Hi! I'm so happy I've found this resource to commune with others with PCS (Post Concussion Syndrome) mainly. I am a 44 year old, married mother of seven and grandmother of seven. I am an addictions counselor, too. I live in a very rural area, lots of ranching, horses, cows, sheep...Close enough to all sorts of recreational activities, but far enough away to be in the sticks - we don't lock our doors, even in 2007!

In terms of my PCS, my family all think I've gone nuts! Okay, maybe that's not very charitable; but it sure feels that way! (My husband is reading over my shoulder, and begs to differ - he says I'm still loved, and he has ALWAYS thought I was nuts!) No one understands, 'cause I still look the same. I got bucked off my horse six years ago, bonked my head, got knocked unconscious: witnesses tell me I talked gibberish for two minutes, then was completely silent, staring up at the sky for another two minutes (my husband is convinced I was conscious, but I have absolutely no memory of that). I'm told I flipped over the top of my horse, then landed first on the back of my shoulders, then my head whiplashed down. Last thing I remember is seeing my horse's hoof out of the corner of my right eye as I flipped over, thinking, 'Oh, s---!' Next thing I remember, someone's holding my head, providing cervical traction, I'm freezing, shaking, & someone's asking me where I am...I was ****** 'cause someone woke me from a very sound sleep! Then they told me an ambulance had been called! Then I started to struggle (I'm a cowgirl, if it ain't bleedin' and it ain't broken, you're all right!); and the person maintaining cervical traction (turned out to be my husband) told me to stay still, 'cause I WAS very definitely taking an ambulance ride! More for me to be ****** about! I admit I got somewhat verbally combative in the ambulance - I told the EMT he had only three tries at sticking me with an IV, if he was unsuccessful after three tries, that would be it - my veins roll under the best of circumstances, let alone in shock, so the poor guy had no chance! Anyway, they get me there, so X-rays, CT scan - I'm dizzier than all get out (went to the bathroom when I got left alone - boy, THAT was a trip! I've NEVER been that dizzy!) The doctor gets to me, and the nurse asks him if he wants an open line - I hollered out, 'Oh, HECK NO!' and the doctor tells me to settle down, young lady! Arrgh! They diagnosed a severe concussion, my husband tells me - some details are really fuzzy - they wanted to keep me overnight, but I wasn't going for it, so they gave me some 'scripts for Tylenol #, or something, and sent me on my way.

It's now six years out, and there are definite cognitive and emotional changes: poor ST memory, slowed mentation, my organizational skills and efficiency have gone to heck, I repeat myself all the time, or forget to tell someone something, & could swear I've told someone whatever it is..., depression reigns, anxiety manifests, vertigo happens - if I lay my head on my pillow or in a chair, putting pressure on a certain spot at the back of my head, I can fall asleep INSTANTLY - kinda' cool. I lost most of the first year after the accident - yes, I went to work, (there are pictures, I know I was there, but I have very few memories of that first year). I got on a horse one time since the accident, and got so dizzy I got right back off after one round around the arena - had to prove I wasn't scared! And I am not scared of horses - it was a freak thing, the horse wouldn't have done anything in the world to hurt me - it was a definite accident. I would LOVE to get back on a horse, but even looking down a small staircase gives me the dizzies, and that REALLY SUCKS!

The hideous part is the effect this has had on my work. My Clinical Supervisor is AWESOME, and gives me more time to complete charting & reminders for paperwork that no one else gets. But this has made me feel slow & stupid, I've even fallen to sleep at work (only once, the first week after my accident - I have clients that still give me crap about it!), and I sometimes repeat things to my clients that I've already told them, and they are incredibly understanding & patient...The upside is that I now have great empathy for those who have PCS, and have turned out to be an incredibly good therapist for them (they say).

I feel like I'm probably as good as I'm going to get, this many years post-concussion....I have accommodated with "To Do" Lists, elaborate documentation, checklists at work (that are ever-changing, which doesn't always help!), lists & calendars, etc. I still can't remember where I put this month's bills; but I just send them in when I find them, or if someone calls to tell me I forgot to pay up...even the month-to-month bills get forgotten - you'd think I'd think about it when I turn on the stove or the lights....see what I mean about feeling stupid?! I used to be so quick, so all over it, so organized, so much FUN! I even forget to grocery shop! But, at least, most of the time I can tell myself it's something I really can live with - my life remains rich, joyful and beautiful, overall. What have I got to gripe about? My family & friends have remained with me & my colleagues have, as well (I know there are times they'd love to strangle me). I am truly blessed to be alive, walking & talking. So the depression and anxiety don't always get to me, unless I'm thinking in a depressive or anxious way. I can be awfully perseverative for someone who can't remember what she said two hours ago!

I really want to know what treatments might be had, or tests that can be performed to see how I might be able to benefit from some type of therapy - I'm willing to work it - but my insurance has to cover it! Or, at least, if I might be able to expect to get some of my old cognitive abilities back (wouldn't that be nice?! I can dream!).
But, mostly, I will just appreciate the support of other people who know EXACTLY what I'm talking about!

Hi Tinkerbell and welcome to NeuroTalk. You'll find a lot of great people here to share information with. I don't know "exactly" what you're talking about but I sure enjoyed your syle in the telling of it.

Here is the link to our PCS forum.

http://neurotalk.psychcentral.com/forumdisplay.php?f=92

Hiya, Tink!

Welcome to NeuroTalk!

I see that Alffe has provided you with a link, so let us know if you need a hand with anything.

I do know exactly were you are coming from in lots of the things you are saying. And I can tell you one of the things I would start with first.

I would look for a neurologist that specializes in balance issues.

Its a neurologist that will look for central abnormalities and work to get you to a vestibular physical therapist. Who will then help you to work on the dizziness, balance and will help you learn to adapt to the problems or at least some of them you have stated.

