[headcasey]

hi all, ive been suffering from post concussive syndrome for about five months now and im almost at my wits end. my personality has changed dramatically and im seem to alternate between fits of dejection and ambivalence, and general insecurity. i suffered a low grade concussion during my rugby teams' season opener in march and haven't been the same since. i did not lose consciousness and retained full memory of the trauma, however my symptoms refuse to abate and i am terrified that they may be permanent. i have since quit all of my contact sports and have been unable to exercise seriously for months; combined with my plummeting academic performance has lead me to become severely depressed and has distanced me from my friends and family. to make matters worse i had been previously suffering from self confidence issues pertaining to my mental performance as well as a bad experience i had with a football coach pressuring me to play with a torn meniscus. my two biggest hobbies for many years had been contacts sports, and high level academics ( namely abstract mathematics, the physical sciences, and history ). being unusually large and reasonably intelligent i felt that i could be both an academic and athlete, but it seems that a head injury is neither conducive to a healthy mind or body and i now find myself lacking them both. i slur my speech constantly and spend most of my days walking around in a melancholy haze, unable to think and reason on the level of my pre concussion self. furthermore, the slow progress of my recovery has left me unable to exercise recreationally in any capacity. these two forces in tandem have made spending time with my friends and family difficult, as i feel as though i am locked in some sort of mental competition with everyone i meet.this has lead to paranoia and obsessive compulsive behaviors that have strained previously close relationships. reading has become a chore and at times uncomfortable, and watching tv has become a labor intensive task but they're all i can do to keep from going completely stir crazy. i apologize for the long winded post and the disjointed nature thereof but this forum is my last ditch effort to cope with this problem on my own, as those close to me seem incapable of understanding what is happening to me or helping at all. ive begun to lose hope of ever regaining the old me, and have frequently pondered suicide. i have been prescribed amitriptyline for my concussive headache however its positive effects have been negligible. I'm just wondering ihow other people who have gone through this have addressed some of these challenges, because frankly i have no clue what to do next.

[Scott in Fenton]

First of all, you are not alone. Everybody on this board suffers from many of the symptoms you do, some of us all of them, and some of us are in worse shape than you are. No matter what else happens, you can always come here and talk to us about it, and know that you will be understood. Also, you will find some very informed folk here that can tell you more about your situation than most doctors can. Or will.

It would be helpful for us to know what sort of treatment plan you have been under so far, to give you the best advice. Are you seeing a neurologist? What kind of testing has been done?

You need to understand that your symptoms and recovery are individual; no two PCS sufferers are completely alike in either their symptoms or recovery time. Recovery time is impossible to estimate. Anyone that tells you otherwise doesn't really know what they are talking about. Sure, a typical concussion should heal in a couple of weeks to maybe 1 month, but once it goes as long as yours has, the end limit is uncertain. So, concerning yourself about the length of your recovery is not going to help.

Other folks here have a lot of knowledge about what you can do to help yourself, but the most important thing is to rest a lot; your brain needs complete relaxation to heal, it will sap most of your energy in the process. Give yourself a break, don't sweat the difficulties you are experiencing, your only job right now is to rest and allow your brain to heal itself. Beyond that, it is up to the doctors to run some testing and make sure they have the right "culprit" for your symptoms; sometimes it's not even the brain itself that is the problem, but neck issues or visual issues. There's a lot to it.

It helps a lot of us to space your text out like I have been doing, btw. It is hard for some of us to read through a large block of text, whereas adding spaces after about 5 or 6 sentences helps break down the text into easier chucks. A long block of text is not as likely to be read as several shorter blocks.

In closing I'd just like to say that you should never give up hope; if you are having a lot of suicidal thoughts, you may be depressed, which is not uncommon. You should definitely talk to your dr. about those feelings, b/c depression can be treated but if left untreated it can only be detrimental to your recovery. You should relax and rest; that is your main job. If you can, keep a journal of your symptoms that you bring with you to your dr. appointment, so you won't forget anything. A lot of us have problems remembering every symptom we experience when we have to communicate with drs. , and many of us have an issue with communication in general after a mTBI; we simply end up avoiding contact where possible. That, of course, makes it difficult to talk to the drs. about our condition.

My thoughts are with you. I'm glad you found this forum, if you check in and stay up to date you will learn a lot, and if you can do some reading and research in these threads, you will find lots of information and useful links to follow for more information. Just don't over do it, rest is more important.

