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


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Old 04-12-2020, 02:16 AM #11
LostSoul88 LostSoul88 is offline
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Ok, thank you. It suddenly feels like every move somehow rattles my brain and gives me symptoms. So you mean that it is not damaging my brain? I don't leave my bed anymore because of this. When I do, I walk and move in slow motion.
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Old 04-12-2020, 09:38 AM #12
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LostSoul,

You are describing a very specific symptom that I have experienced before. There are a few old threads on this forum where people describe the sensation in detail. I'll try to find them and link them, but people usually describe it as "it feels like my brain is banging around it my head" or something to that effect. Very disorienting feeling, and it's very easy to worry that it can't be healthy to be experiencing THAT much discomfort just from walking, and then your anxiety shoots up, which may or may not cause evendors more symptoms (as Mark mentioned).

I went to great lengths to figure out what was causing this for me, and ended up paying a lot of money to see some of the best concussion docs in the country because I just wanted answers. It was driving me nuts. I'll let you know what I learned.

First and foremost, you can't actually feel your brain--it's not possible, so the sensations you are feeling are not actually your brain banging around in there.

Remember in normal life when you would go to an amusement park and ride on a rollercoaster? When you would crest the top of a hill and then go into a drop you would feel a free-fall sensation in your head. I would explain this as almost like a pulling or a pressure sensation on top of the head (opposite to the direction of movement). This sensation isn't caused from your brain pressing against the top of your skull, it's a sensation created by the nerve cells in your skull from the signals sent by your vestibular system (the two organs within it that process linear acceleration, to be exact).

Sometimes, the vestibular system can become more sensitive than it should be (variety of ways this can happen--I'll discuss my specific cause later). In the case of the organs that measure linear acceleration, if those signals are getting amplified in the brain, say, after a concussion, well, now you might be getting those rollercoaster sensations just from daily activities.

Imagine if every step you took it felt like you were shooting up and then shooting back down--changing direction so suddenly and violently. It makes one feel almost like there's a bowling ball bouncing around in their skull. It can be extremely uncomfortable and disorienting. BUT the important thing to note is.. .these are just sensations, and you are not causing permanent brain damage--no matter how horrendous you feel (trust me, I've been there).

Now, I'm not a doctor, so I can't diagnose you, but the "good" neurologists I saw about this all said that this is almost always a migraine symptom. Which really drove me nuts at first because I was like, "I have this CONSTANTLY, and I don't have traditional headache, etc.", but after learning more about migraine as a disorder, I've accepted it.

Migraine is a super broad disorder (that is common after head injuries). Symptoms can be acute OR chronic, can occur with OR without headache, and vestibular symptoms can actually play a huge role in migraine.

Kind of the hallmark of migraine is "sensory sensitivities" as they say. Common would be light and sound, but they can be anything. Smell, and even sensitivity to movement. The neurologist explained it to me like this: Think of the thalamus as a series of gain switches. All of your sensory inputs run through there, and your brain has the ability to turn the "volume" up and down on them. In migraine, a lot of times, some of those gain switches get turned way up and stuck there.

Unfortunately, migraneurs sometimes get in this cycle where, say, for example, bright lights trigger new migraine episodes for them, but each new migraine episode makes them more and more sensitive to bight lights. You can probably see where I'm going with this. This sometimes happens to people who have the sensitivity to movement, and that is the case for me. Got myself in a few holes that it took a while to dig out of

But i guarantee you, this symptom IS beatable in time. It just takes some persistance. There are a lot of good resources once you start seeing a good doctor, get a handle on what your triggers are, etc. Vestibular PT has really helped me. There are mIgraine med that can help that I'm currently trialing.

Anyway, not trying to diagnose you on the internet. I'm not a doctor, and please see one, but it's been a while since I've seen someone post such a spot-on similar description to the symptom I spent so many years and $$ trying to uncrack, so I thought I'd share what I know. Please message me if you want more info. I can send you the names of the doctors I saw.
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Old 04-12-2020, 11:31 AM #13
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Thanks for your post! However, I did for sure have another concussion from my shadow boxing. There are a number of new symptoms and all of the previous have increased greatly in intensity. I am now sleeping for around 20 hours per day. Unable to get up because of the fatigue. Guess my life is over for real now.
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Old 04-12-2020, 11:57 AM #14
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I don't know if I'm able to post links or not, but i will try below. It's very old, but the way the user "Klaus" had described this symptom was really similar to the way I had experienced it, and I think it helped me a lot early on to read through the way he wrote about his experience (even though he never got to the point of finding answers). It might be helpful to read through.

Sensitive to jolting - information?

There is a lot of talk about anxiety on this forum (probably because a lot of people have it, and I known a lot of people have some fear of hitting their head and stuff, which I can understand is unhealthy), but this particular symptom is different. It particularly terrible because it, understandably, can CAUSE the patient a lot of anxiety because it is just so disturbing (as a lot of vestibular symptoms are), which can then make it seem to a run-of-the-mill doctor or people on an online forum that the person is having these symptoms AS A RESULT of an anxiety attack, which is just not necessarily the case.

