I am 2 years 8 months into this PCS hell. Tried so many meds, therapies and all that jazz and still trying. Allday/everyday it is a struggle.

I personally know quite a few survivors who had mild to severe TBI. Including some seniors in 70+ and except servere TBI survivor all of them recovered completely. Even severe brain stem injury, coma, therapy survivor who cannot use much one side and short term memory loss, carry on with her life happily what she can. Travelling, attending social events, cooking etc., cannot work anymore which doesnt bother her at all.

No one I talked to has PCS symptoms like many of us suffer here on a daily basis. Constant headaches, dizziness, fatigue, visual and auditory stimulations, all kinds of pain, brain fog etc., and it keeps coming. I know I shouldn't compare but I come in contact with them and start comparing.

So even TBI survivors are surprised when I tell them I have all these after 2 years. I live in big city and only few doctors here aware of this. One Neurologist told I have nerve pain. What?

I am willing to trade my leg or hand than going through this.

Without internet and this forum it would have been really tough.

I get angry, frustrated, anxious at times because we all are human dealing with a tough condition. Being spiritual sure helps to calm your mind and get rid of some negative thoughts. Try alternative therapies if you can and be cautiously optimistic with anything you try but you should keep trying. There are so many therapies out there and some thing may help.

Keep up the spirit.

My injury happened 19 months ago (yes, I'm still counting)...I have not had ANY treatment up to this point (I blame that on being a Worker's Comp. issue)...angry? Yes. And to be rational (as rational as I can be) who WOULDN'T be??

I was enjoying a successful career, doing what I love and being compensated well for it. I was enjoying my newly brought together family in a new home feeling on top of the world...then I hit my head on the corner of a metal cabinet...a fluke accident, and it's changed my life...

Every single moment of every single day I struggle trying to trade this "anger" "why did this happen to me" attitude for thoughts of "I will get help, they will start me on meds to calm my anxiety which in turn will help me be able to focus"...I haven't lost my faith, and I know that I can't...

I just finished my Neuropsych testing and will receive the results on Monday...I've been a Nurse for 17 years and it is a very real possibility that I will be unable to return to my career...so I have a choice, as I see it...

I can be angry about this or I can demand that I get every single treatment that is available to me with the hope that my condition improves. I can continue to fight (which is exhausting and just makes me more symptomatic) or I can give up. I'm not giving in and I'm NOT giving up.

Reach out here for support...vent, be angry, but please...do not give up. Many people don't understand...I fired the first Neurologist they sent me to because 2 months post injury he told me I would "never" get better...he will get a revisit from me someday...:)

Sometimes our anger just "happens"...that's been the most difficult for me to handle...I get it, I really really do....hang in there...you're not alone...!

Hi,

My injury happened last year on February the 5th. I had whiplash snowboarding, never even hit my head.

As with everyone else, the recovery has been a roller coaster ride. Am I feeling better then I did, yes! Am I a long way from healing and living a normal like again? Yes...a long ways away.

I still deal a strange array of different types of dizziness. Sometimes it feels like the ground is moving up and down very rapidly, like I'm on a boat.

Sometimes the dizziness is too the left or the right.

Almost all the time I can sense movement with my heart beat.

Pulsitile Tinitus - when I lay down and close my eyes I can hear my heart beat in both my ears, ususally the left is worse, and it feels like my body is rocking back and forth with my heart beat.

My pulsitile tinitus gets worse if i get my heart rate up.

I'm more anxious, have had a few panic attacks, have problems with over stimulation - sounds are the worst.

I get TMJ locking and tightness that seems to come on when im stressed out.

My neck is still bothering me, feels like my vertebrae are loose.

All in all I still feel like crap and am nowhere near back to my former life.

I havent worked in a year and am scared to death to try and go back to a normal job, mostly because of my dizziness.

