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/r/TBI's
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From 3.5 billion Reddit comments
The most popular Products mentioned in /r/TBI:
The most popular Services mentioned in /r/TBI:
f.lux
Brilliant.org
ResearchGate
Encyclopedia.com
Otter Voice Notes
WebMD
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Headspace
The most popular Android Apps mentioned in /r/TBI:
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I watched your video a bit. Read the post about your gf (sorry about that) and things seem a bit confusing. Some things I noticed... you have a flat affect (I have this too) makes it hard to understand when you are joking or how you actually feel about stuff when you talk about it. I don’t think you are fully aware of how serious your injury is/was/will be. (Maybe you are and it’s the flat affect thing)
Ask around in your daily life how many people have been in a coma, let alone a 11 day one! Not many!! That’s your brain going offline to repair itself. The healing goes on for years afterwards.
So my vote is a NOoooo. Everyone’s injury is different and I’m no doctor. One of the effects of having a TBI is problems with impulse control and just being aware of your injury in general. This is a blessing and a curse of TBI.
Your “job” now is to protect your brain. Try to nourish it with positive people and things. Did they tell you it’s REALLY IMPORTANT not to hit your head again??!!
You might get some insight watching Kevin Pearce’s movie The Crash Reel that’s an amazon link you might be able to watch it another way if you look around.
Wishing you all the best.
I’ve definitely noticed being more dizzy and overwhelmed when I have to go into the store. I’ve only been venturing inside public places when I absolutely have to, and it’s entirely too much. Disoriented is the perfect word because there’s SO MANY THINGS to take in all at once. I’ve definitely noticed a correlation to how much better I feel when I work from home and how hard it is to return to an office/public setting, even when it’s not as busy as non-pandemic times. My only advice is to ease yourself into it (if you can), take breaks, and know you’re not alone. If there are any aides to help you like sunglasses, lists, water, headphones, etc then definitely bring them. Going to the store when it’s quiet is also super helpful! I’m really sensitive to fluorescent light, and my OT recommended these:
Eschenbach SolarShield Sun Glasses Polarized Plum Filter Small https://www.amazon.com/dp/B001DXLG6U/ref=cm_sw_r_cp_api_glt_fabc_3094NQA1TVFSMWPYSW4N?_encoding=UTF8&psc=1 They look goofy, but they’ve really helped me. Good luck out there!
It's secular Buddhism, it's not starting a new religion. There is no dogma, no hierarchies, no masses, no belief structures. Just you and meditation. It's a science of consciousness. You can practice samatha vipassana meditation (concentration mindfulness in Pali), work towards Enlightenment, and it will not interfere with your religion. Don't be so quick to brush things off. Samatha vipassana meditation is the single greatest thing I've done for my injured brain and history of trauma. The tools I learned from dedicated practice to concentration mindfulness has saved my life countless times. It's what the whole mindfulness idea in therapy is based off of.
Check out n-back exercises. They helped me with my memory immensely.
I misremembered which would certainly make it harder! Haha it is actually called Head Games, here's the Amazon link
Head Games https://www.amazon.com/dp/B00A8OIFXC/ref=cm_sw_r_cp_apa_dcDvxbFYCTGCQ
I found this book to be very helpful when I was having a hard time. Just open to a random page until it’s the one you need.
No noise...it sucks but its necessary. And even after that, I need breaks from music with words. The tv is better or some kind of podcast. I think the conversation is comforting but that's just me.
Definitely be cognizant about the lighting. Overhead lights are going to suck. Sunglasses inside will help but look into specific light blockers. I use ZM Sleep clip ons since I'm already blind.
Most of all, be gentle. On you, your family and your sister. She may have different personality traits or pain that doesn't make sense.
You are not alone. My brain injury was just over 4 years ago and I struggle every day but for my friends and family, they don’t see it. I have memory problems, speech issues and trouble making decisions especially when I am overwhelmed. The best thing I did was going to rehab. I had PT, occupational therapy, speech therapy, and was assigned a social worker. When that was done, I asked if there were more things I could do. Some of the best groups I took part in were CBT therapy, mindfulness meditation and goal management sessions. This gave me tools to help me get through my day to day activities.
