Concussions are a drag. How to reduce the drag?
March 9, 2017 11:37 AM Subscribe
My partner sustained a concussion about a week and a half ago. The ER and primary care doc say to just take it easy. But he's miserable: light-sensitive, sound-sensitive, headaches. Had to miss a major work function connected to his future in his company. How can I best support him?
This has been a hard year for my partner- a few injuries, and now this concussion at an important time for him at work. His symptoms weren't too bad at first, and the ER doc seemed to think he'd bounce back quickly. But it's taking longer than expected, and he may have pushed too much right away by continuing to try to work somewhat. He's now basically practicing full rest.
His company is understanding, but he feels awful that he's out of commission. He's depressed and frustrated and sad. We have an appointment with a post-concussion specialist next week.
If you or a loved suffered a mild traumatic brain injury, what advice do you have about support and care during the recovery time? It's also scary for me, though I know these things usually resolve. I'm trying to also stay calm so I can better support him. Any supportive thoughts or advice appreciated.
This has been a hard year for my partner- a few injuries, and now this concussion at an important time for him at work. His symptoms weren't too bad at first, and the ER doc seemed to think he'd bounce back quickly. But it's taking longer than expected, and he may have pushed too much right away by continuing to try to work somewhat. He's now basically practicing full rest.
His company is understanding, but he feels awful that he's out of commission. He's depressed and frustrated and sad. We have an appointment with a post-concussion specialist next week.
If you or a loved suffered a mild traumatic brain injury, what advice do you have about support and care during the recovery time? It's also scary for me, though I know these things usually resolve. I'm trying to also stay calm so I can better support him. Any supportive thoughts or advice appreciated.
I wish I could be more helpful, but the answer is just help him and do what he asks. I've had two fairly minor concussions, and both times, the best thing was just rest and lack of stress. Sitting in bed with the shades closed and a cold rag on my head, etc. I know he doesn't really want to do that; nobody does. But it's important. Nobody feels bad if they're stuck in bed because they have the flu, or because they have a broken leg. This is the same thing. He suffered an injury and needs to recover.
If he's still dizzy when he stands up, make sure you're there to help support his weight so that he doesn't fall. It's a dizziness unlike any other.
The nausea is real, too. If you have multiple bathrooms, try to use a different one than the one closest to him, because when he feels sick, it's urgent.
But mostly, it's just tending to him like you would if he had a bad cold - bringing him things, asking if he needs help, etc. Best wishes!
posted by kevinbelt at 12:57 PM on March 9, 2017 [3 favorites]
If he's still dizzy when he stands up, make sure you're there to help support his weight so that he doesn't fall. It's a dizziness unlike any other.
The nausea is real, too. If you have multiple bathrooms, try to use a different one than the one closest to him, because when he feels sick, it's urgent.
But mostly, it's just tending to him like you would if he had a bad cold - bringing him things, asking if he needs help, etc. Best wishes!
posted by kevinbelt at 12:57 PM on March 9, 2017 [3 favorites]
Best answer: My husband sustained a TBI over a decade ago.
This is hard, and I'm so sorry you're going through it.
The thing I remember most strongly is that it was hard for both of us to accept the need to rest, but what his doctors said was that his brain's ability to recover depended a lot on rest. They threw a lot of data at us about how much of your daily caloric intake goes to fuel your brain, and how much more energy it takes to rebuild a damaged brain.
So based on what doctors said to us at the time, I'd encourage you to encourage him to take his recovery seriously. Yes, it is hard to miss work events that should advance your career, but in the long run he's better off not pushing himself too hard. He'll recover faster and more fully if he gives his brain space to recover.
When you meet with the post-concussion specialist, talk to them about coming up with a plan. What is he missing right now and what can he do to fill that gap without exacerbating his symptoms? Let them help you figure out the logistics. Make them help you figure out the logistics.
