Traumatic Brain Injury and Post Concussion Syndrome For traumatic brain injury (TBI) and post concussion syndrome (PCS).


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Old 12-05-2019, 08:29 PM #1
AlmondJoy87 AlmondJoy87 is offline
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Default My Injury History, leftover symptoms. Any insight?

Hi everyone. It's going to be almost a year since my last injury and I have made a lot of progress, but I am still dealing with the sensitivities and some symptoms. A lot of them are cognitive on the daily, and others are just the overblown bodily reactions to events (example; backpack getting caught on railing today while walking fast, the sudden jolt brings on all day classic symptoms).
I can post those later but I wanted to share my history, see if you guys have any insight.

My history:
Many childhood bumps that never caused symptoms, at least nothing that I remember. Running into a cabinet, running into a coffee table, face diving over and over into my couch and one time landing on the arm of the couch, basketball hitting my head, falling off scooter in alley. Typical childlike clumsiness, got dropped once. No issues til 2008.

1. 2008, first concussion. Wii bowling, swung into my head with the remote. Felt fine initially. I got the true injury when I reenacted the incident to my friends at school by swinging my fist into forehead multiple times with hand. Shortly after I so dizzy that I fell and hit the side of my head on a locker. Had symptoms for months. Those got better but ever since, but could not ride elevators without getting very sick. I got vertigo from trains and loud sound changes at concerts. My symptoms were dizziness; fog; nausea; but the most bad was this zooming vision when I'd try to go to bed but that went away within six weeks.

2013, I got Dysautonomia/Postural Orthostatic Tachycardia Syndrome. Struggle with blood flow to head. That condition got better with just time, diet, and exercise. I had to do a lot of lower body and glute exercises to increase blood flow to my brain. I also had polycystic ovarian syndrome. I showed some hypersensitivity with having hypoglycemic symptoms around the 70s and low 80s. But overall my sugars would spike and drop a lot. No head injuries, but still had a history with dizziness and autonomic nervous system sensitivities. Was told by doctors that my nervous system was hypersensitive.

3. 2017, mild concussion that got better after ten days. I walked into my bedroom door which was closed in the dark. Felt normal in college but anytime after that, when I'd so much as bump my head, I would feel off for days.

2017, I also I bumped into my metal framed mirror in my bedroom in the dark. Felt concussed for days but neuro exam looked good during check up.

2018, I laid my head down onto my metal foot frame hidden in blankets. Same thing.

2018, child bumped heads with me in the swimming pool...same thing for days my old concussion symptoms would flare. I went to my school clinic after these incidents and again, I never showed them signs of a concussion.

5. January 8th 2019, my recent injury; hit head twice in the same /24 hours. Jumping back into bed and my head on the back hit against my bed frame. I was used to sleeping reclined from nose surgery in December. I didn't have the pillows up that night and hit back of head. Then the next evening, I was going into the backseat of my car to grab something and cracked the right side on the metal frame above the door. I cant remember if it was the way in or the way out, but I never lost consciousness...But gosh, the next night I had a bad migraine and I saw rainbow zig zags and blind spots. I felt depressed, no appetite, trouble thinking, had headaches and some neck pain for weeks. I was slowly feeling normal again. My doctor said I had a concussion but I seemed to be healing.
The biggest symptoms were severe depression and mental exhaustion and crying. I couldn't even think straight without getting lost and exhausted. It hurt to just be awake.

5. February 9th, the incident that I still think was injury but doctors said no. For maybe forty five minutes to hour, I was dancing around and doing a lot of bellydancing shimmying, shaking at the butt and hips...I trying to take videos on my phone, had my head turned to the right and looking down behind me mostly. I had my eyes set on the screen. My physical therapist believes the neck position and shaking of the inner ears caused a vertigo flare up. I was kneeling for the last fifteen minutes on Bed/.
I got such horrible vertigo; fatigue; nausea; headaches; just debilitating symptoms for weeks!!! I felt like I had another concussion and I had to go to vestibular rehab for months... I had lots of nystagmus and trouble simply looking around without symptoms. I also had crystals that got messed up in my ears so I had vertigo from this too/bppv/". It was so miserable it felt it was my concussion coming back.. took month or two to get fully better.

Since then I've had many flare ups which I have posted about on here. The one I didn't mention ever was last March when I wound up driving into a frozen snow block while driving into a parking lot.
Today I'm dealing with a bad one, from literally just walking fast and my backpack handle getting stuck on a railing and being jostled/pulled from that. I went to sports medicine and everyone there said that it shouldn't be enough to do anything harmful and to just relax.