If you’re not able to get into a group session, the workbooks are available online to order.
These have lessons that you can do at your own pace and will help you figure out what works for you. There are also free mindfulness exercises on YouTube. I found that not all the voices were soothing but with so many, you can pick and choose.
I hope this helps you. Good luck!!
The culprit might be blue light. The light from TV, computer, phone triggers the cranial nerve which can cause fatigue and pain.
Consider blue light glasses or use f.lux. It could help.
Setting reminders to get up and look away for some time after being in front of the screen for a while can also help.
You might have post-concussion syndrome. You gotta give your brain time to rest. Computers are bad; use a blue light filter like f.lux. It should help. Stay away from alcohol, highly processed foods (high in sugar and fat), and make sure to get enough sleep. I'd suggest finding a neurologist and getting an MRI or EEG.
Here if you ever want to nerd out on brain facts.
If you enjoy reading I suggest picking up a copy of Where is the Mango Princess? A Journey Back From Brain Injury.
It’s a family perspective on brain injury throughout the stages of recovery. It is informative and may help you relate to what you’re going through.
You are going to have to find that out for yourself.
For me the answer was no. To clarify I too wanted to get back to myself, to leave the void and nothingness behind, for longer than I'd like to admit. Eventually I decided there was no sense in wallowing in the grief I found in losing myself, instead to say goodbye and greive for who I was before and move forward. Although difficult I found walking and guided mediation helpful. As well as books lots of books, got a lot of empty space to fill with all the knowledge the world has to offer.
I took the best parts of who I was, or at least the best bits I can remember and piece together more from the game of "do you remember" that I've found everyone likes to play when you get a TBI, moving forward into someone entirely new. Remember what was and accept what is, the void can become something beautiful you might just have to work at it a little bit.
I'm going to add a link to a meditation app that, hopefully is still, offering a free year. It's hard but I'd suggest the voice of Ofosu, he is very calming, and do the foundation plans they offer before attempting the greif single and perhaps even try the forgiveness one... https://play.google.com/store/apps/details?id=com.elevatelabs.geonosis
I found a Ram Das book called Still Here to be really impactful regarding that "now who the fuck am I?" problem. I too really identified with my wit, my drive, my ambition, and my smarts.
Ram Das started writing about aging and "accepting that," but ended up having a massive stroke during the process. He lost the ability to speak. Previously he'd been sort of comedian for the spiritual and meditation community, but all his personality and identity was based on his wit, his stories, his ability speak and mesmerize crowds - so he had to keep telling himself (and sign to people around him) "That was him. This is me," and learn to embrace where he was. And grow from there.
On the brainhq games they're definitely constantly difficulty adjusted so it's working in your proximal zone of development (ie, you get about 75-80% success rate). That way I often start at one level of difficulty, but as I get tired, the difficulty adjusts to keep pace with my slowed cognition to be at the right level.
I highly-highly recommend reading The Brain's Way of Healing to get a sense of some hopeful recoveries, even for people who were told they'd never recover from their doctors.
Great book on neuroplasticity, and promising new treatments and technologies.
I’m taking 2.15g per day right now (half morning, half night), but I used to take twice that for like a year, before I started taking Vitamin E (another blood thinner) and my blood started becoming too thin. I specifically take this one if you want to try.
Hugs are good. Maybe the best. Don't feel silly for wanting them.
The Brain's Way of Healing was a step on my journey that really helped give me hope that people even after tons of problems DO find ways to improve.
Yoga classes are a good way to sort of a get a little "hug" sense by being surrounded by people doing the same thing with you.
Pretty common.
Have you had your hormones checked? Testosterone and Human Growth Hormone are two that a lot of people have deficits in. Although HGH is hard to find an endocrinologist who knows about this.
What remedies have you tried?
Have you readThe Brain's Way of Healing?
Not advocating on behalf of Amazon here but sometimes I find that a visual helps. This is what folks mean by an over the counter/OTC melatonin
Carlyle Melatonin 12 mg Fast Dissolve 180 Tablets | Drug Free | Natural Berry Flavor | Vegetarian, Non-GMO, Gluten Free https://smile.amazon.com/dp/B07GR9WBFY/ref=cm_sw_r_cp_api_i_EC99C47YB1A7QPNHG1JV
Also you may find that you have to really really force your body into a re finding its sleep wake cycle. Get at least 15 minutes of sun during the day. Go to bed when it is dark- repeat for at least 30 days.
