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Getting better

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Old 08-23-2019, 03:01 AM   #1
Vania
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Default Getting better

I have experienced a significant improvement recently (after 3 years of PCS). I am writing this so that others know that improvements are possible even years after an injury, and to make sure that this website also has some more positive stories from time to time.

Most of my progress pertains to the physical symptoms. I am now able to do 3 hour-hikes without any problem, while 6 months ago any form of exercise was impossible. My headaches are gone most of the time. I am feeling more energetic. I am less sensitive to jolts, jarring, car rides etc. (although this is still a problem).

My cognitive issues have also improved a bit (less brain fog). I am in general feeling less anxious after minor hits and jolts - this was a huge issue before, but I had so many small relapses that my body and mind finally learned not to overrract.

I am not sure what to attribute this progress too, but I felt that the following things made a difference:

- walking at least an hour a day - it was difficult at first but I got some strength and stamina back quickly and it also did wonders for my mood. We have known since Hippocrates that walking is a good medicine, and recent research suggests that exercising below symptoms promotes recovery. I made sure to use very well cushioned shoes to minimize jarring.

- accepting that some of my issues were a combination of PCS and depression (brain fog, fatigue), and addressing the latter.

I hope this can help and/or give hope to some of you.
Vania
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Old 08-25-2019, 01:47 PM   #2
guitardude
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Originally Posted by Vania View Post
I have experienced a significant improvement recently (after 3 years of PCS). I am writing this so that others know that improvements are possible even years after an injury, and to make sure that this website also has some more positive stories from time to time.

Most of my progress pertains to the physical symptoms. I am now able to do 3 hour-hikes without any problem, while 6 months ago any form of exercise was impossible. My headaches are gone most of the time. I am feeling more energetic. I am less sensitive to jolts, jarring, car rides etc. (although this is still a problem).

My cognitive issues have also improved a bit (less brain fog). I am in general feeling less anxious after minor hits and jolts - this was a huge issue before, but I had so many small relapses that my body and mind finally learned not to overrract.

I am not sure what to attribute this progress too, but I felt that the following things made a difference:

- walking at least an hour a day - it was difficult at first but I got some strength and stamina back quickly and it also did wonders for my mood. We have known since Hippocrates that walking is a good medicine, and recent research suggests that exercising below symptoms promotes recovery. I made sure to use very well cushioned shoes to minimize jarring.

- accepting that some of my issues were a combination of PCS and depression (brain fog, fatigue), and addressing the latter.

I hope this can help and/or give hope to some of you.
Vania
Very happy for you! Weird to think I'm getting close to a year out. Certain symptoms still bug me, and not feeling quite 100% on the cognitive side. Some days at work I feel pretty out of it which can be depressing, but at the same time I'm less often feeling the dreadful self loathing that pretty much always accompanied it more early on, in which I felt like I was practically brain dead. This shift is giving me hope, that some day I'll move on from the depersonalized surreal fogginess into feeling more present.

I recently completed a 4 day backpacking trip with 36 miles of hiking- was very apprehensive leading into it but the walking with resistance overall felt so good, and it only seemed to clear up my brain if anything. Curious, how did you go about addressing the mental health aspect?

Trying to keep my dream (of moving to NYC and playing music professionally) alive. Who's to say where I could be a year from now!
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Old 08-25-2019, 01:58 PM   #3
Vania
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Thanks Guitardude! One year out is still early, although I know it feels different. But I'm doing much better now than 1 year out, and I very much hope this will be the case for you as well.

Regarding depression, I followed some very standard advice:
- seeing a therapist twice a month
- exercising as much as I could every day
- making sure I have "pleasurable" activities scheduled every day. This sounds silly but I tend to be a perfectionist / anxious type and I had fallen into a trap where I was either working or resting, and not enjoyibg life anymore. I suspect I was chronically dopamine-deprived So I changed my mindset and forced myself to work less, seek out friends more regularly, find new hobbies compatible with PCS, etc.

