Hi all,

It's been 11 months since my third and most recent concussion. I'm really thankful to have been safe all this time, and normally nowadays my only symptoms are a slight headache, fatigue, and tinnitus.

However, like I'm sure many of you have, it seems like every few days I get some sort of setback, whether is be from a bumpy car ride or loud music or just sitting down too fast. Just a couple hours ago, an acquaintance gave me a hug and ended up headbutting me... I'm feeling much worse than usual, really hoping it's nothing more than another set back.

Anyway, I wanted to know how often you guys get setbacks and what triggers them. And more importantly, how do you try to prevent them and how do you recover well when you do have them? How do you deal with the anxiety as well?

Thanks in advance

Setback are to be expected. That is the roller coaster ride of PCS. There are many triggers. Moderating those triggers can be beneficial. Loud music is a trigger for many. Minor bumps can be a trigger. Most trigger an anxiety based relapse so learning to moderate anxiety is a big plus. Setbacks will happen so accepting that uncomfortable situation is helpful.

For me, I would sometimes even need to plan on a setback after an activity I could not avoid or moderate. Those setbacks could last 2 weeks in the early days. I knew to avoid 'double booking' triggers. If I knew I was going to have to endure a triggering activity, I needed to do everything possible to avoid 'planned' triggers for the next week or so.

The hug and head bump type of triggers I learn to just shrug off. "Oh, that is probably going to cost me." Then I would move on. If it did trigger a setback, I tried to not let it cause anxiety because I was expecting it. I did not look for setbacks.

Many use anxiety to look for little changes and focus on those changes making the setbacks worse. I find that even though setbacks are annoying/frustrating, I can choose to keep going without focusing on the minor setback.

I hope this is making sense.

Try to remember to moderate your life rather than walking into a loud music/voices/noise situation and such. I always have foam earplugs at hand.

Mark gives some fantastic advice. As Mark details, I'm at the stage where I know what will give me a setback (i.e. result in a recovery period typically 3-7 days). I've come to accept that these will happen and that there isn't much I can do about it other than decide on whether I'm willing to pay the price.

In a way this stage is nice for me. I don't get anxious over activities, head bumps, public settings, etc. Much of this has been enabled by more effective pain reduction, but also through acceptance of everything. It took me a long, long time to really come to terms with everything, and I suspect there will be more to come, but I'm at the stage where I'm trying to have more a life with PCS rather than rail against it in fits of anger and frustration.

Anyway, setbacks are a reality during a recovery. Finding your balance of activity and tolerance will be tricky, but it'll help you move down the recovery road.

I can only agree with what is described above. I have the exact same problems as you, and I become very anxious every time I experience something "untolerable". I can have a relapse from a high noise, sharp light, running etc., road bumps, jerks to the neck and then of course bump to the head.

I work a lot with anxiety, as I really think that that's why I continue to struggle (but that's just my own opinion - everybody is different). I had anxiety before the accident and has previously experienced hypochondriac episodes.

There are many who have the same problem as you e.g. Anja from Germany who is also on this forum. My strategy is to gradually improve my physical, health, eating healthy (anti-inflammatory), regular sleep (approx. 8 hours a night), working with anxiety (CBT), dietary supplements and avoid congestion.

I hope the best for you, and please let us know how the hug-problems evolve.

Red,

Sorry about the slow response to a serious question.

I find my setbacks for the most part are quite random and indiscriminate. What hurts one day may not hurt for a week prior of the same activity.

Noise and anxiety are still pretty constant reminders.

If the benefits out way the negatives of an activity I continue such as swimming. There are times it bothers me but by and large I receive good benefits from it so I continue.

As far as anxiety goes I spend a lot of time praying and reading my bible. I find God is a pretty good distraction and I can get my mind in other folks that way. I take breaks when I sense it escalating as well and sit still.

Bud