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..! 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...

Hello JINXy, welcome! Yes, it is entirely possible to have all this symtoms come on later after a concussion. The same this happened to me - mine got really bad about 12 days after an accident. You should probably start by seeing your GP. There is really not much you can do other than rest a lot and take good care of yourself. Doctors can only treat your symtoms, but not cure them. As far as MRIs go - most of the time they don't show anything and are very expensive, so you might want to hold off for a while, But I am only speaking from personal experience and have no medical knowledge. I hope you will get better soon.

I agree with Sissy. And I would start two places. or Three really.

One I would go to a general practioner if you have one. Or a doctor
that would deal with the headaches/or sharp pains that you get in
the side of your head. These could be with the headaches.

Next I would take it slower to recover. Rest when you need too.
Read when your eyes let you. when the pages start to give you
trouble. Put the book down. This kind of thing. Start a small
exercise routine.

Then I would also keep coming here and reading and posting some
questions. Let us be a support group for you. Honestly we would
be the ones that understand what you have gone through the
best and know what to do to help you the most.

Now one more thing. I live in Northern Indiana, if you need something
let me know. I have a couple of good doctors.

Donna

1. Yes, that's entirely possible. My symptoms didn't really appear until 12 hours after my concussion, and didn't get really bad until weeks later.

2. It not only sounds remotely like PCS, it sounds exactly like PCS. Rest assured, that's what you've got.

3. Having an MRI would probably not be of much benefit to you, but I'll get into that in a second.

4. It's extremely unlikely that a new CT scan would show anything beyond what your first one did (which, as I understand it, is nothing). A CT scan is an extremely primitive tool for diagnosing problems with the brain, as it can only show whether appreciable brain mass has been lost (this is typically only the case in catastrophic brain injuries, the type that would leave a person in a coma for a day or more). MRIs can show a little more, and fMRIs can show the brain in astounding detail, but all of these tests are ridiculously expensive if you're paying out of pocket (particularly fMRIs), and they wouldn't do you any significant amount of good (once again, I'll get to that in a second).

5. There is no benchmark test for PCS; doctors can test your memory, balance, and comprehension skills, but they can't test for the condition itself. That is to say, they can't test for PCS the same way they can test for mono or HIV (blood and saliva testing), they can only say "this patient seems to exhibit symptoms of PCS", and that's about it. There are probably doctors out there who would argue that I don't have PCS, and there are probably doctors out there who would argue that you don't have PCS either. We in the business of concussions call these doctors "idiots". There's a lot of idiots in the medical community.

6. Some people on here may disagree with me, but personally, I would argue that it's entirely unnecessary to see a doctor about what's going on with you. In fact, I can provide every ounce of information right now that a normal doctor (as well as many neurologists, neuropsychiatrists, and neuropsychologists) would give to you if you set up an appointment with them:

"Oh, you had a concussion? Persisting symptoms, huh? Well, get lots of sleep, drink plenty of water, and stay off the alcohol for a while." As he left the office, he'd likely also add "hey, and take care of yourself, mmkay?" Then he'd wink at you. Doctors appointment over! Hooray!

The thing is, there's nothing that a traditional MD, or a neurologist, or anyone else in the field of western medicine can do to make your brain heal, it needs to do that on its own (though there are people who can help it do that on its own). There aren't pills for PCS, and there isn't a surgery for it, so there's really nothing western medicine can do to help you (other than possibly providing peace of mind). A neurologist could map out all of your current deficiencies, but that would be the end of their "help". Unfortunately, when it comes to brain issues, western medicine is more than proficient in DIAGNOSING problems with the brain, but they can do absolutely nothing when it comes to HEALING them. It sucks for concussions, basically.

7. A GP/family doctor is not going to do someone with symptoms like yours very much good (they might be of benefit if you were constantly falling over, passing out all the time, or throwing up 9 times a day, but your symptoms are a bit too subtle/ambiguous for western med), nor is a neurologist, but we just went over that.

8. You are not stuck with this, trust me you WILL heal from this, and you're not in any more trouble because your symptoms came on later than "normal".

9. No, you didn't bring this on yourself by continuing on with the tour. You just did what comes naturally to people, you tried to continue living your life the way you were used to living it. It's perfectly natural, and you have done yourself no further harm by doing so.

Oh, and you're not losing your mind, but PCS can feel like that sometimes. Once the condition is resolved, all of that will go away.

So this was probably a downer of a post for you to read, but I figure a person such as yourself would rather get information given to them straight than just receive a bunch of "Hi, get well! " comments.

That said, and this is the good news, there are things you CAN do to help yourself heal faster. First off, take the random doctor's advice and do sleep when your body wants to sleep, drink plenty of water, don't overexert yourself, and stay off the alcohol until you feel like yourself again. You might want to consider taking some fish flax oil as a daily supplement, as flax oils are great for the brain.

