New normal after concussions
November 23, 2018 1:52 PM Subscribe
Years ago I suffered a series of concussions in quick succession in a domestic violence situation. Now, my PTSD is well in hand, and I'm struggling with finding out what my limits are.
Closer to the time of the abuse, I was referred to a neurologist who suggested that long-term effects of the concussions, if there were any, would be unpredictable but that worrying about them wouldn't help. I took this to mean that I should just deal with my PTSD and figure out how to live my life in general, and the rest would take care of itself.
The coping skills I learned for managing PTSD are still really useful -- I can notice when I'm starting to get upset and defuse it! I can see when I am saying unfair things about myself that I would deck someone else for saying about a third party, and try to be kinder! I get plenty of sleep, I'm eating well, I am in physiotherapy to address some arthritis pain from old DV injuries so I can return to a sport that I love but in the meantime I spend about 90 minutes enjoying the outdoors at a brisk walk every day, and I have fulfilling hobbies and many ambitions and friends and a spouse who love and support me. I have had experiences of anxiety and depression before, and I am not feeling anxious or depressed now.
However, I'm frustrated by the things I can't seem to do. Reading for extended periods is extremely difficult, no matter how enthused about the text I am. (My hard limit is about 15 minutes after which I hit a wall of cognitive fatigue and am an exhausted wreck for the rest of the day.) My office was recently reorganized into a configuration that I love, except the hum of the HVAC is audible from my desk when it wasn't before, and when there's other ambient sounds at the same time my memory and attention span suffer. Physical pain also reduces my ability to think clearly, which seems like a no-brainer? But I have so little bandwidth to begin with that it's throwing me dramatically off-kilter. For most of the last year I have been hauling myself home from work and falling asleep on the couch at 8pm because I am so exhausted by everyday things I used to be able to handle just fine.
My workplace is sympathetic and brain injury-aware. We're working on figuring out strategies: to begin with, I have interim drugstore earplugs and an appointment to get custom ones, my workflow has been changed to be more flexible so I can switch between tasks more often or get up and take breaks when I need a shift in focus, and we have more frequent casual meetings to check in and see where I am at so that time-sensitive things don't get inadvertently dropped.
My GP is out of ideas except to refer me to another neurologist, without a lot of optimism that there will be some kind of one-and-done solution that will magically make me as smart and capable again as I remember being before. I am unlikely to be able to see a specialist before April of next year. I'm also going to go back to my therapist once I have finished this course of physio (can't afford both at once).
I suppose what I am having trouble with is this: it feels ungrateful to complain about relatively minor inconveniences, when I am lucky to be alive. But, on the other hand, when I was undergoing intensive PTSD treatment, I had imagined that so many of my problems with memory, concentration, attention span, and exhaustion would be resolved, and they weren't!
I'm interested in any resources or practical advice anyone might have for people in this situation, or suggestions on how to settle in to a "new normal" without getting demoralized and bogged down in how different it is from the old normal, or strategies for reframing the feeling that I'm not resourceful or capable, or memoirs (maybe in essay format so I can read 'em more easily, hah).
Thanks for your help.
Closer to the time of the abuse, I was referred to a neurologist who suggested that long-term effects of the concussions, if there were any, would be unpredictable but that worrying about them wouldn't help. I took this to mean that I should just deal with my PTSD and figure out how to live my life in general, and the rest would take care of itself.
The coping skills I learned for managing PTSD are still really useful -- I can notice when I'm starting to get upset and defuse it! I can see when I am saying unfair things about myself that I would deck someone else for saying about a third party, and try to be kinder! I get plenty of sleep, I'm eating well, I am in physiotherapy to address some arthritis pain from old DV injuries so I can return to a sport that I love but in the meantime I spend about 90 minutes enjoying the outdoors at a brisk walk every day, and I have fulfilling hobbies and many ambitions and friends and a spouse who love and support me. I have had experiences of anxiety and depression before, and I am not feeling anxious or depressed now.
