What it's like living with fatigue after a brain injury

For Headway's Action for Brain Injury week we spoke to Jason and Oliver, both clients who have experienced a brain injury, about their experiences of chronic fatigue and asked them to give their advice to those who might be experiencing the same thing.
Find out more about Action for Brain Injury Week and more on Headway's website here:
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www.rwkgoodman.com/info-hub/w...
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Find out more about the Untold Stories of brain injury: • The Untold Stories of ...

[@eveoakley6270]

I had a traumatic brain injury in March and can vouch that the exhaustion is definitely entirely different to feeling tired.

[@WestTexasSunshine]

I’m 3.5 years out from my TBI. I’m still dealing with the fatigue. I wake up and shower and sometimes have to take a nap before I finish getting ready for the day because I’m so tired. I’m an architect and my job is completely cognitively exhausting. I told my dad that I wake up just to get through the day to make it to the next. I’m just waiting to die. That’s no life. I’d like to have enough energy just to keep my apartment clean. I’d like to have a single hobby. I’d like to live more than just existing. The more research I do, I find that it’s less solely chronic fatigue, but more neuro fatigue. I’ve started slurring my words and forgetting words and names, specifically when I’ve used a lot of cognitive brain power recently. I’ve been working 40 hr weeks again and noticed the regression coincides with the effort I have to give at work. Neuro fatigue.

[@katya5687]

I feel you. I feel the same way, but there’s nothing we can do about it…

[@WestTexasSunshine]

@@katya5687 I’ve recently gotten adderall and it seems to help with my energy. I currently have my house kept in order. That’s a huge change. All the research I’ve looked into has shown that treating TBI fatigue with adhd treatments appears to be a productive treatment plan.

[@ryle6183]

We're practically at the same recovery amount from each others tbi WestTexasSunshine. I had a TBI from a motorcycle accident in November 2019. I'm able to stay up past 6 but, when I do, I'll be quite fatigued. This fatigue is stressful but, I am able to feel that my brain has healed quite significantly as I used to get fatigued at a much earlier time, around the start of the evening

[@graciegracie]

Good day! Please prioritize sleep (I sleep twice a day) and eat foods rich in choline (eggs) + meat and fatty fish, moderately; kindly lessen sugar consumption since it causes brain tissue inflammation in TBI patients. Citicholine, for memory loss and neuroprotection, could probably help you but needs a physician to prescribe it and you probably need just a little of that (too much could cause frequent palpitations). It took me 11 years to be significantly ok. Mine's a moderate case with tympanum rupture and barotrauma. Don't chronically use gabapentin, if you're still using it, and it has to be tapered thru a guidance of your neurosurgeon, when trying to stop its use since it causes withdrawal symptoms. Avoid dehydration because if you have spontaneous csf leak, you'd have to be always hydrated in order to prevent having additional headaches. This is not a replacement to a medical advice and please consult your neurosurgeon.

[@MillerTheOriginal]

Do you take any medications ans if so, what are there names?

[@andrewd.harris656]

I had my brain injury when I was four, and at times, I feel like the fatigue and different things weren't addressed because I did well in school for a while after learning to read, but the fatigue and double vision have been an issue at times. I have types of seizures a bit. I'm trying to earn a master's degree right now. I'm full time at the post graduate level.

[@bruceradz]

Sounds as if you are really doing well Andrew, not that any of it was easy or simple. Congratulations, and Yes hope you get that Masters. I had a TBI in a motor vehicle accident twelve years ago. I had seizures regularly, until six months after, then they finally stopped on their own. And haven't had any sense. My biggest issues are fatigue, eyesight issues, and remembering things. I had offers to go back to school, or even back to my old job, but with my memory issues, none of those things were going to happen. Also I have issues with my vision. I have third nerve palsy in just one eye, and that same eye, the pupil doesn't line itself up with the pupil in the other eye, the good eye. So, I do get double vision, sometimes blurry vision in the bad eye. Anyway, just thought I would share that story with you

[@treviansnow8738]

I am happy you’re pushing through but full time. Don’t be afraid to go to part time if need be for the end

[@Kevin-tn5rr]

Mine is from abusive farther knocking me around as a child. And being raped when I was 4 in 1988

[@taiweannoona1204]

It's not fatigue. It's coming to a dead end, a brick wall with no way to power through. You can't will it away.

