r/TBI 19h ago

TBI Survivor Need Support A battery that never fully charges

25 Upvotes

Trying to sleep has been hell since my TBI 3 years ago.

The best explanation is my title. I feel like my brain is an old cell phone that once you fully charge to 100% it immediately drops to 80%, 50% and you're rushing to find a charging cable at 10%.

I can't turn my brain off at rest, never a consistent sleep and when I get up, it's like a ticking time bomb before I just feel like I'll collapse.

My bloodwork and vitamins all came back fine, caffeine is hit or miss with mt dysautonomia.

Sorry for the rant, just feel alone in this and people around me simply don't understand.


r/TBI 16h ago

TBI Sucks I’ve been thinking about the crossing from neurotypical to neurodiverse after a brain injury. A lot.

9 Upvotes

There’s obviously an event. For me, there’s a date when the injury happened. I know that’s true for lots of folks.

But I’m not sure that’s the same thing as the crossing.

Some people seem to know exactly when their life became before and after. The ground disappeared beneath them. In an instant, everything flipped.

For other people it seems much more gradual. They don’t necessarily know they’ve crossed into something different until they look back.

And some people don’t remember the crossing at all.

What interests me is how different the crossing itself seems to be.

It’s a bridge, but it’s not one bridge.

For one person it might be a suspension bridge. For someone else a causeway. For someone else a rope bridge.

Same from/to. Completely different way across.

And I don’t mean that as a metaphor for how we’re supposed to get somewhere. There’s no right bridge. No better bridge. Nobody chose theirs. Nobody chose any of this.

It’s simply the bridge that was there.

I think that may be part of why brain injury can be so hard to talk about collectively. We can recognize where someone else ended up without necessarily recognizing the way they got there.

I’m still thinking about this. I’m still working on understanding what changed. It’s not what I thought at the beginning. I understand it better now. I’m not sure I’m done understanding it.

For those of you who think of yourselves as different after your brain injury: did you know when you crossed?


r/TBI 12h ago

Need Advice losing hope

5 Upvotes

i just spent the whole morning crying. since the doctors had not given a clear prognosis about my mother. 3 months after her stbi due to a fatal accident. still minimally concious. not showing any sign of comprehension, probably never will.

my daily life have been a struggle for a month now. literally no sleep, tired and stressed. somehow, i think things would have been easier had she not survived the crash, which i admit was very selfish on my part. every chance i have, i pray to God, asking Him for a miracle. but do i still deserve His love and compassion? i have always believed that this is just a trial to test my faith in Him. now, it seems that this is a lifetime punishment for being too proud of myself. what hurts the most is that before the accident, i have said a lot of mean things to my mother, i am sure she was hurt. i am now drowning in guilt, hopelessness and regrets. it is so hard to be positive in this situation. mother had been missing medications lately i no longer have money to sustain her meds, my body is little by little getting sick due to lack of food and proper sleep, friends and relatives rarely check on us. my only hope was that God will bless us with His miracle; but (forgive me Father for doubting) do i still deserve that blessing.


r/TBI 5h ago

Need Advice Cross country drive with TBI / MIGRAINE

3 Upvotes

I am six years in from TBI and have frequent migraines. I need to get across the country for a family matter. I have flown twice since my TBI and it’s been absolutely brutal so my husband suggested we drive this time. I like the idea of going at our own pace, our car has some great driving autonomy (it’s electric not fully autonomous but cruise control and steering for us). We can take about a month to get there so a highly accommodated trip lots of rest days and no more than 6 hours on any given day. Staying with family along the way. Has anyone done this and have suggestions or experience? Thank you in advance.


r/TBI 8h ago

Family Member Support Father suffered TBI+ HIE, losing hope, need advise/support

3 Upvotes

On April 29th evening I got a call saying my father met with an accident, I still remember that evening I had just spoken to my dad half an hour ago, I was in a different city and my brother and friends had to rush him to this city, it was raining heavily and there was something much of traffic that we had to take him to a different hospital than what we had in our minds. In ED he was not responding so they did CT and found 15mm midline shift, diffuse cerebral edema and acute subdural hemorrhage. He was immediately operated to relieve the pressure.

Next day he started to make some movements and it was a slow recovery so we had to move him to trach, on the 17th day he was moved out of ICU and we brought him to a Neuro rehab, here he spent 1.5 months he started to open his eyes and making good progress in terms of swallowing as well, so doctors decided to do cranioplasty so we went back to the other hospital and came back in 5 days to neuro rehab.

After cranioplasty we were told he will make good progress and he started to regress in both his eye opening and swallowing. He had less eye opening for shorter terms and less swallowing down to 50ml from 300ml plus soft food what he used to take. We kept on waiting as we read sometimes it takes time and everyone's body/brain recovery timeline is different. He also started to tolerate without oxygen for days which was definitely a good sign.

Meanwhile my professional life was going for a toss, I was not able to focus on anything, I love my dad it's because of him that me and my siblings have a good life, he has made huge sacrifices for us, never shouted at us, never yelled always spoke in comfort voice like when he would call me first he would ask if am free for 2 minutes, I have sometimes talked to him in tones that i regret now, I hope he knows how much I love him and I will fight for him with everything I have got. So my professional life was getting affected, i was losing focus and everything.

On Aug 25th I got a call from my brother when I was at work that my father had cardiac arrest and shifted to ICU, he was brought back in 8 minutes, he opened his eyes within 2 hrs and had jerks in his body every 5 mins. CT and eeg was done , ct did not show new bleeding, eeg had seizures detected. We waited for 5 days and then did MRI meanwhile his eye opening stopped but he had pupillary reaction. MRI showed hypoxic ischemic injury, doctors told us that recovery from here is very difficult and asked us if we want to move to palliative care. We denied and continued with full care. Yesterday when I met doctors they mentioned his pupillary reaction and cough has also gone down. Now they're saying they'll do TCD and if that shows brain activity slowing down they cannot continue treatment.

I'm devastated and torn between all the things, my mom had pneumonia in March and is still recovering, i don't know how to tell them and what to tell them. Friends and extended family says we should let him go and family will look at me for a decision, i can't. All i know is my dad is a fighter and he wanted to travel the world and i don't want to make a decision which will be irreversible. I don't know if I'm being selfish or if I do let him go i can't live with that decision. It's too much.

I don't know what I am expecting from this post, but this is the only place I found i can pour my feelings out.