However, I'm frustrated by the things I can't seem to do. Reading for extended periods is extremely difficult, no matter how enthused about the text I am. (My hard limit is about 15 minutes after which I hit a wall of cognitive fatigue and am an exhausted wreck for the rest of the day.) My office was recently reorganized into a configuration that I love, except the hum of the HVAC is audible from my desk when it wasn't before, and when there's other ambient sounds at the same time my memory and attention span suffer. Physical pain also reduces my ability to think clearly, which seems like a no-brainer? But I have so little bandwidth to begin with that it's throwing me dramatically off-kilter. For most of the last year I have been hauling myself home from work and falling asleep on the couch at 8pm because I am so exhausted by everyday things I used to be able to handle just fine.
My workplace is sympathetic and brain injury-aware. We're working on figuring out strategies: to begin with, I have interim drugstore earplugs and an appointment to get custom ones, my workflow has been changed to be more flexible so I can switch between tasks more often or get up and take breaks when I need a shift in focus, and we have more frequent casual meetings to check in and see where I am at so that time-sensitive things don't get inadvertently dropped.
My GP is out of ideas except to refer me to another neurologist, without a lot of optimism that there will be some kind of one-and-done solution that will magically make me as smart and capable again as I remember being before. I am unlikely to be able to see a specialist before April of next year. I'm also going to go back to my therapist once I have finished this course of physio (can't afford both at once).
I suppose what I am having trouble with is this: it feels ungrateful to complain about relatively minor inconveniences, when I am lucky to be alive. But, on the other hand, when I was undergoing intensive PTSD treatment, I had imagined that so many of my problems with memory, concentration, attention span, and exhaustion would be resolved, and they weren't!
I'm interested in any resources or practical advice anyone might have for people in this situation, or suggestions on how to settle in to a "new normal" without getting demoralized and bogged down in how different it is from the old normal, or strategies for reframing the feeling that I'm not resourceful or capable, or memoirs (maybe in essay format so I can read 'em more easily, hah).
Thanks for your help.
I've been dealing with a lot of the same problems you have as a result of a series of concussions, and I am so sorry you're having these issues. I'm still trying to adjust to the person I am now, and it's hard. There's not one thing that's going to fix this, although there are therapies out there that can help, like vision therapy.
You need to go to someone who specializes in brain injuries and has experience with long-term effects from concussions, like post-concussion syndrome. I have PCS, and to be honest, most neurologists who don't specialize in it may not even believe that you can still have concussion issues years after the impact.
Check with your state chapter of the Brain Injury Alliance of America -- they may be able to point you in the direction of support groups. Most brain injury clinics might hold or know where support groups are held -- being around people who are going through the same thing is really helpful.
Here's a few books I found were useful. Each of them has short chapters and easy to read type, and talks a lot about coping mechanisms.
Brainlash by Gail Denton
To Root and To Rise: Accepting Brain Injury by Carole Starr
I found that my new best friends were noise-cancelling headphones and anti-glare glasses to deal with overhead light.
(I've also been drawing comics off and on to help deal with what was going on with me, and created a guide to PCS and living with long-term concussion problems for people who need to know more about it.)
posted by heurtebise at 2:54 PM on November 23, 2018 [8 favorites]
You need to go to someone who specializes in brain injuries and has experience with long-term effects from concussions, like post-concussion syndrome. I have PCS, and to be honest, most neurologists who don't specialize in it may not even believe that you can still have concussion issues years after the impact.
Check with your state chapter of the Brain Injury Alliance of America -- they may be able to point you in the direction of support groups. Most brain injury clinics might hold or know where support groups are held -- being around people who are going through the same thing is really helpful.
Here's a few books I found were useful. Each of them has short chapters and easy to read type, and talks a lot about coping mechanisms.
Brainlash by Gail Denton
To Root and To Rise: Accepting Brain Injury by Carole Starr
I found that my new best friends were noise-cancelling headphones and anti-glare glasses to deal with overhead light.