And as for your stress, own it and honor it. Being a caregiver is really hard. It was really important for me to make sure that I was taking care of my stress and health. Whatever your thing is: -- yoga, knitting, metalwork, punching rocks -- make sure you are still doing what you need to do.
We both read a lot of meaning of life books during his recovery. Sharon Salzberg and Abraham Joshua Heschel resonated with us, and I listened to a lot of On Being during that time. What resonates with you might be different, but human frailty is scary and it is okay to have a lot of really big questions while you're navigating something like this (He spent some time unconscious, so we might have been more emotional about the whole thing than you are. His TBI was not mild, though he did make a full recovery).
PS. poffin boffin, what is BPPD?
posted by amandabee at 12:59 PM on March 9, 2017 [5 favorites]
This is hard, and I'm so sorry you're going through it.
The thing I remember most strongly is that it was hard for both of us to accept the need to rest, but what his doctors said was that his brain's ability to recover depended a lot on rest. They threw a lot of data at us about how much of your daily caloric intake goes to fuel your brain, and how much more energy it takes to rebuild a damaged brain.
So based on what doctors said to us at the time, I'd encourage you to encourage him to take his recovery seriously. Yes, it is hard to miss work events that should advance your career, but in the long run he's better off not pushing himself too hard. He'll recover faster and more fully if he gives his brain space to recover.
When you meet with the post-concussion specialist, talk to them about coming up with a plan. What is he missing right now and what can he do to fill that gap without exacerbating his symptoms? Let them help you figure out the logistics. Make them help you figure out the logistics.
And as for your stress, own it and honor it. Being a caregiver is really hard. It was really important for me to make sure that I was taking care of my stress and health. Whatever your thing is: -- yoga, knitting, metalwork, punching rocks -- make sure you are still doing what you need to do.
We both read a lot of meaning of life books during his recovery. Sharon Salzberg and Abraham Joshua Heschel resonated with us, and I listened to a lot of On Being during that time. What resonates with you might be different, but human frailty is scary and it is okay to have a lot of really big questions while you're navigating something like this (He spent some time unconscious, so we might have been more emotional about the whole thing than you are. His TBI was not mild, though he did make a full recovery).
PS. poffin boffin, what is BPPD?
posted by amandabee at 12:59 PM on March 9, 2017 [5 favorites]
oh that should say BPPV
posted by poffin boffin at 1:13 PM on March 9, 2017
posted by poffin boffin at 1:13 PM on March 9, 2017
Best answer: So, this happened to me. I was the partner. His symptoms were more of the 'can't read anything, moving head is difficult because it makes the room spin' type.
My top-level pieces of advice:
1. The science is young and frequently changing.
2. You're the primary caregiver for awhile, take care of your own self too.
3. Find things he can do; it'll make you both feel better.
4. Both of you need to resist the urge to push more than his doctor wants, and this will suck.
So,
1. THE SCIENCE
One of the ongoing trends in concussion science right now is a preamble saying "we don't know much."
But Ontario has an evidence-based set of recommendations that I'm going to give you the highlights of. A lot of them are about early diagnosis; that's covered. Up next:
a) He needs to be told that the majority of people see a complete resolution of symptoms within 3 months (in my boyfriend's case, it was 3 months until he was back at work). The doctor's advice (you'll probably be better soon!) is statistically accurate but now that he's not an outlier and he's not 'doomed'. He's normal.
b) You both need to know the full gamut of 'normal symptoms', as knowing that things are normal helps you guys freak out less, and helps you identify new trends. I literally read this advice card aloud to my boyfriend (as he could not read at the time).
c) any return to normal activity should be gradual.
d) otherwise, trust the doctors and their assessments
2. CAREGIVING
It sucks! It's really fucking hard. You're running a home solo AND you're worried about the person you love AND you can't 'fix them'. You just have to sit and wait.
You're allowed to think it's hard. Cancel commitments if you gotta. I stopped cleaning the shower for 3 months and vacuuming? Fuck no. (I now recommend Scrubbing Bubbles to help deal with the pink-orange shower bacteria, at least).
