do I do? There are few TN specialists in my area (DC), and I don't think any are covered by my (lousy) insurance.
Please go to google
Click on images
Type in… Trigeminal neuralgia
Do any of these drawings of faces , images
Seem like it is what you feel?
I would keep,a journal of all your pains
Do yoga, get a massage at a massage school
Lower your stress responses
I have been keeping a journal for 6 weeks, but the only triggers I can identify that make the tingling/numbess worse are bending my head in certain ways and lack of sleep.
It's hard for me to relate to the pictures on Google since I am not experiencing the typical TN symptoms they seem to illustrate, but rather persistent numbness in the entire trigeminal nerve.
Has anyone's TN started this way? Or is this something else entirely?
Everyone's experience with TN is very different. Many people have a very difficult time receiving proper diagnosis and treatment.There are also other disorders and diseases that can cause neurological symptoms.
I do want to say though that I am prone to anxiety and have gone through a couple of very difficult times with it. It can manifest itself into physical symptoms. I did experience numbness and tingling in my hands, legs and feet. I was also having some generalized chest pains during those times.
Getting a handle on anxiety can be difficult and it is a process. I have to constantly keep tabs on it to be sure I don't fall into that pattern again. For me catastrophic thinking leads to anxiety immediately. As soon as I stopped having anxiety all of those symptoms stopped.
I do have Type 2 TN but am learning that stress, anxiety and lack of sleep are my biggest triggers. I do not have the "triggers" that others have and many people don't have specific triggers.
The symptoms you describe sound very similar to what I experienced ten years ago. It took six months to get a diagnosis, but I have an Arnold Chiari Malformation. This often causes neurological symptoms on only one side. I am not a doctor, of course, but as someone who went through an awful lot to find out what was wrong with me, I thought I would mention it. It is a structural abnormality at the base of your skull that can ONLY be diagnosed on an MRI. It is often completely missed (as it was in my case) by radiologists, and neurologist who are not familiar with this rare issue.
Best of luck to you