Down the Rabbit Hole

I really have no idea what to write here about my back story. I've had really a lot of nasty shots to the head over the course of my lifetime. I weren't treated none too gently as a kid by the adults in my life and I've had several nasty concussions.

I remember in middle school trying to do a backflip off a bike rack and the back of my head met the back of the wheel bar. The wheel bar won. I had a nice fat goose-egg on the back of my head.

Being the late 80's to early 90's when that happened, since my pupils remained even and whatnot, it was assumed I'd be fine. I remember it took a month to feel "normal" again.

Then on January 2, 2012, I went to take my dog out for a walk and that's all I remember. Next thing I knew, I was waking up because someone was yelling at me to wake up. I was found lying on a sheet of black ice in the parking lot of my apartment, so it's presumed that I slipped on the ice. Again I had a nice fat goose-egg on the back of my noggin.

Paramedics were called, they checked me out, and again since I was awake and coherant and not having pupil changes, they gave me the option of going to the hospital or staying home and keeping an eye on it. I chose to stay home. I had just started a semester of college that day and I had to keep up my grades or lose my unemployment, plus I didn't have insurance or a desire to deal with hospital bills.

So I went back upstairs to my apartment.

Next day I was having NO luck walking. I kept running into the walls, tripping over my own feet, and feeling like general hell. My heart-mom took me to my GP's clinic for a regular appointment. I saw another doctor since my GP wasn't available and he sent me for either an MRI or a CAT scan (can't remember which they did) to make sure I wasn't hemorrhaging into my brain.

Scan was normal and I was very aware and cognizant even if I was feeling like sh*t, so he sent me back home, told me to rest, take it easy, and come back for a followup.

I never went back for the followup. Couldn't afford to.

I didn't leave my apartment for three months and pretty much all I did was sleep, study (online college courses and my grades were still awesome!), and play World of Warcraft. I couldn't drive, so I had groceries delivered and my neighbor walked my dog. After three months, I felt stable enough to start leaving my apartment and driving short distances, and by the end of the semester in early April, I was pretty much back to normal.


I really don't know what to think.

My issues have really been going on for years.

Memory problems. Focus problems. Clumsiness. Memory resets. I've forgotten my name, phone number, and address. I've walked out into the street without looking both ways first. I've lost jobs because I can't for the life of me do anything right no matter how hard I try.

After the black ice incident, I KNOW that is definitely when the vertigo, dizziness, nausea, and killer migraines started. I had the cognitive trouble before that accident, but not the migraines.

I did have another MRI or CAT scan a year or so ago (again, can't remember which one happened then, but I know I have had both an MRI and a CAT scan) and it again turned up normal.

My neurologist said my issues were probably a psychiatric problem and that he couldn't help me.

So I got sent to a psychologist who evaled me for ADD and diagnosed me as ADD. I've since only been treated for Depression/Anxiety/PTSD.

My problems with my balance and stuff keep getting worse though. I collapse sometimes. I can't read easily. I do things that endanger my health. I feel like I'm only partially attached to my body. This is IN SPITE of how I feel emotionally. Emotionally...I actually feel great. I don't feel depressed, anxious, or fearful at all. But the physical problems keep getting worse and I have NO cognitive control over any of it.

After taking the time to write down all the weirdness I've done over the last couple of years...I realized that I had a serious problem. I took my notes to my GP and she frowned and said "I really think this sounds an awful lot like a TBI."

So now I'm starting that long process of investigation into that again and going back to the neurologist. I know that MRI and CAT scans often don't show damage, and that's all they have done before they dismissed the TBI theory before.

So they want me to get an EEG next.

I'm not looking forward to any of this.

Lauriel, the good news is that your written communication is terrific. You have created a really good set of personal observations about how a TBI (and especially several TBIs) can change a person. There are a couple of things that strike me about your story. First, it is well known that having a TBI is a risk factor for having further TBIs. Whether it is the lack of inhibition or a diminished sense of spatial awareness, or both, I'm not sure. Second, the balance problems that you mention could indicate cerebellar issues (ataxia) or problems with the vestibular system. There are balance training programs with physiotherapists that may help you compensate.

