I'm on day 5 of the worst setback/relapse I've ever had...and its not getting any better. I can not put in words how horrible my cognitive problems are. I don't mean just forgetting what I was saying/doing or getting lost. I mean...my brain is running on literally 1 out of 8 cylinders. I had trouble dressing myself today. Yesterday I was in the ER for the second time in 5 days because my brain shut down completely. I wasn't even able to speak.

I don't remember ever being this bad...even immediately after my injury and when my PCS symptoms showed up.

Sleeping doesn't help. Peace and quiet doesn't help. Its not over-stimulation because (besides the trips to the ER and one chiro appt) I haven't been doing anything...besides taking care of my son.

Its to the point I can just barely take care of my son. I have nobody to help with him...my mom works full time and goes to school, my younger siblings are too young and they go to school and my son's mother is transient.

Do any of you guys experience things like this? I don't get it. I've heard of people having relapses with headaches or dizziness but not a cognitive relapse where the brain stops working completely.

I'm at 9 months...things should be getting better, not worse, right?

It took me an hour to write this.

Sorry to hear about your set backs. I can imgaine having to raise your son with PCS can be a massive challenge and each day must feel like hurdle. From a spiritual standpoint sometimes I wonder if we were given this challenge to overcome in order to become stronger souls.

I'm at a year and 1 month. Recently I too have been getting worse. It seems like a platued in my recovery...remained constant for a few months and am now regressing. Very frustrating.

I hope you get through today and tomorrow brings some joy into your life.

I have delt with sit back after sit back. I'm glad you still have hope. I ran out of hope around month 7. I hope you feel better soon.

I don't see any pattern in this PCS thing. Today might be the worst day but next day might be the best. Also, taking care a baby is a big job. I cannot take care of my little one for more than 30 minutes when I have symptoms. Just don't lose hope.

I highly doubt tomorrow is going to be any better than today. Its been 5 days of pure hell...each day getting worse. Its not headaches and dizziness I'm dealing with. Its pure cognitive hell...I'm functioning at an extremely low level. The doctors can't figure out what the problem is. People are saying that I'm doing too much...I'm not doing anything. I'm just here at the house with my son.

I'm sorry to hear about your set backs...they can be awful. I don't think what I'm dealing with is a set back. It feels like a million more of my brain cells have died and I'm just retarded now.

Just to rule out anxiety, I took 0.25 of Xanax. It made me WORSE.

No headaches, no dizziness, just plain retarded.

If this lasts another week I'm guessing its permanent...and if its permanent...I honestly give up. This is pure torture.

Am I alone on this? Has anyone gone through this too?

I'm in tears right now trying to take care of my son. I'm on the verge of calling CPS to put him in foster care.

I'm so sorry to hear that NW. I am 2 years and 4 months post injury and I too have experienced many "set backs". Johnson is right, taking care of a little one is really tough. When family comes to visit with their little one(s), I can hardly manage and often will excuse myself and go to bed. There has been the odd occasion where I will babysit, but that has to be when I'm having a good spell and not for long. There is no worse trigger for me than crowds or children. As I type this I feel bad because it sounds like I don't like kids! No, I love my grandkids! But, kids tend to get excited, talk a lot (LOL), get excited and want to play - they're kids!!!

I would not be a bit surprised if taking care of your son is just a bit too much for your symptoms. Sounds to me like you could use some help.

I started back to work slowly with only a few hours a week, but all of a sudden, I had symptoms much like you are describing here. I was worse than I had ever been! I couldn't talk or function much at all. I could get dressed myself and get myself lunch, etc, but I would space out and just sit for hours. It wasn't like I had a seizure or anything. I was somewhat aware, i just didnt' have any energy or brain space for anything. Not even to watch a silly TV show or listen to music. Just space out.

Here's the good news. I'm much better again. I stepped back from work and started up again slowly. 5 Weeks later and I am back to my pre-setback self and am improving very slightly, however my "set back" lasted several weeks. It seems that if I add any amount of time to my work hours, I feel it. So, I am going very very slow. I'm working 3 hours a day; four days a week with Wed off. That mid day off (and all to myself) is the key for me. If I work just 30 min extra, boom - I feel it. And I am working from home at my own slow pace with no pressure or expectations. I am so lucky to be able to do this. I have an amazing employer and my boss is very understanding. For now anyhow.

One of the key things that I had to accept was that I needed an increase in my dosage of antidepressants. That helped me deal with all of this. I was very resistant, but without the increase, I don't think I would have moved forward. But that's just me and my situation - depression is/was quite a problem.

Oh - one more thing. I changed the terminology I use when this happens. I no longer call it a "set back;" rather I began calling it a "flare up" of symptoms.

Good luck to you - hang in there. You will regain your pre flare-up state and then take further baby steps in healing and coping.

I'm so sorry to hear this, Nick. I'm rooting for you and I very much hope you are able to get some relief some time soon.

I think it is far too early to come to any conclusions about your symptoms being permanent. A lot of people have continued to recover years after their injury (Gail Denton, author of Brainlash, is one such person).

It's really too bad that you don't have someone there helping you out and giving you support. Believe me, I know how difficult that is; I'm in a similar position in that I'm largely having to fend for myself these days...although I don't have to also take care of a toddler on top of that. Is there anyone close by who you can reach out to for help?

Stay strong and stay brave. Never give up.

Pete

Soccergal, Pete and others,

After reading your responses, I feel a little better about my situation.

I'm getting a little help from my youngest sister. She's playing with my son right now while I eat, take my vitamins and medication. Its getting close to his bed time...so I'll be able to relax soon.

*sigh*

I'm doing everything that is possible to benefit my recovery. Its discouraging when you give it all you got and still get the ****** end of the stick.

Glad to hear you're feeling a little better. I can imagine how frustrated you must feel.

Sometimes those of us who try the hardest and seem to make good decisions just get eaten alive by life, while others who seem to live recklessly and make poor choices just have things fall into their laps. It's very frustrating and unfair, yet there's not a thing we can do about it, aside from doing our best to control how we react to the situation. This is an almost daily struggle for me--to work on accepting the unfairness of it all. Just as important is finding ways of keeping ourselves going despite all the discouragement and setbacks.

One thing we can do is give ourselves credit for the little things we accomplish. We can set very modest goals for ourselves and maybe each day just try to do one nice thing for someone. It's so important for us to feel like we have control over something, and there are always things we can control, even if it's only how we react to a situation. You can stay strong and virtuous and not let a tragic situation destroy you. You can make your life meaningful by making a difference in your son's life, or your younger siblings' lives, even by doing very small things. You can refuse to be defeated by this condition, even though you are suffering so intensely.

Pete

That is a very good way to look at it. Making a positive out of something very negative.

Its funny you say that...about doing everything right and people that live recklessly. There is a mutual friend that myself and my ex-fiance have that was beat half to death by a group of guys. He suffered a severe brain injury. He drinks alcohol everyday, smokes cigarettes, pot and probably other stuff we don't know about...and he's doing just fine. He parties, goes out and has fun, plays video games, etc.

I just don't get it. My injury was considered mild, I'm eating somewhat healthy, drinking lots of fluids, taking vitamins, avoiding things that cause symptoms...and my life is hell.