Exercise
 

Many of you are familiar with my situation here on NeuroTalk. Throughout this ordeal, I have actually been doing a lot of exercise, including cycling and running. These efforts have never made my symptoms worse, and I'm fortunate in that aspect. (What makes me feel worse is work and bad sleeps, generally). I've decided to really slow down my exercise exertion recently, however, so that I will have more energy and time to spend with my family, and I'm actually starting to feel worse.

Should I start it back up? What accounts for things going a little bit south while not exercising? I firmly believe that my continued cycling has actually helped me maintain my sanity.

Also--why does ones perception of time and even the wholly larger aspect of the calendar year in general seem so off with PCS? I was reading to my girls tonight and kept thinking it was March. At 7 months into this, time seems of irregular nature and goes by in a blur. I guess maybe that's just being in my 40s with a busy family and work life, with some PCS thrown in. There are some times I feel like maybe I'm as good as I'm going to get, and I'm trying to accept that. There are days that I feel good, and feel glimpses of my old self, but that is usually dashed the next day when I feel totally whacked. This means that life might just kind of be an off-kilter blur for the next 40 years.

Does anyone else feel like they brought this on themselves, or a variety of guilt about the incredibly botched recovery? I almost feel like I'm being punished for something. When I let it, this is by far the most challenging experience of my life.

Thanks for all the great help on this forum.

seth,

You don't need to accept that this is as good as you will get. You just need to accept that this is real and where you are right now and move forward from here. This is a starting point for the rest of your life. This is not an ending point. You must not look at this as a deficit point. What happened is done and past. You cannot change what happened when you fell.

We can impact our future. We cannot impact our past. Getting stuck in the past prevents us from moving on into the future.

You have all the intelligence and skills you need to make a brilliant future your yourself and your family.

Researchers notice two things about intelligent and accomplished people with prolonged or even persistent PCS. First, they are far more aware of and focused on their struggles because they are used to such high levels of function. Second, they are the best at learning work-arounds and accommodations because they use their intellect to figure things out. They notice patterns and triggers. They adapt.

If you were lost in time about the date, it does not change anything. I could not tell you the date without looking at the clock on my computer or at my cell phone. I have lived successfully for decades like this. I actually learned that I do better when I am less focused on time. I plan my day better. I was in business in an industry where I needed to arrive on time at customers homes or businesses. A wall clock at the shop was all I used. No watch. I planned my day with a looser schedule but was still just as productive. But, I was not as anxious.

If you feel better exercising, that is evidence that you should continue.

But, as I have said many times, recovery is measured in long time intervals, two weeks minimum with one month as a a common interval. As you ride the roller coaster, if last month you had 10 down cycles but this month you had 8 down cycles, you are improving. But, those down cycles will happen, even after you have achieved peak recovery.

If there is one issue you need to accept for the future, it is that you are highly likely to experience down cycles from time to time for the rest of your life, usually as the result of a stressing trigger. Many of us plan on these down cycles because we want to take on the stressful activity and the down cycle is an acceptable temporary risk.

But, it appears you have not yet been able to fend off your anxiety over your symptoms or future yet. When you achieve victory over these, the next step in your recovery will begin. Maybe you will benefit from counseling. Only you can make that decision.

But, I for one, believe you can do it. You can defeat your anxiety. You can focus on a new future rather than your past.

And, you can accept the fact that you did nothing subsequent to your injury that changed the progression of your symptoms. The only thing that would have changed the progression of your symptoms would have been another fall and injury or maybe getting blotto drunk or ill with a very high fever. If you delayed recovery, it was only by a few weeks. But that would not even be measurable.

So, look to your future. You have a lot to look forward to.

btw, Over the past 6 years, I bet there have been at least 10 people who saw big improvements after 18 months.

Seth,

Don't beat yourself up over an "incredibly botched recovery" Have you ever done this before, is this your second chance at recovering from a head injury? I wondered a lot if I made the right decisions...did I stay home to long, did I do anything wrong, what have I missed?

