[missestlewis]

Hey everyone - You have probably answered this question a million times for others but I am pretty desperate at this point to find out information and just entirely to exhausted to keep searching!
So my little brother was injured about 2 weeks ago in a motocross accident and has very severe brain damage or a "TBI"..
He has now hit the "storming" part of the injury and while we are being encouraged that the storming is good for Andy, I don't see that positivity in all the things I am reading.
I understand the overall of the symptoms, and realize there isn't any actual scientific explaination for it happening, but is this a good thing?!
From what we are being told the storming is his brain actual trying to "reconnect" - which would be a good thing, but like I said - the things I am reading are not giving me much hope!

Please explain, any information that you might have would be great but my main concern is - is this good for him to be doing!??

[Mark in Idaho]

Sorry to hear about your brother's injury.

I doubt there is much experience here with sTBI and storming. I did a quick google of TBI and storming and found a few references. Hope you find the references if found.

My best to you.

[litliwlowa]

Originally Posted by missestlewis

Hey everyone - You have probably answered this question a million times for others but I am pretty desperate at this point to find out information and just entirely to exhausted to keep searching!
So my little brother was injured about 2 weeks ago in a motocross accident and has very severe brain damage or a "TBI"..
He has now hit the "storming" part of the injury and while we are being encouraged that the storming is good for Andy, I don't see that positivity in all the things I am reading.
I understand the overall of the symptoms, and realize there isn't any actual scientific explaination for it happening, but is this a good thing?!
From what we are being told the storming is his brain actual trying to "reconnect" - which would be a good thing, but like I said - the things I am reading are not giving me much hope!

Please explain, any information that you might have would be great but my main concern is - is this good for him to be doing!??

I use a different search engine that google, and found this reference fairly quickly, as well as a few others.

**
**

Also, pubmed has articles on this subject but to access the content requires registration. I believe registration on that site is free.

I'm thankful you asked this question. I had no idea of "storming". Connects some missing dots for me back to my early post TBI days. From the inside perspective of a TBI survivor, who had no family support at the time, it was very distressing and embarrassing to experience these episodes having no clue as to why they were happening nor even why they were happening.

My other injuries were so severe, that the hospital attributed everything to severity of internal injuries - including a drop in my Glascow score from 13 at the accident scene, to 3 at hospital for a period of hours. Persistent retrograde amnesia x 3 in hospital, diagnosis they gave was deep cerebral concussion. Yet no mention of TBI in my hospital records.

I was forensically diagnosed several years later with TBI: closed head, coup contrecoup/diffuse axonal injury and cumulative frontal lobe injury.

Your little brother is very blessed to have such a caring and concerned sister.

It appears that this storming is episodic in nature, and consistent with diffuse axonal injury. One way you can help is to try to assist in identifying what triggers these episodes for him.

In retrospect, for myself I can say that in the early weeks following my apparent storms, sensory overload was a big trigger as well extreme fatigue, and way too much stress.

Your little brother's triggers are going to be specific to him.

[missestlewis]

We have definitely noticed that movement (when we move him from the bed to the chair) is a HUGE trigger and it takes him a good while to settle down.
He also doesn't like when we say "goodbye" to him and often throws a hissy.
However, they just come; even when nothing is going on so there are times that there is no trigger.. which I don't understand.
I know it has to do with the axonal injury ... but I can't figure out if they are good or not.

How is your life today after the TBI? Are you required to be careful when you do things?! Do you function daily on your own!? How long were you "storming".

I am so sorry to hear you had no family throughout your ordeal.. I can't imagine how frustrating that was, I hope they are there for you now.

[missestlewis]

Originally Posted by litliwlowa

I use a different search engine that google, and found this reference fairly quickly, as well as a few others.

**
**

Also, pubmed has articles on this subject but to access the content requires registration. I believe registration on that site is free.

I'm thankful you asked this question. I had no idea of "storming". Connects some missing dots for me back to my early post TBI days. From the inside perspective of a TBI survivor, who had no family support at the time, it was very distressing and embarrassing to experience these episodes having no clue as to why they were happening nor even why they were happening.

My other injuries were so severe, that the hospital attributed everything to severity of internal injuries - including a drop in my Glascow score from 13 at the accident scene, to 3 at hospital for a period of hours. Persistent retrograde amnesia x 3 in hospital, diagnosis they gave was deep cerebral concussion. Yet no mention of TBI in my hospital records.

I was forensically diagnosed several years later with TBI: closed head, coup contrecoup/diffuse axonal injury and cumulative frontal lobe injury.

Your little brother is very blessed to have such a caring and concerned sister.

It appears that this storming is episodic in nature, and consistent with diffuse axonal injury. One way you can help is to try to assist in identifying what triggers these episodes for him.

