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


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Old 08-18-2020, 11:08 AM #1
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Default Repeat "Concussions" From Low-Force Events? My PCS/Atypical Migraine Story

I've posted bits and pieces here and there, but I've decided to try to tell my story in a more complete way, in case it helps someone.

Initial Injury
I had a bad mountain bike crash in 2015 where I rode off a ledge, dropped 5 feet and smashed my face into a rock. I don't think there's any debate over the fact that I got a concussion from that or that that's when all of my issues started. I also went riding again a week later and got significantly worsening symptoms from a very minor fall where I did not hit my head. (for background, I was a college endurance athlete, so very stubborn and used to fighting through injuries. Also used to not giving up and seeing a million doctors until I get an answer.)

Subsequent "Episodes"
Throughout the past 5 years, I've had 5 subsequent "neurological episodes". They were all triggered by low-force events where I didn't hit my head...basically sudden movements (falling on my butt in my house, falling on my butt on ice, falling on my shoulder on ice, tripping while running, driving over a large pothole in the car). The more of these I had close together, the more sensitive I was to them. I had some bizarre and disturbing vestibular symptoms that I was convinced were related to my sensitivity to these episodes (I'll elaborate below).

Symptom Progression During an "Episode"
I noticed that the symptom progression during each of my episodes was really similar for all 5. There was kind of the same initial symptoms of fogginess and blurry vision. Then I would get nausea, ear popping, confusion, head/eye pressure, dizziness, etc. These symptoms tend to peak at 24-40 hours after the trigger and then have calmed down a bit by 48 hours. I call this the "Acute" phase.

Then there are what I call the "Chronic" symptoms. Which I haven't been able to fully shake since my initial accident, but they get worse every time I get a new episode and kind of slowly get better over time between them. These would be severe sinus pain, blurry vision, and "sensitivity to motion"

What is "Sensitivity to Motion?"

It took me forever to figure out what was actually going on here. I used to google "brain is sloshing around in head", "head sensitive to motion", "brain damage from bumpy car rides", "head hurts during bumpy car rides".

After a lot of experimentation with movements, I realized what was actually happening was that I was having a normal sensation in response to a linear acceleration---just REALLY amplified. And instead of more of a pressure sensation, sometimes I was experiencing it as pain (and sometimes that pain was lingering after the motion was completed...resulting in headache).

I can't begin to describe how disturbing this symptom was. I've read about people who can hear themselves blink. I can imagine that would be similarly awful. At its worst, when I would just lift my arm up to put my shirt on, it felt like my whole head was shaking violently just from the muscle contractions from that small arm movement. Any movement at all was exhausting. Walking gave me terrible headaches.

So what is your diagnosis?
I initially just went to a sports med clinic where they just kept diagnosing me with concussions and told me I was really sensitive. Then, when I had a lot of episodes right in a row from lower and lower force events, they started telling me my symptoms weren't real and that I was having panic attacks, as the events weren't enough force for a concussion, and they didn't know what else it could be.

I tried everything. I meditated. I went to counseling. I just grew more and more frustrated that I was trying all of these things and that I couldn't shed my symptoms. I kept having "episodes" because my doctors told me I was "fine" and just to keep driving and doing my normal life, which kept triggering episodes. Eventually, my doziness got so bad that it was very noticeable, and my doctors noticed there was something going on other than a panic attack. They gave me a note to work from home and let me stop driving.

At this point, I knew my doctors were missing something, but my cognitive function was so bad, that it was difficult for me to research other options. I eventually had a friend lead me to Dr. Jeffrey Kutcher, who consults for several pro sports leagues and is very well-renowned. He does skype appointments, so I set one up.

I concurrently filed a claim with a second opinion service through my employer. Both opinions came back identical--I had a migraine disorder. Dr. Kutcher explained this was very common. It's also commonly misdiagnosed. He says he sees it a lot in NHL players. They might just fall on the ice but not hit their head. They'll get "concussion symptoms". Their doctors will be confused. What is actually happening is they have a migraine attack.

He explained that migraine is such a broader disorder than people realize. You don't have to have headache as your primary symptom (or even at all). The symptoms can be both acute and chronic. Dizziness is a far more common migraine symptom than people realize (look up "vestibular migraine"), and the symptoms can mimic a concussion perfectly. There is no way to tell the difference besides analyzing the trigger.

All a concussion is is an energy crisis in the brain. Your nerve cells get stretched which causes ions to rush into your nerve cells that shouldn't be there. Your brain then spends the next several days trying to sort out that mess (which is why you feel confused and tired initially). It physically takes A LOT of force to stretch those cells, though. It just does. And there is a lot of research to prove that.

Now, a migraine causes a really similar "electrical storm" in the brain. It just has vary different triggers. And the triggers can really vary wildly from person to person. But a common way to trigger a migraine is sensory overload (the lights are too bright, the sounds are too loud....the motion is too great....). This is where it gets confusing. Your vestibular system is actually just 5 accelerometers in each ear. If your brain is really sensitive to those acceleration inputs, even if the G-force is WAY too low to give you a concussion, it could very well be enough to give you a SENSORY overload and trigger a migraine. This is what Dr. Kutcher explained to me.

