Hey all,

It's been a while since I've posted.

I was making some progress thanks to neuro optometry but not a lot to be honest.

Earlier this month I had a ruptured appendix and had a severe infection which required emergency surgery and removal of my appendix. I almost died but it seems I made it through.

This was hell to go through with my PCS symptoms. The worst part is since the surgery my symptoms have intensified dramatically. As I've written about before my worst symptoms are visual with my light sensitivity sort of being at the ridiculous level. I'm having to wear sunglasses indoors in the dimlight with earplugs.

I'm coming up on 3 years since the concussion that started this nightmare. I guess I'm really starting to lose hope as my symptoms don't seem to be fading and there is really no way a human being could live like this for many more years. There are so many studies talking about 2 years being the date when improvements are mostly seen and with my 3 year mark coming up it's hard to imagine I'll ever get to a point where life will have any joy to it. To put it simply, I'm running out of gas. It's amazing I've made it this far.

Overcoming PCS is possible. This forum contains countless success stories to get inspiration from. During my struggles, I would repeat "Patience, Perseverance, Persistence". I would often journal on it to cultivate belief.

You've already identified a weakness that you can build from. Since you're so sensitive to light and noise, you can do a 'Controlled Exposure Progression'. This means allocating some time every day to expose yourself to light for a short and controlled amount of time. Start out very easy and don't overdue it. As you progress you increase your exposure time and the frequency. You will develop the tolerance over time. This works for noise as well. Note, this intervention is very effective if done properly, meaning, go slowly. Take lots of rest in between sets.

Also, I would highly recommend getting some topical magnesium spray, and spray it along your spinal cord, particularly around your neck where the cranial nerves connect to the brain stem (base of skull). I would do this in the morning and at night. Magnesium is a nervous system relaxant that could serve to calm down your overstimulated 'stuck-on-repeat' sensory system. I think float tank therapy would also help with this.

I use this spray: Amazon.com: Ancient Minerals Magnesium Oil Spray 8 oz.: Health & Personal Care

Good luck

Hains

Thank you for the words of encouragement and advice, Hains.

I have seen the stories of healing and they are inspirational but the truth is most of these recoveries are occurring within 2 years. I'm almost at 3 years since the concussion that stole my life. This is what I'm struggling with. It seems that the longer amount of time it has been, the higher likelihood that the symptoms are permanent. It's hard to gauge but I am definitely worse off than I was at 10 months out. These are frightening realities.

I wish someone would chime in on my recovery timeline concern. It would be helpful to hear what others have to say.

Thanks,
Dan

Hi Danny,

My recovery has been slow. I felt worse 2 years post injury than I was 1 month post injury. And now I feel the best I've felt since being injured. I still have a ways to go, but I feel good and like I was able to make progress and still can.

I don't claim to be an expert on concussions, but I've never seen any concrete evidence of the "2 years number" that gets thrown around, I've just seen it get said repeatedly.

But there are newer studies that suggest otherwise.

Research - Watson Centre for Brain Health

I don't know how well that link embedded, but this is just 1 example of a study done by neuroscientists, showing improvements in people with chronic brain injury after the 2 year mark. If it didn't link properly, I can try again on my computer.

Also, maybe if you post more specifically, how your symptoms got worse, more knowledgable members of NT or other communities may be able to help figure out how to help improve.

Take care of yourself DannyT. I wish you all the best

Danny

Absolutely don't believe the timelines. I saw very little improvement in my condition until the 2 year mark and then my eyes started getting better very slowly - not as light sensitive and able to read for a little bit longer.

Year 4 not so good as I had a major virus and alot of family health stresses but now my 5th year in I am making big improvements. I don't need prisms for reading anymore, my eyes are less sensitive to light and I am less noise sensitive - I actually attended a concert in a small venue and took my earplugs out for the performance!

You were very sick and had a big setback but don't let this discourage you. I find that once I get through a setback I usually see significant improvements in my condition and I hope that you will too.

Danny,

Good to hear from you, I wholeheartedly agree with Estreet. I am 3.5 years away now and still showing signs of some major improvements such as being able to drive in busy traffic for more than a half hour know...just this summer I can drive the whole 2 hours home from my granddaughters house!

Other things not totally different but I do find myself neutralizing the effects better as I become more clever with necessary workarounds and catching the tells if I'm paying attention.

I had kidney stone surgery at 2 months after my head accident and para thyroid surgery 7 months after accident. The recoveries were unexpectedly traumatic and no doubt in my mind set me way back. When my doc told me it was time for a colonoscopy at 10 months post accident I said no chance in Hades was I going under anesthetic for a long while...did it 2 years later with no ill effects.

Estreet...good news!

You all take care!

Bud

So, for me some days I feel much more optimistic than others. This year, I experienced the first days where I could say I almost felt normal. My accident was in March of 2015, so it happened beyond the two year mark, despite my neurologist (and then neuro-psychologist) saying 3 months, no, 6 months, well, maybe a year. Huh. We don't know.

That being said, I also experienced a miserable month and a half in March-April of this year, when I swore my head was worse than it had been at 6 months post-concussion.

I don't think any of us really know how it will work out for us in the end, but I'm not giving up hope that someday all my symptoms will be gone. For now I'm grateful for the days when I can think a bit more clearly, and that my fatigue is finally starting to let up a little bit. The rest may or may not go away given more time.

I also have noted that I get the feeling I'm making progress after I've had a bad bout. Whether it's just wishful thinking, but I have noted that after a bad period (when I overdid things to the point that I went back down the rabbit hole) I seemed to have an easier time doing whatever it was I did that threw me over the edge. Exercise, cognition, talking too long, trying to listen to music)...it's hard work for your brain to re-wire itself, so maybe that explains the highs and lows?

I can also say it's easier now to understand what my therapist was trying to explain at the beginning, about identifying the edge of when you are overdoing it, and backing off before it gets bad. Perhaps I'm just finally at the point where there is a better, to be able to recognize the difference. Before everything was bad, so how could you tell if it got worse?

Karen,

Just this spring after three years have I finally felt like I didn't have to force my tired legs to run while on a treadmill.

Still have those heavy leg days but it sure is a pleasure having the good ones mixed in too.

Bud

Thank you so much for the messages of support. I feel fortunate to have a group of people who can understand some of what I'm going through. It means a lot.

I'm going to pursue vision therapy because it seems like the logical next step. I don't know what else to do.

My birthday is on the 7th. I'll be 29. I never could've imagined I would spend my late 20s in such a troubling state.

This really does feel hopeless and that I'm doomed to live like this for the rest of my life.

I was doing better mentally and feeling a little better with my symptoms. Then, I somehow stumbled upon this study which states that no one recovered after three years in their population. I am in despair reading this. Is there really no hope at this point with the three year mark coming up? This study seems to indicate there's not.

Longitudinal Study of Postconcussion Syndrome: Not Everyone Recovers