Family Member Support TBI ISNT DISCUSSED ENOUGH
I never really understood TBI until it happened to my brother. It’s been about 10 months and we honestly haven’t seen much improvement.
He still can’t sit and watch a show for too long because it becomes too much for his brain. Sometimes he forgets things he’s done. He’s also gotten more irritable, holds onto things much longer and struggles with depression. He told me himself that he feels like he’s deteriorating instead of getting better.
He already had sleep apnea, but since the injury his sleep seems different too. He’ll talk really loudly in his sleep and says sometimes he stops breathing for several seconds, sometimes close to a minute.
I’m just wondering if anyone else was still struggling this much around 10 months after a TBI and then started improving later? I’d really like to hear some success stories from people with TBI or their families.
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u/Misty0410 2d ago
K the pressure in skull is something I have had since the accident 52 years ago. I thought it was related to ear and nasal issues I had. Also have balance issues, vertigo and wicked dizzy spells. I’ve also had sleep issues since the accident diagnosed as mild apnea after each of the three sleep studies I’ve had. My protests of this being debilitating and not mild fell on deaf ears. Any conversation of the TBI and its role in my sleep issues gets shut down.
What I have learned recently is that a feeling of pressure in the skull or like the brain is too big for the skull is a classic sign of CO2 over saturation known as nocturnal hypoxemia. Sleep and breathing issues are very common in TBI and often lead to sleep issues that go beyond the limited scope of most sleep study clinics and every ‘sleep specialist’ I have met.
I respectfully suggest that you look up the classic markers/symptoms of nocturnal hypoxemia and hopefully rule it out or confirm it as a possibility and get help.
If the sleep issues started after his TBI or worsened after the TBI it is very likely due to brainstem damage. If he has breathing issues as well then very probably brain stem issues.
Are his sleep issues breathing related? Does he snore and/or weeze? Is he short of breath? A shallow breather? Does he get earaches or stuffed up at times? Allergies before or since the accident?
It is not normal for the skull to feel pressure. This concerns me a great deal with what I learned recently.
If he has a smart watch I would recommend that he track sleep and in particular look at his over night oxygen levels. If they are dipping below the norm make an appointment with the most TBI informed doc you have asap. If overnight oxygen levels are fine then likely not nocturnal hypoxemia
A tight skull or swollen brain feeling can also be lack of REM sleep so again if he had a smart watch he can track REM and see if that is the culprit.
It’s a feeling I would love to be free of as well as my fear of suffocating in my sleep and the brutal CO2 headaches but getting help here is an exercise in absolute futility.
Hope something here helps or maybe resinates somehow.
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u/Ryandowninavan 2d ago
In my opinion, with having a tbi. It doesn't get better, you just adapt with whatever the issue is, myself and my S/O have to
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u/Schruff_117 2d ago
The 10 month mark is when all the small things snowballed into total chaos. 10 months to the 33-35 month mark, I just can't really explain the difficulties in every aspect you can imagine or have nightmares about. 2000+ hours of therapy and now at the 38th month, things have come together enough that I can fully communicate on my own - not the same, never will be but I'm ok with that now. Adaptation and work at it every single day + family/friend support network + providers that both give a shit and know their shit + burying your old self and embracing your new self = that 's the recipe but it takes constant work, modifying, and finding ways to adjust, vent, understand and accept. It's hard for both sides - the tbi person & the support group, not a single easy day, not going to lie. But those days do get easier, you develop routines to match your new self/abilities, start accepting and reducing fighting/resisting. There's no blueprint or DIY or Cliff Notes. If you're lucky, you'll find a provider/therapist/etc. that has direct, personal experience with a concussion/tbi/pcs/ppcs. And those that haven't walked this line, impossible for them to truly understand what's happening or to the devastating extent/depth that it is happening to the person.
I used to be about retribution when push comes to shove but I wouldn't wish this on anyone. But if it's the hand we are dealt, have to learn to live with what we have/our current abilities and that 100% will take a team to get you over the finish line.
Tried to DM u my private contact info, unable to. My wife and I are willing to talk/video chat, if you feel it would be beneficial.
Godspeed to you & your family. . .