We have never been this way before, we did not pre read neuro talk so we could do it right.
Point is, you made the decisions you did with the best info you had and that is all we get in life. Don't beat yourself up. You have to work to let things like that go now.

I have a suspicion about the cycling based on my experience. Would you have felt guilty or restless if you slowed down your cycling pre accident, I suspect yes. If I am correct I believe that what would have bugged us pre accident becomes huge post accident. For me right now I try very hard to make sure my activity is not anxiety driven, I make sure it is good for me, what I want to do and what I can do and not anxiety driving me to be something I cant or shouldn't in all wisdom do currently.

Bud

Seth,

I do feel guilt about my botched recovery too. It was a very weak hit from whiplash into a towel rack that gave me an initial concussion. I, like you read in my other note made it way worse by drinking and continuing to work and not rest for the first few months. I think guilt is sometimes hard to ignore, but we absolutely need to remember we were working on the information we had, and the innate risk threshold we possess.

As for exercise, I had been working out everyday for about two weeks while in my extremely dark and maddening phase. And I stopped for about 3 days, and after the rest had a day of immense clarity. I worked out on the day I felt clear, and immediately felt worse. I know the example is perhaps too specific to be helpful, but I definitely felt it drained me to the extent that my brain could not use energy for healing. I am now back in my dark maddening phase unfortunately, hoping for another day of clarity that I could prolong, but have not worked out at all. The stop in working out has in this case not helped. But, I will keep you posted as I plan to make use of my gym again soon, and will let you know if fogginess returns.

Hang in there. Take strength from every friend that you can. That's whats getting me through this crap time. Best of luck to you!

I have also had dark maddening phases where I've exercised to compulsion. Like, right after work, even though my brain has been fried already for 4 hours and my daughters are clamoring for attention, I'll still go run 3 miles at an 8 minute mile pace. No wonder I feel like I'm in a Salvador Dali film the rest of the evening and the next day, into perpetuity.

Honestly, the only people in the world that I can related to are the other brain injured folks I know in my community and the good folks on Neurotalk. Seriously, no one has a CLUE what PCS is until they experience it. And I have a textbook case. In fact, there are so many posts on here that could have appeared to be written by me at one point or another.

Why don't doctors know more about this condition? There is not one specialist in my town who really understands PCS. Sometimes I imagine that if I ever get through this hell, I'll get a Ph.D in Neuropsychology so at least I can help other people that are suffering through this unique and awful place.

Mark, thanks for your inspiring, kind words. You have no idea how much you have helped me. You have literally been a lifeline. I don't know if I would have survived the last 3 months without you.

What works for me is exercising in two or three day blocks then a day completely off where I just potter about. Maybe you could timetable your exercise around your family or even include them in it?

Super E,

I am finding the same thing...I have always exercised 5 days a week ..not on weekends.

I have been stepping up the pace again with no real bad effects from it until day 4. It seems if I go at it for 3 then rest 2 it doesn't affect my clarity as much...I don't get that muddled confused thinking, well not as muddled.

Bud

The reason you have not found doctors that know much about concussion is because there is no tried and true understanding, even with the specialists. The concussion clinics only know what has been taught by organizations like ImPACT. They know return to play protocols that work for 85%. They do not know what to do with the rest. They may have lots of therapies, physical therapy for the neck, cognitive therapies that they think help with recovery and psychological counseling to help with the anxiety and depression.

But, there is no evidence that these protocols shorten recovery times. In many cases, they just generate billings for the insurance company and a sense that somebody is trying to fix the problems. Parents often respond well to this concept and are willing to support keeping the athlete off the playing field until the 'expert' says it is OK.

Seth, By ImPACT protocols, you would likely have been returned to compete long ago with minimal further care since you do not struggle with head aches. The dizziness might have been an ongoing concern but I doubt it.

That's interesting to know about ImPACT. My dizziness isn't even recognizable through standard physical therapy, as I got the all-clear from the PT that I saw who did a bunch of vestibular tests. I can do a single leg stand for over a minute with eyes closes. But I'm so far from 100% it isn't even funny.