(I've also been drawing comics off and on to help deal with what was going on with me, and created a guide to PCS and living with long-term concussion problems for people who need to know more about it.)
posted by heurtebise at 2:54 PM on November 23, 2018 [8 favorites]
Not a cure but an occupational therapist could also be a good resource for finding better ways to adapt to the way your brain is currently functioning.
posted by metahawk at 2:59 PM on November 23, 2018 [5 favorites]
posted by metahawk at 2:59 PM on November 23, 2018 [5 favorites]
Time heals some of these wounds, especially the lassitude. Regular exercise helps with overall physical orientation, and keeping everything flowing and delivering needed nutrition to wounded areas consistently. Part of healing this kind of disruption is going ahead and resuming normal activity, and ignoring symptoms, it is one way to train back to your normal state. I say this because this is what I had to do some time ago. Central nervous system injuries are the worst. They disrupt the seat of self, but self is everywhere that is you and it all wants things back to square one. You will get there. Revisit friends and places from before your injuries, safe, beloved people are a repository of memory, of you, a living part of you that helps you remember your natural state.
posted by Oyéah at 4:55 PM on November 23, 2018
posted by Oyéah at 4:55 PM on November 23, 2018
I got a concussion at the beginning of the month and I have been shocked by how much it has affected my cognitive abilities, energy, and mood. The first few weeks were truly awful. This week I'm finally seeing some improvement - I can work out, I can read for longer periods of time, and work conversations are less of a strain as long as I have a break in between each hour.
My recommendation is this: celebrate any and all small advances. I celebrated the day I could finish a sentence, the day I could drive again, the day that I could handle a conversation, the day I could start exercising. Take it easy. Everything I've learned says it is a long process and you have to be patient or else the emotional ups and downs will be even worse.
posted by joan_holloway at 5:02 PM on November 23, 2018 [2 favorites]
My recommendation is this: celebrate any and all small advances. I celebrated the day I could finish a sentence, the day I could drive again, the day that I could handle a conversation, the day I could start exercising. Take it easy. Everything I've learned says it is a long process and you have to be patient or else the emotional ups and downs will be even worse.
posted by joan_holloway at 5:02 PM on November 23, 2018 [2 favorites]
Yeah and by exercise I mean simple, symmetrical, non stress, like walking. Nothing that significantly raises blood pressure. Best to you, it is a process.
posted by Oyéah at 5:05 PM on November 23, 2018
posted by Oyéah at 5:05 PM on November 23, 2018
I found a few things out, just googling (literally pasting your symptom description into Google) - apparently this could be described as “directed attention fatigue” or “cognitive fatigue” (in case those phrases are helpful).
There’s guidance here suggesting you’re doing a lot right in terms of environmental changes.
The doctor also says that as a last resort, it may be possible to try medications that can help stimulate attention, ranging from mild stimulants to those used for ADHD. It appears it would be a bit of a crapshoot, as there’s not much research on medication for TBI-induced cognitive fatigue.
He also suggests watching out for the impact of any sedative drugs.
posted by cotton dress sock at 6:02 PM on November 23, 2018
There’s guidance here suggesting you’re doing a lot right in terms of environmental changes.
The doctor also says that as a last resort, it may be possible to try medications that can help stimulate attention, ranging from mild stimulants to those used for ADHD. It appears it would be a bit of a crapshoot, as there’s not much research on medication for TBI-induced cognitive fatigue.
He also suggests watching out for the impact of any sedative drugs.
posted by cotton dress sock at 6:02 PM on November 23, 2018
This thread is closed to new comments.
I did see my regular eye doc but they weren't really set up to deal with my non-specific complaints of "my eyes feel funny" and "it hurts to look at things". When I was sent to the right clinic they did over an hour of testing (!) and knew what to do right away.
posted by fshgrl at 2:24 PM on November 23, 2018 [2 favorites]