I'm really wondering if I should start seeing a therapist once a week and really prioritizing my mental health. Supplements have helped me a lot, but I still struggle with being sooo sensitive to jolts, bumps, head movements, etc.
I also have some baseline cognitive fogginess and the neuropsych I went to said I had nothing wrong. I often struggle to follow/remember instructions, navigation directions, I have focusing issues sometimes (not so severe like when I was injured though and couldn't even think properly), I have a lot of issues with doing algebra in school, I feel generally more fatigued and spacey until the middle of the day. I feel like less alert and awake and "with it" than I used to be. Even emotionally I sometimes feel more flat, but nothing dramatic like when I was injured. Supplements really helped with this.
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Old 12-08-2019, 06:09 PM #2
BurritoWarrier BurritoWarrier is offline
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Hey AJ87,

I know I mentioned this before, but I've had very similar symptoms in terms of vertigo/dizziness triggered by sudden movements, and after getting treated at a sport concussion clinic and being told I had BPPV, vestibular neuritis, that all my symptoms were the result of anxiety, etc., I got a second (and third and fourth) opinion from some top neurologists. All of them diagnosed me with vestibular migraine (or migraine associated vertigo).

increase in migraine activity is SUPER common after concussion, but not all migraine symptoms are the traditional headache (though it does seem like you've had that at least once), so it seems to confuse most run-of-the-mill concussion doctors when various sensory stimuli trigger symptoms that feel really similar to your initial concussion symptoms (and maybe lack the splitting headache or zig-zag aura that most people associate with migraine). They might think you are just not "healed" yet or that you are just a head case (because not only does migraine pathology cause and exacerbate anxiety, but unhelpful doctors can perpetuate it!).

The turning point for me was when i did a telehealth appointment here: **/ and then the subsequent two opinions corroborated Dr. Kutcher's.

The document below is one that I've found to be particularly helpful in regard to explaining the mechanisms and symptoms of migraine in a concise way:

**

Kind of the hallmark of migraine is a hypersensitive nervous system (the lights are too bright, the sounds are too loud, or motion is difficult to tolerate). These stimuli can feel so strong that its physically painful. I think being, for example, light sensitive, is an easy concept to understand, but "motion sensitivity" is more than just getting sick in the car. Quick movements can feel like you're slamming your head against the wall. If you didn't know any better, you'd think you were causing brain damage--YOU'RE NOT! You are just sensitive to vestibular inputs, and the strong stimuli are exacerbating your migraine symptoms.

Some people also have a sensitivity to pain or to bumping their head. I know you've mentioned feeling pain while brushing your hair or touching your head. That is textbook migraine. It felt for months like my scalp was sunburnt. Didnt like to wear my hair up because it was so painful. I think the medical term for it is allodynia.

From what I've been told (which is consistent with what I've experienced so far), vestibular PT can be helpful, but the progress is usually slow and the results are usually incomplete. Migraine preventative medication is often the best bet. I'm on a common preventative, and it does seem to be helping some (too early to tell for sure), but it took a while to work up to a therapeutic dose and some real patience to tolerate the side effects.

Another interesting thing to note...another user posted recently that his issues with motion sensitivity started to resolve when he received treatment for low levels of testosterone. Hormone fluctuation is one of the biggest culprits behind change in migraine symptoms (for better or for worse). I though it was interesting. It did not seem like he had been diagnosed with migraine, and there's no way to know for sure, but his experience would certainly be consistent with what the medical community understands about migraine.

Sorry for rambling! Obviously no one really understands what you're going through or has all of the answers, but in case there is any overlap in what we're both dealing with, I figured I'd let you know what I've learned. Good luck!

Last edited by Jomar; 12-08-2019 at 09:18 PM. Reason: ** no linking for new members..per guidelines
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Old 12-08-2019, 07:54 PM #3
BurritoWarrier BurritoWarrier is offline
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I'm not sure my link to the Johns Hopkins patient handout works (I'm too new to be allowed to post links ), so I'll try to paste some of it below:

**copyright -  2006 Jason Rosenberg, MD


There are various scientific journals that reference the misdiagnosis of migraine symptoms after a head bump or sudden movement as concussion. I'll reiterate that Dr. Kutcher told me this is actually super common, but most doctors just don't diagnose it correctly.

Last edited by Jomar; 12-08-2019 at 09:24 PM. Reason: Edited per copyright rules no copy/paste from copyrighted sites
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Old 12-16-2019, 03:34 AM #4
AlmondJoy87 AlmondJoy87 is offline
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Thank you for the detailed and well thought out response! My family does have migraine sufferers. That’s interesting to know the correlation.
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Old 12-16-2019, 03:36 AM #5
AlmondJoy87 AlmondJoy87 is offline
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I also have polycystic ovary syndrome. I’ve had a history with hormone and testosterone problems specifically for years now.
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