BUT YOU GOTTA TAKE CARE OF YOUR OWN SHIT TOO. If you don't, you'll fray. This is a financial hit, too, but -- if you can afford it, consider ordering out peridiocally. Batch-cook and freeze so you're not spending your entire life just trying to feed both of you. Find small things that make you happy (tiny piece of chocolate, for when you're the most tired but need to wait for laundry?). Meditate (empiric evidence that this is good for you!)
3. FIND THINGS HE CAN DO
Right now he feels like a bump on a log and it makes him antsy and feel awful and makes you nervous and worried and wondering what you can do to help.
In my partner's case: ALL THE PODCASTS + one of those iPod speakers so he could listen without interacting with the painful computer. This was made more challenging by the fact that I had to fill up his iPod, but whatever, it gave him hours and hours of things to think about that wasn't how shit this situation is. Want to think about philosophy and life and its meaning? Partially Examined Life. Goofy interviews? You Made It Weird. Goofiness, period? My Brother My Brother and Me. Language and words? The Allusionist. Design? 99% Invisible. Stupid news? Wait Wait Don't Tell Me. Whatever. Name a subject, there's a podcast.
4. NO PUSHING (beyond what the doctor recommends)
So, this sit-and-wait healing process involves getting antsy as fuck. Not helped by the fact that everyone had these really upsetting concussion stories to share with me when what I secretly needed was "AND THEN EVERYTHING WAS OK".
Your doctor will have specific guidance, but our doc's guidance was: Every day, try a tiny little push. If your symptoms (headaches, primarily, in his case), get worse: IMMEDIATELY STOP and skip the 'push' tomorrow to let your head reset.
And he meant the TINY PUSH thing. First few days were about gradually increasingly the light from 'crypt' to 'Miss Havisham's Wedding Table Room' with nothing else. He was in dim rooms for a goodly amount of time.
He was so excited to go back to work that he went back too early, regretted it, and rolled back to a worse state than he was before going to work.
This is part of why it's important that he find stuff he can do; it makes the incredible itch to push a little easier to cope with and a little easier to ignore.
If he gets antsy about how this might affect his reputation at work, remind him that going to work early and being a total space case because his brain is still trying to knit itself back together is going to be worse.
On a more practical note... When he can start using electronics again, I strongly recommend turning on accessibility options. Dimming the monitor, increasing font size, playing with contrast. Phones also have accessibility modes.
posted by flibbertigibbet at 2:08 PM on March 9, 2017 [12 favorites]
My top-level pieces of advice:
1. The science is young and frequently changing.
2. You're the primary caregiver for awhile, take care of your own self too.
3. Find things he can do; it'll make you both feel better.
4. Both of you need to resist the urge to push more than his doctor wants, and this will suck.
So,
1. THE SCIENCE
One of the ongoing trends in concussion science right now is a preamble saying "we don't know much."
But Ontario has an evidence-based set of recommendations that I'm going to give you the highlights of. A lot of them are about early diagnosis; that's covered. Up next:
a) He needs to be told that the majority of people see a complete resolution of symptoms within 3 months (in my boyfriend's case, it was 3 months until he was back at work). The doctor's advice (you'll probably be better soon!) is statistically accurate but now that he's not an outlier and he's not 'doomed'. He's normal.
b) You both need to know the full gamut of 'normal symptoms', as knowing that things are normal helps you guys freak out less, and helps you identify new trends. I literally read this advice card aloud to my boyfriend (as he could not read at the time).
c) any return to normal activity should be gradual.
d) otherwise, trust the doctors and their assessments
2. CAREGIVING
It sucks! It's really fucking hard. You're running a home solo AND you're worried about the person you love AND you can't 'fix them'. You just have to sit and wait.