I have very little medical support here in Calgary Alberta Canada. I was seeing a "concussion specialist" for a while but I was discouraged from his lack of knowledge and got sick of shaking his hand and having him ask me how I'm feeling.

I'm broke, barely see my friends, live in my parents basement and havent been laid in a year.

But....


I'm alive and still greatfull for the simple things in life. This is the hand we've been delt.

Curtis

Nitro157:

I have all your symptoms including neck and some TMJ. You put the dizziness in a very good perspective. For me too dizziness you explained is the most debilitating symptom. Sad but interesting. I get anxious because my dizziness level/intensity changing all the time and stores/malls are the worst.

Not really sure where it is coming from but lately trying Visual Therapy. Next probably shots in the neck and then Neurofeedback.

rick92:
Is your dizziness a true vertigo or something nitro explained?

I've read some really scary stuff about cortisone shots in the neck. I've thought about it, but not sure if it;s something I'll do. Many people have been left if worse shape then before the shots.

I know what you are saying. That is why I have been contemplating. But there are so many different types than cortisone ( like Botox, Prolotherapy, Platelet Rich Plasma Therapy (PRP)). It is a confusing world......

can't even find a Dr. to recognize/diagnose
 

ha! PCS has never been mentioned here, and we just keep getting rejected by brain injury doctors, and clinics. its SO frustrating, how come i can see the match for all the symptoms, and the history that we know of, but without a gaping hole in your skull, or a fracture on X-ray, we can't seem to get ANY help at all.

redloui : My case is little different since my MRI showed brain contusion and even now if I take an MRI it can show mild brain softening.

I have access to all the resources and in a big city, but guess what. NOTHING helps much. So you don't miss out much. Doctors most part know I am suffering but for PCS they cannot do much besides anti-depressants, anti-anxiety, pain meds some physical therapy suggestions. Also it is poorly understood condition by professionals.

Nitro157 : off-topic - I lived in Calgary for about a year and worked at TransCanada Pipelines. Cold but very quiet and clean city. banff is very scenic and nice. I know with this condition we cannot get out and enjoy anything. I cannot walk one block without feeling dizzy.

I see you're in Toronto. Give Dr. Karen Johnston at Athletic Edge Sports Med a call. 416-800-0800. I can't guarantee that she can do anything for you, but she has been involved in concussion research, so there's that.

I am so sorry to hear about your struggle, it is extremely angering when the doctors say 3 months and then you finally hit that 1 year mark and don't know if there is something really wrong with you or what is going on! Nobody understands, you feel alone, the pain is your only constant companion. The medical world has failed you, your friends have forgotten or moved on or just don't know what to do with or for you. You can't imagine life continuing like this for another year or, God forbid, 5 years, or even worse 10!
This is how I felt at year 1 (and then I got 2 more concussions on the same day:D)
First you need to make sure that you have had an MRI and MRA to make sure that there isn't something wrong with you that a doctor could fix, then it is time for the hard work.
Every single day, when you wake up with that pain (or whatever it is for you) you have to make a challenge for yourself. This is not a day to give in! This is a day to use this pain and annoyance to help you become a stronger, better person. Do things to get you outside of yourself. Self-centeredness, to me is the #1 problem for those with PCS. If we move outside of ourselves, if we volunteer for homeless shelters, or if we are the shoulder to cry on for friends in trouble, if we are around for people with other long-term illnesses, these are all things that will help us to use this pain as an opportunity. NO Pain No Gain is the saying, so we just have to be determined to gain from this pain and not let it conquer us with anger and depression.
It is really weird for me, right now because I am going on 7 months since my last concussion and 3 years since my first. All of a sudden this week I am feeling really nauseated, something that usually only happens within the month after a concussion for me. I have not felt this way in over a year, and it is really hard to deal with. The nausea is constant, and the headaches are worse and more piercing. But, I am a senior in college and I have a revised rough draft for my 25 page thesis due this evening. Such is life:winky:

I wish you all the best of luck, stay positive and use this as a learning experience!