[@debblackmore7460]

It's a living nightmare balance goes speech goes thanks guys keep going sending love from headway Nottingham UK xx

[@ollymitchard9770]

Thank you headway Nottingham olly olly mitchard video

[@bruceradz]

Stbi recoverer here, dont you get headaches as well Deb? Migraines? Yes to the speech, the balance, also for me is concentration issues, the headaches...

[@debblackmore7460]

@@bruceradz hi get loads of migraines fatigue knacked most off Time hope you doing ok keep going keep positive you got this sending luck hugs

[@bruceradz]

@@debblackmore7460 thanks so much Deb. My neurologist would like me to try botox injections for the migraines. Are you familiar with that at all. I googled it, but still would like your opinion 😃

[@debblackmore7460]

@@bruceradz try them look into them thou I haven't tryed keep positive

[@maritascoonbee8285]

Similar symptoms after a severe concussion 40 years ago - extreme fatigue, depression, anxiety, and when I really struggle and done for the day add slurred speech, difficulty in structuring sentences and off-balanced to the mix. Found this amazing medication called 'Provigil' that feels like someone has switched a light on in my head and I feel just like my old self for a few hours a day.

[@nancyhanscom1374]

TY for the name of the medication...

[@traceykerr572]

Low cognitive reserve.. profound brain and body fatigue after few hours of effort at anything during day. So frustrating

[@bruceradz]

What about concentration issues as well Tracey. Yes, brain and body fatigue for sure, which no one involved in my life understands anything about me, and TBI. I hope you have better luck than I, when it comes to your friends and family understanding you. 😃

[@TheBlackCat1337]

yeah, the brain fog for me is like trying to do basic math while drunk with 3 days of no sleep after studying 2 weeks straight for a big exam. Takes about 14seconds to just identify the first number and get it lined up in your thoughts.

[@debblackmore7460]

Stay strong stay positive keep going doing amazing things we are survivors you got this x

[@savagestatus]

I am glad that I am not the only one. I have chronic fatigue because of brain lesions caused by MS, and my wife is always saying that I'm lazy and that I need to do more. I hate feeling like I am not doing enough when I'm doing my best. I can barely walk sometimes, and I commonly fall. I need to re-evaluate my life.

[@yganoks48]

😢I understand your feelings. My hubby says the same that I am lazy. I know sometimes I have difficulty concentrating. I wasn't like this before and I know myself as active and energetic. But after I had brain injury everything changed. 😢

[@Thatsbannanas-d8c]

You are enough. !!!!!

[@nancyhanscom1374]

Will she listen to a video?? It helped my husband when I had him listen to them. I'm 75 and was 65 when we were just retiring and had gotten a motorcycle. I had a funny feeling at the end of our Driveway and I told him " please go slow down this road. He gunned it and was at 45mph and he hit a stray dog. Not even a mile down the road. I think I still get angry at him for not talking that second to ask me what I ment. I was air lifted!!!!😮😢

[@ChoppersModelworks]

I found for myself if i can reduce stress that helps. This also means not "over-booking" one's day or life. Plan more of a patient day with time to do things in the afternoon/evening as things become more difficult and trying to rush things just doesn't work. And be conscious of when the brain fatigue starts as if I keep pushing myself afterwards, my ability to walk or use my hands such as to unlock a door becomes difficult. Good luck for those out there with head injuries, i know it sucks. After 20 years and I still cannot get any medical treatment!

[@bruceradz]

Yes, I agree with you, keep things simple and organized, don't get overwhelmed by things

[@kalabarnes4839]

I am still very grateful. But, I am going through exactly what they are experiencing. Post concussion syndrome from a high impact car accident - severe concussion -grade 3

[@jacobrodricson1554]

Hello fellow victims appreciate watching your video I suffered a tbi 20 years ago right side, couldn't sleep more than two hours at time for 14 years and my new pain doctor gave me gabapentin a long with my other drugs, and it helped me sleep it was the first time in years I could sleep all night , but being able to sleep and my brain slowing down changed my state of being I felt sane again the thing is it must have a loud my brain to heel some what because I was only on it for a year and since then I can still sleep through the night. Though this may help someone else.

[@graciegracie]

Please consult with your physician about gabapentin use because it could lead to memory loss with chronic use, you have to taper it if you have to discontinue to prevent withdrawal symptoms; I was medicated with citicoline to counter my memory loss

[@bashinmybishop]

I have had my Brain Injury now 44 years. I didn't even know what a TBI was until 20 yrs ago after D5epression and seeing a Psychologist. People have given me a wide berth because I am different. Everything that you have mentioned about a B.I I can relate to. Tiredness, Brain Fog, Anxiety, Depression.