If you're able to do so, I would STRONGLY suggest that you also consider going to see a craniosacral therapist - if you can find an experienced one, these people can work MIRACLES with concussions (I sincerely wish I had known they existed earlier in my recovery, seeing a craniosacral specialist within weeks of my injury could have saved me years of grief). If you can't find a craniosacral therapist, try to find a cranial osteopath (these guys are traditional MDs, but can do some very good work with concussions).

Those are my primary suggestions, but you can feel free to send me a message if you want more info.

Sissy, Donna, and McGee: Thank you all so much for your replies! The information and support are very much appreciated!

I remembered something else, and your responses have brought up a couple things as well, whenever anyone has the time...

1. I don't know what bearing this could have, but I forgot to mention that I have had two concussions in the past. The first one was in middle school...7th grade...I was unconscious for an unknown amount of time and had amnesia for a week, but after that no lasting effects. The second one was in early 2002, I don't think I was actually knocked out, just dazed for a few seconds. I had absolutely no after-effects with that one. What--if anything--does this history mean for me in my current condition? I know it's not good to have multiple concussions, but how many is "too many" and within what kind of time frame?

2. As I have no insurance, I don't really have a GP, either. Is it a waste of time and $10 to go to the health department for this? Would they even know how to treat me or would they just refer me out to someone I can't afford?

3. Other than the obvious "it's bad for you in general," what is the importance of staying away from alcohol right now? Does drinking tend to worsen the symptoms or make this last longer or something? Some of us were drinking on the tour, and I did a couple times in the week following, but that was all before the symptoms started showing up so I dunno if it has any effect on that or not...

4. How slow do I need to be taking things here?? It's been six and a half weeks already, and we've been off for the holidays, so I've done pretty much nothing but sit around the house with my family as it is. New tours start in January though and I'm already scheduled to be in four different states the first weekend! No pun intended, but my head really needs to be in the game here to do my job. Also, I have been looking for a second job for about a month now. This is not an optional thing. I'm worried that I won't be able to handle a "normal" job though because of all the problems I've been having. Can anyone advise me on this?

5. What does a craniosacral-whatever doctor do, exactly? I've never even heard of one before.

Heh...sorry if it annoys anyone that I keep numbering everything...it helps me stay organized lately. And McGee, your response was not a downer at all! It actually made me laugh at points, but it was still very informative and to-the-point. Thank you!

The thing is if you can't get enough rest you could definately have a relapse.
Even if your not 100% you could definately have a relapse.

Now I would definately worry about you being in 4 different states in one weekend, especially if I understand things and your going to need to be able to lift things and work with lights.

Now the part about having had two other concussions. that would make it a slower process to recover from this one. There is no way we can tell you how long though.

I have no idea whether going to a doctor would help you at all. I would see
about taking it slower and see if you can just get the symptoms to calm down.

I personally have other issues going on besides my PCS, so mine is otherthings too. So I definately need to continue seeing a doctor.

The only other thing I can think of that might work is to the ER and list your symptoms. Especially the stabbing pain, in the ears, the headaches and some of the other things. See if they will call a neurologist for you. I would maybe have them do a MRI or EEG also. Now I realize your going to say you don't have the money for these bills. That would be when you get the bills,
you then send to the dept that handles these things something showing how much you made last year.

Donna

Sorry Donna, but I have to disagree about going back to the ER. Maybe it is different in Indiana, but I did not get any real help at the ER and was told to go home and take Naproxen when my GP had told me not to take it because of all the bruises on my legs. My local hospital has been haunting me for money for months now and my lawyer says they can wait. They charge a lot more to people without insurance. Anyway, I also had some stabbing pain just behind my ears - first on one side and then the other and it went away after a couple of weeks. That was four months after my accident.

Alcohol is bad at this time because it can make your symtoms worse and your brain needs to heal.

No offense to you Donna, but you're wrong on this one. There is no sure fire way to know how prior concussions are going to affect your ability to recover from a new one (if they to affect it at all). Most professional football players, whether they acknowledge it or not, have sustained AT LEAST 30 or so mild concussions during their playing careers, though they tend to not consider a hit to be a concussion unless they have pronounced symptoms for at least a couple of hours after their impact (otherwise they just call it getting their "bell rung"), and yet the vast majority of these football players will show little or no ill effects from these repeated head injuries as they grow older.

I have a friend who's lost consciousness from head injuries over 10 times in his life, and yet he actually claims he recovered faster after each subsequent head injury (first one took two weeks, second week and a half, third a week, and so on). Other people would likely say that the inverse is true, where it's taken them longer and longer to recover from each head injury they've had. Still other people (myself included) only had one head injury, and have yet to fully recover from it. Simply put, there is NO WAY to definitively predict recovery from a head injury, and expecting you to take longer or shorter to heal because of the mild head trauma you've had in the past would be a foolish endeavor. Your past may have some bearing on your recovery right now, but if it does it's likely to be EXTREMELY minimal. Don't worry about your old bumps to the head, you've got enough to worry about as is.

