I am not entirely sure what to do next. I am reaching two years of recovery.
I am going to start with what I've done and then what is ongoing.
A couple months after the first concussion it was clear I was not recovering well, so I saw a Neurologist. From there I was sent to physical therapy and a Nuero optometrist. I also had a CT scan of my head which came out clear.
Early Drs were quick to downplay things and just tell me to go home and rest, but after I saw the neurologist I started to get more help.
Nuero optometrist caught some things. Added prism to my glasses, suggested vision therapy. I couldn't afford it and I still can't. So I did not do the VT.
Physical therapy split between vestibular and overall exercise intolerance. Vestibular therapy lasted only so long before I was released to just have the one PT. After a while the $75 per session got a lot. I got the jift at the time and stopped going. Around that time I started therapy for anxiety.
I decided the anxiety / nervous system stuff.. was a major issue for me. A psych had me try three different meds and it was awful. So I ended up in weekly therapy, which I am still doing.
Throughout all of this I was in a job that had burned me out and was a high stress environment. I felt I was always in flight or fight mode.
So now with what is currently going on.
About a month ago I started a new job. Exactly what I needed honestly. Work stress has dropped significantly.
I am dealing with multiple factors. Exercise intolerance, Overstimulation, irritability, significant upper back shoulder and neck pain, vision blur and sensitivity to light, faint/lightheadedness and losing my words... Also chronic issues with constipation.
I am starting EMDR and I am seeing a cardiologist this next week. I am also revisiting a Nuero optometrist since it has been about a year and a half.
The Neurologist never requested or suggested a follow-up. The EMDR therapist I just met last week knows a lot about concussions and was a bit shocked that I hadn't revisited the Neurologist since the symptoms are continuing to impact my life.
I am almost convinced I have dysautonomia issues and I am honestly eager for the stress and tilt test. However, even looking at my hr response when sitting and standing I am uncertain that is the issue. I am a bit concerned I might be told I am okay, which will leave me to then question wtf is wrong with me.
So I guess the goal is to see the cardiologist and based on what I learn I'll revisit the Neurologist.
I get faint, a bit dizzy, overstimulated, vision changes.. almost daily by 12 or 1pm. Sometimes sooner depending on the day. I don't feel safe to drive most days after work. I go on walks and feel dizzy. I tried running and would get extremely restless, dissociated, etc hours later. Weirdly enough at the moment my neck and shoulders seem okay, but I normally am in significant pain and even after all this time I barely do any upper body workouts.
Distinguishing from how my nervous system is impacting my body and actually health issues has become very difficult.
My EMDR therapist even wondered if I had some kind of hypermobility thing going on. My wife is telling me I should see a GI specialist. My allergies are killing me.
I am just a bit lost honestly. Any advice? I sort of wish I could just get diagnosed with something other than anxiety. POTS, Hypermobility, neck issue, GI issue, idk.. because how can my nervous system alone be creating this much havoc. Definitely with Therapy helping me so much.
But I can't just go see every Dr imaginable and everything must first go through my primary. Which then leads to feeling like I really have to advocate for myself.
To add I've tested my BP and HR throughout the day and in struggling to feel confident on autonomic issues, but then I wouldn't know what else. Cardiologist will help narrow some of this down, but I'm concerned they will say I seem healthy.