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


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Old 03-06-2024, 03:15 AM #1
randomwordsfornot randomwordsfornot is offline
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randomwordsfornot randomwordsfornot is offline
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Unhappy I need some hope and emotional support

I need some emotional support for my TBI/PCS journey. Some background:
Few of head injuries from 2016-2020. After each one the recovery was longer, but never more than 2 weeks. Then, I went running...and got a nasty long lasting headache. Then headaches would get triggered, go away, come back. Eventually they came back 24/7.

After a couple of years of running to neuros, finally got it diagnosed as migraines triggered by visual stimulation. Then, I had hope! And could manage triggers! I was migraine free for over a year! Finally, this was behind me and I could look forward to a full life...until a month ago. They came back, not sure why, no obvious trigger. Not so strong, not so bad. But the past week, they've gotten much worse. I had to drive for hours to see a specialist (other issue) and...when I got home, headaches were much stronger and have stayed that way. If I can't drive, it's a pretty limiting life but I can manage. But now I'm also seeing that computer screens that move too fast are also a bit much. I work with computers so if I can't use one, I can't work. It's scary.

I have 0 family support (last time I called when I was sick with a fever and going to a hospital, got an earful about why I wasn't going to an urgent care).

Before, I had hope because it was a one time thing and only triggered by unusual circumstances. But now, it's chronic and seems like it can strike at any time and be debilitating. Even if I'm symptom free...who knows when it'll strike next.

In particular, I'm afraid of not being capable as a husband or father. I'm trying to get married, but I feel so useless and helpless if I can't reliably do basic things like drive a car. What will happen if I have another episode and we need to drive to the store to buy food? Can I raise kids emotionally healthy children if I'm constantly tired and in pain from the headaches?

If there are any fathers who've managed with long term fallout, I'd love to hear your stories about how you still were a great husband/father despite this difficulty.
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Old 03-07-2024, 12:38 AM #2
Mark in Idaho Mark in Idaho is offline
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Mark in Idaho Mark in Idaho is offline
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I've lived with varying degrees of mTBI for 60 years with many concussions and mTBI events since.

My first impression is you expect doctors to fix you. That is rarely the case, especially with neuros. I've never gone to the doctor for a fever. Maybe that is a generational thing.

You only mention headaches but nothing else. How is your sleep? Do you have any neck discomfort or limitations?

Whiplash and other cervical trauma is present in over 80% of concussions and MTBIs.

Without more information, I can't offer more help.
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Old 03-07-2024, 10:59 AM #3
randomwordsfornot randomwordsfornot is offline
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randomwordsfornot randomwordsfornot is offline
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Oof, I'm sorry to hear about the mBTIs for 60 years.

Yeah symptoms are headaches/lethargy/feeling drunk.

Sleep is good, 7-8 hours a night.
Neck is fine, no limitations.
I think I had an MRI done that showed nothing in the neck, but I can double check.
Most neuros were pretty useless, but I saw Dr Kutcher and he was fantastic.
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