NeuroTalk Support Groups - New here with a long story and lots of questions!

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- Traumatic Brain Injury and Post Concussion Syndrome (https://www.neurotalk.org/traumatic-brain-injury-and-post-concussion-syndrome/)

- - New here with a long story and lots of questions! (https://www.neurotalk.org/traumatic-brain-injury-and-post-concussion-syndrome/34700-story-lots-questions.html)

Jinxy,
You have gotten some great advice from many experienced veterans of PCS! It is all good advice. Personally I would keep your money in your pocket in regard to MRI and even PCP visit. I am a critical care nurse and parent of a 17 year old who suffered from PCS for a good 6 months and my advice after this journey is rest, and keep stress level down and give yourself time to heal. You will heal but your brain is going to become symtomatic if you push too hard!! I am sorry if this means a temporary lifstyle change because that will then cause stress just thinking about it. It is not an easy recovery and it has alot of ups and downs. Take care of yourself and do not be too hard on yourself. Learn all you can because the knowledge enpowers you in the recovery process. Keep your sense of humor and give yourself several months.
Nancy

hi there jinxy im ali from the uk,reading whats happened to you ,you have the exact same symptoms that my husband has and he has been diagnosed with post concussion syndrome ov er her.He was knocked unconscious in a pub 8mnths ago.He also has trouble with left and right with his keyboard,headaches,loss of appetite,he doesnt sleep either.Do you have trouble taking in information if there are several people talking at once and that sort of thing ? look forward to your reply ali

Quote:

Originally Posted by JiNXy (Post 180225)

Hello everyone! My name is Debie but you can call me JiNX or JiNXy (everyone does, it's a long story, haha). I live in southern Indiana and I'll be 25 on Friday. With the introduction out of the way, here is why I'm here...

About six and a half weeks ago (Nov. 9th) I was at a concert in New Jersey (another long story) and was knocked unconscious for approximately two minutes when the singer accidentally kicked me in the face while crowd surfing. LOL (We're friends, it's cool, I forgave him!) At first I refused medical attention because I don't have any insurance, but after about an hour I still wasn't feeling any better (headache, blurred vision, tired, dizzy, and nauseated) and my friends and the band later told me I was drifting in and out of consciousness. There are still parts of the night--before and after the injury was sustained--that I do not remember at all, and what I do remember is even filled with little holes. For example: in the band is a set of twins, but it's VERY easy to tell them apart by their hair and the way they talk...one of them came to talk to me in my friend's car after the show and 20 minutes after, I couldn't remember which one of them I'd spoken to! And I've known them over a year so that's pretty bad. :(

Anyway the rocker twin is the one that insisted I go to the hospital and get checked out--and they'd pick up the tab for me (they're amazing like that)--so my friends drove me there. I don't remember the drive. I don't remember getting out of the car or entering the hospital. I don't remember much of the 5 and a half hours we were in the ER, except multiple voices telling me to wake up so they could figure out what was wrong with me. In the end I had a CT done that came back perfectly fine, they told me I had a concussion, gave me some 800mg ibuprofen and sent me out the door...with a bill over three grand..! :eek: It was suggested that when I got back to my home state, I have an MRI done. This was not financially possible after that ER bill, though, and it was over a week before I was back home, so it never happened.

The following day I had a slight headache and was a little tired, but nothing more. I brushed it off as we'd only gotten like an hour and a half of sleep. My friends and I were with the band for a while so the show schedule was this: 9th (concussion night), 10th, 11th, 12th, 13th, 15th, 17th, and 20th. I stayed out of the pit/crowd altogether from the 10th to the 15th, but still got pretty into the shows at some points and was jumping around still b/c I felt fine. The 17th and the 20th I was back in the front row, crazy as ever, still feeling fine. A few days after Thanksgiving I began to notice I was a lot more tired than usual...ALL the time, no matter how much sleep I got. I'm a night owl by nature and all my life I've been able to function at 100% on just a few (2-5) hours of sleep a night. Lately I've been sleeping 9-12 hours at night/early morning and STILL am sometimes tired enough to warrant an afternoon nap. My friends have been commenting on my slipping memory for a few weeks now as well, and at first I was able to write it off, but it's gotten REALLY bad lately. Other random "symptoms" I've picked up in the last 2-3 weeks mostly are: sporadic headaches with no triggers, dizziness when I first stand up after sitting/laying down, blurred vision (esp. in the car at night--thankfully I don't drive, but it still bothers me), difficulty reading (I lose my place constantly when my eyes shift from the right side to the left side of a page/paragraph), occasionally seeing things that aren't there (ex: flashes of light and moving shadows), loss of appetite, and just feeling "down" overall. I wouldn't really call it depression or mood swings...more like intense boredom and lack of inspiration. And the other night I completely "forgot" how to type correctly...I mean I knew I was screwing up and I knew in my mind how to move my fingers to fix it, but the brain-to-fingers connection was just not being made for a long time. And no, I was not on any kind of drugs (Rx or otherwise) or any alcohol at the time!

In the last three days I have started getting horrible stabbing pains a few times a day in both of my ears (at separate times, though, never together at the same time) and also I hear a constant, very high-pitched sound. It's not that loud and I am able to drown it out with music, television, or normal conversation. I've also picked up on a few personality changes when I've made really no effort to change anything about myself.

