Lately I've been thinking about setbacks in my progress, I've had plenty of them. My setbacks come with no warning signs, they just hit me out of the blue if I try to do anything which my brain deems is too much. This generally takes me around a month to recover from and it happens time and again with no way for me to measure how much is too much activity. One moment I'm fine, I'll go asleep that night, wake up in a fever, feeling very weird and sick. Boom, here we go again!

With setbacks it feels like, at times, that my progress has been set back to when I was first injured. But surely this can't be the case? if this isn't the case, why does it feel like my injury is a fresh one, rather than 14 months old?

Also, if I can stop these setbacks happening at all, ie I live like a monk and stare at the ceiling for a few months (this generally makes my symptoms vanish) if I can hold this "symptom free state" for a long time, does this generally make pcs more likely to be gone for good?

This is the most sneaky, frustrating and random injury ever. Highly annoying.

Interesting. I keep a daily log of activities, medication and nutrition. In all of my setbacks there have been a string of overactive and emotional events leading up to the setback. It's right there in writing but I will agree it's hard to judge when the tipping point is coming. This is in contrast to what you're saying about waking up to it randomly.

As I've stated before light is a huge trigger for me so that usually plays a role as well. I do think emotional stress and solid sleep are the biggest factors in brain injury recovery. Isolating yourself could be helpful but we also need human interaction. Trust me I'm in a state of loneliness and it isn't helpful.

The longer one can remain symptom free, the more chance the brain has to heal. But for some of us, that healing will not be complete. It will leave us sensitive to triggers. Many in this situation learn to recognize those triggers just before they reach critical mass. We can remove ourselves from the triggering situation and avoid a prolonged recovery.

For me, it would be any of a few things. I may need to reread a line of text, I may struggle to understand something I was hearing, my eyes may go a bit screwy and struggle to focus, and a few others that I can't remember at this time. But, as soon as I start to notice this struggle, I need to remove myself from the situation so my brain can get a break and reset.

Sometimes, I can stay in the environment but redirect my mind to prevent the chaotic thinking struggle. I might close my eyes, I may need to tell everyone to stop talking for a moment. I do this by calmly redirecting the conversation with something like, "Slow down please. I am struggling to understand what you are saying." If I say it calmly, most will respond calmly. That helps.

The gist is that many of us get back to a more normal life by learning to moderate our environments so the triggers are less frequent.

A good day does not mean we can get busy and try to exceed our normal limits. This often results in that next day crash. The frustration at the next day crash can cause that recovery to be prolonged.

In my case, things improved very slowly such that I would finally notice that I could endure a trigger without a need to adjust and leave or such. I can go to any restaurant without my earplugs. It took 10 years for me. But, I have also learned how to respond to the noise.

It is frustrating but getting frustrated will usually make things worse. Taking a quick but calm action and starting a new step works best for me. Like, if I bump my head, I acknowledge the bump (ouch, or some short term response like 'whoops, that wasn't smart.' or I check my self thinking I bumped my head, I'm not bleeding, no big deal, let's move ahead) but it is a response that is finished. Not, "When will my head stop reacting to bumps? or other open ended responses. Open ended responses just feed anxiety.

Screens seem to be my trigger for getting worse. I can tolerate noise, music, busy areas, light and even driving doesn't seem to cause symptoms any more. But if I try to use a screen, watch tv, play a video game, watch a film or read on a screen for too long, I'll go haywire.

I've had several times where my symptoms have vanished and no amount of screen time affects me. But eventually symptoms have crept back.

Because I have had these times when screens do nothing and I feel totally normal, it would point to a suspicion that my injury is t a permanent thing, ie, the nerves are damaged and healing as aposed to destroyed and dead. Would you say this is a likely scenario?

If you can tolerate screens some times but not others, your screen difficulty is not permanent. Your highest level of screen function may be your limit but your reduce screen tolerance is not. There is likely some other stimulation that is reducing your ability to tolerate screen time.

It like complaining. When I am holding my child on my lap, I can only type 15 words a minute. When I have nothing on my lap, I can type 50 wpm. Is this 15 wpm a permanent limit ?

Yes it is but only when the other factor is at play, (child on lap). But, over time, the child can learn to sit quietly on your lap so you can type faster or even sit next to you where you can type at 50 wpm.

So, yes, you may need to accept that in some situations your screen time has a limit. As you learn to work with that, your tolerance of screen time during those situations may slowly improve.

btw, Many get totally burned out by video games with the crash not showing up until the next day.

I guarantee you that there is another factor at play when you crash. You just need to figure it out.

Be encouraged by your maximum capability and work to close the gap between your max capability and your limited capability. Even healthy brains have times where they have limited capability.

My maximum capacity at the times when my symptoms go away is normal screen limit. No symptoms regardless of screen time.

I can relate to most of your comments. Lately I have had multiple episodes where my left eye has uncontrolled movement. Either moving side to side or rolling lasting two to three minutes. I will get a slight pull in the eye just before it starts. It has been very scary, leaves me unbalanced and unable to process the environment where I am. It takes two or three days to recover....fatigued and what I call swelling, where my brain feels too big for my head.

I have had something similar, but not as severe. Blinking eyes feeling very, very tired after a nights sleep and slightly roaming about.

6 months ago I was using my phone freely and listening to podcasts with light sensitivity getting better every day. Screen time on my phone was essentially unlimited (10+ Hours per day) for a couple. months with clearly no issue. Then my brother died and a lot of stress has caused multiple steps down to a point where I have worse symptoms than ever before. This in my estimate is not further injury but some sort of chemical imbalance manifesting in increased symptom severity. I might have a vulnerability with these particular symptoms but I am in no way convinced that I somehow damaged my brain further and cannot recover enough to surpass where I was at in August once I get the psychiatric components under control. Just my perspective and experience. Wish I could snap my fingers and relax but my brain is too worked up. Not ideal for recovery.

Doozer,

I was going through the same deal at 14 months.....I had very little idea what was causing a lot of the falls.

At 22 months things are much steadier now. I still head down at times but never as far or as long or as scary.

Bud