In retrospect, for myself I can say that in the early weeks following my apparent storms, sensory overload was a big trigger as well extreme fatigue, and way too much stress.

Your little brother's triggers are going to be specific to him.

Also you say that it was embarrassing for you because there wasn't anyone there to help you, are you saying that you remember your "storms?"

[litliwlowa]

Originally Posted by missestlewis

Also you say that it was embarrassing for you because there wasn't anyone there to help you, are you saying that you remember your "storms?"

Some of them I do, others I am aware of as people around me brought them to my awareness.

These were very early after my injury. Plus I was under a huge amount of personal stress, as single mom of two daughters ages 6 and 8 months, and zero help at home, as my mother only stayed two weeks after my discharge. She had told social worker at the hospital she would be at home to help.

I was so exhausted once home, having no understanding of why my brain wasn't working right, and no idea of who to reach out for help to, let alone how to reach out and no clue how to verbalize what help I needed.

After my mom left, my six year old ended up having to take care of her sister, like bathing her as I couldn't bend at the knees. She was still helping me dress myself. I slept so deep I never heard my baby cry in the middle of the night and my oldest couldn't wake me up to tend to her.

Clearly the stress level contributed to my "storms". It was very confusing to my oldest daughter as well. She remembered "mommy" before, and this person who looked like her "mommy" had changed.

The rest of my family went on with their lives, assuming that my mother was staying and helping as long as it took. My having no understanding at all beyond deep cerebral concussion diagnosis back then that was less than helpful.

I was discharged way too early from hospital. My lead surgeon made my said to be "miracle recovery" a teaching case at that hospital. But to be blunt, being a "miracle recovery" is not at all as "wonderful" as it appears.

[Concussion]

"Storming" is the brain's rebalancing attempt of the Sympathetic and Parasympathetic Nervous System, which, after a severe TBI, can occur any time from 24 hrs. to weeks after a severe TBI, and last for a long period of time in that phase of 'recovery'.


This Critical Care Nursing Handout Family sheet is informative/helpful. (click on yellowed text for larger readable text)

[missestlewis]

Yes I am aware of what it is, however there isn't much information at all on it - I am seeking out people who has been through it; for information.. any information that people can give me would be great but I guess I am looking for the experience of it all.

Thanks!

[supermansmom]

My son went thru several bouts of brain storming. It is very frightening to go through. However, after each bout of storming, we would see improvement. One thing that seemed to help with him was to give ice cold sponge baths while storming. The nurses at his care facility tried to keep pushing Ativan to calm the storming. I finally said no because it would put him from a vegetative state into a coma type state. His neuro agreed with me after she returned from vacation. BUT I am NOT a doctor so the Ativan is just my personal opinion.

[litliwlowa]

Originally Posted by missestlewis

Yes I am aware of what it is, however there isn't much information at all on it - I am seeking out people who has been through it; for information.. any information that people can give me would be great but I guess I am looking for the experience of it all.

Thanks!

Please clarify a bit what you're needing. Are you trying to understand better what your brother is experiencing from the inside--->out view of tbi?

I've been through it from the inside tbi--->out

Or are you needing more from the experiences of others who have been through this from the perspective of outside--->inside tbi perspective?

I think one poster mentioned a video titled "You Look Great". It's an outstanding inside tbi--->out perspective. John's injury was many more years recent than mine, and he had really great rehab and support systems. I have one of the first complimentary copies of the dvd version. He and his son worked together to put that together. Well worth a view. Insightful in an understanding way so that those outside of TBI can get a view of how some things really change for us.

In recent years, John has been trying to distribute copies to TBI rehab facilities all over the US.

TBI and all of it's "features" are as unique as a fingerprint. It is as complex to the "patient" as it is to loved ones. So there really is no simple answer that anyone can give you regarding your brother that is going to "fit like a glove".

The storms in the early period following TBI can be very confusing as well. When I was experiencing mine in the early months post injury, it was really weird for me. They'd come on suddenly out of nowhere and pass as quickly. Very confusing to me.

Totally out of character for one thing. At the same time, aware it was happening - this then "nameless thing", at the same time feeling more like an observer when it was me actually having the "storm", and being completely unable to "rein in it". It was my "mouth motor" that was most affected, well and emotions too.

There was one store I had a "tbi storm" in that I had so embarrassed myself, I never went back in there. It was about 2 months after my injury. The really embarrassing part was the whole store heard me, and yikes why did I have to be blessed with a "stage voice" that projects really loud!!??

By the way, if I may add this also. Waking up so to speak with a TBI, where brain doesn't quite work the same as it did, well..it is beyond frustrating. I can't speak for other survivers, but I did then and I still today remember who I was before and how dramatically so much changed like flipping a switch.

It was a very frustrating adjustment period, and part of adjusting was also going through the various stages of grieving.

I don't know that this helps you in anyway, but I figured I'd post it anyway.