That is scary that I would be returned to play. I'm blessed that I don't have headaches!

The responses you received in this thread, Seth, are excellent, particularly Mark's first response. I'm currently working through the transition where I used to try and understand the biology of my mTBI so that I can fix it and return to my old self... this has been a difficult quest filled with angst, anger, frustration, etc., and of course all of those issues get vented at the ones I love, particularly my children.

In the past 6 months, I've taken a new approach similar to what Mark very nicely outlines. I'm working on who I am now while trying to push my recovery... acceptance of my situation has been a relief, in some sense, and I'm sincerely hoping that it improves, but for now I'm trying to "roll" with things rather than "rail" against them. I have fairly significant activity intolerance but I understand the cycle between activity and consequence, and I think that will help.

So, push when can, but not too much, and be patient with your recovery... I've learned trying to speed it up isn't productive

One thing that I just can't get over is that I somehow caused this PCS by not following a step-wise approach to concussion recovery. I just pushed too hard after the accident, I realize now. And sometimes I wonder if I made this thing permanent or caused permanent brain damage by cycling too soon afterward.

seth, For every 'rest' protocol out there, I can show you someone else who suggests an "exercise" protocol if exercise can be done without causing symptoms like headaches, nausea and dizziness.

But, there is broad consensus regarding the negative impact anxiety has on recovery. That is why so many doctors put their patients on benzos and SSRI's that can create a whole new set of problems.

Seth,

Second guessing won't change anything of your current situation.

I think anxiety is more counter productive than exercising to early, it certainly has for me.

Bud

Hi Seth

I have been reading your posts and it looks like you've gotten a lot of good advice. I thought I might add my two cents. It sounds like you are a very intelligent person that likes to accomplish a lot and push your capabilities to the max (and maybe a bit stubborn as well). This sounds a lot like me and maybe like others on this forum.

If I could have exercised like you throughout my recovery, I would have definitely. But my symptoms and my body told me that exercising was a no go unfortunately. I seriously doubt you did damage be exercising because your body was ok with it.

What does strike me though is that you said your brain is fried after 4 hours of work - and then you exercise hard - and then you have to have time and energy left for your family. I spent several months of my recovery pushing through like this to the point of total exhaustion every day - to the point where I would just collapse on the couch and be worthless at 4 PM. During this period I felt no improvement and actually felt worse. It wasn't until I made changes in my life and focused on recovery that I was able to make improvement. It looks like you are still early on (3 months?). You have not done permanent damage and you still have plenty of time to figure out a path to healing.

Yes, I'm definitely a bit of a stubborn person. I am convinced that I probably really made things a lot worse by trying to push through early on. Not the injury worse, just my recovery a lot more prolonged. I didn't take much time off work, and started exercising way too soon afterward.

I actually talked to work on Monday, and they have been amenable to me reducing my hours to nearly part time for awhile. It is a real blessing for me to be able to do this. I don't think I'll ever truly recover with my job at its current pace. I'm also getting a neuropsych test done in a few weeks, and that will tell us more.

I am at 7 months now, actually, so a little ways down the road of recovery. I still cannot get passed the fact that somehow my ignorance of protocol caused this!

Mark,

my swimming teacher had a bad concussion which lasted for about 7 months about 5 years ago, she was behind on her school and spent a miserable year. Yet she now claims she is 100% and never had a set back since.

I feel you have a tendency of telling people that this is something you have to deal with the rest of your life, that downturns WILL happen. I am confused. Most people I know don't seem to agree and I really do hope you are wrong on this :)

After all if I knew that for the rest of my life I won't be able to fly/run/exercise/drink/listen to loud music (concerts) for the next 10 years of my life, I would make a more dramatic decision.

I really really hope that there is such thing as 99% recovery. And if any of you know of these it would be really great to let us know.

Thanks

J

I never said you can't fly/run/exercise/drink/listen to loud music (concerts). What I said is, These activities may cause you to have a poor day afterward. Most are more sensitive to alcohol. They may get drunk easier or have a hangover that is more problematic. I did not say you cannot fly. I fly in airline cabins. But, private pilots flying in unpressurized cabins at high altitude for extended periods may be putting their safety at risk. Flying as a passenger is not a risk.