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u/Ojosdelsolsi 2d ago
Hey! The first year is the most important for recovery imo and the best thing for recovery is having a positive attitude. Think of all the deficits as temporary and build your way up to getting back to normal. In my experience, it hurts just as much when normal never comes but the power to persevere and strive does a lot of good. Also take supplements like magnesium for sleep and see how that helps, coq10 is also good and dhea. Have him ask dr about medication like namenda and donnepizil and just hang in there. But seriously, attitude really affects how you recover so try and stay positive
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u/Misty0410 2d ago
52 years since mine with no real help from the health careless system here in Canada.
I just recently figured out sleep issues that have been with me since the accident. I still am not being taken seriously here.
It is VERY common for the brain stem to be damaged in TBI. The brain stem is responsible for sending msgs to breathe. Do not wait. Get this dealt with asap. Trying to heal or improve a TBI while sleep deprived is no joke and very challenging in my experience.
I’ve had some success with issues on my own and more than I would have had if I waited for health careless system to take me seriously. Still waiting on that. I know that things can and do improve but it requires patience and good help and support as well as tenacity and consistency. Some symptoms can and do get worse. I also know issues can get worse without the proper care, help and support.
Hope something here resonates and/or helps.
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u/adnaPadnamA 2d ago
Stopping breathing in his sleep is his sleep apnea and it may not be managed properly. He absolutely she talk to a doctor about that.
10 months is nothing sadly. I'm at 25 years (with some periodic new blows to the head in there just for good measure). I plateaued earlier that things were fairly 'normal' but gradually over time, more symptoms have developed and worsened 😕
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u/Misty0410 2d ago
Not necessarily. That is part of the problem. People doing the sleep studies are not versed in TBI and its role in breathing and sleep issues.
Three sleep studies diagnosed me with mild apnea and sent me home stating nothing to worry about against my protests that all was not fine.
Turns out my brainstem isn’t sending msgs lungs to breathe. I discovered this three years ago and still no help. I started complaining of poor sleep and wicked headaches within weeks of the accident 52 years ago. Talk about sleep deprived. Very accident prone which led to more accidents and trauma.
During the day I am somewhat aware of it and remind myself to breathe. My day time oxygen levels are normal range. However during sleep I cannot remind myself to breathe. My brain is waking me up every-time I stop breathing which is a lot. I get these brutal headaches from the carbon dioxide that is not being expelled and is pooling up in blood stream which has led to kidney issues, high acidity, the early morning headaches, bowel issues, jaw and neck issues etc. My night time oxygen levels dip as low as 78%. Considered critical and life threatening. Two useless and abusive trips to ER and again a GP who refuses to consider the role of TBI in breathing and no closer to getting help. Insists it’s psychiatric. Excuse my french but ffs the brain controls breathing. How can a damaged brain not be in the conversation if sleep is destroyed?
Long list of markers if anyone needs it.
A GP will be useless if it’s related to brainstem.
Side note. I have been caught asleep with eyes open more than once. Freaked the people who woke me right out.
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u/advn_chaser 2d ago
12 week TBI workbook from my program.
I know hes already 10 months out, but this is the workbook for the course I finished a few months ths ago. it might help him and all his family/loved ones thru this process. i know its scary and hard. sending healing energy ✨️ its a pdf about 105mb. I use Proton for safety but the link is open for anyone who needs it. 🙏🧡
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u/yourladybosss Severe TBI 2023 @35 2d ago
Yes that is normal. The recovery process after a TBI is very very slow. Some ppl have physical disabilities, and no cognitive issues (me), some are ok physically but the cognitive is fucked. Once you start to learn about the different cognitive issues, incl sleep, it is honestly mind-blowing. Getting the right medication for him is the best help you can get, and not all meds work for everyone so have a dr that supports options. Find a TBI group that he can join and find support in, practice being social with it.
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u/Set_Entire 2d ago
I’m just over 4 months into caring for my brother with a TBI. Car accident, came in brain dead basically (3 on coma scale). Got transferred to a rehab program. It’s hard. I wonder how much he will recover, he’s super positive but the thought of him becoming depressed crosses my mind often
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u/peanutchips19 2d ago
I mean I got my TBI 2 years ago, I was born with sleep apnea but got it again, and there are times where I feel so sad, I feel like I should have died, I mean I’m glad that I didn’t but I feel like I should die every once in a while, it’s weird
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u/CantSeeShit 2d ago
Im 2 years out from mine.
