What the Doctors Don't Tell You About TBI and PCS
My TBI Story
It seemed bad the day it happened, obviously, I was in the ER right away. They diagnosed me as a TBI/concussion. Gave me some pills for the pain in my head and neck and sent me on my way.
The problem is, the worst of my symptoms developed a few days later. I blacked out a couple times, began having bad vertigo and dizziness. Then the worst part falling because I couldn't keep myself balanced.
Of course back to the ER I went and then they referred me to neurology. Which leads me to the first thing the doctors don't tell you.
You Need To Find A Neurologist That Specializes In TBI
The first neurologist I went to obviously had never had a patient with post-concussive syndrome. He was totally taken aback by the fact that I couldn't walk without a walker, had vision issues and was still having migraine strength headaches.
He seemed like a legit enough doctor, but after wasting two months seeing him multiple times with no real results or answers, he told me he could refer me to someone who specializes in TBI. Obviously, I should have thought about looking for that sooner... but I felt terrible, and I trusted that the doctor knew best.
Even The Specialist Won't Be Able To Give You Black and White Answers
I was so hopeful when I found a TBI program with a whole team of doctors that they would have some answers for me. That they would tell me to take this medicine and do X, Y, Z and you should be better in X number of days.
I sure was disappointed, I learned quickly that there are no straight answers when it comes to TBI. They weren't able to give me timelines of when to expect my symptoms to be gone, or even any timeline to tell me that when it gets to a certain point that I'm probably stuck with them.
I go every four weeks, they evaluate my progress, make changes in my medication if necessary, and send me on my way for another evaluation in a month.
The one thing that they are able to do that made me feel better, was tell me that they have seen this in other people before. I had been given the impression by the first neurologist that post-concussive syndrome was practically unheard of. They clarified that it was not and that people like myself who have had more than one concussion over the years are more prone to it.
You Need Vestibular Therapy, And You Need To Love Your Therapist
You don't just need to find one, you need to find the right one for you. I'm very lucky, I found mine on the first try.
You need to find someone who you feel comfortable with. Your PT is going to be one of your main sources of inspiration when the doctor can't give you answers. They see you more regularly and will be able to encourage you when you need it with how far you have come. Sometimes it will feel like you still have a million miles to go. You need to find someone who will remind you to look back to where you started from and see how far you have come. Focusing how far you have come instead of how far you still have to go will help.
You need to find a PT that will get to know you and how you think and work. As I side my PT is amazing, he figured me out from the beginning. He learned quickly that I thought I could push myself through everything. Which just isn't the case with TBI. He found a way to structure my lessons that reminds me constantly to take breaks and to be aware of how I'm feeling before I overdo it and end up doing myself in for the day.
Find A Headache Specialist Early On
I have had some version of a headache since my accident. Anything from mild to a migraine. My doctors at the TBI center were handling my medication for that, but finally said I need to see someone who specializes in headaches.
By the time they said that and I found one who took my insurance and scheduled the appointment, it was so far out. I still haven't actually seen her yet.
The Emotional Toll Is Almost As Bad Or Worse Than The Physical One
I had anxiety before I got hurt and was already taking anxiety meds and had a talk therapist that I went to weekly.
Going from being super healthy and active, always doing things and not asking for help, to the state I'm in now is hard to take. I feel sick all the time, I feel like I have more reasons than ever to be anxious. I worry about if I will ever get back to normal. Then realize I have to focus on accepting new normals as they come because every day varies when dealing with brain injury.
If you do not already have a talk therapist, you should get one. Hopefully, they can give you coping strategies so that you don't get too anxious or depressed. Keeping your head in a positive space is hard in this type of situation, but it is so important. You have to think positive and keep on keeping on, even on the hard days. Having a professional who can help with giving you the skills you need to fight the mental battle of the post-concussive syndrome will be a big help.
You Will Have Extreme Good Days As Well As Extreme Bad Days
Some days are going to be way easier than others. Physically and mentally, it is like a roller coaster. Some days your symptoms will kick your butt and it will be all you can do to get out of bed. Sometimes you will have made big plans and have to change them because you just can't do it.
Other days you will feel pretty okay, considering what you are going through. Those days are hard as well though because you are constantly trying to make sure you don't overdo it.
I learned the hard way that if you try to push through and over do it with brain injury it just doesn't work. I have had days where I felt good, did too much then ended up having to have two "crash days" as I call them to recover.
The trick is learning to balance your activity level and plan according to how you feel on that given day. If you wake up feeling bad you might have to change your plans and that's okay. It really is a guessing game trying to figure out how to get stronger without overdoing it and losing ground.
Don't Isolate Yourself
No doctor ever told me this and I wish they would have. When you feel bad and you are embarrassed by not being able to do the things you normally do.
I was isolating myself and I didn't even realize it. Which just made it seem harder to get back out into the world and do normal things after locking myself away.
Even if you don't feel well enough to go out and do things, have a friend over to watch a movie or something. Don't sit alone and let yourself get depressed and anxious.
You Need To Find New Hobbies
Part of accepting new normals is finding new hobbies that you can do. Things to distract you from the crappiness of your situation.
Hopefully, some of your hobbies you will still be able to do. If not, try to find something new to interest you. I started writing more, got brave and started a blog. I started writing letters for a few different charities. One for deployed soldiers, one or elderly people, and another to fight depression. You would be surprised how spreading positive vibes, even to total strangers can really lift your spirits.
Maybe some things you have always loved, you can still do with some modifications. I love fishing, once I figured out how to get myself safely down the pier and onto the boat I can fish sitting down. The fact that I can't walk doesn't matter! Maybe some of your hobbies are like that, maybe you still can do them with just a few modifications!
Write Everything Down
Some days you will feel like you are thinking clear as crystal, other times it will feel like you can't get anything straight.
Write down all your appointments. Not just appointments, even other reminders like to take your medications or make a certain phone call. Writing things down helps make sure you take care of everything you need to, but also will make you feel good when you can check things off your list! You will be able to look back and see how much you have gotten done.
I have a checklist on my calendar. Then I also have a section where I record what I did that day besides the checklist. This makes me feel a lot less useless! Also, on your calendar, you can monitor how you are feeling right there on the same page as you recorded what you did that day, which will help you to make sure you aren't overdoing it. Hopefully, it will also help you see a pattern of your activity level increasing and your symptoms still being bearable.
People Won't Understand What You Are Going Through
Don't take it personally. It is hard to make people understand how much a TBI changes you and affects every aspect of your life. I don't really try to explain anymore.
Try to remember when people are asking a lot of questions or making comments they are probably doing it from a good-hearted place. Despite how annoying it may seem!
Hopefully, if you are going through TBI rehabilitation and post-concussive system you have a good support system to stand behind you and help you out.
You Are Not Alone!
Though it may seem frustrating that doctors can't give us clear answers to our questions and progress seems slow, you are not alone. Hopefully, some of my suggestions will help you. Thank goodness for the doctors, we certainly are grateful for them.
Sometimes though, what you really need is to hear from someone else who is going through the same thing you are. I'm here for anyone who might be that needs someone to lend an ear.