[bruins06]

This is my first post on this user name because I forgot the password to the other. I'm 20 attending Umass Amherst. When I was eighteen I received my fifth or so concussion, a really bad one in a Junior hockey game. My life has never been the same.

I've been reading through the recent blogs and the football player/weight lifter that has thoughts of suicide and pointlessness of life I can somewhat relate too. I seem to get worse then better, then worse again. Its the most frustrating thing in the world to have your life forever changed. Before the hit I considered myself great with words, speech and communication. That has all been stripped away from me with intense feelings of anxiety when having to speak, and on and off depression that at times can be overbearing.

One aspect that makes this suck so bad is because I sound fine to a person that doesn't understand PCS. In reality though, I battle it every single day.

Here are some of my symptoms-
-vivid, long lasting dreams when I sleep, never getting good rest.
-a weird sensation in my head, almost like a pressure. It is something that I can feel.
- always wicked tired. even after sleeping 10 hours. Feel like I need naps
-social anxiety on and off depending on my mood.
-rapid mood swings that I have absolutely no control over.
-bad depression, thoughts of suicide creep into my thoughts
-Concentration is bad when I don't have a lot of sleep


It's atleast comforting to know that people also experience this stuff not just me. It is extremely frustrating and a constant battle. I guess my question that I'll throw out there is this..everytime I seem to be getting alittle better and my mind isn't soley on this stuff, I somehow keep getting knocked lightly on the head again. I mean lightly. Can PCS really come about by the faintest blows after you've experienced it before? I'm afraid soon that the wind will bring about intense PCS symtoms for cryin' out loud. (sarcasm) I don't know people on this site seem to understand this pretty well and some are going through this stuff pretty bad with me. If anybody wants to talk about this please email me, **. I've been going through it for over two years now and know some strategies and things like that. Thanks.

[Kelly50179]

Wow, I almost feel like I wrote your post. I'm 19 and attending college as well (currently taking this semester off). I literally have the same exact symptoms as you and it's been an awful past few months since a relapse in December. I feel your frustration. It's tough, especially on those days where every minute of the day is a battle.

I understand exactly what you mean when you say it sucks that you appear fine to people who don't understand PCS. In reality we are not fine--far from it. Luckily I have people who care and although they can't relate, they at least make an effort to understand what I'm going through.. I hope you have found the same. You sure do find out who your friends are..

PCS can be an extremely hard thing to go, especially with college and all the stress involved. Just know that if you need someone you can relate to, I'm willing to talk. You should not have to silently suffer through all of this.

There are a few people on this forum that seem to know a good bit about PCS and will probably be able to answer your question better than me. From the posts I've read and from my experience, I would presume that getting knocked lightly can exacerbate the PCS symptoms again. I "relapsed" in December after running and working out again although I felt 100%. I use "relapse" for lack of a better word because it felt like I had received another concussion and I'm still recovering from it.

It's taken me soooooo long to write this post because I'm having so much trouble recalling words. Anyway, my best wishes to you. What always helps me is constantly putting things in perspective. I know that as much as this sucks, it has certainly made me a better person. I appreciate those few moments of happiness that I'm occasionally blessed with more than I would have been able to before.

[Mark in Idaho]

bruins06,

Your struggle with mild impacts is not uncommon. They are called sub-concussive impacts. You may think you have only had 5 concussions but it is very likely you have had many more. You were just used to shaking them off. Plus, you have likely had hundreds of sub-concussive impacts.

The sub-concussive impacts can be the most dangerous because you don't feel any symptoms so you don't even take a moments break from the action. A check into the boards is likely a sub-concussive impact.

You current condition is called Multiple Impact Syndrome. It is when the brain has been injured so many times that is has lost much of its ability to recover or rewire. The strained axons get strained again and finally become seriously dysfunctional. Axons take a long time to heal because they make connections with a hit or miss protocol. Sort of a trial and error effort to connect. If the connection is refused, they retract and try connecting to a different dendrite/axon/neuron.

Have you downloaded the TBI Survival Guide yet? It will help you explain your condition to others. You can download it at www.tbiguide.com

You also may be experiencing some sleep apnea problems. The brain stem can be injured in a concussion. It will effect your autonomic nervous system that maintains your breathing. Your sleepiness may be just PCS or it may be caused by a failure to breath properly while sleeping. It can cause stressful dreams. It will cause you to be sleepy during the day. If someone can observe you sleeping, they may be able to tell if you stop breathing. I have stopped breathing as many as 16 times in a hour.

If they notice breathing irregularities, you can tell your doctor and ask for a take home sleep test. Then the doctor can request a full 'in the sleep lab' sleep test.

I have the fast mood swings and manage them by avoiding the triggers that cause them to change quickly. Learning to recognize your triggers will help you minimize your exposure to those triggers.

The strange pressure in your head sounds like what I can a 'mud head ache.' I get a stuffed head feeling with groggy thought processes. It is like my brain is stuck in the mud. Does this sound familiar?

As you commented, there are plenty of us who understand you condition. Keep in touch. Life does go on and there are ways to live life fully once you learn to work with the new you.

My best to you.