It can be really disheartening, when you get to the point where you've lived with this symptom for a number of years, through happy times and sad times, etc. to be told it's an anxiety attack. Wouldn't it be get worse when I'm stressed? Wouldn't it go away when I'm happy? What about the headaches? Why does all motion seem amplified? How could I imagine that for 4 years when I never expected that symptom and I'm not an overly anxious person? To me it seemed like being told I had imagined the time my hip broke because of anxiety. It felt the same level of real.

To finally get a real diagnosis and understand the mechanisms of what was really going on was incredibly freeing for me. I stopped really needing the CBT that had been prescribed to me. Ironically, I realized that the main reason I needed it was to cope with the fact that some of my doctors were telling me I wasn't getting better because I had an anxiety problem. I had been spending all of my sessions venting about that.

I guess I'm sharing this so that folks know just how damaging it can be to be told a symptom is the result of anxiety when it actually isn't, ESPECIALLY this symptom, if the user is really going through what I went through. I would not wish this on my worst enemy. And being told that can actually have the opposite of the desired effect and increase anxiety because now you're not sure how the hell you are ever supposed to figure out how to get better.
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Old 04-12-2020, 01:07 PM #15
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Quote:
Originally Posted by LostSoul88 View Post
Thanks for your post! However, I did for sure have another concussion from my shadow boxing. There are a number of new symptoms and all of the previous have increased greatly in intensity. I am now sleeping for around 20 hours per day. Unable to get up because of the fatigue. Guess my life is over for real now.
Much more likely that what you are experiencing is a migraine attack and not a new concussion. I was not there for your boxing, but it takes A LOT of force to physically stretch the nerve cells in the brain enough to cause a concussion. If you have what I have, sudden movements can trigger an overload of a vestibular input that causes a migraine attack that can honestly be even MORE miserable than a concussion (but it is not a concussion, and you would not have any long-term brain damage). Please see a headache specialist, vestibular specialist, etc. to get checked out.

I, as well as some of my doctors, was convinced I was getting repeat concussions for years. They were migraine attacks. You need to find out if this is the case for you because there are ways you can treat them. There are abortive and preventative meds you can take, along with vestibular PT you can do to reduce your sensitivity over time.
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Old 04-12-2020, 08:44 PM #16
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As I said a number of times. you need a vestibular assessment by a vestibular specialist, not a PCP or general physical therapist.
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Old 04-13-2020, 08:49 AM #17
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Quote:
Originally Posted by Mark in Idaho View Post
As I said a number of times. you need a vestibular assessment by a vestibular specialist, not a PCP or general physical therapist.
I will try to find one. I'm just scared that the exercises will give me another concussion.

Anyone tried antidepressants while having PCS? I had a severe reaction to Mirtazapine which left me with anhedonia, emotional blunting and fatigue. It's hell on earth, I cannot feel joy, love, or the anxiety/stress response. It was over a month ago and I only took 1 pill. Cannot cry or laugh and the world around me is just gray and flat.. The people I love around me, have become strangers, it is so sad and I feel so alone. I left my girlfriend, without feeling anything at all, even thou I know I loved her. I am constantly numb, before this, I was highly emotional and could feel intense emotions.

My brain is so ****** up, all because of a light bump to my head and 1 pill of the Mirtazapine poision. Sorry, just needed to vent. I am truly living in hell and it feels like no one believes me anymore.. I can only feel deep despair and pain. I am screaming inside, but all my emotions and bodily sensations have been suffocated, I am like a zombie, on top of dealing with PCS. It's a daily struggle to avoid ending my life. I used to be super happy, witty, social and emotional.
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Old 04-13-2020, 01:18 PM #18
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Info for anyone that is seriously struggling---

National Suicide Prevention Lifeline
1-800-273-8255

Lifeline

suicide hotline - Google Search


Explore the sticky threads here, and use the site search for specific keywords , concerns, symptoms..
A lot of info to be found in past posts..
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Old 04-13-2020, 01:34 PM #19
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Sometimes a different dr is needed to re evaluate, some docs are good and some are not..

Bumping your head on a cabinet could have misaligned your c1 c2 or caused some soft tissue injury. These can create symptoms also..but they are treatable..

check out - www.upcspine.com - Google Search - the symptoms section..
Also the Nucca info


Eat healthy, avoid junk foods/processed foods, pop, energy drinks, and of course smokes, booze & drugs.
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Old 04-13-2020, 05:11 PM #20
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Quote:
Originally Posted by LostSoul88 View Post
I will try to find one. I'm just scared that the exercises will give me another concussion.
It is not physically possible to get a concussion from vestibular physical therapy exercises (it requires that physical stretching of the nerve cells in the brain, remember? )

It IS possible to trigger a migraine attack (which is more likely the source of your current living hell than a new concussion) from vestibular physical therapy exercises (this actually did happen to me once because of a PT who didn't actually understand my condition), but correct PT is all about controlled exposure. So you would only be doing exercises to elicit very slight amounts of discomfort in order to train the brain to "turn down the gain" on your sensory inputs. Doing proper PT you would be nowhere near the sensory overload needed to trigger a new migraine attack.

Please don't give up. I know you feel like you're in hell. Trust me--I've been there. If you have what I have the attacks are so miserable that you just dread even being awake. The dizziness, the nausea, the fatigue, etc. BUT please know that these symptoms resolve. They are reversible. There are treatments. This is temporary. There is a life worth living on the other side of this.
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