New to this Reddit world. This is my first comment I believe! I was curious about the blue light glasses for a while now since I use screens a majority of the day; work, tv, video games, cell phone, facetime. And I kinda browsed a bit on Amazon, this brand doesn’t have many reviews comparatively, but it’s very reasonably priced, and they’re comfy and definitely get the job done. They even come in a super nice case, and includes a little laser to show the effect of the blue light too. Recommend for anyone just kinda curiously entering the blue light glasses curiosity. -JG
This pillow is amazing. Make sure to do a chin tuck before falling asleep haha!
Dlight Bedding Ultra Slim 2.7"... https://www.amazon.com/dp/B07X8B22KV?ref=ppx_pop_mob_ap_share
Im glad you decided to pursue the natural route, I don’t regret it at all and it changed my life for the better. :D
In addition to using advice given, see if your employer will let you install f.lux or similar blue light filter. Or just install it without asking if you don't feel like you can ask. This is more advanced than just changing the blue hue setting on you monitor.
What I did was adjusted my monitor brightness so that it blended in with background (not brighter than surrounding view, not duller). Then I used f.lux to adjust the blue out. F.lux had an auto setting but I found for my concussion symptoms I wanted blue light filter all day so I just used a custom setting that I left on 24/7.
Agree on taking breaks every 15-20 minutes. At the very least just stand up and focus on something 20+ feet away for a minute.
Outside of work, just try to keep screen time to a minimum while you're adjusting to the new job. Go on walks/hikes, find some boardgames to play, or other non-screen hobbies. For reading I would make sure you have a physical book or a front-lit device like a kindle or equivalent e-reader. Phones are backlit so and avoid reading on those. Swimming can be good, just make sure to keep it in moderation and a relaxing pace. I know for me personally it I am suffering a bad head day then exercise usually exacerbates my symptoms.
Once you are confident you can get through a work day without symptoms then you can slower start increasing your non-work screen time and other daily functions.
Sorry if I didn't answer all your questions (short on time) but if there is anything you'd like fire me to comment on or ask me then let me know!
I know exactly how you feel. This helped my vision tremendously. But didn't take away all the vision problems. I take one in the morning and one in the middle of the day. If I miss a dose, my vision gets really messed up Here it is on Amazon Doctor's Best Benfotiamine, Non-GMO, Vegan, Gluten Free, Soy Free, Helps Maintain Blood Sugar Levels, 300 mg, 60 Veggie Caps (DRB-00270) https://www.amazon.com/dp/B006HW5J9C/ref=cm_sw_r_apan_glt_i_ZRPH0N7FWBHXVXVJ6EBA?_encoding=UTF8&psc=1
And here's a video that has a lot of useful info, but the background music is rather annoying. https://youtu.be/tO9GvOanH8Q
Oh, I'm in Maryland, where I saw a concussion doctor. Feel free to PM me if you want more info.
But yeah, it was pretty crazy. It caused occipital neuralgia https://www.webmd.com/migraines-headaches/occipital-neuralgia-symptoms-causes-treatments#1
The actual dislocation was called atlantoaxial subluxation: https://emedicine.medscape.com/article/1265682-overview
I have experienced hypersentitivity to sound and light. I've found some meditation exercises to be helpful with the panic feeling. My neuropsychologist recommended headspace. I did the 10 free exercises, and still pull from the strategies. I was skeptical at first, but my experience is positive.
Naticura Migraine Defense Migratone - Natural Headache Relief Support - Ashwagandha Supplement with Butterbur 150mg, Magnesium, CoQ10 and Feverfew for Migraines - 120 Vegan Caps - Made in The USA https://smile.amazon.com/dp/B07FK617XT/ref=cm_sw_r_apan_glt_fabc_46AMNN2QQCNJ114VSA7M?_encoding=UTF8&psc=1
This made all the difference for me. Had everything my neurologist recommended. Been taking it for 3 years now.
