Welcome to NeuroTalk. Sorry to hear of your struggles.

From what you have said, I am more concerned that you have suffered a neck or spinal injury. The neurologist is likely a generic variety. I would suggest trying to find a specialist in concussion and other impacts top the head that can effect the spine.

You also might check with a chiropractor. An Upper Cervical Chiropractor would be a good start. Check out www.NUCCA.org or google Atlas Orthagonal Chiropractic. They will be careful to not make things worse. I would caution against any chiropractor who wants to do a neck twist and pop manipulation until you know what injury you may have done to your neck/spine.

Disregard any need for a diagnosis of Post Concussion Syndrome. It is meaningless as a help to your treatment.

A physical therapist may be helpful with some very gentle neck traction. Again, you want to avoid strenuous therapy until you have a good understanding of your injury. Be skeptical of the practitioner who says, "Let's try this." Too much of health care is trial and error. You can't afford any error.

Google Cranial Nerves. You will likely notice some similarities between the individual nerves and your specific symptoms.

I once had access to a Medical School course called "Diagnostics Through Physiology." It did an excellent job of showing how to group physical symptoms to a common and likely cause. Unfortunately, the course has been blocked from outside access now.

Your on again, off again symptoms are likely due to inflammation. Have you taken any anti-inflammatory drugs? Aspirin, ibuprophen, or prescription NSAIDS? They may help but also block further understanding of your injury.

I would suggest being very careful to sit, stand, and sleep with good posture/spinal alignment.

I understand this from personal experience. I have a neck injury that can get inflamed and cause autonomic nervous system malfunction, to the point that I suffer apnea (failure to breath properly). I have to be very careful with neck/head position when I sleep. When I am awake but with bad posture, I will suddenly become out of breath and realize that I had not been taking breaths.

For you, the inflammation may just cause the strange nerve sensations. Don't be surprised if a neurologist wants to check you for Multiple Sclerosis or other nervous system diseases, although the MRI and CT would likely have indicated that by now.

Let us know how you are doing. We are here for your support.

And, don't be anxious for a quick fix. Head and spine injuries take lots of time to heal in many cases. The most important thing is to not make matters worse.

My best to you.