[Mark in Idaho]

Headcasey, Welcome to NeuroTalk. I'll try to work through your post. I struggle to follow from line to line due to visual symptoms of PCS so I'll reply within your post. It helps many of us if there is a paragraph space every 5 lines.

Originally Posted by headcasey

hi all, ive been suffering from post concussive syndrome for about five months now and im almost at my wits end. my personality has changed dramatically and im seem to alternate between fits of dejection and ambivalence, and general insecurity. >

These are common PCS symptoms. Taking a 'one day at a time' attitude can help you get through this.

<i suffered a low grade concussion during my rugby teams' season opener in march and haven't been the same since. i did not lose consciousness and retained full memory of the trauma, however my symptoms refuse to abate and i am terrified that they may be permanent. >

You are still early in your recovery. Your prolonged recovery is likely due to previous concussions and sub-concussive impacts from rugby and other activities.

<i have since quit all of my contact sports and have been unable to exercise seriously for months; combined with my plummeting academic performance has lead me to become severely depressed and has distanced me from my friends and family. to make matters worse i had been previously suffering from self confidence issues pertaining to my mental performance as well as a bad experience i had with a football coach pressuring me to play with a torn meniscus. >

You academic performance decline is likely due to an accumulations of prior concussions and sub-concussive impacts. Your coach's "play at all costs" pressures likely caused you to risk your brain when it would have been better to sit out. This coaching attitude can be very dangerous.

<my two biggest hobbies for many years had been contacts sports, and high level academics ( namely abstract mathematics, the physical sciences, and history ). being unusually large and reasonably intelligent i felt that i could be both an academic and athlete, but it seems that a head injury is neither conducive to a healthy mind or body and i now find myself lacking them both. >

Those of us with high intelligence and high expectations of performance tend to notice these declines much more. We often have lazy brains that function at high levels with little effort. After the injury, we need to learn new focus and memory recall skills to function at the previous high levels.

<i slur my speech constantly and spend most of my days walking around in a melancholy haze, unable to think and reason on the level of my pre concussion self. furthermore, the slow progress of my recovery has left me unable to exercise recreationally in any capacity. these two forces in tandem have made spending time with my friends and family difficult, as i feel as though i am locked in some sort of mental competition with everyone i meet.>

It takes a lot of effort and discipline to sit back and not respond. Our brains want to react but often think faster than our mouths can speak or even process speech. Learning to slow down and focus better can help. It may take more time of just sitting back and observing to learn to respond. I have to rehearse my responses before I speak up. Rehearsing makes a big difference.

<this has lead to paranoia and obsessive compulsive behaviors that have strained previously close relationships. reading has become a chore and at times uncomfortable, and watching tv has become a labor intensive task but they're all i can do to keep from going completely stir crazy. >

This is common over-stimulation and over-attending. The injured brain struggles to use multiple processing systems at the same time. Trying to read over-loads the visual processing. Watching TV combines a visual and auditory processing load. I need to wear head phones for the sound so I can follow the speaking on TV. Otherwise, my brain struggles to filter the background sounds from the speaking.

Think of this as an example of 'not able to walk and chew gum at the same time.' The way many of us overcome this is by "stopping to think." We need to shut out all sensory stimulation except for a single train of thought. Otherwise, the multiple trains of though with have a train wreck and crash your brain.

<i apologize for the long winded post and the disjointed nature thereof but this forum is my last ditch effort to cope with this problem on my own, as those close to me seem incapable of understanding what is happening to me or helping at all. ive begun to lose hope of ever regaining the old me, and have frequently pondered suicide.>

It sounds like you have the same li9mited access to good concussion help that plagues the rest of us. Many of us use nutrition to help our brains detoxify. We also need quiet rest. And then more quiet rest. Repeat that again.

< i have been prescribed amitriptyline for my concussive headache however its positive effects have been negligible. I'm just wondering ihow other people who have gone through this have addressed some of these challenges, because frankly i have no clue what to do next.

There is lots of good help here so stick with it and let us know how we can help. You are not alone.

My best to you.

