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-   -   Has anyone had post concussion syndrome? (https://www.neurotalk.org/headache/636-post-concussion-syndrome.html)

endonurse 08-30-2011 07:31 AM

Am I going crazy? or can anyone relate?
 
[QUOTE=owen;87464]Im so glad i found this place. Heres my PCS story.

I was at a paintball tournament in florida. It was two days before our team was scheduled to play. We were walking through the vendor area when a freak gust of wind blew one of the vendors balloons, about 10'12 feet in diameter, tethered by rope maybe 50 feet in feet in the air, it came down directly on my head. I didnt see it coming, i had no idea what had happened untill someone told me.......



I'm in a very similar situation right now. I am an RN. At work I was elbowed to the right side of the head twice by a semi-sedated patient during a procedure. I had my jaw knocked out of place which has now been causing pain as well as constant appointments to get it put back into place. I now have a constant clicking when I chew and and achy jaw muscle. But my biggest problem has been with my head. This happened almost 4 months ago. My symptoms are decreasing but still remain. I have been off work now for about 3 months because of this which is causing extra stress on the situation. The only lucky part of this whole thing was that it happened at work so I am able to continue getting paid through workers compensation.
Initially, I saw an ER doctor who just wanted to make sure that my jaw wasn't broken, it wasn't so she said just take Ibuprofen for the pain, so I did. Then about a week later the headaches really started to get worse, so I went to a walk in clinic and saw a GP there. He was very understanding and was sympathetic because he apparently remembered me as he was recently a patient of mine. He gave me a couple of prescriptions (muscle relaxant and anti inflammatory) and told me to call in sick if I was having a bad day. He also said to get an x-ray of my jaw if the pain didn't decrease in the next 2 weeks. 2 weeks past and things just got worse. I went to the dentist and got an x-ray of my jaw. The joint was damaged causing my jaw to slide in and out of place but there is nothing I can do except to take NSAIDs. I continued on as best as I could for nearly another week. At this point I could barely make it through the day; Severe headaches, nausea, sensitivity to light, jaw pain, dizziness, light headed, neck pain, cold sweats, fatigue, etc. My husband convinced my to see a chiropractor thinking that my neck was knocked out of place and this is what is causing the headaches. So I get an appointment at my lunch break...get there in a blur, in a cold sweat, feeling almost 'drunk'...he looks at me and says, "call your employer, you're not going back." Luckily this chiropractor has worked with many people with head injuries. He says my pupils are unevenly dilated (something that I had not noticed other than people telling me "your eyes look funny")
This began my daily visits to the chiropractor - not in the way you would think of a chiropractor though. Not a lot of cracking - more visual stimulation and neurological stuff. So, I went to him 6 days a week for about 6 weeks. I was then referred to a neurologist while still seeing the chiropractor about 4 times/week. The neurologist did the usual; follow my finger, look that way, back at me, up, down, reflexes, etc. then sent me to an EENT to rule out inner ear problems. The EENT said it was ridiculous that I was sent to him, like it was a waste of his time and said he couldn't help me. The neurologist said that his assessment of me was normal but would send me for an MRI to rule out anything more serious. (Still waiting for the MRI - in 2 weeks). Still seeing the chiropractor (now only 2 - 3 times/week), still having symptoms - although I am having more good days now than I was about 2 months ago. I have been keeping a symptom journal to track my progress, it seems to help when seeing a new health care provider as the days seem to run together and I cannot remember how I was feeling "two weeks ago Wednesday" I have been keeping this journal in a microsoft word document which is now 22 pages long...but at least the info is there.
The neurologist told me to stay away from over the counter pain killers as I may be getting a rebound headache from overuse of these medications. But I was given nothing instead of these medications. The over the counter stuff didn't help a whole lot anyway, sometimes not at all, others only knocking it down 1 peg or so. I have only taken Advil or Excedrin a couple times in the past 5 weeks. Now using heat and ice packs for pain, keeping blinds closed, and noise to a minimum.
This is the most frustrating thing ever!! At least when you have a broken bone, people can see it, and you can track your progress and see the healing. With your head, it is far more difficult for others to understand as well as more difficult to explain to those who have never experienced this before. It's hard when the only treatment that has been recommended is "time" I have also been told to take magnesium which may be a coincidence but I find that it has been taking the edge off a little (after about 2 weeks of 500 mg/day)
I have been having difficulty describing my symptoms to people but my best shot is:
"In a fuzzy, lightheaded blur. Lights seem brighter, voices echo, feel "fuzzy" and vision is kind of blurred and then focuses into clarity while you hear your heartbeat in your head and each beat brings with it a stabbing pain and a wave of nausea. All the while your head is trapped in a vice. At times it is like the floor is melting under your feet as you walk or like walking on a sponge - the floor doesn't seem stable. A wave a dizziness can hit at any time literally knocking you into a wall or doorway (if you are lucky enough to catch yourself). It's like a bad drunk but worse!"
My husband has noticed irritability and personality changes as well. All of the literature suggests that about 90% of people should be back to normal within 3 months. This makes me feel like I must be going crazy because I have been feeling like this for over 4 months. Some say it can last years in a minority of people...so what do you do in the meantime? a year is a long time to feel like this! I think I might go crazy if this continues much longer.
Can anyone relate? or am I really crazy?

Lara 09-01-2011 06:38 PM

Welcome to the NeuroTalk Support Groups.

Just wanted to let you know that there is a Traumatic Brain Injury and Post Concussion Syndrome Forum here as well. It's pretty busy and there is useful information and lots of very helpful discussions. It's helped me heaps over the years.

