I just wanted to update this post, if nothing else but to help someone else out there who may be going through something similar.
After I had written this I consulted with a Neuropsychologist named Dr. Diane Roberts Stoler who wrote a book on concussion and mtbi. She put me on a strict diet for 2 weeks to try and rule out any foods that may be causing me symptoms as well as give my brain a break from trying to deal with processed foods, etc. The only thing I noticed was that vinegar gave me a headache and bread made me tired.

My neurologist had diagnosed me with atypical migrainous symptoms.
I tried Amitryptiline and it was horrible, It felt like when I woke up my mind was awake but my body was still sleeping - it was terrifying. And by day 2 I was so depressed I wanted to kill myself. So I went off it.

I tried Atenolol but it also made me so sick. I was taking a ton of Advil for way too long and so I decided that since I was on an anti inflammatory diet I would wean myself off the advil. The more I weaned off the advil the better things improved. I eventually got off everything and continued to take Vitamin C, D, multi vitamin and Tylenol seemed to help.

I was getting painful pins and needle feelings all over my body, a pain in my abdomen just below my sternum on the left side, almost like a muscle was spasming and I was weak everywhere. Each day I did some more and it was as though I had to build up new muscle as well as new neural connections. Each time I experienced something (like trying to feed my baby) it got easier the next time.

We had to hire a nanny as my children were just 5, 3 and an infant. Eventually I was able to be well enough for the nanny to leave and my husband was able to go back to work up north and I could resume my life looking after my children on my own.

I struggle with a daily headache. I get painful pins and needles and upset stomach and it seems as though if I do any type of exercise (like walking my kids to school) I will pay for it for a few days. I also always have this feeling that I've drank a pot of coffee (even though I haven't drank caffeine in over a decade) and my anxiety is very high,which I believe is a symptom of my condition as well as my own fear of everything that is going on.

I was FINALLY able to see an endocrinologist. 2 actually. The first one did a Glucagon stimulation test to check for hypopituitary and human growth hormone deficiency. It came back normal so we could rule that out.

The other endocrinologist is testing me for a whole host of things. She is testing for Pheochromocytoma, histamine, gut peptides, metanephrines, and more.

Years ago when this first started I was diagnosed with Neurocardiogenic Syncope, which I have learned is a form of Dysautonomia. I am really wondering if I don't actually have POTS and not NCS. I am also curious if I have Mast Cell Activation Syndrome. These are things that I am going to be pushing for. The histamine blood test is a great starter.

I have also been in contact with an Atlas Orthogonal Chiropractor named Dr. Scott Rosa from NY. He went over my MRI and NUCCA xrays to try and help me figure out what is wrong. He does upright MRI tests to determine if the cerebellar tonsils of the brain are herniating through the foramen magnum. This would be similar to Chiari Malformation but on a regular MRI would not show up or be measured as a chiari. This doctor hypothesizes that the herniation, no matter how small, equals big symptoms. He said I definitely have Cranio Cervical Syndrome.

Since I have stabilized from how sick I was he advised against doing anything that would disrupt this.

Every day is a struggle. I vibrate with anxiety, deal with pain in different places all over, get red hot cheeks or ear at times, painful eruptions of pins and needles - it's like I'm on the verge of the motherload of migraines and am fighting it off every day. I am careful not to over do it, I need to sleep well, eat on time, avoid stress, you name it.

I currently have a sinus infection and am having a hard time being strong enough to get through it. I am afraid I may have lost my alignment (have been holding for 8 months). I have no idea what will happen at the next adjustment and I am terrified. Why not just avoid it? Because the symptoms get worse and worse and worse until I'm bed bound.

I will update this thread again once I get some blood test results back from the endocrinologist.