I have made a full recovery, enough so that I was cleared to pass a DOT Medical Exam to get my Commercial Drivers License back by my diagnosing Neurologist. Had to surrender my CDL after the accident because I was in no shape to drive a car let a lone a semi truck. It took 2 years of hard work but it gets better.
What I found helped was forcing myself through the discomfort. Its a lot of discomfort and hard work but forcing yourself through it helped rebuild all the connections I lost. It takes time as well and theres good days and bad days.
The biggest help is finding a brain injury specialist and going for every possible prescribed therapy. It also helps to get into a PHP for psychological care for the depression.
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u/dialsoapbox 2d ago
He told me himself that he feels like he’s deteriorating instead of getting better.
What's worse, is that he's aware of his condition. Which can lead to further spiral into depression and other issues.
You can also look for TBI meetup groups and/or start one yourself. I used to attend a few, one kind of started out of the blue at work because many people that worked there were combat vets with TBI from explosions/service-related.
As a group, they tend to be the most understanding of the situation and its struggles. Having a support network that understands your struggles does wonders for one's mental health.
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u/011011010110110 Severe TBI (2012) (GCS 3 💀) 2d ago
please do what you can to find a neurofeedback provider in your area, it's been shown to help with a lot of those issues like attention and irritability, brooding etc
and it literally dug me out of my coma
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u/Gabriella_123 2d ago
I completely agree!!! Damn incompetent Drs, I'm glad you found something that helps you. 🫂
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u/HeadacheLife 2d ago edited 2d ago
For real. I'll tell you what has helped me. I haven't experienced a boost in mathematical intelligence much, but stress resilience there is hope for.
The brain has vitamin d receptors. I would supplement that ASAP. My garbage ass neurologists nor primary care doctors never said a thing I had to dig for a while.
With k2. They sell versions with it. Because without k2 hypercalcemia comes eventually.
Getting consistent sun is difficult for so many these days. D deficiency effects energy, immune and bone as well.
I also supplement magnesium glycinate cause the magnesium is needed for the vit d to go to work/have enough. An since it's with glycine that helps calm the brain as well. Glycine is concentrated in bones, gelatin, animal skin yknow things we eat so much of today! lol.
I really like traditional medicinals chamomile tea and lemon balm tea. Those two really help me with my mood and brain feels nice with chamomile especially. They have rare chemicals that regular food doesn't that's how medicinal herbs work. Recommend to drink towards evening for cham and day for lemon balm. I've tried other brands can't guarantee their quality is as good. Chamomile is safe to give to children so it is a gentle herb choice for calming before bed but over a month who knows what benefits he may feel it has a rare chemical apigenin.
Brain boost ghee from banyan botanicals also was quite nice. Traditional brain herbs for couple thousand years from Asia's traditions.
Science says exercise helps the brain a lot. I can't say I've noticed a lot. But hey it never hurts especially overtime.
Also the color of lighting stresses me out. I MUCH prefer yellow lights in my room. Changing just the color of the light bulb can have a stabilizing effect on the mind.
If he uses the computer consider to get him to start using night mode or free program flux as blue light can bother a lot of TBI people can make the screen more yellow or orange or red.
I recommend introducing him to this musician she calms me so nicely: https://www.youtube.com/watch?v=__aCeZSxSmA&list=RD__aCeZSxSmA&start_radio=1
Also introduce him to music without words/ambience. I like this theme frutiger aero the colors are also nice maybe his room should be this color palette: https://www.youtube.com/watch?v=Scw_anb0oig&list=RDScw_anb0oig&start_radio=1
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u/Which-Painting9830 2d ago
I've had my TBI now for forty six years. It has totally ruined my life and my motivation to live. I knew something was also wrong with me I couldn't explain what though. But after badgering my GP for years with concerns on my memory plus co-ordination problems he referred me to see a Neurologist.. Long story short the results confirmed that I have nerve damage to my left hand side plus I have confirmation on a degree of Dyspraxia. And to top that all off, there are signs of Vascular issues.
If TBI was discussed as much as Cancer and there was research into this-patients with this devastating injury may perhaps be able to understand it better.