Just click on the link and maybe repost over there if you want.

rosebower 12-02-2011 12:15 PM

Quote:

Originally Posted by owen (Post 88526)
I have good days and bad days. Some days im just tired of trying to function like this. Other days ive got more of a fighting spirit. I have trouble forgetting what im doing. I have extreme trouble formulating a plan. Like im going to do this, and then this, and then this. Ive adapted to just doing things as i think of them.

Im extremely irritable. Sometimes, just being touched drives makes me almost lose it. Ive started snapping at people. Things not normal for me at all. Im a bitter person now. The weirdest thing is that ive been having extremely premiscuous feelings. Now im a loyal guy,ive never cheated, so i dont understand where they are coming from. I havent acted on them, nor do i intend to. I dont know if im trying to fill this emotional void with sex? It causes me a great amount of distress. Should i seek a psychiatrist to sort this out?

Owen, I got my concussion one month ago and the doc in the ER sent me home that day and said go ahead and drive myself to school tomorrow, didn't give me any kind of CAT scan, even tho I need 3 staples. 3 days later my PCS set in and I had to have a CAT scan uninsured, because my insurance ran out THE DAY AFTER I got hit, AND the ER doc knew that on the day of! I was ticked and I'm fighting the bill with a request for FreeCare since it was her negligence that meant I had to get the scan uninsured anyway. But I SOOO sympathize with the trouble to form plans and the forgetfulness. It's hard to think straight when your head hurts that much, I'm no doctor but it's obvious that the symptoms are terribly distracting. I had to do my clinical skills testing for a CNA course taking care of nursing home patients while this was going on, doing heavy lifting and planning how to do safe care in a timely manner. HA HA, as you can probably imagine it was 3 days of HELL and I barely passed a course that I should have breezed through.
From all that I've gathered, there is indeed no better treatment than as much good sleep as you can manage, counseling for the emotional trauma, and I've seen references to biofeedback which I'm going to explore. I have vertigo, an anxiety disorder, and ADD anyway so I maybe should have looked into that before. I've started drawing again- just picking up a pencil and doodling images that make me feel good. Roses, chickadees, stars and planets, horses eyes, whatever. I found that I was pleased with how they turned out because I was drawing something I loved that I already knew well. And I cry a lot. Even if something makes me laugh, the laugh usually turns into crying. I know that's part of it too, so I'm learning to be alright with it for now.
AND, when you mentioned feeling promiscuous, that rang a bell because I've been longing for the past month to be held again by my ex from 5 years ago, at the same time that I'm feeling like giving in to the advances of this nice guy who I'm never been attracted to, just to be touched and held. I'm fighting it tho, because I'm pretty sure if it weren't for this I wouldn't feel that way, but I do think it's the trauma, emotional or physical, that makes one feel more in need of physical affection. I haven't heard it from anyone else but I do think it's an effect of the injury in some way.

EJ1955 12-06-2011 01:48 PM

Crazy Headaches
 
Owen, I slipped and fell hitting my head on tiled cement floor. It didn't seem like a big deal but I was unconscious for 5-10 minutes and have been having headaches, blurry vision, ringing in my ears, feeling very tired/sad/no energy or desire to do much of anything. Have been seeing a neurologist and has me on indomethacin, oxycodone, flexeril, with no help for headaches. Sent for Cat scan and MRI... all negative. Haven't been to work and generally feel very bad. Not sure where to go from here and it has only been a month.

Dan in Japan 12-06-2011 11:21 PM

Srry if im doing this wrong.
 
Hello, this is the first time ive posted on something like this. I wasnt sure how to create a new post , so sorry i am just adding to this.

I have been diagnosed with post concussion syndrome. I guess I want to know, will it go away? Its destroyed me, people who care for me and my life.

I live in Japan and went over to China for a couple of weeks just after the earthquake.

That was my first mistake

My second mistake was renting a scooter, which I crashed when a man walked out into the road. I pulled the brakes, went over the handle bars and landed head first.

The helmet broke. As soon as it happened I instinctively stood up to drag my scooter to the side of the rode. As I stood up and started to do that, I went dizzy and collapsed onto the floor, my vision went and my friend had to try hard to keep me awake. I kept going in and out of blackness and felt really ill.

I always downplayed the story to people , because I didn’t want those who cared about me to worry.

I was taken to a little hospital in the middle of nowhere the doctors didn’t care about my head but more about the cuts and scrapes on me.

I took myself home on the same bike and apart from feeling achy and sore , I felt ok.

I was a little worried, so back in the bigger town that night I took myself to a real hospital where they gave me a CAT scan and told me I was concussed. The doctor said he saw no problems on the scan.

I went back to Japan

When my girlfriend opened the door to me, the first thing she said is “your different”, even before I said what happened.

Between then and now, my girlfriend of 5 years who I thought I would marry left me.
Not because of what I did after the concussion, but I guess it was how I dealt with it.
And after my mother recently visited me I realized I could not really remember what we had done while she was here. It just seems blurry and difficult to piece together. The same as the prior months after my girlfriend left to another country, I thought It was just my stress or the fact I was ignoring important decisions I had to make.

But anyway, gradually I pieced together all these clues and read an article on the bbc abou concussion and it lead me to finding out about PCS..so I ended up in a doctors room, and now, ive been diagnosed with it.

I find it hard to grasp time and my memory of weeks and months seems to blur together into one big mess. I find myself switching between being emotionless or too emotional for no reason. I have sharp headaches often. I cant think in a rational way or connect with anyone in speech. My mother told m when she visited that I seem detached and really irritable.