[@bruceradz]

Concentration!?!

[@SpaceRanger187]

same. I just hope I don't get worse.

[@bruceradz]

@@SpaceRanger187 never can tell about the brain, unfortunately. But exercise your brain, by that I mean do things that make you think, you may know of some things already. Word searches, Crosswords, regular puzzles, heck, even math problems if thats your thing. Maybe learn something new, a new activity...Keep it active

[@billygnosis6976]

stay strong and be kind to yourself....Ive found solace is reading The 5 agreements by Ruiz

[@daviebevan]

@@billygnosis6976 thanking you.

[@treviansnow8738]

My tbi happened at work in 2018. Thank you both for your story’s and descriptions on your personal fatigue. I have felt them both and as you know rewatching yourselves you probably could think of 10 brand new things you wish you had brought up. Thank you. I’m still figuring myself out but I’m getting sorted

[@jonbeckleymorrisblues]

I'm coming back after emergency brain surgery in early May....got out of the hospital 5 weeks ago, after 6 wèeks in the hospital. Have a small rescue, and know when I force myself to get up, and move I feel better. But, it's hard to get up especially if I don't rest during the day....

[@jodisoakenwolf1950]

I have the same dealing with brain tumours hopefully after planned surgery it's these symptoms are reduced. I will carry on fighting keep going . Well done lads great explanation. Helping people with a lack of awareness. Xx

[@jjconc]

I'll send this to my family. 🧠

[@jamieiwanski9496]

The anxiety is the worst part for me

[@gaelzambrana335]

me too and the brain fog feels like i’m in a bad dream. do u feel back to normal yet?

[@jamieiwanski9496]

@@gaelzambrana335 I’m getting there. My injury was Jan 9. I still have anxiety but not nearly as often or as bad. I still have times that for no explanation, I just get angry and irritable and get the fog still too but not nearly as often. The ear ringing is the worst symptom I still have.

[@gaelzambrana335]

@@jamieiwanski9496 glad to hear that you’ve made good progress. happy for you and gives me some hope. i’m not even very religious and i still find myself praying to feel like myself again.

[@rejanwashburn2760]

​@@gaelzambrana335I'm almost 4 months out and I don't feel like myself yet either. I hope that day isn't too far off.

[@adammartin3944]

Thank you for this!! I struggle with this very badly.

[@yganoks48]

😢well said sirs, nobody understand the feelings unless they're on our shoes. Even my own hubby just laughing at me when I said about neuro fatigue. 😢

[@ryle6183]

It's been about 3 years and I had a motorcycle accident in 2019 where I had hurt the left frontal lobe of my brain. I thankfully don't vividly remember but, I recall quickly being exhausted a little bit before the evening. Yes my lifestyle first recovering was very prone to fighting against that fatigue but, it was very temporary as it was mainly caffeine intake that had previously fought again the fatigue that I had experienced. After 3 years I am now able to stay up longer and I would assume that it's due to the, I believe hypothalamus healing within my brain. My brain used to be up and down with energy levels and my energy levels still aren't how they used to be but, I've been able to stay up a bit longer after so long.

[@alexanderNorseCode]

i can relate to this 100%.

[@georgestreicher252]

I can really sympathize with these people. I had Micro Decompression Surgery for Trigeminal Neuralgia. The surgery includes putting a hole the size of a quarter in my skull. For about the first month after the surgery I could only walk about two blocks before being exhausted and having to rest. It took me well over two months to start to get my energy back.

[@joprocter4573]

3 lanes on motorway change up and down, no need to rush in fast lane. Life similar not same. It's not a competition.

[@ceejfletcher]

If I think or have emotional feelings I get exhausted in a few hours. I start making mistakes, my eyes go lazy I trip, etc. it rules my life

[@reginaldwilliams617]

Yes, the brick wall explains it... great night of sleep with a 4-hour shelf life... up at 8a and crash by noon.... 4 or 5 of energy annoying 🙄 😒 😤 I overeat in an attempt to fuel myself to get through a day... tired of taking drugs to get through a day....

[@RoadRunnergarage8570]

I love it every day...