[headcasey]

sorry about the block text, it didnt occur to me to leave spaces when i was writing it. thanks scott, its nice to know that there are other people who can understand what im going through. part of what has made this experience so hard for me is the lack of competent treatment by my doctors and general lack of understanding about the effects of head injury among my peers.

when i first received my injury, no one recognized that i had a concussion including myself until after the rugby match in which i was participating was concluded. even when i told my mother that i suspected that i had suffered a concussion, she told me not to self diagnose and scheduled me an appointment with my gp for the following Wednesday (four days after the fact).

to make matters worse, i had standardized testing for all of the three days of meantime between the injury and being seen by my gp, which was horribly stressful considering it was a test which i was required to pass in order to graduate highschool (i still managed to pass). when i finally went to the doctor, i ended up seeing his physicians assistant who clearly had very little experience in dealing with mtbi.

i was given very few tests and no restrictions and told that my symptoms should clear in about a week; they didn't. when i returned i was also seen by the physicians assistant who told me that what i was experiencing was not unusual and that i should be 100% better withing six weeks (still no restrictions).

four weeks on and i was still miserable, i would have good days and bad days but my recovery seemed stalled. my mother became tired of my complaints as the compounded her stress from work and caused any concerns of mine to be met with hostility.

due to my head injury, the removal of my wisdom teeth which had been scheduled for a few weeks after the match in march had been postponed for another month. although i only felt marginally better i allowed my mothers pressure and my own desire to be my own self fool me into saying that i felt that i was back to normal. i had my wisdom teeth removed and relapsed completely.

when my symptoms refused to resolve, i began to do research on the effects of concussion on the brain ( attempting to understand being my first line of defense against uncertainty). naturally what i found scared me senseless, however through this research i became acquainted with the phenomenon of pcs.

when i revealed to my mother that i was still having symptoms and that i was afraid that i had post concussive syndrome, she claimed that i was self diagnosing, eventually deciding that i was making the whole thing up to get attention. by the time internet to the doctor i had almost begun to believe that i was suffering from some form of hypochondria and that there was nothing physically wrong with me; my doctor had other ideas.

upon returning to my gp, the physicians assistant (seeing me for the fourth time in a row) decided that my headaches, insomnia, foggy memory and difficulty thinking/ concentrating, were unrelated to my head injury and were in fact the result of migraines. she then loaded me up with physicians samples if a migraine medication which had absolutely no effect.

durring my final visit to the gp, i was finally allowed to see my doctor, not because he wanted to see me or because i had asked, but because the physicians assistant had finally been stumped by my condition. my doctor came in, and within fifteen minutes decided that i was suffering from pcs.

this is the point at which i began doing what should've been done ( and what i wanted to do) in march; i went to a neurologist. he told me that everything my physicians had done leading up to my visit to him had been wrong, and i was finally put on restrictions and given accommodations at my school.

i have since had neropsychological testing and have been unable to do much symptom free, however despite my condition, i am probably going to spend most of my summer vacation traveling ( with mixed feelings). i am currently on the island of malta which would be a dream come true had it not been for my head injury, which has ruined my vacation and further strained my relationship with my mother.

again i am sorry for the long bio, but i wanted to put as much information out there as possible about what im going through in the hopes that anyone will have some suggestions for me on how to better manage given my current state of affairs.

right now i just looking for a was to stay in shape and some way of distracting myself from the injury itself.

i am also curious as to the portability of my suffering from an injury to the upper cervical spine considering the way in which i first received the concussion ( head on collision of shoulder with the side of my skull about half an inch in front of my right ear while running.

if anyone has any question comments or suggestions for me i would be very grateful

thanks allot

headcasey.

[headstrongernow]

Originally Posted by headcasey

hi all, ive been suffering from post concussive syndrome for about five months now and im almost at my wits end. my personality has changed dramatically and im seem to alternate between fits of dejection and ambivalence, and general insecurity. i suffered a low grade concussion during my rugby teams' season opener in march and haven't been the same since. i did not lose consciousness and retained full memory of the trauma, however my symptoms refuse to abate and i am terrified that they may be permanent. i have since quit all of my contact sports and have been unable to exercise seriously for months; combined with my plummeting academic performance has lead me to become severely depressed and has distanced me from my friends and family. to make matters worse i had been previously suffering from self confidence issues pertaining to my mental performance as well as a bad experience i had with a football coach pressuring me to play with a torn meniscus. my two biggest hobbies for many years had been contacts sports, and high level academics ( namely abstract mathematics, the physical sciences, and history ). being unusually large and reasonably intelligent i felt that i could be both an academic and athlete, but it seems that a head injury is neither conducive to a healthy mind or body and i now find myself lacking them both. i slur my speech constantly and spend most of my days walking around in a melancholy haze, unable to think and reason on the level of my pre concussion self. furthermore, the slow progress of my recovery has left me unable to exercise recreationally in any capacity. these two forces in tandem have made spending time with my friends and family difficult, as i feel as though i am locked in some sort of mental competition with everyone i meet.this has lead to paranoia and obsessive compulsive behaviors that have strained previously close relationships. reading has become a chore and at times uncomfortable, and watching tv has become a labor intensive task but they're all i can do to keep from going completely stir crazy. i apologize for the long winded post and the disjointed nature thereof but this forum is my last ditch effort to cope with this problem on my own, as those close to me seem incapable of understanding what is happening to me or helping at all. ive begun to lose hope of ever regaining the old me, and have frequently pondered suicide. i have been prescribed amitriptyline for my concussive headache however its positive effects have been negligible. I'm just wondering ihow other people who have gone through this have addressed some of these challenges, because frankly i have no clue what to do next.