I recently suffered from vertigo a few times which the doctor originally told me was an ear infection side effect, but another doctor said I have no ear infection. So I guess that was a result of PCS

The list of things goes on.

I guess, I just want to know if it will go.

I really think if I didn’t have this, my life would be different right now. It happened at a time when I needed to be myself. Its almost as if im looking at myself compared to how I was, I see those differences and understand why they are there. But I still cant pull myself together.

Does anyone have advice, knowledge?

As im in Japan its hard to get an easy honest answer in English.

Chemar 12-07-2011 09:03 AM

We have a forum here for Post Concussion Syndrome where others may be able to provide more information to help you
here is the link to it
http://neurotalk.psychcentral.com/forum92.html

brainhurts 12-07-2011 03:37 PM

Afraid
 
I'm 15, and sustained a signifigant concussion from cheerleading. I have PCS, and it sucks. The headaches are unspeakable, its hard to sleep, my emotions are all screwed up, I have random laughing/crying fits, I'm depressed and irritable, I have no interest in doing anything. I used to be an ambitious kid who loved life and other people, I was down to earth and had my emotions in check. I was well balanced and had a good outlook on things. Now I don't. I'm anxious over little things, and not very social. Its been a month today since the accident, and I'm still having issues and missing school. This year is so important (sophmore year) and I don't want to fall behind. Teachers don't understand because I can talk and walk and function. Nobody understands, and people think I'm overeacting or faking it because I can hold a conversation. I'm so afraid things are not going to be ok. So afraid. I used to be an honors class kid, I'm afraid I won't be. I don't know what to do.

hockeyplayer99 12-14-2011 08:43 PM

To everyone out there suffering from PCS:
I know. It sucks. I've had 2 major concussions during a college and pro hockey career. When I was in college was the worst. Everyone was going to class and hanging out and gonig to parites and playing sports but I could bearly make it to the dining hall because my head was ringing and even the slightest light was annoying. I was up for deans list at a top 10 college and my grades fell off becasue I couldn't study. I spent hours reading blogs just like this, hoping for some ray of light, looking for someone that had been through this and resumed some normal style of life. That was 5 years ago.

After each concussion I basically disappeared from life. I slept pretty much non-stop. I went from 4% bodyfat to 25lbs overweight. Felt depresssed. Couldn't get a date and wouldn't have wanted it if I had one. Didn't care about anything and had a reactive mood when I did. I lost friends (people that have never experienced PCS will not get what you're going through) and my famliy was totally freaked out.

But, with time, it passed. Everyone is different. One kid on my team was back to normal after a week. IT TOOK ME A YEAR to recover from my last concussion. It may take shorter or longer. I've spoken with many athleates and this is the general consensus. Unless you have a cracked skull or internal bleeding, the docs can't really tell you anything difinitive except the more you "rush" your return to normal life, the more likely you'll be to perminant damage. DO NOT DRINK ALCOHOL. You just gotta know the next few months are going to suck and you need to rest.

Eventually you learn to manage it and ease back into life. Cognative therapy helps. Consistant healthy diet, very light activity, exposure to outdoors, and structured sched will also help. Rest, drink H20. Literally, if you're not peeing clear, you need to drink more H20.

I have some perminant damage (floaters in vision and more prone to "ADD") but I healed and now I work an extrememly high stress job and I run and work out a lot (back down to 8% bodyfat). Whatever your symptoms are, you will learn to deal with it. Once you accept your current need for healing and stop feeling frustrated about missing out on life, you'll be on the road to recovery.

This too shall pass.

:)

gunwolf 01-31-2012 06:17 PM

got my first concussion at 5, knocked out cold for 4 hours. I have had at least ten other concussions in my lifetime. some were while playing sports, but most were while working construction. I suffer from Migraines, and at 45 my wife kids have told me I am showing signs of dimensia...don't know how it's related but after all those lumps I guess anything is possible. I recently had cervical surgery which is most likely connected with my multiple head injuries.

jinga 01-31-2012 07:59 PM

Hi Gunwolf,

Did you go throug thr neuro testing? I had MVA this summer and continued to work for 2 months - before I ended back in ER - My doc and Neurologist DX PCS - dealing with daily headaches - they were very severe but with med they are duller but tend to get more problematic as day goes on or if I have a high stressor or agitation induced outburst. My headaches tend to be duller - I know alot of people and neuro asked if they pulse - wondered if you could describe your head pain. I never had headaches hardly ever so I cannot relate tot the migraine type headache

gunwolf 01-31-2012 08:58 PM

MY headaches come on with a sensitivity to light and smell, yes smell! I know a migraine is coming when I get hyper sensitive smell. this happens about an hour or so before the onset of the throbbing pain. about a half hour before I feel like I am fuzzy, not dizzy but really fuzzy. your lucky you don't get headaches. Mine make me have almost a virtigo and make me vomit. they only last for a few hours but I get them a few times a month.
my brain scan showed nothing out of the ordinary, and the neurologist attributed my headaches to my cervical spine.
one symptom I have from my post concussion syndrome that baffles my doctors is the sudden electric like shock I get in the back of my head that almost knocks me out. this happens only after I lightly bump my head or strain my self.
the only med that I take for my migraines is loritab. they work great in taking the edge off...I only have to take one when I feel it coming on.

jinga 01-31-2012 10:00 PM

Quote:

Originally Posted by gunwolf (Post 847056)
MY headaches come on with a sensitivity to light and smell, yes smell! I know a migraine is coming when I get hyper sensitive smell. this happens about an hour or so before the onset of the throbbing pain. about a half hour before I feel like I am fuzzy, not dizzy but really fuzzy. your lucky you don't get headaches. Mine make me have almost a virtigo and make me vomit. they only last for a few hours but I get them a few times a month.
my brain scan showed nothing out of the ordinary, and the neurologist attributed my headaches to my cervical spine.
one symptom I have from my post concussion syndrome that baffles my doctors is the sudden electric like shock I get in the back of my head that almost knocks me out. this happens only after I lightly bump my head or strain my self.
the only med that I take for my migraines is loritab. they work great in taking the edge off...I only have to take one when I feel it coming on.

