Pcs 5 months... Why am I Getting worse??
 

Hi, I'm new to this forum but thought I might try to see if anyone else has had my experience.

I hit the boards head-first playing hockey in January. Was wearing a helmet and didn't think I had a concussion until several days later. I'm on month 5, and have greatly lessened my activities, quitting all extra no work activities and only working half days. However this has not resulted in any improvement. Seems like I have been able to do less and less. I was able to walk/jog a bit for exercise but now it seems I can barely do that.

At first my symptoms were emotional. Lots of crying for no reason and quick to anger. Then, I faded to getting tired/fatigued easier. Then, I started having a lot of problems with elevated heart rates and blood pressure, now I have a bit of everything.

At first I worked and took it easy at home. Then, I started taking time off (after a week of persistent symptoms). On month 3 I started feeling better. I went back to working full time and did some volunteer work in the evenings. I think I over-did it and caused myself to fade back to easy fatigue. Even as I cinch down on my activities I'm getting quicker fatigue and dizziness responses.

Has anyone else had this experience? The doctors keep telling me to do "conservation of energy", but the amount of energy I can expend without symptoms keeps getting smaller and smaller.

Thesquid,

Welcome to NeuroTalk.

From the description of your injury, I would be concerned about an undiagnosed and untreated upper neck injury. They can lead to BP and pulse irregularities. You don't need to have a stiff or sore neck for your neck to cause symptoms.

I am more concerned about conservation of mental energy than physical energy. Some light physical effort is important so you maintain good blood flow to the brain. You want to avoid jarring the head and neck as is common with jogging.

Moderated cognitive effort is important. So efforts that push into fatigue. As soon as your recognize any fatigue, you should taker a break.

You don't tell us about your age and other attributes such as living situation, etc. Living environment factors can contribute to fatigue. Noise, diet, relationship stresses, etc.

More later.

My best to you.

thanks for the reply Mark!

I'm a 33 year old woman who lives in rural Minnesota where doctors are bad. About 2 months ago I was referred to an ok neurologist in Minneapolis (5hr drive one way). I'm married no kids so the homelike is pretty stress free... However my husband didn't quite "get it" when this all started happening. I was urged to go to work even when I knew I shouldn't...for work I stare at computers all day. In fact when this whole thing started we had 2new employees that I alone was needed to train on super complex stuff -mostly remotely via sharing computer screens. I also had a huge workload piled on me. So somewhat stressful during the first couple months.

I lowered my hrs to working part time at first, then back up to full, now back down to part time. Currently I frequently go past the point when symptoms set in. I try to take a break when they start... But they never go away completely until I go home for the day....

I've been my own doctor through this whole ordeal -Basically minimal guidance from them. (Including sportsmed concussion person, neurologist, and my GP).

I have been cutting out stuff (cognitive and physical) left and right and trying to get in light exercise... Walking/hiking for 20 minutes. I guess I have to quit jogging. I can't do it now anyway. It wasn't bothering me a month ago :( I have quit any social stuff because it makes me sick too. That's REALLY hard for me

Regarding my neck: Last month I ordered myself an X-ray. Some minor issues were noted but the doctor concluded that it did not appear to be abnormal.... But that's rural Minnesota doctors. I may see if I can get the X-ray and look at myself. I may also order myself an MRI of my neck.

I have asked my doctor to refer my case to Mayo. After some urging and debate with his nurse, he did it. I don't have an appointment yet, but they will call me. I'm super afraid they are just going to tell me to rest even more. I just keep slipping further and further backwards.

Wondering if anyone else has had a symptoms worsening experience. Maybe I'm doing something wrong?!!

Yes! You are definitely not alone!
My son (age 25) is also 5mo. down the track with PCS (injured at work, symptoms began to appear 70hrs later). He kept working for a couple of weeks, not realising what had happened.
He feels that he was gradually improving but that his symptoms have become worse -- including headaches, severe lightheadedness, gasto-intestinal issues, neck-shoulder-back-abdominal pain, blood pressure abnormalities, variable heart rate, fatigue, noise & light sensitivity, vision problems (convergence).
What we have learned is that mTBI can result in what they call 'the primary insult', which is the actual damage to the brain, as well as the 'secondary insult', which is the brain's reaction to this -- which can produce a 'metabolic cascade' of various responses. Variable heart rate is among these.
I'd say a crucial thing is to get the best medical investigations you can see if there are any problems that can be identified. Then you will know what a recovery plan might look like.
Good luck, & best wishes from a fellow Midwesterner, now in Australia.

In my experience, it was important to learn the early signs of fatigue. Needing to reread a line of text, struggling to focus on text, struggling to understand what I am reading, These all are the early signs. The very first time these happen, get up and walk away for a break. I'd change go from my office upstairs to my easy chair and watch some Discovery channel or do some other low key activity for 10 to 30 minutes. I could often return to my office and get back into the task I was working on.

We each need to find our own system of breaks but I bet the triggers/early signs have a lot of commonality. Office noise and other office environment issues can contribute to fatigue.

One of the challenges to computer work can be the position of the screen. Lifting the head up is/was a problem for me. It is even worse for me because I wear progressive glasses and need to find the right part of the lens to see the screen.

I suggest you try to get as much phone consult from Mayo as possible before making the trip. Finding the right doc/therapist/diagnostician prior to the trip will help you utilize the visit better.

An upper cervical chiro may be the best at upper neck x-rays.

Aside from a change in my sleep routine I didn't experience anything horrible till about 6 month post incident then I was up for a rude awakening.

A host of the usual symptoms you read here slammed me. I am 14 months post and doing better but still struggle daily, I'm not the same.

Bud

Bud

Thanks for the info Mark,

I just got FMLA approval for 4hrs/day. With your suggestions I really can't work. There are no escapes in my office. Given the nature of my work it's really difficult to work from home.

What frustrates the hell outta me is that my doctors haven't given me boo for work guidance other than to take breaks. My current neuro doctor actually was surprised when I told him I can't do full time anymore and thought working at all is a bad idea. I had to call daily to get the paperwork to work part time. After a month he finally sent it in.

I'm seeing a functional neurology chiro. She looked at my X-rays but didn't comment. I can ask if she has any thoughts. She has me doing brain exercises with my eyes.

Mayo does phone appointments but they require an initial visit in person. They will review my files before I drive down there so they know where exactly to send me and what tests to run. I'll let you guys know if there's any things I learn from Mayo.

As you can tell - like everyone else I'm devastated. This is a terrible thing and I feel bad for folks who have had this problem even longer than me!! I'm also terrified that my symptoms will last as long.

It's common for people to experience new symptoms as time goes on. It was explained to me that the symptoms may not really be new, but you may not have been aware of them before.

I recently got a concussion and I'm experiencing new symptoms myself. Each week I seem to notice some new symptoms, but some of the others seem to be leaving. Time really does make a different. - Hulsky