Hey, I've been looking through this site a bit and it's just amazing! Everyone is so helpful and supportive of everyone else like one, big, messed up family Ha Ha . I have a ton of questions about my current condition and my neurologist isn't very helpful in that area, he simply prescribes medication and gets angry when i begin to ask questions at my appointments that usually are months apart... I should probably explain my story or something...

Last summer was my first year working as a Jr. cabin leader at a Bible Camp that I absolutely *LOVE* During the September Long weekend, there was a kind of "sizzling summer's end" and all of the staff was there and it was just great. This was when i received many *many* seemingly innocent blows to my head and neck. I fell on wet grass and hit the back of my head and it 'bounced', I I fell and hit my left temple on the edge of a bench, i hit my right temple and right side of my face/head into a wall, ran face first into a tree (it was dark), I fell on gravel many times and walked into doors and other walls many times which i did all the time at home, It's normal for me haha. There was also this large blowup bungee rope contraption thinger (?) that I'm pretty sure I got whiplash from multiple times. I was tackled, clotheslined, and pushed many times by staff that were much larger/taller than me [I'm only 5 feet tall].

Each time that some sort of blow to my head or neck occured, nothing out of the ordinary happened. the one time that my head bounced on the grass, we were playing a wide game and one of the guys i had worked with that summer asked me if I was okay. He even asked me how many fingers he was holding up haha. I said I was fine, stood up, and kept playing. I had absolutelty NO SIGNS of any concussion. atleast none that I was aware of. one time that weekend around lunch time I had a mild nosebleed that lasted about 15 minutes, but I hadn't done anything recently so I didn't do anything about it. I'm not sure if that could've meant anything.

I felt completely fine until that Monday when I went to school. Halfway through first class I couldn't support my head,had a headache,was sensitive to light and sound, I was seeing spots, felt lightheaded, felt anxious/scared/sad (I started crying in the middle of class.. it was great ), I felt really weird/out of it, I was very aware of my pulse in my entire body (especially my head) and I got really warm(flushed?)(except for my hands and feet, which got really cold),I was shaking uncontrollably, had shooting pain behind my eyes/ up and down my back/neck and head, and I couldn't concentrate on anything and i kept mixing up my words and had trouble forming sentences In my head. I reread one sentence 8 times and couldn't comprehend what was being asked of me, and apparently it was a simple question (September/ start of math A30).

That afternoon my mom took me to our family doctor and he figured i had whiplash so he sent me for xrays. when we got the xrays back, we discovered that I have a congenital hemivertebral scoliosis between my shoulderblades ( it's mild, we've found that it's not that bad, I just have chronic back pain for now) he sent me to an orthopedic surgeon and told me to rest for 2 weeks and take advil/tylenol as needed (can't remember which one?) I ended up taking painkillers multiple times everyday while still feeling pain and still feeling really weird. Unfortunately, being the rebel child that I am, every weekend of September after "Sizzling" ,including the ones I should have been resting, I did something/ went to some sort of event that couldn't possibly be good for my head/neck (concerts/Paintball/Quading/etc.)

About mid-October My neck wasn't as bad, but my head was killer every day with migraine like headaches and I was started on like 5/10 mg amitriptyline with the assumption that it was simply migraines since i was at that age and my mom got/gets them. the amitriptyline didn't help so it got increased to 15mg and made an appointment with a neurologist in about 10 days. I was told to stop taking advil and tylenol because it could be rebound headaches as well.not like they were helping anyway . than one weekend early November we went back to the family doctor 3 days before our appointment with the neuro. and we were referred to go to a private neurologist out of the hospital the next day instead of in the 3 days. worst decision ever. We drove the 3 hours to the neurologist and saw him for about 30 minutes. he asked me about my symptoms, the weekend, tested my reflexes, looked into my eyes, said I have Post Concussion Syndrome, Explained nothing, increased my amitrpityline to 25 mg, prescribed 250mg naproxen to take when needed when my mom questioned the diagnosis because she was confused *as was I, since I figured I hadn't had a concussion to begin with* he was a jerk and said something along the lines of "I'm the neurologist. I'm right. you're wrong. Don't question my authority/decisions." he told us to come back in 4 months (!!) and told me to [prettymuch] 'suck it up and go to school' [I'd missed a couple weeks by than, Bahaha- nothing in comparison to now]. He's been a jerk each time we've forced our way back into his office because nothing he's given me has helped, my mom worked through our family doctor and got another doctor to get a scan of my head because she really wanted to make sure everything was okay up there. when we told our Neuro about it, he actually got angry and said it was completely useless. (that was just recently though) He's just such a jerk...