[@chrisc1283]

It’s impossible to explain, people would rather see you die on your hill than to fall, people just don’t understand

[@AndrewB221]

It’s? A nightmare and I have a Severe Traumatic Brain Injury and forget who I am every morning and have to reconnect myself every morning with the same routines to energize and remind myself exactly about my injury and my connection with the world around me and I forget Banking information and Recent Events that occurred and I have to find a trigger to keep my peace and balance or I become dismissive and angry and volatile and can instantly just snap and have no memory of anything that I even did or events that I was in

[@AndrewB221]

I find that Music is my Peace and Calmness and I will shut off and completely disappear into another realm and far away from what’s presented in front of me and coffee and cigarettes

[@AndrewB221]

Again, I apologize for the mouth and words, it’s this character in my Brain that just appears and it’s extremely hard to control, but! Once I understand what it is I can switch, so again, I’m sorry

[@AndrewB221]

It’s like a tick

[@AndrewB221]

I’m a Veteran as well from the PA National Guard and as a Service Member, we develop these ticks and traits, it’s not you, or anyone? It’s me, and this character just wants to come out

[@Mfield111]

I'm sorry I do know exactly the fatigue you experience I have cfs

[@jjconc]

My TBI was 20 yrs ago. I feel like a baby and start crying when I am faitigued.

[@xmistaxcashxcoll]

Yup mental fatigue and become very negative. You have fight it thru to become back to positive!

[@mahendrapatil1938]

Can brain injury brings OCD to a person? Because i experiancing it.

[@hyosonwagner6691]

After the concussion, I developed a ocd .

[@Ed-ip2sg]

I had my stroke fairly recently and suffer from😊 the afternoon fatique.

[@stevenlengyel9701]

I hate it 13 years post stroke

[@DanielRodriguez-cv3xb]

I got a big hit in the head that lead me to having a learning disability a teacher told me how did you get to the 7 grade no wonder why I didn't do my work at school I don't do math problems like sudoku or other school related things because I have chronic fatigue because my my skull is cracked IAM lazy in doing things because I have a brain injury

[@DanielRodriguez-cv3xb]

I got a big hit in the head that lead me to having a learning disability a teacher told me how did you get to the seven grade

[@freqeist]

i get up at 2 and am tired by 8

[@aphysique]

How does everybody deal wit this??

[@ramoddjob]

Im patching my 8th at 40 years old. They get harder to fix as you age. Doing nothing is the only thing that seems to help...until they invent a vibrating traction mouthpiece.

[@nancybailey237]

Is a brain injury the same effect for having a bloodclots. Whats the after effect of that. Have a friend just experience one

[@liam.4454]

How do you know if you have a brain injury? I'm convinced I have, but I dunno how to prove it, I went for a brain scan that I payed myself and it was fine, but what else can i do?

[@BeaufortRyan]

I suffered a severe brain injury back in 2011.

[@aphysique]

How are you now?

[@aphysique]

How are you now?

[@aphysique]

How are you now??

[@Einhander49]

Sounds like side effects from the medication Keppra - which is given to everyone that suffered head trauma. I stopped taking it after 2 months because I recovered quickly from my injury, and the tiredness and depressions went away within a week.. Everyone is different, though.

[@eveoakley6270]

I had a traumatic brain injury in March and was not prescribed Keppra. I am now recovering while taking no meds at all and can tell you that I never suffered depression, but still suffer from exhaustion, no matter what I do.

[@nealdunleavy8267]

I Neal Dunleavy have a T.B.I 07 Nov 2010 was prescribed modafinil It So Works Gentlemaen

[@bruceradz]

Does that medicine work? My stbi was in 2010 as well

[@aphysique]

Really?? I used this yrs ago, before TBI, Seemed to work well

[@samanthasims7123]

How long does it last

[@bruceradz]

Not sure if you are experiencing these things, asking for someone else, or just wanting to learn, but my stbi was twelve years ago, and from what health professionals taught me, and from my own experiences, it will last a lifetime. But I suppose it matters how severe it is. My vision has also been affected, my ability to taste or smell anything has also been affected. Stay safe Samantha 😃 🙏

[@samanthasims7123]

@@bruceradz thank u

[@bruceradz]

@@samanthasims7123 you are welcome, hoping the best for you and yours Samantha 😃 feel free to ask me, if you have any other questions, be happy to help

[@samanthasims7123]

@@bruceradz thank u so much

[@daviebevan]

If you have a Traumatic Brain Injury. It is, the effects are for life.

[@AndrewB221]

It’s just like Hell really? I think a lot about movements I can and want to make and my future and where I want to be? But obviously I’m not there? I dedicated years of my life post injury to Fitness and Cardio and everything outside of myself? I want to relax