You're allowed to think it's hard. Cancel commitments if you gotta. I stopped cleaning the shower for 3 months and vacuuming? Fuck no. (I now recommend Scrubbing Bubbles to help deal with the pink-orange shower bacteria, at least).
BUT YOU GOTTA TAKE CARE OF YOUR OWN SHIT TOO. If you don't, you'll fray. This is a financial hit, too, but -- if you can afford it, consider ordering out peridiocally. Batch-cook and freeze so you're not spending your entire life just trying to feed both of you. Find small things that make you happy (tiny piece of chocolate, for when you're the most tired but need to wait for laundry?). Meditate (empiric evidence that this is good for you!)
3. FIND THINGS HE CAN DO
Right now he feels like a bump on a log and it makes him antsy and feel awful and makes you nervous and worried and wondering what you can do to help.
In my partner's case: ALL THE PODCASTS + one of those iPod speakers so he could listen without interacting with the painful computer. This was made more challenging by the fact that I had to fill up his iPod, but whatever, it gave him hours and hours of things to think about that wasn't how shit this situation is. Want to think about philosophy and life and its meaning? Partially Examined Life. Goofy interviews? You Made It Weird. Goofiness, period? My Brother My Brother and Me. Language and words? The Allusionist. Design? 99% Invisible. Stupid news? Wait Wait Don't Tell Me. Whatever. Name a subject, there's a podcast.
4. NO PUSHING (beyond what the doctor recommends)
So, this sit-and-wait healing process involves getting antsy as fuck. Not helped by the fact that everyone had these really upsetting concussion stories to share with me when what I secretly needed was "AND THEN EVERYTHING WAS OK".
Your doctor will have specific guidance, but our doc's guidance was: Every day, try a tiny little push. If your symptoms (headaches, primarily, in his case), get worse: IMMEDIATELY STOP and skip the 'push' tomorrow to let your head reset.
And he meant the TINY PUSH thing. First few days were about gradually increasingly the light from 'crypt' to 'Miss Havisham's Wedding Table Room' with nothing else. He was in dim rooms for a goodly amount of time.
He was so excited to go back to work that he went back too early, regretted it, and rolled back to a worse state than he was before going to work.
This is part of why it's important that he find stuff he can do; it makes the incredible itch to push a little easier to cope with and a little easier to ignore.
If he gets antsy about how this might affect his reputation at work, remind him that going to work early and being a total space case because his brain is still trying to knit itself back together is going to be worse.
On a more practical note... When he can start using electronics again, I strongly recommend turning on accessibility options. Dimming the monitor, increasing font size, playing with contrast. Phones also have accessibility modes.
posted by flibbertigibbet at 2:08 PM on March 9, 2017 [12 favorites]
P.S. You got this. Just remember: he's literally not quite himself right now. My fiance had limited emotional/personality disturbance but it can happen.
You can do this. It will get better. Treat every physical symptom like you would if the symptoms was stand-alone. Nausea? Don't move much, eat whatever calms his stomach. Dizzyness? Get him a station near the bathroom that will minimize the walking. Whatever.
posted by flibbertigibbet at 2:13 PM on March 9, 2017 [1 favorite]
You can do this. It will get better. Treat every physical symptom like you would if the symptoms was stand-alone. Nausea? Don't move much, eat whatever calms his stomach. Dizzyness? Get him a station near the bathroom that will minimize the walking. Whatever.
posted by flibbertigibbet at 2:13 PM on March 9, 2017 [1 favorite]
Best answer: Ice, dark rooms, sleep and twiddling of thumbs are most important in the first days. Don't strain your eyes on screens. Low-key repetitive tasks like coloring or knitting are good. After that it's about holistic wellness. Eat a careful diet, absolutely no alcohol, no more than a cup of coffee a day. Switch to tea if you can. There's evidence that "gradual exercise, rather than rest alone, actually helps to restore the balance of the brain’s auto-regulation mechanism, which controls the blood pressure and supply to the brain." You heal faster if you're active.
