Overwhelmed!
 

The people here at NCEP are amazing. The staff is so nice and understanding. They are all well trained in brain injuries...The people here attending are so friendly and positive. Its truly a great place for me...I feel like I'm at home.

There's just one problem...I run out of gas so easily, my brain just shuts down without warning and I have to leave the class. I lasted through most of the day...but towards the end of the day, I attended a vocational class with just one other person. I was trying to follow along with the teacher (he spoke way too fast) and something clicked...and my brain just stopped working. I felt way weird and disoriented. I had to lay down for the rest of that class and missed the next one, too, so I could regain my composure. When I finally (somewhat) emerged, the day was already over. I stuck around after hours for some pizza and BINGO...and that was a failure. There was way too many people, voices and other stuff going on...my brain quickly shut down again. Unable to think, talk, express myself, etc.

I'm writing this from one of the rooms here...they are letting me chill out before I get on the bus. Man, this is so hard for me. Everyone else is just chillin, they don't have problems with overstimulation or anything...it sucks being the only one.

Is this even beneficial for me? I just feel like I'm delaying my recovery by constantly being overloaded by every class and conversation I have. I can't handle anything here :(...Its hard to believe its going to get any better...if it was going to get better, I would have gotten better by now because I've been moderating my stimulation at home...and slowly increasing activity before I even started here. Besides, this overstimulation thing was way better a few months back.

I feel good being around a lot of people who have brain injuries and specialists who deal with it everyday...but I still feel alone and frustrated. They are willing to work with me, let me take breaks and what-not but again...is this even beneficial? When my brain shuts down I don't retain any information...and after I rest, I shut down even worse and faster the next time. Its very scary...I feel like I'm going to shut down and never come back.

Waiting to be seen by their nurse and physiatrist. I was told I'd get a full blood panel and spinal tap if I wanted it. Would be nice to have those?

They want to keep pushing me until I break...The "shut down" is getting worse, happening faster and lasting longer each time it happens. I don't know what to think or do???

Thoughts? Advice?

Nick

Oh, I've also been told to watch for the warning signs and stop before I cross the threshold...I haven't been getting any warning signs lately. Its just been happening out of the blue.

You are getting the warning signs. You just are not paying attention. They are usually very subtle. If you wait for them to shout at you, you have waited too long.

When you realized the teacher was talking too fast, that was a sign to exit the environment immediately.

It is likely that many of the others have more focal injuries that resulted in coma. You may have had a focal oriented bleed but you entire brain was concussed.

There is a big difference in the over-stimulation issues with PCS compared to a focal injury with coma. The focal injury with coma are in need of waking up pathways that were dormant during the coma.

You have pathways that were damaged and need a slower route to recover.

If you find a place to get away from the sounds and other over-stimulation, you can make NCEP work.

Now, you know to avoid the classes with too many voices and the fast talking teacher. There will be other environments you will need to avoid.

Do you take your foam ear plugs with you? It may help to try wearing them during any classes with lots of sound. Some rooms may have an echo problem. The ear plugs will help. You will be surprised how well you can hear in a classroom while wearing your ear plugs. They will also be a sign to the staff that you are struggling with sound.

There are plenty of skills you can rebuild before needing to train without the ear plugs.

I have never been able to completely recover a tolerance for sounds. So.. I have to use my ear plugs frequently. I use them as a preventative measure sometimes. If I become aware of the sounds, I know to put them in just in case.

Anytime you start noticing or focusing in on a specific stimuli, a sound, light, or voices, it is a sign that your brain has started to be over-stimulated.

In most situations, you should not look for this stimulation. If you enter a room where you have a history of over-stimming, and the same environment exists, turn around or do something to mitigate the stimulation. In the others, just wait to respond to the sense that your brain has started to key in a stimulation, then take proper measures.

I hope this makes sense. You will need to work hard at not obsessing on any little detail. Learning to not get stuck in a minor obsession will be important. If you have a moment of confusion, try to ignore it and go on. If it repeats, it is time to do something.

My best to you.

Maybe try using those breaks away to just rest and recompose yourself. Try not to type out these long questions on NT when you should be resting because you may be wasting extra energy when you need it to focus on your class. Focusing on the small screen on your phone when you are already feeling foggy, may only make it worse.

Also, you may want to try to stop worrying about how everyone else is doing in comparison to you because everyone is suffering in their own way...and also, not everyone is as vocal as you are about your symptoms. I know when my fog came on, i became non-verbal, motioned with my hands to whoever was with me, to give me some time, and waited for it to pass, and just moved on afterwards. I didnt like to broadcast that i was having problems because i didnt want to be tended to like a patient (since im normally the one taking care of everyone else). So remember that some of those people in your class may be suffering as well, but doing the best they can to do whatever they can do.

In my professional and personal opinion, you do not need the "spinal tap" or lumbar puncture (LP) as it is called in the medical profession. It is a procedure that has its risks and those risks may very well outweigh the benefits. There is no evidence of increased ICP on your scans and you dont need to look for infectious causes to your current issue because we know you had a TBI.

With an LP, you are accessing cerebrospinal fluid (CSF) through the spine and sometimes that incision they make does not always close completely and you can end up with a CSF leak and a spinal headache. You were very fortunate to not have headaches as part of your PCS.....a spinal headache is just as bad as the worst headache you can imagine combined with the worst photophobia you could ever imagine. So you DO NOT want to add that to your current problems.

I personally have had an LP when i had meningitis 9 years ago, and i had a CSF leak and the spinal headache. Its the worst pain and misery you could ever imagine. I also work in Radiology now and we do LPs all day long, and sometimes we have to repair the leaks on our patients that get a CSF leak and the women usually say its worse than giving birth without an epidural. So basically what i am trying to say, dont have an unnecessary, risky procedure just because you dont have an answer that satisfies you about your fogginess.

Do the best you can each day, and wake up in the morning thinking every day that you will make a small improvement in what you can handle each day and before you know it, you will start improving your days there. Good luck.

Thank you both so much for your wonderful responses. I'm truly greatful to have your support and friendship.

I'm too exhausted to write any more than this. Just got out the shower, taking my meds and I'm off to bed. Another long day tomorrow.

Cheers, thanks again!!!

Nick