bumping up for new members.

[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?

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.

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.

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.

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.

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.

I experienced whiplash almost a decade ago when I was 15. I went to a couple of chiropractors and an orthopedic doctor. The orthopedic and my PCP said my neck was fine. The adjustments fee for first chiropractor were incredibly enormous. The first one I saw want to charge an up front 1 yr $3000 treatment plan that included a couple of adjustments a week for a year. My mom thought that was ridiculous see we went to see another chiropracter. He did a few adjustments and sent me home with a cervial neck traction device, which is a device with an inflateable fulcrum where I lay my neck. This helps restore the curvature of the neck lost by the whiplash. It works well and you should try it. It really feels great after using the device and relieves the tension.

Yes, I have, more than twice. Not really sure how many, sorry but, I found being quiet, resting, no stress, heating pad sometimes helped, other times cold packs, it was something I had to experiment with. It takes a long time for things to heal and collected blood to disperse and swelling to go away. I got impatient too, I remember that, frustrated, angry, depressed. It all goes with it. But I found the more running around I did, the more commotion in my life, the more stress put upon me by other people, the worse it was. Just being alone and resting seemed to be the best thing. That's TIME to heal. Running from doctor to doctor only made things worse. When I just STOPPED and allowed myself the TIME to heal THEN it got better.

Oh and Excedrin helped More that you'd expect.

My PCS story-ies are varied, but all equine related.
Like most sport enthusiast, I refuse to give it up. Mine are all flukes really any way.
The last one was a level 3 concussion and I was out about 8 minutes. That was 3 years ago, and until about 1 1/2 years ago, I didn't know much about PCS. I still don't really, nor do most of the Dr.s in my little po-dunk area.
So, the frustration is unbearable sometimes.
The poor memory. Migraines (bad enough all I can do is sit in a dark room and cry). Ear ringing. Sometimes if I get frustrated even a little, its like someone flicks a switch and I get SO angry or SO upset I feel like I'm running wild circles inside, and can't get out.
I still have days where for no reason, I'm so utterly exhausted, my limbs are literally heavy to move. You know that seriously run down feeling when you get really ill? I don't sleep. If I do, its for a few minutes at a time.
A lot of times, I can't make decisions, and it frustrates the hell out of me because my family just think I'm being "flaky" or "silly". Its like I can SEE the answer to what is frustrating me, but I can't get it in to the shape of words.
Does that make sense?
I have days where I don't give a crap about anything. It's not being really depressed so much as I just don't care. Just very flat and dull in the personality that day?
Oh, I DO have days that I am depressed. Most meds make me sick to my stomach, or break out in hives.
I have problems regulating my temperature sometimes, and go through bouts at night where I shiver, or sweat. If I get too cold, my fingers go white from half way down to the finger tips.
Probably loads more I'm not thinking of at the moment.
I am an equestrian and I used to train horses. It sucks because that was SUCH a passion of mine. I never had a horse I was breaking or training hurt me. My accidents were mainly on the ground. A horse swung it's head to look, and I was in the way. Or helping a mare over in a stall that got wedged against a wall (the last "big one"). She jumped up, and threw me jaw first in to a concrete wall. Once I came too, went to a Walk In. They sent me across the street to the ER. Told me to bring the results right back. Plenty of time before we close, they said. Go BACK over to the Walk In.
CLOSED.
SO, BACK over to the ER to talk to someone in radiology. All the radiologist said was, "I can't say anything...but don't go to sleep."
Super.
Next day, I take the results to my family physician.
Hairline fracture to my sinus cavity. Blew 80 % of my left ear drum. And torqued my TMG muscle.
It really wasn't too excruciating from some of the wrecks I've had, but definitely the worse and the one that's most left it's "mark".
I can't train horses any more. Or "break" them. I can't take the risk. And that sucks.
My neurologist says "one more head knock, you'll be in diapers"
The last one was my 6th concussion on paper, so...I guess at 33, I need to take it easier.
I am more careful these days, and am much more aware of how big and how powerful my "co-workers" are now. Careful, but not afraid.
Frustrated, and angry about ...well, I guess where do I fit in now? really.
This is my business and my life.
I used to compete hard, now I just don't have the energy.

Any way...sorry about the ramble.
Just happy I'm "not alone"...when I often feel very much on my own.

~Warm Regards,
Mary