\\\ Oh wow this is getting long and I haven't really said anything...

umm...alright. The amitriptyline increase just made me tired all the time ~ sleep upwards of 12 hours a day and feel out of it the rest of the time. I'm going cold turkey off of it tonight [with Dr's permission] after cutting the 25mg pills in half for about 3 weeks to hopefully help my concentration and cognitive skillss so i can *hopefully* go back to school for the second semester of grade 11. I missed over a month and a half of the first semester~first due to constant physical headache pain, and now because of concentration/learning problems along with back pain.

The naproxen does nothing. the first maybe 5 times i took it, it helped a little bit with the pulsating, but since early december i've had no actual pain killer that works for when I have a headache occuring.

Tomorrow will be the 22nd day that I'll be on Topiramate increasing to 100mg. Topiramate is a miracle! these last 3 weeks have been so much better headache wise, but it just makes me so much more aware of my other problems [concentrating, twitching/restlessness, word finding, crying, yelling, panic].

at one point I had an EMG of my arms for my spine because my hands go numb and cold all the time[since 13], and the Doctor/Intern that did that suspected that I might not have PCS because I never had signs of an actuall concussion, and he thought that my Occipital nerve may have been irritated or something so he injected lidocaine into the muscle to see if that would help at all. he said that some people come back going 'it's a miracle!' and others come back going 'you're a quack!' he was really sarcastic. we bonded. I wish he was my neurologist, he was funny. Too bad he was a quack. and not a neurologist. that was before the christmas break and it didnt' help at all, my entire upper back/shoulders/neck and the right side of my lower back completely siezed up for 5 days and I couldn't move. it was great...

anyway. now like just within the las week or two I've started getting spine and neck adjustments and accupuncture and i've only done it once so far but I'll be doing it weekly. my back was so sore after and my head hurt so bad but apparently i was high on endorphins for a while haha. the accupuncturist/naturopath said that i'm way to tense for a 16 year old to be and that in 2 or 3 months my back should be halfway better with weekly treatments. he also said that it should help with the headaches because my back muscles are pulling on on my head or something [?] i dunno.

i'm on multiple supplements and multivitamins and i sleep most of the day. for the first few months, it was expected of me to go to school and do my homework and i felt like the headaches and confusion was my fault, like I was doing something wrong, like I'm scared/depressed for no reason. I had to drop one of my classes, my english grade bacame an exam worth my overall mark [I wrote it yesterday in a complete haze and in agony, it took 5 hours, I couldn't get what was in my head onto the paper and i literally felt completely mentally retarded; even though my teacher says he understands what i was trying to say (???)], my physics bio and math exams have been postponed but I highly doubt that will help because I've missed so much class and can't retain information. just recently I've been told by multiple people [parents, teachers, friends, adult friends] that they have NO expectations from me except for me to get better, because I've finally snapped. I've tried to hide how I've felt for so long because I hate how I feel so lost and so stupid all the time. I miss being smart. I miss being able to form a witty sarcastic remark. I miss being able to control my emotions. I miss when I didn't cry without reason. I miss when I didn't hurt. i miss when colours and music and books and laughter and light and learning and thought didn't cause pain. I miss my friends and I miss my life. surprisingly enough, I actually miss school too. I miss assignments. i miss equations labs and questions, I even miss essays. I can't believe I miss essays. I hate English.

I guess what I'm trying to say here is.. i dunno i need help. no one has really addressed how this is affecting me emotionally or behaviourly. The only reason anyone is starting to talk about my cognitive issues is because i took *5 HOURS* on an exam that took a normal person less than 2. I just really need some answers and I realize that I can only really get theorys or whatever but thats the best I can get right now and that's fine with me haha. I'm just really confused... don't know how to start after all this.:

How has anyone who has had PCS in highschool come out of it. like anyone, going through it now, out of high school, How did things work out for you? did you have to repeat any grades? Did you get to graduate with your class? what was your general experience? How did your grades do after you "healed"? Has anyone dropped out of school because of this? Has anyone been able to go to college/University after this?

The fact that I never had any symptoms of a concussion still confuses me. I've never had a concussion before in my entire life. I've always been the healthy child, never broken anything no hospital visits etc. could it just be that I hit my head so many times and the whiplash? My brother and my cousin have Autism, and a couple of relatives on my moms side have a few different mental illnesses and I actually had speech problems when I was little [mummbling and some things from 4-7yrs old] could that be a factor? this is just really confusing me and I can't seem to let it go.

My symptoms seem to change alot. Even when I had constant headaches, like everyday for weeks at a time, they'd be a different type of headache. like I'd always wake up with a headache but the pain would be different like it might be in a differnt place {behind eyes,back of the head, left, right, top, temples, middle split, tension} or it'd be just a pulsing or stabbing or it might just be the intensity that would be different. Is that normal to have such a variety of headaches? could it be from all the different head injuries? and how some days I'm more emotional than others and more confused or more tired or I'll have moments of clarity/sanity/numbness. is that normal? is that just my medication numbing some parts or am I just to out of it right now to make any sort of theory that makes sense?

