Hello,
My name is Will, and I've been suffering from PCS symptoms for about 4 years and would love the help of this forum in diagnosing my injury and what type of doctor I should see next.

My history:
I had one concussion about 5 1/2 years ago from lacrosse, where I hit the back of my head on the turf. I did not lose consciousness, and my symptoms went away in around 3 weeks (except for my vision troubles). That fall, I was playing in a soccer game, and after a few headers, my symptoms returned. This was not my first time heading the ball after my previous concussion, and no symptoms had returned then.

My symptoms/triggers are as follows:

Pressure headaches:
My primary symptom. This feels as though my brain is tight, and is a deep pain (i.e. it feels like my actual brain). These headaches are constant, and have not relented in my 4 years of having symptoms.

Sound sensitivity:
Loud music or loud noises for a long time will worsen my headaches, and make my head feel "too hot" and my face and skin overheated.

Vision:
It feels as though my vision is blurrier, and that my eyes are seeing the world around me, but that my brain often does not process them in the same way as before. This symptom is greatly exacerbated by lack of sleep.

Bumps:
Bumps that would be no big deal for others cause me pain -- if I accidentally bump the left side of my head on a doorway lightly, the pressure in my head will feel worse where I hit my head, and again, I will feel overheated.

"Out of it":
I feel much more "out of it" than before, and this feeling is exacerbated by most triggers.

Lack of sleep:
This only developed a few months ago, but when I do not get proper sleep, or when I stay up later than I am used to, I will feel a more intense pressure in the back of my head and a lightheadedness that sometimes comes with dizziness and faintness. For context, I have been checked for vestibular and balance issues, and my brain is completely normal in that department.


Some little triggers that may be of use:

Car rides: riding in the car gives me more of a typical headache -- in the front of the head.

Screens and reading: if I look at a screen too long, or read for a long time, my vision symptoms will get worse, and I will feel more "out of it".

Video games: For some reason, playing video games with a controller makes my symptoms significantly worse than just watching a television screen does.

Jostling: Bumping my head around significantly seems bad a lot of times, but sometimes doesn't do anything (if I just don't think about it afterwards or distract myself).


Things that make it better:

Hot tubs and exercise (i.e. increased blood flow).
When I exercise or sit in a hot tub, it feels like there is lots of blood in my brain (as if I were hanging upside down). After this feeling subsides, the pressure headaches are a little better, and I feel a little more "with it."

Tests done:
- MRI (2x): both clean
- Vestibular and balance testing: all clean

What I've tried so far:

- Most typical medications: Amitryptaline, Topiramate.
- Lidocaine IV infusion
- Massage
- Accupuncture
- Chiropractor
- Physical therapist
- Pain management doctor
- 1 round of Botox injections (due for another soon)
- Going in to see an opthamalogist soon
- Sensory deprivation tank
- Medical marijuana (high CBD)
- Nerve blocks


None of these have worked -- in fact, my symptoms have continued to get worse and new ones have arisen.


The neurologists, pain management doctors, concussion doctors, and others that I have seen say that my brain is fine, and that my symptoms are from other sources. Should I find a new neurologist so that I can have someone to touch base with? Are there any therapies I haven't tried? Please help -- I'm getting desperate to find a fix.

Thanks,
Will

Your symptoms are almost identical to mine. Based on your symptoms, I'd bet good $ that you have convergence insufficiency. Definitely go see Neuro opthamoligist for testing. It is expensive and insurance a lot of times doesn't cover it, but it is absolutely essential to rule out any vision issues(normal eye dr doesn't test for this).

It's possible that prism/tinted glasses can help reduce some of your symptoms.

Some quick thoughts. Feel free to probe me for more detailed info.

1) For headaches, dizzyness and noise sensitivity, consider finding a chiropractor trained in atlas vertebra realignment. Preferably find one who does x-rays before and after. This is the crux of the spinal cord and can pull on the brain stem.

2) For sleep, consider addressing adrenal gland fatigue. This involves dietary protocols and supplements.

Also for sleep, consider strict sleep hygiene habits. An excellent resource with online guidance and interaction is Dr Jacobs' CBT-i 5 week program.

3) I highly recommend the supplement program Mark has created in the 'stickies' section of this form.

4) Your car ride and video game issues sound like visual vestibular mismatch. This is a vestibular disease that can be easily missed with basic testing.

Good luck,

Hains

one thing you could try that i noticed you had not tried, fasting, I did a 36 hour dry fast (not my first one, but the first one since i had a head injury), during my 36 hour fast the headaches were rough, but after the 36 hours i felt really good the best i had felt in 10 months, and I do believe it did help me more then i thought it would.

fasting is one of the the best ways to heal the body, dont dismiss this idea but look up the benefits of fasting or feel free to ask me questions about it