Oh, I get headaches - they just do not have a throbbing component or very noticeable. The feels as though they are deeper in side my skull but ache toward forehead

PCPZ33 02-28-2012 10:48 PM

Help me.
 
Hello my name is "Steeve", I am almost 17 years old, in grade 11 and was previously a strong student athlete. But today I feel I am a shadow of everything I once was.

I have played hockey all my life and recently played football.


My concussion history is as follows:

11 YO: I took a hit in which someone was shouldering my head to the boards. I suffered immediate vison, dizziness and balance symptoms but had no loss of conciousness. After the game I proceeded to feel incredibley nauziaed and really crapy for lack of a better word. Already the next morrning I seemed to feel way better then the night before and within a week or two I was playing AAA hockey once again. This had no affect on my acedemics.

13 YO: I took an open ice hit in which I recived an elbow to my head. (Seach up Nickalas Backstom, it's very similar) This concussion was almost completely identical to the first one and even though the first night was terrible, within about 2 weeks I had fully recovered. I do remeber that for this one, the next few days proceeding I had pretty strong painswhen it came to moving my head. (a little more than the first time around)

14 YO: I was hit into the boards by two people. I was knocked out and still to this day do not have complete memory of the event. (about 3 seconds or so) I was out for maybe 30 seconds and I remember I had my eyes opened and all I could see was black. I also had extreme weakness in my rams and legs as I couldn't get up for this breif moment. I then got up and could see and sat off for the rest of the game. This healed really fast and while I had flashy vison (blured) I wasn't nausiaded, I was just really "out of character" (just acting wierd). Docters told me that this wasn't a concussion but a "head injury". I'll let you guys decide if it should count.

16 YO, late oct 2012: I was tackled in football by a 200+ lbs nose takle nad bieng a 145lbs RB it really killed. The tackle got me extended upwards and backpedaling so when I finally went down there was a large amount of snaping backwards in neck (whiplash) and all the impact was prettymuch just on the back of my head. Unlike the rest, this one hasn't cleared yet. I had no nauisa so I tricked myself into thinking I was ok. HUGE MISTAKE. I took part in 1 hockey tryout, a couple street hockey games and moving all of the crap out of my dads place


I think I have PCS and I am 4 months into recovery. I don't feel very much better day to day. I get headaches, am sensitive to light and sound, I can't concentrate and my vision is really wierd.

My vison is like when you wake up in the middle of the night to use the bathroom. When it's dark and your eyes have become adapted you can see but everything is really flashy. I have this all day and every day. I also have a slight vertical double image when I look at things. (Esspecially with lights or anything white)

I am getting a CAT scan tomorrow after at least a month of waiting. I have had a neck Xray that is yet to be analyzed. I am still on wait for a neurologist. I have had massage for my neck any yet it might be fractured. I feel extemely sad and I almost fear going to school now. I used to be a 90 average student and now I am getting 70s with headaches throughout my school work. Are things getting better and I just can't notice? Will I ever get better? I would just really like to hear what someone else thinks. Thanks.

Any advice is gladly appericaited.

xnicx888 03-05-2012 05:14 PM

Quote:

Originally Posted by PCPZ33 (Post 856482)
Hello my name is "Steeve", I am almost 17 years old, in grade 11 and was previously a strong student athlete. But today I feel I am a shadow of everything I once was.

I have played hockey all my life and recently played football.


My concussion history is as follows:

11 YO: I took a hit in which someone was shouldering my head to the boards. I suffered immediate vison, dizziness and balance symptoms but had no loss of conciousness. After the game I proceeded to feel incredibley nauziaed and really crapy for lack of a better word. Already the next morrning I seemed to feel way better then the night before and within a week or two I was playing AAA hockey once again. This had no affect on my acedemics.

13 YO: I took an open ice hit in which I recived an elbow to my head. (Seach up Nickalas Backstom, it's very similar) This concussion was almost completely identical to the first one and even though the first night was terrible, within about 2 weeks I had fully recovered. I do remeber that for this one, the next few days proceeding I had pretty strong painswhen it came to moving my head. (a little more than the first time around)

14 YO: I was hit into the boards by two people. I was knocked out and still to this day do not have complete memory of the event. (about 3 seconds or so) I was out for maybe 30 seconds and I remember I had my eyes opened and all I could see was black. I also had extreme weakness in my rams and legs as I couldn't get up for this breif moment. I then got up and could see and sat off for the rest of the game. This healed really fast and while I had flashy vison (blured) I wasn't nausiaded, I was just really "out of character" (just acting wierd). Docters told me that this wasn't a concussion but a "head injury". I'll let you guys decide if it should count.