[survivor95]

UI'm glad to see others feel what this can impact on the very thing that makes one.....themself. I no longer feel I am the man I was before I fell. I battled cancer 16 years ago. It was stage 3 with a 50 50 chance. Atleast with cancer you make it or you don't. I'm grateful I made it. I never gave up. I don't know what to write to explain how much more devasting this pcs is. It is scary now after 3 months of crickets in my ears. My walking has improved. I feel better home alone than anywhere else. The healthcare here doesn't understand. I miss my ex girlfriend, she called me almost everyday for 2 months but i just handle any pressures or pleasure. I go to my doctor for sleeping pilss and he sends in the wrong meds so i'm stuck with the over counters that make you even mor draugy than you are when you get up. I have no money and they talk of stopping the workers comp they give me..that just make me all the better.My hands and feet get cold with my hands sometime go numbly and in about an hour they feel super hot. The headaches are almost constant but I find they aren't always the same. Sometimes its on the side then at the back. My eyes get sore, there was a point last month where they pained so bad i thought they were sinking into my skull sockets. I get a weird sensation at the bridge of my nose that seems like it extends down to my front teeth. This happens when my heart is beating hard. Not fast just hard. It feels like my nose is prmaturing growing faster. I wonder if there are hormones gone bad or not enough of something being made. The weird type of dizzy, strange feeling in my head is just that very weird. I find my eyes are starting to hurt more right now and my head. I think when i overuse my brain writing/thinking makes things worse.

[Soccergal]

I too keep getting "relapses" which can be caused from a slight bump, running, not enough rest or stress. I would suggest low-impact activities for the next long long while.

Like you, Bruins06, I too considered myself, "great with words, speech and communication." In fact, my whole career and identity was based on that and the ability to juggle many projects. It is very frustrating to lose that ability. But I do believe at least some of it will come back.

If you haven't already done so, you should talk to your doctor about your depression. Expecially if you are having any suicidal thoughts. I'm on anti-depressants which have helped my depression a fair bit.

Wishing you well.

[Margarite]

I have very similar symptoms as you and I have counted at least 7 concussions, 7 times my head has been bonked or jostled and the symptoms got worse, since the original concussion 2 years ago.

My theory is that a brain sits in a nice stable environment surrounded on top by jello like stuff. If you have ever played with jello with lots of gelatin in it, you know it is pretty stable stuff until you break it. After that the jello can never "heal" completely, it is always weakened and next time you jostle the jello it breaks even more.

So, if the jello around our brains has been broken seriously once, never again will it be the same and depending on how much gelatin was in there to begin with and how bad the break was the first time is what effects how quickly we recover and how easily we become re-injured.

This is just my way of thinking about it, I am a junior in college and my first concussion was freshman year. I have been determined to show myself and my family and friends that I can still live life and can still get through college. My grades went down significantly, I am always tired and sick, I can't do allot of stuff my friends want me to do, but I am learning to live again.

I am a stronger person because of the way I have pushed myself far beyond what I thought I could do. I know myself better than I would have otherwise, and I have some awesome friends who don't mind watching movies instead of hiking or who don't mind a quiet atmosphere instead of a dance club/bar...

Sure life has changed, sure it really stinks to have PCS, but I have learned tons. While I wouldn't do it all over again, since I don't have a choice, I am trying to take it for all it is worth.

Good Luck to All!
Margarite

[rydellen]

Originally Posted by Margarite

I have very similar symptoms as you and I have counted at least 7 concussions, 7 times my head has been bonked or jostled and the symptoms got worse, since the original concussion 2 years ago.

My theory is that a brain sits in a nice stable environment surrounded on top by jello like stuff. If you have ever played with jello with lots of gelatin in it, you know it is pretty stable stuff until you break it. After that the jello can never "heal" completely, it is always weakened and next time you jostle the jello it breaks even more.

So, if the jello around our brains has been broken seriously once, never again will it be the same and depending on how much gelatin was in there to begin with and how bad the break was the first time is what effects how quickly we recover and how easily we become re-injured.

This is just my way of thinking about it, I am a junior in college and my first concussion was freshman year. I have been determined to show myself and my family and friends that I can still live life and can still get through college. My grades went down significantly, I am always tired and sick, I can't do allot of stuff my friends want me to do, but I am learning to live again.

I am a stronger person because of the way I have pushed myself far beyond what I thought I could do. I know myself better than I would have otherwise, and I have some awesome friends who don't mind watching movies instead of hiking or who don't mind a quiet atmosphere instead of a dance club/bar...

Sure life has changed, sure it really stinks to have PCS, but I have learned tons. While I wouldn't do it all over again, since I don't have a choice, I am trying to take it for all it is worth.

Good Luck to All!
Margarite

Thank you for your positive view on PCS! I try hard myself to think the way you are!

[shezbut]

(((bruins06)))

Yes, I can understand and relate to what you're going through.

I fought severe depression, with suicidal ideation, for a few years after my TBI. It did take a lot of work, in therapy and in general life, to make it through. Definitely taking one day at a time helped me.

It may sound corny (it did to me), but one moment at a time is an even better way to put it. Try not to kick yourself for the past. Mistakes you made. Injuries you have suffered. It is very hard not to kick yourself, I know. Simply focusing on what you are doing in every moment helps lighten the mood a lot though. And that is something that you really need to do for yourself.

You have every right and reason to be sad, mad, confused, etc. It does suck! But that doesn't mean that there are not any enjoyable things left to do in this world. You just need to change your perspective a bit.

What truly matters to you now?

Have you changed goals since the injuries? Maybe that needs to be thought about and worked upon with some help. The help of someone who is unrelated to the issues completely, a therapist. Do let them know about your memory troubles in the beginning, to avoid frustration.

I wish you the best, bruins06. I hope that you get some relief soon!

Shez