Vent - Setbacks are so discouraging!!! (looking for advice and reassurance)
 

Well, here I am...smack dab in the middle of a setback. For awhile there (one week) I thought I was doing pretty good. I honestly thought my brain had healed and what I was dealing with was the new PCS standard...

I was dead wrong!!!

I'm right back to square one with horrific cognitive symptoms; trouble thinking, word finding difficulties, severely foggy brain, spaced out, forgetful, trouble following a conversation, trouble getting words and thoughts out right, disoriented...its all there. It took me a solid month of cutting myself off from the world and resting to get that one good week. I don't know how I'm going to get any rest now with my son here. He's really not too much trouble and usually sleeps through the night...but, after a day of taking care of him I'm usually spent.

At one point yesterday I was so foggy and spaced out I couldn't even respond to people that were talking to me. I was at an AutoZone store and I felt like I was going to float into space...or pass out and die.

What to do...what to do?

I'm gonna just try to keep my head up. If my brain had the ability to function well like it did for that week...I'd imagine it could do that again. I just hope it happens sooner than later and happens more often. Maybe I'll get 2 good weeks next time, huh?

I could only hope.

Has anyone else experienced a cognitive setback?

How did you deal with it?

Thanks, I hope everyone is doing well with their recovery.

Nick

It sounds like you have a pretty good perspective on this, Nick. Setbacks will happen, and we just have to roll with them and hope that they become less and less frequent and severe.

I would recommend that even once you start feeling better again, you continue to take it easy as much as possible for at least several months. In July I thought I was almost fully recovered, and in August, after too much writing and computer work, I fully relapsed and ended up worse than I was after my initial injury. I didn't have any light sensitivity until that relapse (or reinjury) in August, and now it's my most disabling symptom.

Anyway, the point is just that even after we start feeling better, we continue to be very fragile for awhile, and we sometimes won't realize if we've overtaxed ourselves until it's too late. I found that out the very hard way; I was feeling much better for about three months, and then I overdid it and everything came back with a vengeance.

Keep hanging in there, man. I have some idea of how hard this has been for you. The fact that you had that good week is a really good sign.

Pete

I spent a week in the middle of a huge setback, too. Last weekend was my son's birthday, which happened to come right on top of my farewell from my job. Had a busy (well, okay, "normal") 4-5 days, which I handled pretty well. Was quite tired toward the end but made it through okay.

MAJOR crash afterwards. Could hardly move the rest of the week. Just now starting to emerge.

On the bright side, I was able to have a really nice birthday party for my son and participate in my farewell (both with help), which I would not have been able to do a year ago at all, even with help. Last year at this time, I probably couldn't even have made an appearance at either. This year, I was able to attend and participate, even if I didn't manage to organize or prepare much for either.

And, of course, I need some recovery time afterwards. As simple and normal as those activities used to be, nowadays they are like running a marathon for me. Even marathon runners have to take it easy for a while after their big events, right? RIGHT?? (Is there a marathon runner here who can help me out?)

It is discouraging to crash, but not entirely unexpected. And now I'm slowly coming back to more typical average. Hope you will be soon, too.

Thanks guys...I'm doing a little better today. My cognitive skills are still a little screwed up and I feel indescribably weird...but, I'm better than yesterday.

I actually ended up in the ER yesterday for something I thought was a mini-stroke. I was unable to speak and my brain was literally running on one cylinder. It was a very scary episode/experience, probably the worst I've had since I've been injured...but as I said, I'm better today.

Thanks for the kind words and support.

Nick

My son has headbutt me at least a half dozen times in the past four days or so. They weren't that hard but it makes me wonder if I've been getting mini-concussions from them which are causing me to have my current problems.

I know how indescribably weird, and scarey
 

Quote:

Originally Posted by nwsmith1984 (Post 858030) Thanks guys...I'm doing a little better today. My cognitive skills are still a little screwed up and I feel indescribably weird...but, I'm better than yesterday. I actually ended up in the ER yesterday for something I thought was a mini-stroke. I was unable to speak and my brain was literally running on one cylinder. It was a very scary episode/experience, probably the worst I've had since I've been injured...but as I said, I'm better today. Thanks for the kind words and support. Nick

Thanks, Nick, for your posts tonight. I am so glad for you that you are feeling better today.

I also have experienced a really disturbing major setback recently, which seemed to come upon me with what I as well was quite frightened were perhaps TIAs [transient ischemic attacks, aka mini stroke.]

It's been a while since I've posted anything online. Reading your post tonight on your particular experience of setback sure helped me to possibly be getting my own bearings straight on just what I may be experiencing. Such similarities.

I'll post anew/an update later for my profile/info when I'm feeling better up to the task. Meanwhile I hope for you, as for my self, and all of us, that our today will again be A Better Day.

"MAJOR crash afterwards. Could hardly move the rest of the week. Just now starting to emerge."

Thanks so much, Eowyn.
Your post so helped me to recall more accurately for myself
just what major *all* was going on, how indeed much-much too much I was doing-doing-doing (and not taking good care as a result) which led up to this present major setback/relapse/crash.

I was doing well and thus pushed myself way too hard on too many fronts. Like so many of us, truly "one Big Thing To Do" in a day is a limit that I've had to learn to honor and respect for myself, because it allows for the necessary recouperative self-care.

Otherwise, like you, I was outta commission for the rest of the week. And now as a result of my extended hardworking, hard driving myself day after day after day when I've felt "okay" to do so, I am feel totally Taken Out.

....
 

Hey Nick, im sorry to hear about your late struggles, wanted to ask you hows your NUCCA adjustments and neck ?

Yeah, don't underestimate the little head-butts. My son used to "hug-attack" me all the time. It's cute, but we had to put a stop to that. Especially with PCS, it's a matter of health and safety.

I forget how old your little guy is? 18 months or so, right? He should certainly be old enough for what the Love & Logic folks call "basic German Shepherd." That is to say, kids from about 9 months and up have at least equivalent intelligence to most family dogs, so you should be able to teach them simple things like "no," "down," "come," and get them to do them reliably.

You might have to practice a little bit every day and provide positive reinforcement (like you would with a dog), but you should be able to teach your son not to headbutt you.

If you want more ideas on this, I have some titles of parenting books for early childhood that I really like. I'd be happy to share.

I'm also in the middle of a setback. Last week I posted that I thought I was almost at 100%, and boy was I wrong. Pushed myself WAY too hard (spent 4+hrs on computer working on internship applications) and am now feeling how I did the first week of my concussion.

I'm a college student taking the semester off, so this whole thing is really frustrating and scary (as it is for everyone else). I'm trying to take everything day by day, but the thought of not being able to have an internship this summer or even going back to school in the Fall keeps freaking me out.

I haven't gone to a neurologist in 3 weeks or so.

Symptoms are headaches and dizziness with activity and slightly slower cognitively, some neck aches when at rest. Any new advice from anyone? Should I see my neurologist again/any other kind of specialist?