16 YO, late oct 2012: I was tackled in football by a 200+ lbs nose takle nad bieng a 145lbs RB it really killed. The tackle got me extended upwards and backpedaling so when I finally went down there was a large amount of snaping backwards in neck (whiplash) and all the impact was prettymuch just on the back of my head. Unlike the rest, this one hasn't cleared yet. I had no nauisa so I tricked myself into thinking I was ok. HUGE MISTAKE. I took part in 1 hockey tryout, a couple street hockey games and moving all of the crap out of my dads place


I think I have PCS and I am 4 months into recovery. I don't feel very much better day to day. I get headaches, am sensitive to light and sound, I can't concentrate and my vision is really wierd.

My vison is like when you wake up in the middle of the night to use the bathroom. When it's dark and your eyes have become adapted you can see but everything is really flashy. I have this all day and every day. I also have a slight vertical double image when I look at things. (Esspecially with lights or anything white)

I am getting a CAT scan tomorrow after at least a month of waiting. I have had a neck Xray that is yet to be analyzed. I am still on wait for a neurologist. I have had massage for my neck any yet it might be fractured. I feel extemely sad and I almost fear going to school now. I used to be a 90 average student and now I am getting 70s with headaches throughout my school work. Are things getting better and I just can't notice? Will I ever get better? I would just really like to hear what someone else thinks. Thanks.

Any advice is gladly appericaited.

Im 16 and I wrestle and got into a few fights all around the same time period. I never went unconscious but I had two concussions. I was feeling out of it for a bit but im better now. a MAIN concern is that my ears never stop having a faint ringing and my vision is really messed up. I see stars 24/7 and it never goes away. its like my eyes are flashing or I describe it as a million moving pixels and i get floaters. I cant tell if this is PCS or permanent. I was just wondering if you could describe your vision more clear to see if ours are similar. I fear itll never go away. its been 9 months off and on. I tried wrestling again and I drink sometimes and from then on it hasnt gone away.

obalit 03-05-2012 05:39 PM

month and a half
 
Hi,
I'm 19 right now.
So on Jan 16th I was playing indoor soccer and i got pushed to the wall and hit the wall pretty good. I didn't feel any pain at the time. A week later I woke up but I was someone else lol. what I mean is it wasn't me, I didn't feel myself. So I thought maybe i'm sick and let it go. I kept on playing soccer and refereeing. I didn't take it serious until I passed a one week mark then I went to ER(emergency room) and they did a cat scan but everything was fine. Doctor told me I will be okay in 3 weeks. So now it has been a month and a half and i'm still the same. I don't feel myself at all. I can't study. I feel like there is a block in my head. To mention I failed every test in college so I dropped all my classes with a (w). Im seeing a neurologist on the 15th of march. My short memory sucks ***. I cant sleep. I'm not myself at all. I'm confused most of the time.

Please help me if you have any experience what so ever.

Thank you

Jomar 03-05-2012 05:58 PM

Quote:

Originally Posted by Jo*mar (Post 777947)
For the newer members that are coming to this thread we have a forum called -

Traumatic Brain Injury and Post Concussion Syndrome
For traumatic brain injury (TBI) and post concussion syndrome (PCS).
here is the link to it -
http://neurotalk.psychcentral.com/forum92.html

You might want to place a copy of your post on that forum also.


For the new members seeking Post Concussion information.

cbrown14 04-19-2012 06:13 PM

Quote:

Originally Posted by gunwolf (Post 847056)
MY headaches come on with a sensitivity to light and smell, yes smell! I know a migraine is coming when I get hyper sensitive smell. this happens about an hour or so before the onset of the throbbing pain. about a half hour before I feel like I am fuzzy, not dizzy but really fuzzy. your lucky you don't get headaches. Mine make me have almost a virtigo and make me vomit. they only last for a few hours but I get them a few times a month.
my brain scan showed nothing out of the ordinary, and the neurologist attributed my headaches to my cervical spine.
one symptom I have from my post concussion syndrome that baffles my doctors is the sudden electric like shock I get in the back of my head that almost knocks me out. this happens only after I lightly bump my head or strain my self.
the only med that I take for my migraines is loritab. they work great in taking the edge off...I only have to take one when I feel it coming on.

I get those same shocks only mine are on the side of my head. They're horrible and nobody understands when I try to explain them. Have you found anything out about them?

Margarite 05-22-2012 10:10 PM

check out this forum http://neurotalk.psychcentral.com/forum92.html

miltmay33 07-31-2012 10:56 PM

forum for pcs
 
Quote:

Originally Posted by Dmom3005 (Post 113902)
Just so you both know we have a forum specifically for this issue.

And its a very good one.

Donna

what is that forum called donna?

Jomar 07-31-2012 11:33 PM

Quote:

Originally Posted by Jo*mar (Post 777947)
For the newer members that are coming to this thread we have a forum called -
Traumatic Brain Injury and Post Concussion Syndrome
For traumatic brain injury (TBI) and post concussion syndrome (PCS).
here is the link to it -
http://neurotalk.psychcentral.com/forum92.html

You might want to place a copy of your post on that forum also.


bumping up for new members.

silver14 08-01-2012 12:07 AM

Quote:

Originally Posted by Nikko (Post 4523)
I have post concussion syndrome, from being assaulted by my husband, he hit me in the head with a beer bottle at the pool, then my chair went over and I hit my head on the cement.

Since, I had a X-ray of my neck because I have a 2 level fusion with plate and screws, and a cat scan. That was right away, and this syndrome occurs later. Plus X-rays don't show what a MRI will.

The headaches are horrid!!!!!!!!!!!!!!!!!!!!!!!!! Besides other factors.

My PCP is now ordering a MRI of my head and neck.

I was just wondering if anyone has been through this type of syndrome or knows of anyone.