He said it's so common for people with migraine to perceive various sensory inputs in an amplified way. basically, there are a series of gain switches in your thalamus where your brain can adjust the volume on various senses. In migraine, a lot of times these get turned way up and stuck there. That is what was happening to me. The only ways to turn the gain switches back down are with targeted exposure (making your brain A LITTLE uncomfortable to teach it to turn the gain down--without overloading it and triggering and episode) or finding an effective migraine medication.

Treatments Tried
Targeted exposure has actually been really effective for me in reducing the motion sensitivity, albeit the progress is slow. And every since I figured out what is actually happening, I've been able to avoid having a new "episode" by pushing too far, since I understand the mechanism behind it now.

I have tried two medications. The first was Nortriptyline. I worked up to 75mg/day and stayed on it for 8 weeks. I had considerable side effects and saw no improvement on it ( and some regression).

The second was Topiramate. I worked up to 100mg/day, and I saw significant improvement in my facial pain (which is normally very severe) but no change in the motion sensitivity. I had less side effects. I tried going off of it and the facial pain came back, so I am currently working my way back up on it. I also use a device called Cefaley, which is a physical nerve simulator, and I also believe this has had a slight contribution to pain reduction.

There are a few more drugs I haven't tried that I still plan to. They say each drug has a 50% chance of giving 50% symptom reduction, so I am still hopeful I can find something that could help reduce the primary symptom of motion sensitivity.

I know this was REALLY long and a bit scattered, and I still left a lot out. Hopefully it's helpful to someone. If anyone has any other questions, I would be happy to answer them.
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Old 08-18-2020, 12:49 PM #2
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Some links to the things that helped me most:

A very old thread in which the user "Klaus" describes my "motion sensitivity" symptoms perfectly. It was the only account I every read that was perfectly identical to mine. He never seemed to get an answer but seemed to avoid new injury long enough to become functional through a kind of natural form of "targeted exposure": Sensitive to jolting - information?

Dr. Kutcher's Clinic: Jeffrey Kutcher, MD, FAAN | Kutcher Clinic

Johns Hopkins is one of the leaders in Migraine treatment, and this is their patient handout: https://www.hopkinsmedicine.org/otol...%20handout.pdf

Reading this book was what finally sold me on Dr. Kutcher's diagnosis. It made everything I'd ever gone through make sense. Written by one of the most famous migraine doctors ever (now retired) a good, concise explanation of the condition in plain English: Robot Check

*admin edit per guidelines on other forums* (Link ok to helpful thread/post but not just for a main forum)

Last edited by Chemar; 08-18-2020 at 03:31 PM.
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Old 08-27-2020, 02:52 PM #3
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I also have extreme head sensitivities from multiple concussions and multiple head bumps. I agree that targeted exposure or Expose & Recover is the best approach. That's why I keep saying to gradually increase your activity level while being careful to not overdo-it.

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Old 08-27-2020, 02:55 PM #4
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You describe the cause as being amplified nerve sensory signals and I think inflammation causes the overamplification.

If you've had multiple concussions, even if the secondary impacts were minor, then the brain's ability to regulate inflammation becomes compromised and it pumps out too much inflammation in response to a given stressor. Inflammation is what causes the symptoms so that's why you experience increased sensitivities or intense symptoms following a head bump or over-exerting yourself.

Sure the impact force from the secondary impacts was not enough to do any damage, but it was enough to trigger an inflammation response and the resulting inflammation can do more damage and cause more symptoms than the initial impact. So calling it a panic attack or anxiety is ignorant and short-sighted.


Inflammation Seems to Underlie Concussion Symptoms
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Old 08-27-2020, 08:37 PM #5
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Drew,

Thanks for sharing your inflammation diagnosis. I'll be honest, I don't know must about it, as I've not had three neurologists confirm my migraine diagnosis, and it seems to fit my symptom profile really well. It is nice to know that the treatment is the similar, though, and has worked for you as well! Hopefully this info can help others struggling to find doctors who can help.
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Old 12-23-2021, 10:00 AM #6
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Update: Success with Maxalt

An update to my journey. I fell skiing this November and had my first one of these "migraine attacks" in 3 years. I recognized the symptom progression right away after the trigger. I immediately had head pressure, dizziness/disequilibrium, and ear pressure/popping.

I drove back to the vacation home where I was staying right away and took Maxalt, which is a migraine abortive that had been prescribed to me years ago. I took the pill exactly 30 minutes after trigger. I didn't expect it to work, but two hours later, I felt fine. The two-day symptom progression that I normally get during these attacks was halted in it's tracks.

I did not expect this to work, only because I've had only a partial response to all of the migraine preventatives that I've tried so far (and they only helped with the pain and not the underlying motion sensitivity). But it is fantastic to know that I have this tool available.

Typically, my sensitivity to motion gets worse and worse over the course of an attack and then takes 6 months to return to baseline (with my "PT" exercises) after the attack is over. I had only a very, very slight regression in motion sensitivity and no other symptoms of the attack after taking the abortive.