Dear Headcasey,

Hold on, and do not despair. Everything you write is common to the experience of post-concussive syndrome. In this way, you are "normal" in that anyone suffering from a bad blow to the head as you have, faces the same challenges. The key is to do all you can to ADAPT. I am five years recovering, and for a very long time I had to put a complete end to all socializing--this cost me friends, my reputation, even family relations. There was plenty of agony along the way, but frankly, I couldn't even lift my head; I was nauseas all the time; I suffered chronic and excruciating pain and fatigue.

After about 4 1/2 years, things finally started to improve. I can do a few things now, and I am enjoying life again. Nothing like before, but I feel smarter and wiser in important ways, so there have been some advantages gained.

The thing is, you can learn to live a quieter existence that is equally fulfilling. We are lucky to live in an electronic age with so much available to us in the quiet space of our own recovery rooms. Take advantage of what is present to you now, and accept that what was your life is in the past, at least for a good while. Yes, there is a lot of grieving and a lot of loss, but you can get through all of it if you are determined.

Do have your neck and back checked as well. Treating residual pain will help your brain heal, and you will experience some relief if you seek treatment for everything in isolation. In a large way, post-concussive syndrome is a whole body disease. It most absolutely is not only "in your head."

Take the very best care you can, and go easy on yourself. No matter what your circumstance, it can always be worse. Build on the positives of what you have. Be kind to yourself. Frustration is part of the journey, so be prepared to feel all kinds of bad. You can endure it all, if you are determined to get well.

[headstrongernow]

Originally Posted by headcasey

sorry about the block text, it didnt occur to me to leave spaces when i was writing it. thanks scott, its nice to know that there are other people who can understand what im going through. part of what has made this experience so hard for me is the lack of competent treatment by my doctors and general lack of understanding about the effects of head injury among my peers.

when i first received my injury, no one recognized that i had a concussion including myself until after the rugby match in which i was participating was concluded. even when i told my mother that i suspected that i had suffered a concussion, she told me not to self diagnose and scheduled me an appointment with my gp for the following Wednesday (four days after the fact).

to make matters worse, i had standardized testing for all of the three days of meantime between the injury and being seen by my gp, which was horribly stressful considering it was a test which i was required to pass in order to graduate highschool (i still managed to pass). when i finally went to the doctor, i ended up seeing his physicians assistant who clearly had very little experience in dealing with mtbi.

i was given very few tests and no restrictions and told that my symptoms should clear in about a week; they didn't. when i returned i was also seen by the physicians assistant who told me that what i was experiencing was not unusual and that i should be 100% better withing six weeks (still no restrictions).

four weeks on and i was still miserable, i would have good days and bad days but my recovery seemed stalled. my mother became tired of my complaints as the compounded her stress from work and caused any concerns of mine to be met with hostility.

due to my head injury, the removal of my wisdom teeth which had been scheduled for a few weeks after the match in march had been postponed for another month. although i only felt marginally better i allowed my mothers pressure and my own desire to be my own self fool me into saying that i felt that i was back to normal. i had my wisdom teeth removed and relapsed completely.

when my symptoms refused to resolve, i began to do research on the effects of concussion on the brain ( attempting to understand being my first line of defense against uncertainty). naturally what i found scared me senseless, however through this research i became acquainted with the phenomenon of pcs.

when i revealed to my mother that i was still having symptoms and that i was afraid that i had post concussive syndrome, she claimed that i was self diagnosing, eventually deciding that i was making the whole thing up to get attention. by the time internet to the doctor i had almost begun to believe that i was suffering from some form of hypochondria and that there was nothing physically wrong with me; my doctor had other ideas.

upon returning to my gp, the physicians assistant (seeing me for the fourth time in a row) decided that my headaches, insomnia, foggy memory and difficulty thinking/ concentrating, were unrelated to my head injury and were in fact the result of migraines. she then loaded me up with physicians samples if a migraine medication which had absolutely no effect.