No conventional doctor is going to "treat" you regardless of where you go. They can give you pain killers for headaches, or stomach pills for nausea, or Xanax for mood problems, but they aren't going to give you some magical pill that makes your brain heal like it's supposed to. I would say that it might be beneficial to see a doctor for this merely to get information, but unfortunately the VAST majority of doctors know absolutely nothing about the brain. I would say that it would be a waste of time and money to go see a GP type doctor for this, and it would DEFINITELY be a HUGE waste of money to go to the ER. Don't touch the ER with a 10 foot pole for PCS symptoms, that's like going to the grocery store to buy a grand piano.

Alcohol will make your symptoms FAR worse (believe me on this one, I was in college when I first hit my head and continued to try to drink after my injury for quite some time, the hangover effects were far more like dementia than anything you'd expect from alcohol). Introducing alcohol to your body also puts the healing your brain is doing on hold, as it needs to drop everything and get the alcohol out of your system entirely before it can go back to healing from your injury. There's no evidence to support that alcohol puts a stop to healing, it just puts healing on hold (also, drinking is going to make it more likely that you'll fall over again, so it increases the probability of your hurting yourself further).

You need to do whatever feels right to you. If you feel like you're able to go back to work, then go back to work, but if you feel like you don't have enough gas in the tank, then you're going to need to extend your vacation from the tour. Stress does complicate things significantly with recovery, so just keep your relative peace of mind as your highest priority while you're recovering and you'll be fine.

It's sort of like a massage, but for the brain and spine. It works to knead out the energy of the impact your head took when you sustained your injury, so that your brain can move past that impact and heal without any obstructions. As far as I have found, craniosacral therapy is the single best therapy for concussions that can be found.

Hi Jinxy - I agree with everything PCS McGee has said and just want to reinforce that at present you don't push yourself to do anything whatsoever.

I firmly believe that what you do in the initial time post accident has a huge bearing on your long term recovery. You may not even realise that you are pushing yourself - I was finding that I would be saying to myself that I "couldn't be bothered doing things" - something that you would never have heard me saying previously and then would force myself to do what ever it was - BIG MISTAKE. It was really my brain trying to let me know that I didn't have the capacity - I was forcing myself to do things and making my brain scream and want to explode in my skull. Please do not do this to yourself take a break - I have been living with this for 6 and half years now and as the others know it destroys your life.

ER - I kept going back saying my head hurt etc, I was told by one doctor that he knew about people like me as he used to work for an insurance company - well you can probably guess I went out and sat in my car and cried and thought maybe I had gone crazy. Not a good experience.

MRI and CT - they have shown nothing. Only thing that showed anything was a QEEG - but then there is nothing really to fix what it shows- so why spend the money - my QEEG for me was really an emotional thing - so that I could see something that justified the symptons of the PCS.

Repeat Concussions - I think there could be a problem if you bump your head again before the previous concussion has healed. I know that it takes less and less of a bump each time to have worse effects. And with PCS we all seem to be more accident prone due to problems with balance and self awareness issues.

Stress - try to avoid this totally - not good for you at all - seems to exagerate all the symptons.

Please take care of your self

Lynlee

I'm one of those people that McGee is referring to.

I didn't start showing symptoms of a concussion until three days after I hit my head. Until then, all I had was a huge goose egg on the back of my head and a headache where I'd hit my head. Three days later I started throwing up and was dizzy. I went to the ER, and they did a CT scan which ended up being negative. They sent me home with vicoden and a pat on the head.

The very next day, I started having seizures and my hands and feet were going numb. Back to the ER I went. They had to give me valium and dilantin to stop the seizures. They then set me up with a neurologist.

I've had the gambit of PCS symptoms. To make it worse, I already had PTSD from events that happened years before- this made the PTSD symptoms get really bad.

My neurologist has run many tests on me including a sleep study and an MRI five months after I hit my head. I'm the odd man out, where the MRI did show the damage to my brain where I hit my head.

Thankfully, I have good medical insurance. So, I pay nothing for these tests.

My neurologist told me that these tests were done to rule out anything else that could be causing the symptoms, and I appreciate that. Some of my symptoms look very much like Parkinson's. There's really nothing that doctors can do to heal you- whether the damage shows or not. All they can do is relieve your symptoms (if you choose to go that route) and tell you to rest as much as possible.

So- I agree those that have told you that having an MRI if you don't have insurance is probably a waste of your money.

I've never been one to suffer needlessly, so I'm grateful for the meds that my doctor has given me. I'm on:

• Seroquel to help me sleep
• Klonopin to stop the myoclonic jerking
• Provigil to help me concentrate while I'm at work

None of these things will heal me- they just mask the symptoms. I'm OK with that- especially the jerking. That's especially annoying and embarrassing.

The thing that will help you heal is to take care of yourself. Rest when you feel you need rest and do NOT push yourself. I need to be better at this particular piece of advice because I tend to push myself and then pay for it later.

The folks on this board are really great and have lots of experience and advice to give you. I'm glad you landed here, but sorry that you are experiencing these things.

Hugs,
Lori