Hi all, I have suffered many concussions and they have finally caught up with me... I feel so lonely and helpless, so I hope that I will find others who know what I'm going through. I want to introduce myself, but I am also looking for a bit of guidance. *A heads up, this is a long post. I know that I have difficulty reading for extended periods, especially on a computer screen*

Here goes it:

I am 20 years old and up until two years ago I was an elite athlete, when concussions sidelined me once and for all. My first concussion was 4 years ago when someone smashed me in the face with their stick. I didn't lose consciousness and when I was at the ER getting stitches I wasn't presenting with any signs of a concussion. The next day when I woke up, I had all of the hallmark signs: crippling headaches, light/sound sensitivity, inability to focus, brain "fog", ringing in my ears, etc. Being immature, and stupid, I didn't tell anyone and did my best to pretend I was fine. I was not fine.

Three days later I went to play in a tournament in Florida when I got hit in the head again; not very hard, but as I'm sure you all know, it doesn't take much. Anyhow, that did a number on me and it took about 2 months for my symptoms to subside. Over the last few years, I've probably received another 6 or 7 concussions, some sports related, some were due to bad luck, and others resulted from falling and hitting my head when I was seizing. It should be noted that on one occasion I got 2 concussions on the same day. The seizures developed around 2 years ago and they have taken me on one heck of a ride.

The first seizure I had scared the crap out of me, and then they progressed to the point where I was having dozens a day and was completely incapacitated; this time last year I had to wear a helmet because I kept falling during my seizures. I spent all day everyday on the floor or in bed because those were the only places I was safe. So here is the frustrating part, I do not have epilepsy, they have done EEGs and there is no abnormal activity, so doctors have essentially thrown in the towel and written everything off as "psychological." I can't tell you the number of times I've freaked out and had meltdowns because medical professionals won't listen to me.

I did find a doctor who put me on Lamotrigine (Lamictal), which has done absolute wonders, until I got another concussion a few weeks ago. Up until this point, I was totally fine with never seeing another doctor, but I've been having some serious problems that need to be looked into- my fear is that they will once again ignore everything I have to say. Once I received the "psychological" label, doctors stopped trying to figure out what was the true cause of my seizures, blatantly ignoring telltale signs. With the recent exacerbation of symptoms, I find myself weary of going to another doctor because I don't see things going any different than the last dozen appointments.

Anyhow, I was hoping that someone here might be able to help; I'm desperate and will take any advice. All spitballing welcome. This is the list of signs/symptoms that I have experienced over the last few years, most are intermittent and some have been resolved with meds and physical therapy (I'll * those):

Babinski reflex
Cerebellar ataxia (made much worse when I close my eyes)
Dysarthria*
Hyperreflexia
Pendular reflexes
Clonus
Dystonia
Hypertonia
Spasticity
Photosensitivity
Extreme startle response
Dysdiadochokinesia (can't do rapid alternating tasks)
Intention tremor
Muscle weakness
Scanning speech*

Despite all of this, MRIs of my head and neck are clear, EEGs don't show abnormal brain activity, and nothing shows up on my CT scans. I'm just so tired and have no idea wHere to go, or what to do. Are there tests or imaging that might show where the problem is, or anything that I can do?


With sincere gratitude,
BeanJean

Welcome BeanJean.

BeanJean,

Welcome to NeuroTalk

Wow, You have been through a rough few years.

First, Only one person here is a medical professional who will understand your medical terms. the rest of us need the layman's terms.

How did you get your last concussion a few weeks ago ?

What sport did you play ? hockey, LaCrosse ?

A positive Babinski is not a diagnosis. It's just a diagnostic tool. I have had a positive Babinski for over 4 decades. It is just an indicator of a higher neurological dysfunction.

I have had seizures from time to time over the years. My neuro called them trauma induced seizures. My EEG was inconclusive. I never had a grand mal (tonic-clonic) seizure, just absence (petit mal) seizures.

Have you had a Neuro Psychological Assessment ?

See that some of your listed symptoms are just subsets of other listed symptoms.