All the best to you.
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Old 08-25-2019, 04:22 PM   #4
guitardude
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Thanks Guitardude! One year out is still early, although I know it feels different. But I'm doing much better now than 1 year out, and I very much hope this will be the case for you as well.

Regarding depression, I followed some very standard advice:
- seeing a therapist twice a month
- exercising as much as I could every day
- making sure I have "pleasurable" activities scheduled every day. This sounds silly but I tend to be a perfectionist / anxious type and I had fallen into a trap where I was either working or resting, and not enjoyibg life anymore. I suspect I was chronically dopamine-deprived So I changed my mindset and forced myself to work less, seek out friends more regularly, find new hobbies compatible with PCS, etc.

All the best to you.
Fantastic. I consider myself extremely lucky in that while my pcs has exacerbated my tinnitus, I haven't had noise sensitivity issues, so I can still mostly enjoy seeing music in town and participating in jam sessions; in fact, I'm going to even more of them now than before. Definitely helps me to have something to look forward to each week. Upping the anti on exercise has certainly helped a bit too

EDIT: I had forgotten about your line of work, and wanted to ask- how are your math skills these days? My background is in physics, and I love working out challenging math problems but can get discouraged when I feel my fogginess is making me less engaged in this craft
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Old 08-25-2019, 07:55 PM   #5
betterdays
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Originally Posted by guitardude View Post
Very happy for you! Weird to think I'm getting close to a year out. Certain symptoms still bug me, and not feeling quite 100% on the cognitive side. Some days at work I feel pretty out of it which can be depressing, but at the same time I'm less often feeling the dreadful self loathing that pretty much always accompanied it more early on, in which I felt like I was practically brain dead. This shift is giving me hope, that some day I'll move on from the depersonalized surreal fogginess into feeling more present.

I recently completed a 4 day backpacking trip with 36 miles of hiking- was very apprehensive leading into it but the walking with resistance overall felt so good, and it only seemed to clear up my brain if anything. Curious, how did you go about addressing the mental health aspect?

Trying to keep my dream (of moving to NYC and playing music professionally) alive. Who's to say where I could be a year from now!
hi guitardude!

I'm well aware that every brain is different so hearing others' experiences with overcoming certain symptoms can do nothing but provide reassurance that it is possible- but, as we all know, that certainly isn't nothing! While I am closing in on my recovery at 5 months (still some sleep issues to sort out), it is certainly possible to overcome this even after a year. I just wanted to outline my recovery trajectory to give you some reassurance.

I understand the frustration that comes with not feeling connected/totally 'with it'. For months, it made me angry, confused, and even suicidal at times. I felt as if I was losing connection with myself and the things I held dearest. I had it really, really bad. I'm so glad you're not in such a dark place anymore, as I know how awful of a place it is to be in. My feelings of derealization/fogginess slowly tapered out over the course of a few months, but not always in a linear fashion or a predictable pattern. Sometimes, it would take me weeks/months to see even minuscule improvements, while other times (and I know it sounds kukoo-kachoo!), I would blink and my world would be that much clearer. The last month I have seen rapid improvement, which comes to show that even though recovery has been slow up until this point, there is always the possibility of healing speeding up. I think the most frustrating aspect of this whole business is the unknown nature of it. There are so many things that can go eschew when you hit your head, and it can be so incredible overwhelming. But know that it can get better, and quite frankly, will most likely just become a bad memory! i grew a lot as a person through this, and you will too.

I guess the point I want to make in short is expecting a recovery trajectory will only set you up for disappointment. Know that you are healing, whether the effects of that healing are palpable or not. Just wanted to share a positive story, just in case you needed it.

