u/Dazzling-Ask-9715

I have neuropathic pots, mcas, SFN, ADHD and a handful of other diagnosis.

I have been having such a hard time lately staying in my body. I am so aware of the sensations in my body (which I've had my whole life but only recently started to understand).

I find myself getting so stuck in my head and then before I know it I am dissociating and end up panicking.

I've tried antidepressants in the past but they only seemed to make me more depressed. Adderall is the one thing that has helped me stay focused and calm my brain- but some days the stimulate is too much and I'm dizzy and faint.

I have an appointment to see a new neurologist in August for this constant pressure/numbness/tingling in my head and face.

Does anyone else go through this? What do you do to help ease it?

I do a lot of somatic therapy, and I'm going to start talk therapy again in a few weeks.

Incoming rant/vent that will probably be scattered and all over the place.

I was diagnosed with ADHD, neuropathic pots, small fiber neuropathy, and mcas a few years ago after I had my son.

My whole life I've had symptoms and never started to put the puzzle pieces together until recently. For almost 2 years I felt as if I was finally making progress. I had energy. I wasn't depressed. I could enjoy spending time with my son (I'm a stay at home mom) without feeling overwhelmed/sick constantly.

All it took was a week of extreme routine change for me to completely fall backwards again. I was barely eating and drinking and didn't even know. I was so focused on everything else around me and keeping my son safe, happy and healthy. Little did I know, I was running completely on adrenaline for lord knows how long and it took a surge of panic/doom feeling on a CALM day to scare the living shit out of me. Ive been trying to claw my way back out of this hole for months.

The pressure I get in my head/face/throat sends me into a spiral. I saw a functional neurologist who stated the following -

Neuro Axis:

Midbrain (bias L)

R PMRF

R Cortex

Key Clinical Findings:

Neurological testing was grossly intact. The following findings are functionally abnormal:

Heart rate elevated from 76 bpm to 106 bpm supine to standing

PLR quick to fatigue bilaterally (more prominent on the left)

Left eye is slow into convergence with instability into divergence

Decreased gain of smooth pursuit eye movements in the vertical plane

Latent Anti-Saccadic eye movements (most prominent to the left)

Decreased red saturation on the left

Cyanotic, sweaty, and cold hands bilateral up to wrists

Delayed capillary refill in bilateral fingers and hands

Increased pinwheel sensation right V1 and V3

Decreased facial, tongue, and neck musculature strength on the right

Decreased right arm swing with gait

Retained Spinal Galant Primitive Reflex

Labwork:

The following lab results are out of standard lab range:

Ferritin is high (255)

Alkaline Phosphatase is low

Cholesterol is low

Moderate levels of bacteria and WBCs found in urine

The following lab results are out of functional range:

TSH is functionally low

Triglycerides are functionally low

They are too far away and the treatment they offered was too expensive for us to afford since they don't take insurance.

I'm feeling like I am losing my mind. Everyday the symptoms are different.

I'm waiting to see a neurologist for this horrible head pressure. I'm always getting numbness/tingling in my face and mouth. I get full body tremors almost every night when I am finally able to lay down.

I do a lot of somatic therapy and try to avoid medications (I was on a ton of antidepressants and all that jazz for years that felt like they started to make me feel even worse) but at this point I just need HELP or solidarity.

I don't know what I expect to get out of writing this but figured this was a good place to post.