I doubt there are any tests that will show your injury except a few that are used in research. Even when they do, they do not help with a treatment.

I am lost as to what kind of help you are looking for. We are here to help you with day to day issues but it sounds like you have been pushing the limits with doctors. What kind of a daily life do you lead ? What kind of daily activities are you involved in ?

Thank you for your prompt response! I used to play field hockey, but I also played lacrosse, softball and soccer; I was a jock, which makes things that much more difficult because now there are days when I can't even stand never mind go out and play.

My last concussion wasn't sports related, I was coming back from a conference and when I was getting my suitcase from under the GreyHound bus, I came up and smashed the back of my head on the metal door/overhang. The strange thing that I've noticed is that most times things get much worse the next morning. That night my head hurt a ton, and when I was talking with my friend on the phone I couldn't respond to the questions she was asking me, but that was about it. Then the next morning, I couldn't stand or walk. My legs would crumple beneath me.

I guess that's part of the reason I reached out to you all. I still have multiple days each week where I can barely walk and I need people to help/carry me everywhere. I'm only 20 and I fear that I've messed up my brain and I'm going to have to live with this the rest of my life, and that scares the crap out of me. Every second of every day I am terrified that something is going to hit me on the head- I live in a constant state of fear. It's like I'm afraid to live my life because there are so many unknown factors that I can't control, and with my history I can't help but think something bad is going to happen.

I am and always have been a Type-A person, so I have this unrelenting drive to find some kind of answer. I know that in all likelihood it will never happen, but I still want something to hold onto, a name, anything other than this limbo land. That's part of the fear, if I don't know what it is than I don't know if things are going to get better, how to make things better, or what will make things worse.

I'm sorry for whining right now, but this has really upset me that last few days. I don't think it's a coincidence that one of my classes is focussing on the nervous system this week.

In terms of day-to-day life, I have made enough progress that after 2 years of medical leave I'm able to be in college! Which is a huge deal! My schedule doesn't deviate much from other students, but I still feel different because of my seizures. Most days I feel "off" I describe it to my mom as being "seizury" and it's like things are lurking beneath the surface. I also get frustrated because my memory is shot and it is really difficult for me think clearly. I don't know, I'm just scared, confussed, and tired.


Thanks for listening,
BeanJean

BeanJean,

The name for your condition is Multiple Concussion Syndrome or Multiple Impact Syndrome. Basically, it refers to the prolonged symptoms that will likely follow you on and off for the rest of your life. There are things you can do to minimize the ups and downs. Read the Vitamins sticky at the top. Find the Nov 10th update. It is post 100, I think.

You likely also are suffering from a lifetime of sub-concussive impacts. They can be as dangerous as a concussion because the athlete does not take time off the field to give their brain a rest so the athlete can suffer hundreds of them a year. Heading the ball in soccer, body checks in field hockey, etc. Didn't your school/team have a concussion program ?

If you have not had enough if it scared out of you already, what can I do to scare the rest of it out of you so you give up contact sports ? Set a goal to heal up enough to be able to run. I took my conditioning from soccer and used it in a successful effort running distances in track and cross country.

You very likely have a neck issue that is making your symptoms spike. A generic chiropractor or physical therapist is probably not going to help much. It takes expert skills at the gentle diagnostics and manipulations to help the upper neck settle down and strengthen.

I gather from your screen name that you are a female. Not many female athletes come to NT with such a severe history of concussions. You may find that you need to get a serious assessment of your hormone levels, and not just female hormones. EsthersDoll has lots of good info on that.

How is school going ? What are you studying. I was pre-dental school after graduating high school with honors. I struggled my first semester and collapsed my second semester after a mild concussion the first week of class. Learning how to memorize with a dysfunction memory system is a serious challenge.

If you plan your life knowing your have an injured brain, you will still be able to accomplish much.

My best to you.

Sorry for your circumstances but welcome BeanJean. I hope you find some good support and information here. Happy to hear you have progressed enough to be in college! That IS huge! Congrats.

The unknown and uncertainty of the future is one of the hardest things for me to cope with. Try to be easy on yourself. Its a tough road.