My partner had difficulty reading for 3mo after a moderate concussion and horrible personality / mood spikes for 6mo. It's hard not to take it personally, but bursts of rage, confusion, anxiety and grief are all symptoms. Stay calm, speak gently, do not engage, the spiral gains energy if you feed it. Make sure they're safe then let them cool down. Track frequency & severity, it will level out with time. Sometimes there are triggers, ID them if you can, but often the bouts come out of nowhere. It's not a reflection on you or your relationship, and your partner is not a secret monster.
posted by fritillary at 5:23 PM on March 9, 2017 [1 favorite]
My partner had difficulty reading for 3mo after a moderate concussion and horrible personality / mood spikes for 6mo. It's hard not to take it personally, but bursts of rage, confusion, anxiety and grief are all symptoms. Stay calm, speak gently, do not engage, the spiral gains energy if you feed it. Make sure they're safe then let them cool down. Track frequency & severity, it will level out with time. Sometimes there are triggers, ID them if you can, but often the bouts come out of nowhere. It's not a reflection on you or your relationship, and your partner is not a secret monster.
posted by fritillary at 5:23 PM on March 9, 2017 [1 favorite]
I had a concussion a year and half ago. I was off work and it took about 2 months before I felt mostly like myself again and another couple for the majority of the symptoms to completely resolve.
Most advice I would give has already been covered. Ditto on the podcasts. They got me through the first couple week or so as not only screen time was recommended as a no no I couldn't look at a screen for very long without feeling awful even if I wanted too.
I did experience some cognitive disfunction. There were times where I couldn't remember or figure out how to do simple things or even basic things took a lot of effort and was so tiring. This was terrifying but normal.
Another things that caught me off guard was just being so tired and how much just basic functioning made me tired. This was frustrating and it took me a bit to accept that it was the head injury because it didn't feel like I was doing much of anything.. There were days when making something to eat left me as exhausted as if I had walked for miles. I slept a lot. It is really important to be able to just sleep if needed and not feel bad about it. It was illuminating just how much energy our brains use to do everyday things.
The other main thing I can pass on is that recovery isn't always linear. Mine wasn't. I'd have a few good days and then it would be crappy again. When I felt better enough and was given the go ahead to go back to work for a few hours a day I made it through the week but by the next week it was worse again. I ended up having to take another couple of weeks off. I was told by both my doctor and my Workers Comp worker that this was also a very common thing to happen when recovering from a head injury. You kinda of have to just go with the flow of it and be aware that this can happen.
posted by Jalliah at 7:24 PM on March 9, 2017 [1 favorite]
Most advice I would give has already been covered. Ditto on the podcasts. They got me through the first couple week or so as not only screen time was recommended as a no no I couldn't look at a screen for very long without feeling awful even if I wanted too.
I did experience some cognitive disfunction. There were times where I couldn't remember or figure out how to do simple things or even basic things took a lot of effort and was so tiring. This was terrifying but normal.
Another things that caught me off guard was just being so tired and how much just basic functioning made me tired. This was frustrating and it took me a bit to accept that it was the head injury because it didn't feel like I was doing much of anything.. There were days when making something to eat left me as exhausted as if I had walked for miles. I slept a lot. It is really important to be able to just sleep if needed and not feel bad about it. It was illuminating just how much energy our brains use to do everyday things.
The other main thing I can pass on is that recovery isn't always linear. Mine wasn't. I'd have a few good days and then it would be crappy again. When I felt better enough and was given the go ahead to go back to work for a few hours a day I made it through the week but by the next week it was worse again. I ended up having to take another couple of weeks off. I was told by both my doctor and my Workers Comp worker that this was also a very common thing to happen when recovering from a head injury. You kinda of have to just go with the flow of it and be aware that this can happen.
posted by Jalliah at 7:24 PM on March 9, 2017 [1 favorite]
Best answer: I had a severe concussion 19 years ago, and the only way I remember that is because my youngest is 18 years old and was conceived post-concussion when I couldn't remember what day it was and wasn't taking birth control pills* regularly (but don't tell him this).