Thanks, Nikko

Sorry to hear about your situation, but in answer to your question, my son had post concussion syndrome after a car accident. Of what I could see, he was in horrific pain. He spent the night at a friends the day of the accident and called me in a panic at 1 am due to the pain. He was put on vicoden and bed rest for three weeks. It was hard for him just to stand up and go to the bathroom. The severe headache slowly subsided, but he would periodically have migraine headaches from this for about six months after the accident. The good news for him was that it did eventually completely subsided. But it takes time.

tbimommom 10-10-2012 09:21 PM

2years 9months and counting
 
I have PCS 2YRS 9MOS AND COUNTING........ headaches are controlled by topomax and way less frequent. Fog, confusion and slow processing are the new normal. Fatigue and brain drain out of no where. Flat emotions where delight used to be. The new me, hardto explain, learning day by day, sometimes moment by moment............

JNC3 11-24-2012 05:50 PM

11 months and counting
 
New to this website and thought I would tell my story. This is an exhaustive account of my battle with what I now know to be PCS, but for months believed to be severe insomnia, depression, anxiety, and mononucleosis. My hopes in writing this is that someone out there can relate and draw a glimmer of hope from my story. Nothing is permanent, and I hope my account can serve as testament to that.

After a minor concussion during a squash game December 2011, I was left feeling fairly miserable for a number of weeks. I was able to move my exams and write them at my convenience. I was a third year University student with diagnosed ADD but was otherwise completely healthy. I recovered fully by January and thought nothing of the incident.

In late April 2012, my health started to rapidly decline. At the time, I was studying in Sweden and had no conception of my access to the Swedish healthcare system. I felt dizzy, confused, extremely sensitive to light, slightly depressed, and developed a low tolerance to alcohol. My short term memory all but faded. I couldn't sleep and was constantly exhausted throughout the day. I credited the symptoms to the constant Swedish sunlight, rising at 3am and setting at 11p, causing my minor insomnia. I was confident that my homecoming to the States would cure me once I could sleep again.

I started a new job immediately upon returning from my Exchange program. I didn't give myself enough time to recover from jetlag and started working roughly 8a-11p daily, and was sometimes assigned to be on-call at night. My bizarre condition was seemingly improving, and I was able to put it in the back of my mind and vowed that normal sleep would cure me. Upon finishing work in mid-July, I had time to catch up on months of lost sleep. I slept 12-14 hours a day, waking up feeling confused and "hazy". I remained constantly fatigued throughout the day. Days felt as what I described as "choppy"; I couldn't remember what I had done earlier. Nothing seemed to phase me; the difference between good or bad didn't exist, things just "were". I attempted to self cure by remaining active and busy throughout the day, but found myself left exhausted and unable to follow through with my daily plans. Psychologically, I was a wreck, wondering when, if ever, I would recover and constantly wanting my "normal" self back. I constructed causal theories, allowing the mysterious illness to literally consume my thoughts and dictate my life. I couldn't look at my friends, family, or strangers without considering that no one felt like I did. I became disinterested in leaving the house and my once outgoing, outspoken, and energetic personality became bland and depressive. My short term memory completely failed me; in my worst stages, I struggled to remember what I was thinking about a mere 30 seconds before. I suffered from a constant headache. My brain became "hazy"; I went about my day passively, feeling like my actions were disconnected from my thoughts. I became miserable to be around, constantly complaining and making excuses to account for my bizarre condition. I kept questioning what I did to deserve this and how this happened to someone with a normal medical history. I finally saw my family doctor in mid-August and was diagnosed with Mononucleosis. I believed this aptly explained the fatigue, but failed to give explanations for the mental symptoms. I felt positive about the diagnosis but slightly unresolved. The doctor said my symptoms would start to clear up in a matter of weeks, and that I would be fine for the start of classes in mid-September.

I returned to school hopeful, but found myself unable to lead my normal life. I started to see a counselor to address the condition as a mental health issue, but deep down knew that there was a physical cause. I was encouraged to separate "things I know to be true" from "things I think are true" in an attempt to approach the illness as the product of depression or anxiety. I continued to feel the seemingly bizarre physical symptoms, but became anxious that my "new self" could not meet the social, educational, and extracurricular demands that I had once been able to manage with ease. My in-class focus was eliminated, I ate one pathetic meal per day, and had to build in time to lie down and rest. I was truly at my worst and was ready to drop out for the semester. Basic tasks became a burden. I accepted that I was depressed, but only because of the physical ailment, not because of external forces. My friends offered support, but I created a block because I felt like no one could properly understand or relate to me. I failed to be self-sufficient to the point that I asked my mother to make the long drive to school to help me. I started vitamins to cure the mono, and initially felt better; however I knew that mono wasn't causing my ailment. An untimely breakup pushed me over the edge, and I started to lose all hope of recovery. I felt depressed, frustrated, and confused, as my mind continued to fail me. It truly takes feeling your worst to be able to recover.

I restarted my ADD medication after a 6 month haitus (my studies in Sweden required such little work that I could do them without having to use my medication). I started on a new medication and immediately felt better, like I had more energy. I felt positive, and indicated this to the mental health nurse I was seeing. When the medication wore off, the symptoms would return in full force, hitting me harder than before. I couldn't focus on my assignments and continued to avoid social obligations. I met weekly with both a physician and a mental health nurse. The mental health nurse pushed me to self-cure mentally, but I couldn't resolve my feelings towards an undiscovered physical symptom. I continued to push for an MRI, and placed my hope on a physical ailment. I needed a tangible cause; nothing in my life was causing me to be depressed. Not once did the physician or mental health nurse consider the December concussion to be a cause. I was prescribed an anti-depressant to help me sleep, but found that it failed to both put me to sleep and keep me sleeping. I would wake up at 6, my brain still running.