I am not all that impressed with your initial neurologist. If you can find a neuropsychologist, that could be very helpful. You should be able to get some assistance with managing your pain, as well as suggestions for therapies to help with some of the cognitive issues.

You are among friends who are experiencing many of the same issues you are. Sharing information can help lead to creative solutions for compensating for your injuries. I'm glad you are here.

Thank you Dancermom and Ninibeth! I appreciate you taking the time to comment back. I feel just beaten up and worn out and gaslighted to the point where I just want to hide under my bed and snarl at anybody who comes near my hidey hole (unless they are bringing me coffee or chocolate).

But I have got to press on and bite the bullet and go through the diagnostic tests. I really don't know much about TBI's and reading about them is very difficult. I seem able to write well but not read well (I miss being able to read books. I used to be an avid reader). Who knows, maybe it's not a TBI, maybe my PTSD is giving me horrendous Dissociative Disorder since a lot of the symptoms are the same.

I have a question: My last massive bang to my head was three years ago and I functioned better then right after I healed up than I do now. My condition has been deteriorating over time. Can symptoms just spontaneously start worsening over time without further trauma?

I'm afraid symptoms can worsen over time, Lauriel. There is something called organic brain syndrome, which basically describes a decline over time caused by an earlier trauma to the brain:

Your best defense is to live as healthily as possible and to exercise regularly. However, there could be something else going on, so getting thoroughly checked out as you are should be helpful.

Like so many things, Ninibeth, I learned about OBS from one of our members.

Ataxia is a not so fun, but I completely have faith. I am getting better everyday, in every way,,,, positive thought, throughout your brain, :) LOVE :) yourself, even with all the, dings and bangs.

Every day, and in every way, you are getting better and better. Repeat this to yourself, regardless of?

Ever try a TO-DO, list?

I wish I was able to post, the biography that I started to write, one is clean thinking, and the other is some of what else, I dabbled with. I have lived in a life of snow skiing/Boarding a lot, then I was in a MVA, 81101 in NNJ. Lived in CO for awhile, a year after college, a BA in Psychology from UDEL, Drove across country CO-NJ.

I MIGHT JUST WRITE THOUGHTS OF THINGS THAT I NEED TO do :) on a four month calendar , where you are able to erase months, and create new ones, I have wrote out, about a year already, monthly eraser board. eraser board! I am not on the computer that much, and I should get to sleep at like 3AM almost, but, IT'S MY BIRTHDAY 1-16-75, I can cry if I want to, cry if I want to :) :) :) You would SMILE :) to, if it happened to you:) not those exact lyrics, but some might have heard it. I am supremely lucky that I am a high functioning TBIer. Good Night, or Happy Birthday:)

I like your attitude, Rick. I think you are 100% right. :)

I REFUSE to let myself be defined by this. I am NOT disabled. I am differently-abled. If I can't do things the same way I did before, well then, I'll just do something else!

My life has been tough, but it's made me thick-skinned, strong, assertive, and capable. Actually most of my problems I feel are less to do with the issues of physical trauma (I am also high functioning) and more to do with dealing with a whole lot of stupid from other people. Humans are unfortunately such a bloody uncooperative and unreliable species. I'm exhausted dealing with the medical community and loathe to part with any more of my time or money on dealing with them. I try not to be jaded or cynical, but a certain amount of acknowledgement to the attitudes of society and the medical community towards us must be given. I know most everyone here reading this knows exactly what I'm talking about.

Alas, this is what must be done, so I will do what I've always done: Roll up my sleeves and plow my way through.

I am really hoping to herd my doctors into the direction of declaring me disabled so I can get on SSDI and see about obtaining and training a service dog. With those two things set, much of my independence will be able to come back and I will continue my dreams.

I'm not stopping my bucket list. :)