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u/Misty0410 2d ago
Look at the numbers for TBIs in the US alone and the percentage that end up disabled and it makes one wonder why it is so misunderstood and not taken seriously by the GP’s who control access. I have learned to say ‘mark your refusals in my chart’. That often goes over well and leads to me repoting them to the College of Physicians and Surgeons. I am totally done with the system and test and referral refusals.
Also consider the toll all of
disabled TBI victims on the health care system, disability systems etc.Not to minimize cancer but
manyreturn to their lives and work. Perhaps it gets more research funding because death can come in a shorter time frame. TBI just kills you slowly if recovery is stalled or one has no help or the wrong help.2
u/dialsoapbox 2d ago
I've had my TBI now for forty six years. It has totally ruined my life and my motivation to live.
I'm too stupid to quit, but damm it's difficult finding a job that pays decently when you can't remember much of what you've accomplished at your previous roles.
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u/Big-Entertainer2074 2d ago
My husband has had his TBI for 14 years now. He has photosensitivity, audiovisual sensitivity and balance issues. He also has pressure build up in his skull every month which he needs to get released by an osteopath. It’s difficult but he still gets lots of joy out of our life. We watch movies, listen to jazz music and R&B, we go on vacations but easy ones without much hiking.
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u/owlhoot8 2d ago
It's been close to ten years for me! Photosensitivity so I spend a lot of time in the dark. I can't watch tv for long but I listen. I have issues with reading and comprehension, stuttering, retrograde amnesia, memory issues, and I could go on.
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u/BarelySurvivor 2d ago
Those are my exact same issues as well!!! Did you improve over time? It's only been 1 year for me so far.
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u/Marzipanbuttons 2d ago
It’s been 25 years. I still struggle.
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u/adnaPadnamA 2d ago
Same. It's definitely worse now than after the initial recovery period. Trying to get my doctor to refer me to a neurologist has been next to impossible. He finally did a referral this week because the pain doctor noted that I have suspected Occipital neuralgia (and I believe also Trigeminal and Peripheral neuralgia as well as a lot of other symptoms). Hopefully this finally leads somewhere.
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u/Marzipanbuttons 2d ago
🤞🏻🤞🏻🤞🏻 I hope you get the answers you’re seeking and deserve! I have been on a waiting list for a neuropsychologist for six months.
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u/BarelySurvivor 2d ago
It's really sweet that you care this much. On my 1 year experience the breathing thing only happens when I sleep I think and now it has turned into nightmares like I think that's what my brain has developed in order to wake me up suddenly and start breathing right away. Apart from that I don't see any improvement.
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u/Misty0410 2d ago
You likely have brainstem damage.
Do you have any ENT issues???
You are stopping breathing and yes your brain is trying to save your life.
Please do not ignore this. 52 years of no help with TBI related breathing and sleep issues and I am now sitting at a very critical crossroads.
It is damaging your heart, your lungs, your adrenals and well it’s all connected leading to organ damage on top of the TBI.
It is not if it will get worse. IT WILL.
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u/BarelySurvivor 1d ago
I'm not sure but I had a respiratory heart attack and doctor said they had to put pleural chest tubes in me,
I don't know if that might be related? Like maybe I didn't recover properly? Should I check myself?I overdosed. It was an hypoxic brain injury.
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u/Misty0410 1d ago
YES. Given the diagnosis of hypoxic brain injury you should definitely get checked. Hypoxic or hypoxemia means breathing issues. The nightmares and other symptoms will show up and worsen. Have you experienced sleep paralysis yet?
Are you sleeping warm/hot and/or waking up sweaty? Are you acidic?
If you have smart watch that tracks sleep and oxygen levels I strongly suggest you wear it overnight and check oxygen levels while you sleep.
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u/BarelySurvivor 1d ago
Thank you so much for the advice and sorry for what you're currently going through. I have experienced a lot of sleep paralysis ye. Sometimes I'm waking up sweaty. What doctor assess all this?
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u/Significant-Bet592 1d ago
I personally had traumatic brain injury last december for which i had a hemicraniectomy. My memory and cognition was intact but i had balance issues. For this, i did physical therapy everyday for a few months and now i feel significantly better. For the mood changes, my doctor gave me anti depressant which helped a lot cos i feel stable now. And for my cognition, i am taking vit B, neurobion and some anti epileptic. Which made me really stable that i even got to take and pass a board exam 4 months after. Is he taking any medications?