(Oh! Also. I saw a behavioral optometrist who saw no problems with my vision, which eased my anxiety by tenfold. It's a good idea to go get checked out, if only to assuage some anxiety. And if they do find anything, I have heard many people's fogginess improve after vision therapy!)
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Old 08-27-2019, 12:10 PM   #6
Vania
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EDIT: I had forgotten about your line of work, and wanted to ask- how are your math skills these days? My background is in physics, and I love working out challenging math problems but can get discouraged when I feel my fogginess is making me less engaged in this craft
Math / cognitive skills is the dimension that has improved the least unfortunately. The brain fog has almost disappeared, which is great, and for short periods of time I feel completely fine. But my problem is that my brain has become intolerant to the prolonged effort required to do math at a professional level. Ideally I should be able to concentrate on a problem for 3 hours uninterrupted, read papers, write equations, etc., but this type of effort gives me strong headaches quite quickly, and even a full-blown relapse if I don't stop. This is frustrating, and this forces me to consider a career change, but at the moment I am mostly feeling happy and grateful about the improvement in my physical symptoms.

About your tinnitus, you are probably aware of this already, but professional ear plugs make a huge difference, as they protect your ears while preserving the quality of the sound. I used to be an amateur musician too and I used these regularly (before PCS forced me to give up on music).
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Old 08-27-2019, 01:16 PM   #7
TheNorwegian
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Vania, in my experience the brain fog is the last symptom to clear up - it took me 3 years before it was completely gone. So dont give up on your career plans yet:-)
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Vania (08-28-2019)
Old 08-27-2019, 02:13 PM   #8
guitardude
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Originally Posted by Vania View Post
Math / cognitive skills is the dimension that has improved the least unfortunately. The brain fog has almost disappeared, which is great, and for short periods of time I feel completely fine. But my problem is that my brain has become intolerant to the prolonged effort required to do math at a professional level. Ideally I should be able to concentrate on a problem for 3 hours uninterrupted, read papers, write equations, etc., but this type of effort gives me strong headaches quite quickly, and even a full-blown relapse if I don't stop. This is frustrating, and this forces me to consider a career change, but at the moment I am mostly feeling happy and grateful about the improvement in my physical symptoms.

About your tinnitus, you are probably aware of this already, but professional ear plugs make a huge difference, as they protect your ears while preserving the quality of the sound. I used to be an amateur musician too and I used these regularly (before PCS forced me to give up on music).
While that does sound frustrating, I want to side with norwegian and say keep your chin up - it seems like your ability to think properly has just about restored, it's only the fatigue that is getting to you. Maybe with some more time and exercising properly, you'll have the energy to work for longer! While nothing is certain in this whole realm, it does seem encouraging that you have periods where you can think clearly.

Just curious, have you used any specific modalities (LLLT, chiro, etc...) over the course of your recovery? or has it been more 'organic'
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Old 08-27-2019, 10:35 PM   #9
RPulver
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While that does sound frustrating, I want to side with norwegian and say keep your chin up - it seems like your ability to think properly has just about restored, it's only the fatigue that is getting to you. Maybe with some more time and exercising properly, you'll have the energy to work for longer! While nothing is certain in this whole realm, it does seem encouraging that you have periods where you can think clearly.

Just curious, have you used any specific modalities (LLLT, chiro, etc...) over the course of your recovery? or has it been more 'organic'
This is a great post! I also am having issues with post concussive syndrome, but mostly with anxiety with re-injury. I especially appreciate he fact about setting yourself up for a timeline is a setup for failure. In my mind I figured I would be back to normal in 6 weeks because that is what I had been used to with past concussions. Now I am almost 1.5 years in and still working on it. I have seen psych and neuro optometry. I think there is something to the vision piece, but wish I could find a good doc for the anxiety component. Im sure I have poor coping mechanism with no prior psych history though. Glad to see you are recovering though!
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Old 08-28-2019, 03:17 AM   #10
Vania
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Just curious, have you used any specific modalities (LLLT, chiro, etc...) over the course of your recovery? or has it been more 'organic'
The chiro helped with my tesion headaches, but that's it.
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