major setback, < 3 years later
 

Hey NT- (sorry if this is long)

About 1.5 months ago I had a major setback. I had been feeling pretty good for about 2-3 months and functioning at a high level. I took an internship after I graduated college that turned out to be 8 hours a day of computer work (mostly excel data input). After the first week I felt really run down like I was sick/bad allergies so I rested all weekend and felt better Monday but by mid-week I was extremely dizzy and disoriented and couldn't bare to look at a computer. I took a few days off to try and recover but I ended up quitting because my symptoms barely got better. I also had a family vacation cross-country planned that I had to go on which made my symptoms worse as well.

So here I am now. I don't feel fully setback in the sense that all my symptoms are back. The overstimulation headaches, extreme fatigue, and processing issues have not come back but I am feeling just as bad as when I first hit my head in terms of dizziness/vertigo and visual symptoms (and do still have bad fatigue at time).

My visual symptoms are basically if I just sit on my couch and stare into space it looks like the room is swaying back and forth and my eyes will jerk around like they are struggling to keep focused. With my eyes closed it feels like I am spinning, rocking, swaying, or at worst, like I am being thrown violently around (this is the most intense my vertigo has been). When I walk around it doesn't seem like my eyes are matching with my head movements so there is a lot of blurring with turning and disorientation just walking around my house. also, my eyes just in general feel very irritated all the time (burning/aching pressure around eyes).

Basically those are (and have always been) the symptoms I can't seem to get rid of. Plus neck pain. I always have constant dull pain at the base of my skull, nerve pain up my scalp and mag tmj pain on my left side. But the vertigo/dizziness/visual disturbances are worse than they have ever been and I am basically functional at the lowest level. Barely leaving the house except for therapies and when I'm so desperately stir crazy. I can barely look at the computer for more than 10-15 minutes on a good day. Same with phone and computer. Even just talking to my parents and listening to podcasts makes my dizziness worse.

I'm trying to keep my anxiety down but it's really hard after dealing with this for so long and feeling so so limited in my daily life and just thinking about dealing with more therapists and a possibly long recovery. I'm starting to take 5-htp to help with my depression.

Does anyone have any similar experiences with such a major setback this far out from the original injury with no re-injury? How do I keep my spirits up knowing that this may take months to resolve?

I'm seeing a vestibular therapist who thinks I should do the gaze stabilization exercises and he works on my neck for ~40 minutes a session b/c he thinks that is also contributing to the dizziness. I feel like I can barely do the exercises though a. because I am so dizzy most of the day it's challenging enough just to get myself basic meals and b. my neck hurts so badly when I shake my head back and forth I'm worried that's going to cause even more dizziness. I also do vision therapy exercises but those don't really seem to help all that much they just make me really dizzy as well. Also, none of the vestibular/vision testing showed any abnormalities they are just suggesting these exercises based on my symptoms.

Anyone have any advice on if I am taking the best course of action? The only treatment I haven't tried is NUCCA or UC/atlas chiro? Would those help with the symptoms I described? Any advice for the emotional side of things for such a prolonged PCS experience at such a low functioning level. I'm at my whit's end.

If you didn't have any sort of hit or re injury, I'd look into the sore neck and vision symptoms..
If you hit the books /computer a lot for college and had a poor ergonomic set up, it could be a RSI/postural issue.
An experienced PT evaluation, or expert chiropractor (that uses multiple modalities) would be worth a try..
I'm thinking muscle spasms and maybe trigger points from what you describe..
I also had some of those same issues when I was on Lipitor (a statin) for high cholesterol..

Find a really good neuro-optometrist or neuro-opthmologist, and get checked for depth perception and being slightly crosseyed. People can be just slightly cross eyed (or the opposite of crosseyed) and not know it. Your brain corrects for it and its okay your whole life until you get a concussion and your brain can no longer do the awesome correction anymore. I was told A lot of people with major issues from concussions like this had some minor pre existing condition that their brains corrected for and concussion blew it all up. Ive seen multiple optometrists and even a neuro opthmologist miss this misalignment before a neuro optometrist who was experience with concussions figured it out with the vertical alignment test. she could really see it when she spun a black and white striped cylinder and watched one eye skipping funny compared to other eyes tracking the stripes. She prescribed vision as well as a little vestibular therapy


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Sensory overload is a very real side effect of chronic illness. Sounds like you have bumped into it.
I'm learning how to recognize it so I can better deal with it.