Searching the web for combinations of the above symptoms brought me here. I know you guys aren't doctors and all that, but lacking insurance still I can't really afford to go see one (esp. a specialist) or have a bunch more CTs or MRIs done right now...and maybe I'm in denial but I'm not even entirely sure I need to see a doctor? Hoping to just get some educational answers/advice here that can help me decide my next move in all of this...

1. Is it even possible for PCS symptoms to lie entirely dormant for weeks and then suddenly wreak havoc on a person?
2. Does this even sound remotely like PCS, or am I just completely losing my mind altogether?
3. If I were to have an MRI now, so much later, would it even show anything?
4. Would a CT scan now compared to the one I had right after I was knocked out show any differences since I have all these crazy symptoms now that I didn't then?
If it IS PCS:
5. How do I know for sure if there's really no test for it?
6. Is it absolutely necessary to see a doctor about it, or is it possible to fix everything myself?
7. Can a GP/family doctor treat this, or does it require a neurologist or something else?
8. Does it mean anything in the long run that there was such a delay in the onset of symptoms? Like for most people the symptoms are immediately after the concussion, last a while, and gradually get better...since I had very few and mild symptoms immediately after, then a period of no problems and then suddenly all of this, does that mean this is what I'm stuck with now?
9. Did I bring this on myself by continuing the tour immediately after sustaining a grade 3 concussion?
If it's NOT PCS:
10. Does anyone have ANY idea what might be going on with me? Some days I'm worried that I really might be losing my mind! :(

I think that's it for right now...I'm really tired again and I can't remember if there was anything else I was going to ask or not...I really gotta start keeping notes. Anyway, if you read all of this, THANK YOU!! I'm sorry it was so long, I'm just trying to be as detailed as possible in hopes of getting detailed, pertinent answers...

Where to Go for PCS...

Hello Jinxy:

If you go to the Center of Disease Control and Prevention, and type in closed head injury or just google that you will find a list of symptoms of what PCS, MTBI covers.

If you have over three symptoms and according to you post I counted six or more, you should make an appointment with the Rehabilitation Institute of Chicago. They are the number one medical clinic that know how to treat brain injury. I went to four local doctor of which the neuro surgen told me that the CAT Scans and MIR did not show anything for him to cut on and when I showed him the symptoms list of MTBI he told me I did not have that injury, that I would just have to learn to live with the headache pains and mood swings.

At the RIC, after an hour and half exam and looking over the same information that four other doctors did, I was told I had post concussion syndrome, MTBI and deep depression. I started treatment with DR. Kraus at the University of Illinois at Chicago and started EEG-Bio feed Back at Midwest Neurofistness in Champaign, IL. Both of these are listed with a google search and you can get information that will help you understand what is going on.

You local doctor will only admit that he can't find what is wrong, so it must be depression and give you drugs that will only make it worse.

It took me over three years to get somebody to believe me, and even when that happens your family member will not believe that just a simple knock on the head can cause this much damage, but only tell you that you just have to shake it off and just get back to work and you will be fine.

Please check out the RIC AND Dr. M. Kraus at the UI-C on PCS.

Hope this helps you.. By the way I have a list of PCS, AND MTBI web sites that would be of help if you care to know about them.

Not heard anything from you for a while, are you feeling any better? Lynlee

Ali: I do have problems keeping up with conversations between multiple people...which sucks b/c that's pretty much all I was doing all weekend before and after the shows! My head hurt soooooo bad after the second night I just wanted to cry...and I couldn't even begin to remember who had said what about what. Very frustrating. I don't seem to have L/R troubles, but I've been noticing a lot lately when typing and such that sometimes my fingers just refuse to move the way my brain is telling them to. My embarrassing moment of the weekend was when I said something about 4 of my friends sleeping in a car and held up 2 fingers instead. HAHA

Mark: Please share the links for all of us here! I'm sure they'd be much appreciated by everyone. :)

Lynlee: Thanks for checking in. The weekend was pretty intense...like a moron I got back in a crowd the second night and was kicked in the nose by a crowd surfer. Saw stars and immediately felt dizzy, and for the first time in my life I had the tour manager pull me out. I was sidestage the rest of the night. Kind of a bummer, but better safe than sorry. I had the headache from hell for two days after that, but nothing else seems to have changed much so far. I had to email like four people because I forgot to tell them nearly EVERYTHING I meant to tell them when I was with them this weekend. lol *sigh* One day it will end and I'll be back to normal...I just keep telling myself that..!

Links to Check for PCS and MTBI_DAYTIMER_ BIRK

If you have not visited the BRAIN INJURY ASSOCIATION, please do so and ask for the free packet from them. Next google BRAIN INJURY RECOVERY KIT, and you will go to DAYTIMERS and it is a complete kit by a person with a MTBI, PCS that includes three DVD to explain the injury to you and family members that just can't believe that a small knock in the head is causing these problems, it just because you are lazy and not motivated to get along with your life.

Please look up eeg spectrum for a clinic in your state that could offer treatment with EEG-BIO FEED BACK. It may work on you and it may not but it has given me back a life that I though I would never see.

Quote:

Originally Posted by JiNXy (Post 185229)