After a minor epiphany with the mental health nurse at the end of September, I accepted my illness to be anxiety/depression and that it was perpetuated by my own negative thoughts. I was prepared to move forward with whatever treatment the mental health nurse suggested. Resolved, I determined that good, natural sleep and therapy would cure me. I turned my focus more towards schoolwork and my social life and attempted to make a recovery.

By mid-October, the helpless calls to my parents had subsided and my overall health started to ameliorate. My feelings of "if I was healthy..." also subsided, as I slowly accepted the hand I was dealt. I stopped seeing the mental health nurse and the physician. Still undiagnosed, I felt myself recovering week by week and was prepared to be patient. My thoughts of my illness turned into those of my recovery, my surroundings, and my studies. I met a girl and started to resume life as normal.

In mid-November, I was finally given an appointment to a neurologist (CDN healthcare involves long waits for specialty appointments). On Thanksgiving day, I saw him and was diagnosed with post-concussive syndrome. I had integrated my illness into my life, and receiving this diagnosis was a positive outcome. Recovery can and will occur, he comforted me. I felt relieved that this wasn't my fault, and most importantly wasn't a product of my mind.

I struggle to write this. Remembering the past 6 months is both difficult and emotionally draining. It pains me to consider how long I've been ill and how many opportunities and experiences have passed me by.

Today, I am not fully recovered. I still sleep poorly. I still have difficulties with memory, attention, and fatigue. Despite my unfortunate, unfair position, I have hope. Hope for recovery. Hope for understanding and health. Hope that someday I can be my old self again. Hope that doctors, friends, and family can understand our illness and provide it with the importance that it merits. Hope that people will never discount the brutally damaging effects of a head injury and not downplay the profoundly awful effect that it has on ones life.

As I recover, I continue to rediscover myself. I know that when this subsides, I will emerge a stronger, healthier person. And never again will I discount the importance of good health.

There is hope, friends. You're not alone in this battle. I, along with thousands of others, have been and still are fighting PCS. This is not your fault, and you can't control this. You didn't ask for this and unfortunately you can't make it go away instantly. But recovery is within your reach. Positive thought and distraction have served to be the best medicine. Surround yourself with those that care about you and can get you through this. Understand that illness is temporary and you will again be yourself. I've managed to internalize this, but it wasn't without the help and support of my family and friends. Talk to someone; exist outside your thoughts and theories. Connect with others and understand that you're not alone. Internalize hope and believe in recovery.

Thank you for lending your ears. This is more important to me than you could ever grasp. Keep fighting, there is hope for recovery.

x
JNC

Theta Z 11-25-2012 12:20 PM

Reposting and reformatting OP to TBI-PCS threads.
 
Quote:

Originally Posted by JNC3 (Post 934259)
New to this website and thought I would tell my story.

This is an exhaustive account of my battle with what I now know to be PCS, but for months believed to be severe insomnia, depression, anxiety, and mononucleohttp://neurotalk.psychcentral.com/images/styles/spring/editor/color.gifsis.

My hopes in writing this is that someone out there can relate and draw a glimmer of hope from my story. Nothing is permanent, and I hope my account can serve as testament to that.

After a minor concussion during a squash game December 2011, I was left feeling fairly miserable for a number of weeks. I was able to move my exams and write them at my convenience. I was a third year University student with diagnosed ADD but was otherwise completely healthy.

I recovered fully by January and thought nothing of the incident.

In late April 2012, my health started to rapidly decline.
At the time, I was studying in Sweden and had no conception of my access to the Swedish healthcare system.

I felt dizzy, confused, extremely sensitive to light, slightly depressed, and developed a low tolerance to alcohol. My short term memory all but faded.
I couldn't sleep and was constantly exhausted throughout the day.

I credited the symptoms to the constant Swedish sunlight, rising at 3am and setting at 11p, causing my minor insomnia.

I was confident that my homecoming to the States would cure me once I could sleep again.

I started a new job immediately upon returning from my Exchange program.

I didn't give myself enough time to recover from jetlag and started working roughly 8a-11p daily, and was sometimes assigned to be on-call at night.
My bizarre condition was seemingly improving, and I was able to put it in the back of my mind and vowed that normal sleep would cure me.

Upon finishing work in mid-July, I had time to catch up on months of lost sleep. I slept 12-14 hours a day, waking up feeling confused and "hazy". I remained constantly fatigued throughout the day.

Days felt as what I described as "choppy"; I couldn't remember what I had done earlier. Nothing seemed to phase me; the difference between good or bad didn't exist, things just "were".

I attempted to self cure by remaining active and busy throughout the day, but found myself left exhausted and unable to follow through with my daily plans. Psychologically, I was a wreck, wondering when, if ever, I would recover and constantly wanting my "normal" self back.

I constructed causal theories, allowing the mysterious illness to literally consume my thoughts and dictate my life.
I couldn't look at my friends, family, or strangers without considering that no one felt like I did.
I became disinterested in leaving the house and my once outgoing, outspoken, and energetic personality became bland and depressive.

My short term memory completely failed me; in my worst stages, I struggled to remember what I was thinking about a mere 30 seconds before. I suffered from a constant headache.
My brain became "hazy"; I went about my day passively, feeling like my actions were disconnected from my thoughts. I became miserable to be around, constantly complaining and making excuses to account for my bizarre condition.