I haven't seen anything regarding stem cells or HGH, so I could be wildly off here, but it's hard to really imagine their mechanism of action. I'm not aware of HGH being a major player inside the blood-brain-barrier, and stem cells, while potentially-maybe-sorta useful, don't seem to attack the primary issues of neuro-inflammation leading to celular metabolic problems, leading to circuit irregularity.
If you have any time, I can't recommend The Brain's Way of Healing, this has been a 5 year battle for me.
If you're short on time, the only moderately accesible therapy/technology I've seen promising research for is Photobiomodulation aka Red/NIR therapy applied through the skull with LEDs basically. Research example here but just google "photobiomodulation and tbi"
It's a never ending rabbit hole. But, what other choice do we have?
If you haven't googled photobiomodulation and tbi, that's a hopeful set of studies!
Although, more seriously, I highly recommend Norman Doidge's books, but specifically The Brain's Way of Healing if you want to hear case reports of therapies that have actually managed to reverse some people's chronic TBI's.
Have a look at this sleep mask. The thick band around the head also helps a lot — think it like diffuses sharp scalp nerve pain I had :) Manta Sleep Mask - 100% Blackout Eye Mask - Zero Eye Pressure - Adjustable Eye Cups - Guaranteed Deepest-Possible Rest - Perfect Sleeping Mask for Light Sleepers, Travelers, Midday Nappers https://www.amazon.com/dp/B07PRG2CQY/ref=cm_sw_r_cp_api_glt_fabc_2PCM19D12VSAWP8P3ZKB?_encoding=UTF8&psc=1
3 things I'd highly recommend:
Physical Therapy! Iwent through a few months of PT and had exercises that reconditioned the eye muscles, among other things. I can't speak highly enough of how much that helped me adjust.
Rest, rest, rest.
I'd also highly recommend getting an eye mask like this one, it's a life saver when you've overdone it on screens!
You've got this, OP.
This is a great post, thank you. I am in technology consulting now about 4 years out of my accident. Blue light has been a strain on my eyes and I’ve used blue light shielding glasses to help. You can get some with no prescription for about $10-$20 on Amazon. It has been very helpful. The pair I use: https://www.amazon.com/dp/B0755GW72V?ref=ppx_pop_mob_ap_share
https://www.amazon.com/gp/product/B07W8TL9DZ/ref=ppx_yo_dt_b_asin_title_o00_s00?ie=UTF8&psc=1
Here's the exact product I bought. I don't know if it has filler or not, but it worked for me
Identity Theft: Rediscovering Ourselves After Stroke https://www.amazon.com/dp/144949630X/ref=cm_sw_r_cp_api_i_659tFbB4552RE
I myself have suffered 4 strokes. Made a 80% recovery. Mostly all cognitive things. I too was struggling with the same thoughts. This book helped.
I've been feeling more "with it" since I started taking Lion's Mane Mushroom supplement. These are not psychedelic mushrooms; in fact, you can buy the actual Lion's Mane Mushrooms in stores like Whole Foods or Wegman's (I'm in the USA).
I've been taking this supplement: https://www.amazon.com/dp/B07Q5DZJTK/
Feel better. It's a long road.
I'm usually cold and have become very heat intolerant so I have the exact opposite problem.
That being said, wrt to getting sweaty it sounds a lot like hot flashes. You can buy this thing and I promise you it works. Wet it and put it around the back of your neck. You will cool off. https://www.amazon.com/Ergodyne-Chill-Its-6602-Evaporative-Cooling/dp/B001B5I57I/ref=sr_1_4?keywords=chill+it+cooling+towel&qid=1574111011&sr=8-4
Get that brand "Chill it". I've gotten others and they don't work nearly as well. Good luck!
Also, I should have mentioned, not necessarily a reply to the original post but to others wanting to meditate to cope with mTBI, there are a couple good books that describe HOW to meditate.
I prefer a more loosely structured approach combined with reflection described by these authors:
Unlearning Meditation by Jason Siff (http://www.amazon.com/Unlearning-Meditation-What-When-Instructions/dp/1590307526)
and True Meditation by Adyashanti (http://www.amazon.com/gp/aw/d/1591794617/ref=tmm_abk_title_0?ie=UTF8&sr=8-1&qid=1426012574)
I hope these suggestions will be useful.