Persistent PCS after bike crash
 

Hi Everyone:

I'm new to this forum, and need some advice. I am an avid cyclist, but had a serious bike accident in Mid-March, sustaining a concussion with brief loss of consciousness. My helmet did it's job, but I am still suffering from PCS and am getting frustrated. As far as symptoms go, they weren't too bad initially, and the doctor's advice was basically "take it easy." As this was my first concussion that I know of, it was uncharted territory for me and I didn't get good initial guidance from medical professionals or from friends or family, who also seemed unaware of how to proceed. I did ride again a week after the injury (balance was fine and symptoms weren't bad) and returned to work 4 days after the injury. I fear I rushed back into things and this caused my PCS. I do find the aerobic exercise generally helps my symptoms now, but I still have some almost constant light dizziness as well as light sensitivity (I wear Axon optics specs at work currently because of my light sensitivity). I also have trouble with large groups and my teaching load at work.

My persistent worry is that this will continue to have these symptoms forever and I caused them by trying to come back too soon! I just didn't know. I have had the standard brain imaging done and it has come back negative. I also visited a neurologist a few weeks ago, and he did the standard cognitive and balance tests and gave me a clear, mainly just saying to "not push things" on the bike. I realize my PCS is mild compared to many folks, but it is greatly affecting my life in many ways. Is there any timeline to feeling myself again? Did I cause this, through my ignorance of protocol?

Thanks for any advice.

I think there is no time frame to suggest or aim for it is so individual for each person..

I suggest reading the sticky threads here and browsing thru posts to find info & things to try..

For now I would reduce any stresses and aggravating activities as much as you can, rest as much as you can too....

Is 3 months an indicator that this will be a LONG recovery? I just didn't have very good knowledge regarding concussions initially . . . I thought the symptoms generally just lasted a few weeks! Little did I know.

seth8a,

Welcome to NeuroTalk. Sorry to hear of your injury. Your helmet did its job by protecting you from a skull fracture. Helmets have proven to have a limited effect on reducing concussions.

There is no evidence to suggest that your return to cycling caused your PCS. The concerns about returning to activities too soon pertain to risks of Second Impact Syndrome. Most activities just delay recovery. Whether you would have a delayed or longer recovery has more to do with the individual specifics of your injury. Cognitive stress has more influence on recovery than physical stress, especially physical stress that does not cause and increase of symptoms.

You need to learn the specifics of your triggers and struggles. Are you sensitive to groups with multiple voices ? Is it general sound sensitivity ? etc.

You need to get past the idea that you caused your PCS. The anxiety of that false thought is counter to recovery. If you recovery takes a while, that is due to the nature of your injury, not the short delay you may have caused. You only make a concussion worse by suffering another concussion or by chemical insult (intoxication, drug use, etc).

So, find way to slow down and reduce the sensory stimulation in your environment.

My best to you.

85% of concussions resolve spontaneously in the first 6 weeks. The rest are all over the map. The obvious stat is that the longer the recovery, the greater the possibility of a prolonged recovery. In other words, the bell curve has long flat end points. There is research that shows it is difficult to link recovery times with initial concussion symptoms and perceived intensity of impact.

Thanks Mark, this is all extremely helpful and informative. I have been beating myself up for weeks about coming back too soon. My main stress factors are the following: fluorescent lights, computer screens, and a busy work schedule (I work as a reference/digital librarian at a busy semi-urban public library where I teach technology classes and run several large-scale programs and initiatives), and poor sleeps partly because of work demands. I also have two small children, but they really don't stress me out too much and are generally just fun to be around. However, I realize that I can't do TOO much with them or I start to feel wonky.

The main obstacle seems to be work. I am the main breadwinner, but I have been very tempted to take medical leave at certain points in my recovery because my job is so demanding. However, I'm not sure how amenable they would be to it, although I have kept my direct supervisor apprised of the situation. I am, however, taking a 10 day vacation starting today, so hopefully this will help some!

Thanks again for your extremely helpful input!

I had a "moderate concussion" in the sense that I was knocked out for a short time but did not have amnesia or other severe symptoms at first. However, the back of my bike helmet shattered, so it was an intense impact. I am hoping to be completely healed soon and am trying to remain positive. One of the things I didn't realize at first as how counter-productive caffeine intake is! I love, love, love my coffee, but still cannot take caffeine in any form. I do wonder how long this will last.

Thank you again for your supportive words. They are making a huge difference today. :)

Helmets are designed to shatter. Read the label in the helmet. They are only good for one impact. Some will even provide a free replacement with proper impact documentation.

Caffeine is not different than loud music or other stimulating activities. Caffeine just attacks at a chemical level. One serving a day should be your max and best in the AM. Read about the metabolic path of caffeine. Same for alcohol. MSG is just as bad.

Recovery is not about the amount of rest. Recovery is about reducing the peaks of activity and stimulation. 23 hours of low stimulation activity is worthless if the 24 hours is high stimulation activity.

Recovery comes from continuous periods of moderated stimulation and reduced symptoms. Every time you get over stimulated or push to fatigue, it is like you have to start recovery all over again. Just delaying recovery. Not increasing the magnitude of the injury.