Generally, it's important to take the abortives "right away" for them to work, and I've found this to be true. I triggered another attack by pushing my PT exercises too far a week later, and I did not take the Maxalt right away. I explained away my (relatively obvious symptoms) as having really bad motion sickness from a car ride. By the next morning, when I has insane head pressure and finally realized I was having a migraine attack, I took the Maxalt, but it was too late.

I know this won't help everyone, but if there's anyone out there with repeat symptom exacerbation like this that could be attributed to migraine, it's really worth giving migraine treatment a shot. Having this abortive drug in my toolkit is going to be life-changing for me.

Sidenote: I bought an accelerometer that can be stuck to the body with medical adhesive. I plan to collect data from my PT exercises over time to track how much my tolerance for both acceleration and jerk improves with targeted exposure. Will update when I collect enough data for it to mean anything.
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Old 12-23-2021, 05:41 PM #7
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Glad you found an intervention. I agree that you have to take something right away to stop the cascade of inflammation that causes symptoms to return. That's why I say to take a double dose of Curcumin and Fish Oil in my previous posts.

I read that Triptans (Maxalt) reduce inflammation levels so maybe that's how it works. But whatever way you think about it, our approaches are similar.
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Old 12-23-2021, 11:13 PM #8
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Drew,

So glad that those supplements work for you! I have tried both of those (as well as many others) with no change in symptoms, but hopefully they will work for someone else, also!!!!

Triptans are the most commonly prescribed drugs to abort migraine attacks. They've been around for a while. They constrict blood vessels (and I think a few other things). They have a pretty high efficacy--much higher than any of the preventative meds, and the side effects are transient, instead of all the time, which is quite nice. Most doctors will only prescribe 11 doses per month because any more than that can actually trigger "rebound headache". Luckily, my episodes are infrequent and have a known trigger, so hoping this is a good long-term solution for me.

Triptans for Migraine Relief: What’s Available, How They Work

Will update if anything changes, in case it's helpful to anyone else. Everyone's symptom profiles and medication reactions are unique, so it's hard to tell if this will help anyone else, but I figure it's worth a try.
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Old 12-30-2021, 06:41 PM #9
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Is this damage permanent?

Quote:
Originally Posted by DrewDigital View Post
You describe the cause as being amplified nerve sensory signals and I think inflammation causes the overamplification.

If you've had multiple concussions, even if the secondary impacts were minor, then the brain's ability to regulate inflammation becomes compromised and it pumps out too much inflammation in response to a given stressor. Inflammation is what causes the symptoms so that's why you experience increased sensitivities or intense symptoms following a head bump or over-exerting yourself.

Sure the impact force from the secondary impacts was not enough to do any damage, but it was enough to trigger an inflammation response and the resulting inflammation can do more damage and cause more symptoms than the initial impact. So calling it a panic attack or anxiety is ignorant and short-sighted.


Inflammation Seems to Underlie Concussion Symptoms
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Old 01-01-2022, 02:27 PM #10
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Ben,

No. This "damage" is not permanent. 30% of the world's population report experiencing migraine symptoms. These symptoms are triggered by a number of environments factors (depending on the individual) and, although they can be debilitating when you are experiencing them, do not cause any permanent structural "damage" to the brain. Many people get better once these symptoms are addressed and treated and live long, happy, fulfilling lives. If everyone who experienced migraine symptoms became a vegetable in their 50's...well, let's just say it would be the biggest focus of modern medicine, and it would be all you are hearing about. Neither of which are true.

The symptoms of migraine can be so extreme in some people that they mimic a stroke (with temporary paralysis or visual disturbances), but even those people can get better with the right treatment plan.

It seems to me from your posts that you are able to live a fairly normal life (outside of sometimes crippling anxiety). You've been able to participate in a lot of activities that I would never dream of being able to do. It also seems that when you trigger symptoms (from either a panic attack, migraine, or some other neurological event), they resolve and return to baseline rather quickly. You often worry that you will need to cancel plans months in advance, but have you ever actually had a significant symptom regression that lasted months? If you haven't, I'm not entirely sure what your worries are related to.

CTE is of concern only to a very special portion of the population who gets either tackled or punched 10+ times daily, for decades in a row. A regular person might slip and fall or accidentally bump their head on something a few times a week. This is not in the same stratosphere as the extreme athletes that CTE is happening to.

Some people experience vestibular symptoms that make movement of the head uncomfortable (I have this). It can even sometimes seem like you can feel your brain move. It is important to know that it is NOT POSSIBLE to feel your brain. Any pain or movement sensations you feel are coming from nerves on the outside of your head. Those are sensations that your brain creates, based on input from sensory signals it is receiving. If you are experiencing this, I would suggest seeing someone who specializes in vestibular disorders. If you are just having panic attacks, I would suggest CBT. Either way, REAL doctors are going to be a much larger benefit to you than reassurances from random people on the internet. You have so much life to live...why waste it worrying instead of addressing your symptoms?
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