This is what I am doing.

I am part of the PCS group so come talk to us there.

Donna

Welcome to NeuroTalk, Tinkerbell!

Thank you for the warm welcome!
I appreciate the info to see a neurologist, Donna. Will do!
Glad to know I'm still somewhat entertaining, Alffe

Hi Tinkerbell and Welcome!
Thank you for sharing your story. Looks like you are trying to make the best out of your situation, and I commend you for that....

Glad you found us; there is so much info here and the people are really nice too. Take care and look forward to hearing more from you...

Hello everyone,

I'm Ryan from Copenhagen.. not actually a gerbil like the name suggests. In April 2005 my head was squashed by a falling pallet of heavy furniture. The pallet struck one side of my head and pushed it up against a wall, crushing it. I'm lucky to still be here! I wasn't knocked out (really don't know how), I remember everything and I was dismissed from hospital within 2 hours. CT-scan a few months later was totally normal. I have no memory problems.

It was recorded medically at the time that I did NOT have concussion. I was not vommiting, my pupils were fine but I was dizzy as hell! When I got home, it continued. I was also emotional and tired. (It is something that I disagree with and am in the process of complaint towards the medical board).

It is been however basically concluded that I now have PCS. Since the accident, I have experienced:

.Bad balance (my biggest and most annoying problem - I walk like one walks if they were on a mattress). This problem is with me 24 hours a day. On very rare days or 'moments', it is not there at all. I really notice those days!!
.Dizziness. Head spinning - happens every now and again.
.Depression. Comes in thick and nasty waves then leaves without trace.
.Mild headache which just lingers. First 8 months were worst. Now it is random. It is rarely severe.
.Irritability. Big problem.
.Sleep problems. Huge problem. I cannot settle my mind or body. Sleeping is now a major task.
.Concentration problems (reading letters and chatting are easier but writing a letter is never straightforward).
.Viewing screens and monitors (this is hard work and under a limited time frame).
. Ear ringing (since gone).
. Floaters in my eyes. They have decreased but some remain.


It would be lie to say that this hasn't been a total rollercoaster. Some days I feel good, I mean really good.. as if almost everything is really fine again. The next day it can go straight back down again into hell - and we all know how that is. That's how it is. Up and down and random. Impossible to hold a job. Boring to be at home.. yes, that sort of thing. Difficult for the girlfriend. I am English and live in Denmark - also a strain, although on good days, using the language does not put strain on my brain.

A few open questions:

1. Does anyone experience this sort of 4-5 weeks GOOD, 3-5 weeks BAD kind of PCS style? Surely if we are GREAT on one day, that gives us the potential to be GREAT almost every day? Right?

2. I've known 1 person to make a FULL recovery from this. However, I was suffering from heavy depression when my accident occurred. I am naturally a negative and depressive kind of guy (trying to change) - some doctors have even suggested that the PCS is playing off these. Any comments to that?

3. Anyone else have such bad balance that they wobble about when they walk, yet nobody else can see it? It's a constant reminder every time I get up to go anywhere. I feel like I walk on a ship at sea, or or a mattress. It's very similar. It doesn't 'hurt', it just irritates me. It is better than before but still hinders me. It is there all the time.

4. Cognitive problems - I have had weeks on end where I have missed out words in text while writing (but never speaking). Never used to do that. Then, weeks on end where it is FINE. So, if it can be fine, surely my brain is NOT damaged, right? This is what I find so confusing. Is it damaged or not? What IS THIS thing that is making my brain so useless on one day, so bad on the other?!

5. I want to hear success stories. It is the most distressing thing for a doctor to casually say 'this could be permanent'. I'm only 28 and it's a hard tablet to swallow. I like to believe I will get better.

6. Anyone can got any tips not to be consumed by this? I think about it EVERY hour of the day. It is always there.

7. I've heard that overdoing it in the first early stages is a problem for later on. An example: I used the PC as per normal in the first 2 weeks, thinking that I would be fine soon. It wasn't comfortable but I didn't think it would be a problem. To this day, I still get VERY dizzy while using the PC. I must take massive breaks or just not use it. Is that because I used it too much at the start? Anyone else experienced this?


Thanks for reading my waffle. Most of all, I would love to hear REAL success stories and positive, optimistic thinking. I would like to hear about real therapy and tips for not slipping back down the slope again. I have got better than I was but I am nowhere near how I used to be. If I can get to the stage of where I am able to work and be independent again, I will be happy.

I am glad to find others in the same boat.
I still say that PCS is one of the cruelest things to experience as all symptoms are totally invisible to anyone else.

Thanks all.

Hi Ryan

I can't answer whether it completely will go away. Mine is just about a year old. And I have good and bad days. Sometimes weeks. But I also have other issues.

But I can say that if you give up it wont get better for sure. One of the best things you can do is to keep working to keep your spirits up. Take it one day at a time. Don't worry about it when you have a bad day. Remember that each day has a new start.

I know how hard that is. I have been there too.

I am in Physical therapy doing what is called vestibular therapy. To help with balance and dizziness issues. I found a neuro that specializes in balance and eye issues. This was were lots of my problems for many years has been.

I also have a central abnormality issue problem. It also includes the vertigo and balance issues. I'm learning to retrain my brain and that is a lot of what is needed. I am also learning that its not just me its in my body and I need to stop and learn how to deal with it. My therapist and my doctor tell me its something that I can't help and for me that has been a really big thing I've needed.


The PCS forum hasn't been real active lately but if people come and start posting again. I'll be there to post too.

I'll go start a thread.

Donna

Hi, Ryan, welcome to NeuroTalk!

you might want to look at the post concussion forum here: http://neurotalk.psychcentral.com/forumdisplay.php?f=92