durring my final visit to the gp, i was finally allowed to see my doctor, not because he wanted to see me or because i had asked, but because the physicians assistant had finally been stumped by my condition. my doctor came in, and within fifteen minutes decided that i was suffering from pcs.

this is the point at which i began doing what should've been done ( and what i wanted to do) in march; i went to a neurologist. he told me that everything my physicians had done leading up to my visit to him had been wrong, and i was finally put on restrictions and given accommodations at my school.

i have since had neropsychological testing and have been unable to do much symptom free, however despite my condition, i am probably going to spend most of my summer vacation traveling ( with mixed feelings). i am currently on the island of malta which would be a dream come true had it not been for my head injury, which has ruined my vacation and further strained my relationship with my mother.

again i am sorry for the long bio, but i wanted to put as much information out there as possible about what im going through in the hopes that anyone will have some suggestions for me on how to better manage given my current state of affairs.

right now i just looking for a was to stay in shape and some way of distracting myself from the injury itself.

i am also curious as to the portability of my suffering from an injury to the upper cervical spine considering the way in which i first received the concussion ( head on collision of shoulder with the side of my skull about half an inch in front of my right ear while running.

if anyone has any question comments or suggestions for me i would be very grateful

thanks allot

headcasey.

Headcasey,

You sound worried and scared and frustrated and alone. That is often the way this feels. But you are very young and strong, and that is a tremendous plus toward a generally rapid and complete healing.

You don't want to overdue it physically. I am still trying to learn this lesson. After FIVE years! I am so determined to get well...but my determination gets me into a heap of lying around, unable to lift my head!!! I can't seem to take it easy, until my body makes me take it easy. It is the most frustrating experience I have ever had. My brain and body simply will not let me do what I feel I should and must do. You may wish to stay in shape, but you may have to redefine what that looks like. I can no longer run, for example, or do anything jarring such as a jumping jack. You may be better than that, but still not have the speed you once enjoyed, or something like that. Pay attention to what your body tells you, and respect what it is saying.

It will be difficult to talk with your mother, but it may be necessary to try to explain--outside of conflict and fury--what you have been experiencing. It sounds like she just wants you to be your old self, but you are getting panicky because you do not feel at all like your old self. Family conflict is part and parcel of head injury recovery. The best thing you can do, I think, is to try to express yourself when you are calm, and not when you are being questioned...

It's possible that the conversation will result in turmoil either way. A brain injured person has difficulty explaining and expressing his discomfort; so, just imagine how difficult it is for a person who has never suffered a brain injury to understand how you are feeling. The worst part is when people start telling you you are crazy. That is how they make sense of what you yourself can't easily bear or describe.

The intensity of your injury will determine what you can and cannot do. The fact that you passed your exams early on is a good sign, and you are writing reasonably clearly, which is another good sign. I would still say that you should just try to slow things down a bit...and yes, definitely have your neck checked. An orthopedic surgeon should know, but I would expect your neurologist to check it as well; at least mine did--and he treated the swelling.

Give yourself a few more months, and if you slow way down, you might begin to feel a lot better than you are now. Traveling is no fun, but then, it also gives you some opportunity solely to relax. Just sitting and breathing is healing, as is listening to nature, birds, the surf. You have suffered some trauma, and the more centered you can begin to feel, the more you can aid your recovery. That's one reason the wisdom tooth extraction was a disaster--too much additional trauma to your body. Just be calm and quiet. Don't panic. You are probably feeling panicky enough just from the concussion, so take extra special good care.

This might also mean not talking to friends and family who do not understand. You don't want to argue; that won't help you get well. Trust me, I know that for certain. Sometimes it's unavoidable because people do not understand and you want them to, but it is probably better just to write/journal, if you can.

Good luck!

[Mist8012]

Welcome Headcasey,

Just like everyone has said already we're all in the same boat! My doctor is a newly graduate and gives me strange looks when I go back to say I'm the same as before. Like I'm faking or something.

Which is what brought me here. I have another doctors appointment this afternoon. What helps me is to write all my symptoms down and just hand it to them instead of talking. I tend to forget some or most of the important symptoms they should know.

Plus my speech problems makes me not want to talk. Which is weird coz I'm usually quite the chatter box. Now I've been told I talk too quietly.

I haven't seen a neurologist yet I hope he'll suggest it today. I also hope to stay off work a bit longer.

We're all here for you!

Kelly