I kept questioning what I did to deserve this and how this happened to someone with a normal medical history. I finally saw my family doctor in mid-August and was diagnosed with Mononucleosis. I believed this aptly explained the fatigue, but failed to give explanations for the mental symptoms. I felt positive about the diagnosis but slightly unresolved. The doctor said my symptoms would start to clear up in a matter of weeks, and that I would be fine for the start of classes in mid-September.

I returned to school hopeful, but found myself unable to lead my normal life. I started to see a counselor to address the condition as a mental health issue, but deep down knew that there was a physical cause. I was encouraged to separate "things I know to be true" from "things I think are true" in an attempt to approach the illness as the product of depression or anxiety.

I continued to feel the seemingly bizarre physical symptoms, but became anxious that my "new self" could not meet the social, educational, and extracurricular demands that I had once been able to manage with ease. My in-class focus was eliminated, I ate one pathetic meal per day, and had to build in time to lie down and rest. I was truly at my worst and was ready to drop out for the semester. Basic tasks became a burden. I accepted that I was depressed, but only because of the physical ailment, not because of external forces.

My friends offered support, but I created a block because I felt like no one could properly understand or relate to me. I failed to be self-sufficient to the point that I asked my mother to make the long drive to school to help me. I started vitamins to cure the mono, and initially felt better; however I knew that mono wasn't causing my ailment. An untimely breakup pushed me over the edge, and I started to lose all hope of recovery. I felt depressed, frustrated, and confused, as my mind continued to fail me. It truly takes feeling your worst to be able to recover.

I restarted my ADD medication after a 6 month haitus (my studies in Sweden required such little work that I could do them without having to use my medication). I started on a new medication and immediately felt better, like I had more energy. I felt positive, and indicated this to the mental health nurse I was seeing. When the medication wore off, the symptoms would return in full force, hitting me harder than before. I couldn't focus on my assignments and continued to avoid social obligations. I met weekly with both a physician and a mental health nurse. The mental health nurse pushed me to self-cure mentally, but I couldn't resolve my feelings towards an undiscovered physical symptom.

I continued to push for an MRI, and placed my hope on a physical ailment. I needed a tangible cause; nothing in my life was causing me to be depressed. Not once did the physician or mental health nurse consider the December concussion to be a cause. I was prescribed an anti-depressant to help me sleep, but found that it failed to both put me to sleep and keep me sleeping. I would wake up at 6, my brain still running.

After a minor epiphany with the mental health nurse at the end of September, I accepted my illness to be anxiety/depression and that it was perpetuated by my own negative thoughts. I was prepared to move forward with whatever treatment the mental health nurse suggested. Resolved, I determined that good, natural sleep and therapy would cure me. I turned my focus more towards schoolwork and my social life and attempted to make a recovery.

By mid-October, the helpless calls to my parents had subsided and my overall health started to ameliorate. My feelings of "if I was healthy..." also subsided, as I slowly accepted the hand I was dealt. I stopped seeing the mental health nurse and the physician. Still undiagnosed, I felt myself recovering week by week and was prepared to be patient. My thoughts of my illness turned into those of my recovery, my surroundings, and my studies. I met a girl and started to resume life as normal.

In mid-November, I was finally given an appointment to a neurologist (CDN healthcare involves long waits for specialty appointments). On Thanksgiving day, I saw him and was diagnosed with post-concussive syndrome. I had integrated my illness into my life, and receiving this diagnosis was a positive outcome. Recovery can and will occur, he comforted me. I felt relieved that this wasn't my fault, and most importantly wasn't a product of my mind.

I struggle to write this. Remembering the past 6 months is both difficult and emotionally draining. It pains me to consider how long I've been ill and how many opportunities and experiences have passed me by.

Today, I am not fully recovered. I still sleep poorly. I still have difficulties with memory, attention, and fatigue. Despite my unfortunate, unfair position, I have hope. Hope for recovery. Hope for understanding and health. Hope that someday I can be my old self again. Hope that doctors, friends, and family can understand our illness and provide it with the importance that it merits. Hope that people will never discount the brutally damaging effects of a head injury and not downplay the profoundly awful effect that it has on ones life.

As I recover, I continue to rediscover myself. I know that when this subsides, I will emerge a stronger, healthier person. And never again will I discount the importance of good health.

There is hope, friends. You're not alone in this battle. I, along with thousands of others, have been and still are fighting PCS. This is not your fault, and you can't control this. You didn't ask for this and unfortunately you can't make it go away instantly. But recovery is within your reach. Positive thought and distraction have served to be the best medicine.

Surround yourself with those that care about you and can get you through this. Understand that illness is temporary and you will again be yourself. I've managed to internalize this, but it wasn't without the help and support of my family and friends. Talk to someone; exist outside your thoughts and theories. Connect with others and understand that you're not alone. Internalize hope and believe in recovery.

Thank you for lending your ears. This is more important to me than you could ever grasp. Keep fighting, there is hope for recovery.

x
JNC

Thank you for your articulate posting of your experiences and your encouragement for what we each and all are dealing with, in our everyday lives and here on the TBI-PCS support group threads.

I would suggest Reposting this excellent original post as a new thread on the TBI-PCS Support Group here on NT, in the suggested-above Reformatting, for easier reading for those of us with PCS-vision/reading problems with longer paragraphs.

Here's the link to post a new thread on the TBI-PCS group:

http://neurotalk.psychcentral.com/ne...newthread&f=92

Appreciation,

Theta


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