[BeanJean]

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