Exercise that cause high peaks in pulse and BP may cause headaches more easily that prior.

If you choose to go to a loud concert and have a bad day after, take it slow and you should return to normal soon. I just would not plan a loud concert the day before a critical task at work or elsewhere.

If you find from experience that you can push the limits, good for you. Most people do not connect their prior concussion to later bad days. Instead, they might load up on caffeine thinking they are just tired.

btw, If you like loud music, spend a day in a retirement community and observe the frustration people have when they struggle to hear. I have a 10% loss in the high frequencies due to noise.

It's not like these activities will cause PCS to come roaring back. Just that they may cause one to have a slow/bed day. As you age, you will find that many body systems have less tolerance for stress. This is true for people who never had a head injury. It's just more so for us.

Thanks Mark
 

Mark, the post you wrote for Seth was a wonderful thing for me to read. I was at a very very low point, and it was exactly what I needed to hear. I have felt so much fear and anxiety over my future. To not be able to interact with people, to not be able to have my intellect handy, I am self-employed and haven't been able to work. My wife is a stay-at-home mom it feels like we're about to lose everything. That fear is worse than the symptoms.
Thank you everyone on this blog or formum for sharing your symptoms and your struggles I don't feel as alone as before I began reading yesterday. Before I would try to shake my head and just snap out of it felt like it was my own weaknesses, Like maybe I was just after attention. Now I know.
I am almost 2 1/2 years removed from my last concussion which was a baby concussion I didn't even hit my head just ran into a pick playing basketball and the lights went out it didn't help that was my 12 time unconscious, And several of the earlier ones were very big. I never got any anger with any of the earlier ones just a little bit of irritability and a hard time finding my words. Now I can't take motion or sound, my right ear is always plugged,and when it does hear it sounds very funny, the tmj on that side always feels like it wants to pop. I take tons of supplements. I have tried juice feasting a ketogenic diet, gluten-free dairy free grain free. Organic vegan. I thought the ketogenic diet was going to be a answer, I felt hundred percent normal for a month and then I think I must've overdid it and this is the worst I've ever been I haven't been to work for a week and a half and I don't know if I'll ever get to go back. I love my job I think that's part of my stress my anxiety and my fear.
For a couple hours a-today usually after I am rundown I think I'm done, I don't want to play this game anymore, I feel as though I am a large burden on my wife and family. I think I can make it, and I think this message board is going to help.

Tony,

I am self employed also. Been a hard road being scared and unable to make decisions at something you enjoy and have been doing for years without problems making decisions.

Hang in there...we'll make it. I am gaining ground very slowly, but gaining.

Bud

Hi Seth,
I understand the internal conflict and the guilt about our actions that we feel may have prolonged this battle. I still haven't figured this out for myself, or found acceptance. Not meant to confuse, but purely provide some positivity with the following link.

http://www.buffalo.edu/news/releases/2013/03/001.html

Apparently, they found graded exercise to be beneficial. The Dali thing? Totally relate to that at the end of a long 12 hour shift, it literally happens every day at work. It seems there needs to be a happy medium place between a little exercise/activity and too much. If it helps at all, all of the doctors I have seen about the PCS and symptoms all say the same thing, 30 minutes max of exercise but daily if possible to encourage blood flow to the bruised parts of our brains.

I hope you find peace on this subject, even a pinch is a milestone when it comes to dealing with this. You aren't alone, I personally appreciate posts you've responded to of mine. It seems that when we aren't strong, at least someone else on here can be strong for us at that moment in time.

I recall you mentioning something about your vision. Random - but have your pupils been more dilated than usual? A fellow nurse pointed out to me that mine have been incredibly dilated, I've noticed this too since the accident. We were trying to figure it out. Going to the eye doc tomorrow, but perhaps this is what's causing the photophobia/part of the visual disturbances for you?

Wishing you well.