What is the answer for someone in my position? Meditation? Reducing workload? I desperately want to get better....

I mean....Will I ever get better?

Reduce or change your workload. You should try to plan for a month or two of lower impact work load. Can you do that over the summer ?

And, a relaxing vacation would be best. There are plenty of activities that do not have spikes in stimulation.

I try to think of it this way - I will get better.

If you are able, please do check out some of the posts in the Sticky thread at the top of the forum called

posts on hope and healing

Yes . . . I've actually just started a 10 day vacation. I'm really hoping this will help a great deal. We aren't going anywhere, just trying to relax as much as possible. :)

One last question--I have some skeptics in my family it seems, about the validity of PCS as a condition. I don't know what to tell them in that my symptoms are truly real. Can this last as long as 5 months or so? Feeling frustrated today.

Also, I've been wondering today if there is possibly something else wrong with me, as the fatigue can just be unreal from this at times.

PCS can last 2 years for some people. The You Tube video series, 'You Look Great' can help with this understanding. https://www.youtube.com/watch?v=x9Xso4qGdlI

Seth8a

It is real. Invisible injuries are hard for some people to understand. ive seen the video Mark recommended and it helped. My mom and husband also came to some of my appointments and that helped - both me and them.

I hope your vacation helps, take it easy, i know how demanding young kids are!

I wonder still if I caused this by going to hard initially esp. since I only took a few days off work. Is this a false thought? Would it have made a difference if I had been easier on myself? I still don't understand why it has lingered so.

You did not make your injury worse by not resting right away. The anxiety of such thinking is counter to your recovery. You just delayed your recovery.

But, you also need to accept that there is no rhyme or reason as to how long recovery will take. Your recovery can take weeks, months or even a year or longer. Reducing stimulation and nourishing your brain as best as you can will help your recovery but does not guaranty a short recovery.

I've been told everyone heals differently. Study shows that the most improvements are made within the first year, but I've heard of cases where people recovered in their 2nd-3rd year. Even my neuropsych said that there should be signs of improvements by 8 months. Anyhow, my daughter still has PCS at this point and its been 9 months. I'm hoping for the best, but in the meantime, I find rest/coping strategies for her during this summer prior to school in the fall. The HRV biofeedback sounds promising, along with breathing exercises and good nutrition.

You might want to go to some support groups. I found the information and feedback very valuable. Don't give up! Try to rest or relax more.

That does really make me feel a lot better! Thank you. I have found that a progressive exercise program (which for me involves lots of cycling, with increasing intensity) is helping hugely right now. It even seems to be reducing my light sensitivity. I also really am comforted by the fact that the only way this can truly get worse is if I get another concussion, which I'm being extremely careful about (and no racing at the moment!). I have often wondered if the severity of the impact is why this is lingering so. I mentioned my unconsciousness was brief, but it was actually more like 5 to 6 minutes.

Studies show there is no direct correlation between severity of impact, LOC and such and duration of recovery. Researchers have tried to connect those dots for years. Actually, a concussion with LOC is a moderately severe concussion from a purely physiological perspective and using the Glascow Coma Score. Very few here on NT suffered any LOC at all but suffer PCS for quite some time.

Please stop trying to analyze your PCS. It is impossible to effectively find a cause and effect situation other than simple cognitive over-stimulation issues.

Yes, I think over-analyzing it is probably hurting my recovery, perhaps?

Thanks for all your good input, I really appreciate it. I am getting better slowly, and that's what really counts.

One last thing--fluorescent lights and dizziness
 

About the only lingering and troubling symptom that I have is a sensitivity to fluorescent lights and dizziness related to it. I have a near constant slight disequilibrium, but pass all balance tests. It is very slight mostly, and has been reduced tremendously since the injury. I have been assured that it will subside, but has anyone else had anything like this? I have started some vestibular rehab exercises to assist with this part of my recovery. Computer screens seems a lot better, as far as tolerance for them.

I mean, is there any way to know if this dizziness will subside? Mine was very bad today at work, coupled with just general fatigue that being under these lights seems to generate. Sometimes I don't actually have this reaction to the lights.

Nobody can say if and when your dizziness will subside. In most, it eventually does. Some need therapy to help. others just need to give it time. Anxiety about it only makes it worse. It can be like tinnitus. The more you pay attention to it, the more of an issue it becomes.

I have had dizziness from sudden moves for decades, after anesthesia for surgery. I learn to not make sudden moves and I rarely notice it.

Thanks good advice. One of the odd things I have also felt is this...I never have headaches anymore...way less even than before my accident. Sometimes I even worry about that. My head just feels well, kind of blank.

Count your blessings.

Mark--you are such a Godsend in many ways. I have been very comforted by the things you've said. Another question that I've been concerned about--does the photosensitivity go away for most people?

It usually does. Mine went away in a week. Even if it takes timetime for you, it usually resolves itself fairly quickly.

That's good to know! Mine has been 2 1/2 months (the symptom came on a month after my accident). If I am well rested and not feeling anxious or stressed, it usually isn't as bad. I even wonder if it is partly my imagination!

What is the cause of it, exactly?