So much great advice upthread. I want to add as the concussion sufferer it felt like my brain was in a bit of marshmallow cloudiness for a LONG time. I would go for walks and get lost 2 blocks from my house and got weepy for no reason.
It's also really scary when you know you should know what day it is or where you are, but you just can't remember. I literally kept forgetting what town I lived in and who I had spoken to that day or what I had done.
The exhaustion is real. It's important to eat like an athlete with lots of good fuel for the brain, AND liquids. Brains like liquids.
I didn't take aftercare advice seriously and didn't go to therapy regularly. I ended up having permanent damage in the area that deals with spatial recognition and to this day, if I am not literally looking at a stair, my brain doesn't register its presence and my feet won't move right.
If your partner is advised to see specialists and get cognitive assistance, do it. The brain is a vast and mysterious place and it's critical to follow all the advice you're given. You're up for a bit of a challenge -- please take care of yourself.
*(and if he's reliant on medication, you're going to have to ensure he takes it.)
posted by yes I said yes I will Yes at 2:14 AM on March 10, 2017 [1 favorite]
So much great advice upthread. I want to add as the concussion sufferer it felt like my brain was in a bit of marshmallow cloudiness for a LONG time. I would go for walks and get lost 2 blocks from my house and got weepy for no reason.
It's also really scary when you know you should know what day it is or where you are, but you just can't remember. I literally kept forgetting what town I lived in and who I had spoken to that day or what I had done.
The exhaustion is real. It's important to eat like an athlete with lots of good fuel for the brain, AND liquids. Brains like liquids.
I didn't take aftercare advice seriously and didn't go to therapy regularly. I ended up having permanent damage in the area that deals with spatial recognition and to this day, if I am not literally looking at a stair, my brain doesn't register its presence and my feet won't move right.
If your partner is advised to see specialists and get cognitive assistance, do it. The brain is a vast and mysterious place and it's critical to follow all the advice you're given. You're up for a bit of a challenge -- please take care of yourself.
*(and if he's reliant on medication, you're going to have to ensure he takes it.)
posted by yes I said yes I will Yes at 2:14 AM on March 10, 2017 [1 favorite]
Best answer: I don't know if the app is still being maintained, but the book SuperBetter (see also TED talk) was written by a game designer recovering from TBI and is incredibly motivational. Essentially, she designed a game to help her with basic tasks and take enjoyment despite the slow rate of recovery. The app has been used with people with depression to good effect as well. You might check it out for some built-in programs for slow baby steps with fun gamified rewards (some of the modules were created by researchers and doctors).
posted by epanalepsis at 6:54 AM on March 10, 2017 [1 favorite]
posted by epanalepsis at 6:54 AM on March 10, 2017 [1 favorite]
This thread is closed to new comments.
wrt the light and sound thing for me the best coping method was to treat it like a migraine, which i have over 30 years hellish experience with. basically always have ginger ale/pepsi on hand for nausea, have plenty of flexible gel ice packs for his head, do not under any circumstances go to the movies or take a subway anywhere; even just being a passenger in a car can be horrible. be careful about strongly-scented things, everything from perfumes to soap to shampoos. eat lightly, small & frequent meals, and nothing spicy that would hurt coming back up in case of nausea.
i also had severe BPPD post-concussion so for me, bed rest would've been hellish. if he's feeling anything similar wrt vertigo/dizziness he may find it more appealing to be in a recliner type thing so that the transition from laying down to sitting up to standing is slower and more controlled.
he should probably start keeping a headache journal if he isn't already doing so. depending on which part of his head took the hit, there can be complications later on with nerve-triggered headaches. he might want to ask his doctor about post-concussion occipital neuralgia if the initial injury was to the back of the head.
posted by poffin boffin at 12:05 PM on March 9, 2017 [6 favorites]