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11 Things Doctors Don't Tell You About a TBI and PCS

Ellison is a TBI patient who is working hard and hoping for a full recovery while hoping to raise awareness for TBIs and PCS.

My Traumatic Brain Injury (TBI) Story

It seemed bad the day it happened, obviously. I landed in the ER right away. They diagnosed me with a traumatic brain injury (TBI)/concussion, gave me some pills for the pain in my head and neck, and sent me on my way.

The problem is that the worst of my symptoms developed a few days later. I blacked out a couple of times and began having bad vertigo and dizziness. I then fell because I couldn't keep myself balanced.

Of course, back to the ER I went, and they referred me to neurology. This leads me to the first thing the doctors don't tell you.

Ice pack on the head, heating pad around the neck is my favorite thing these days. I use that combination multiple times a day. If you have bad headaches or neck aches you should definitely try it!

Ice pack on the head, heating pad around the neck is my favorite thing these days. I use that combination multiple times a day. If you have bad headaches or neck aches you should definitely try it!

1. You Need to Find a Neurologist Who Specializes in Traumatic Brain Injuries

The first neurologist I saw had never had a patient with post-concussive syndrome (PCS). He was totally taken aback by the fact that I couldn't walk without a walker, had vision issues, and had migraine headaches.

He seemed like a legit 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 a TBI. Obviously, I should have thought about looking for that sooner, but I felt terrible, and I trusted that the doctor knew best.

2. Even a 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 a TBI. They weren't able to give me a timeline of when to expect my symptoms to be gone—or even any idea of if/when the symptoms become permanent.

I go every four weeks; they evaluate my progress; make changes in my medication if necessary; send me on my way for another evaluation in a month.

The one thing that they were 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.

Sunglasses, sometimes even inside, will become one of your new favorite things if you have a traumatic brain injury or post-concussive syndrome.

Sunglasses, sometimes even inside, will become one of your new favorite things if you have a traumatic brain injury or post-concussive syndrome.

3. 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 fortunate that I found mine on the first try.

You need to find someone with who you feel comfortable. 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 to show you 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 on 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. My PT is amazing and learned quickly that I thought I could push myself through everything. This just isn't the case with TBI. He found a way to structure my lessons to remind 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.

Working on the recumbent bike at home with my emotional support goat!

Working on the recumbent bike at home with my emotional support goat!

4. Find a Neurologist Who Specializes in Headaches Early on

I have had some version of a headache since my accident—everything from mild pain to a full-blown 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 I found one who took my insurance and scheduled the appointment, it was so far out. I still haven't seen her yet.

5. The Emotional Toll Can Be Just as Bad as the Physical One

I had anxiety before I got hurt and was already taking anti-anxiety meds and saw a talk therapist that I went to weekly.

Going from being 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. But I also realize that 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 provide you with the coping skills you need to fight the mental battle of post-concussive syndrome will be a big help.

Cain was a bottle baby goat I was raising at the time I had the accident. He became my emotional support animal. The sweetest little goat ever.

Cain was a bottle baby goat I was raising at the time I had the accident. He became my emotional support animal. The sweetest little goat ever.

6. You Will Have Both Good and Bad Days

Some days are going to be much easier than others, physically and mentally. There will be days where your symptoms will kick your butt, and it will be all you can do to get out of bed. There will also be times 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 overdo it, there will be consequences. I have had days where I felt good but did too much and ended up having to have two "crash days" 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.

7. Don't Isolate Yourself

No doctor ever told me this, and I wish they would have. There will be days where you feel bad and 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.

Don't isolate yourself. You may feel like you just want to be alone, but it will just make you more anxious and depressed. Spend time with the people who love you.

Don't isolate yourself. You may feel like you just want to be alone, but it will just make you more anxious and depressed. Spend time with the people who love you.

8. 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, you will still be able to participate in some of your hobbies. If not, try to find something new that interests 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 for elderly people, and another for those with depression. You would be surprised how spreading positive vibes—even to total strangers—can really lift your spirits.

Maybe some of the things you have always loved still be done with some modifications. I love fishing. Once I figured out how to get myself safely down the pier and onto the boat, I discovered that I could fish sitting down. The fact that I can't walk doesn't matter! Maybe some of your hobbies are like that—you still can do them with just a few modifications!

I can still fish!

I can still fish!

9. Write Everything Down

Some days, you will feel like you are thinking clearly; other times, it will feel like you can't get anything straight.

Write down all your appointments and even other reminders like when to take medications or make a certain phone call. Writing things down helps ensure you take care of everything you need to but will also make you feel good when you can check things off your list! You will be able to look back and see how much you accomplished!

I have a checklist on my calendar. I also have a section where I record what I did that day. 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, 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.

10. 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 it anymore.

Try to remember that 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, you have a good support system to stand behind you and help you out.

The first time I made it out to the barn to see my horse, using my walker. It was pretty emotional, a personal triumph.

The first time I made it out to the barn to see my horse, using my walker. It was pretty emotional, a personal triumph.

11. 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 need someone to lend an ear.

This content is accurate and true to the best of the author’s knowledge and does not substitute for diagnosis, prognosis, treatment, prescription, and/or dietary advice from a licensed health professional. Drugs, supplements, and natural remedies may have dangerous side effects. If pregnant or nursing, consult with a qualified provider on an individual basis. Seek immediate help if you are experiencing a medical emergency.

Comments

Ellison Hartley (author) from Maryland, USA on October 10, 2018:

Thank you so much for your kind words! It means a lot to me. Thank you again for taking the time to read my article. I hope it will bring awareness and help others going through the same thing.

Audrey Hunt from Idyllwild Ca. on October 10, 2018:

I'm sorry that you've struggled with this health problem for so long. You're young and beautiful and sometimes life just isn't fair. I'm glad you've shared your story. People need to be educated and aware of this illness. Love your photos - especially the one with the darling goat as well as you with your horse.

My best to you. Stay strong!