In the past I've kind of worried that I might have a slight mental disability because of the family history and I always mess up words in my head and a lot of other things so I would always kind of think about it but I never told anyone about it in case they made fun of me or thought I was making fun of people with disabilities. Now that I have PCS and I feel the way that I do I feel like I'm never going to get better, like I'm going to become drug dependent, or that I'm going to have lasting side effects that never heal and i kind of feel like if that happens it will be the cognitive effects that stay because i'll be more susceptible to it because of me and... I'm just really scared and I feel like I have no one to talk to about it and I really don't want to talk to anyone about it in case I don't get it so than no one will know that I ever felt this way about this but if I tell someone I physically know about it than they'll know that part of me that I really don't want someone to know about me ... Okay that really wasn't a question I think that was just therapy for me

Does anyone have any tips on how to control their emotions? when I feel like crying when I'm in a public place I try to engage my abs and hold my breath or take deep/shallow/quick breaths and it helps a little sometimes. But what about anger/fear/panic/etx?

Alright, so Dr. Jerk had estimated my time of healing around April, so I've been so excited for April but now I've been told that we can't be like "you'll be better at date X we just have to wait until you're better" ?? so how do you know if you're better? is it just like a wake up and an IT"S A MIRACLE! moment? cause that would be great. or is it like a slow proccess like everything seems to be? how do you tell if you're better if you're on meds that affect everything? how has everyone else felt when they've gotten better? was it really wierd after you were better? When you get better does every aspect get better or am I going to pretty much be changed for the rest of my life because i fell on my head this summer and never be *normal* again??

wow this is really long, and I've been typing since 4! I hate how everything takes so much time/focus/energy well thanks for listening haha I've concentrated so hard I've forgotten half of my questions and I'll probably remember them all once I calm down and try to fall asleep... going cold turkey. I should get a blog to vent Bahaha. any reply/suggestions would be greatly appreciated at this point. I just really feel like I need some sort of guidance. God Bless ~~~Kaitlyn

gratulations, your state of the concussion address is longer as Obamas State of the Union adress..., this was an interesting read.
First, do not sign as a cabin leader of a sizzling summer's end weekend . You really want to avoid any more head bumping for at least another year or two.

You seemed to be on your way of recovery somatically, the fact that your headaches can be controlled with meds is a very good sign. I bet that you cognitive functions will improve next.
The emotional aspects of PCS are in many cases the last to leave.

Given your age I bet that you will recover in most part, but you will be always at an increased risk to re injure your self. This fact alone is a sort of disability you need to become aware of.

It took me more than three years to recover from my second last concussion and I had a very long history of concussions over more than three decades.

A friendly hug

Hi Kaitlyn and welcome to the board. There is a giant hug heading your way from our family. I am so sorry that you are struggling so much. I can feel her frustration and pain in what you wrote. I wish I had answers for you, but we are living with similar issues.

As I read you post, I was particularly touched by all the things you missed. My daughter - a 15 year old freshman - is thinking and feeling the same things. You are not alone. She has been out of school for 3.5 months and will likely be out a while longer. She feels stupid because she not recovering as fast as everyone would like, stupid that she can't remember things and stupid that what appeared to be a minor injury has in fact turned into a pretty serve on.

Do have hope that things will get better. My friend's son took 9 months to get back to normal. He was a sophomore when he received his concussion. He some how made it through sophomore year with lots of accommodations - though doesn't remember much of it. He is doing fine this year and receiving good grades.

Have faith that things will get better and tell the adults in your life what you are thinking and feeling. Don't let them dismiss your symptoms or issues. They are real and need to be addressed.

Hang in there.

Hi Kaitlyn,

I'm sorry for your injury; we all know what you're going through.

I'm also sorry that you've learned early on one of the common lessons of PCS: most neurologists are arrogant jerks who know/care shockingly little about concussion. I'd advise you to shop around if possible.

Your post made many points, let me address a few.

Firstly, I don't think it's true that you didn't have any concussion signs. Ironically, thinking you're fine after a concussion is fairly common. A lot of people don't realize anything's amiss for days afterward. For starters, you're often too out of it to know - lack of insight is a big concussion symptom. Secondly, the brain continues to swell after the impact so, accordingly, your mendition can continue to deteriorate.

Secondly, if your neuro isn't concerned that you sustained multiple impacts in different areas, he should be. You are exhibiting symptoms that might indicate injury to several lobes (for example, behavior=frontal lobe, vision= occipital, etc...). When an injury extends to all area of the brain, it's termed diffuse.

The one thing your neuro was right about is the uselessness of conventional scans. They simply aren't sensative enough to see damage and tears in the millions of tiny axons that cover your brain. People with obvious cognitive deficits will often have "clean" MRIs. The best way to find out what's really happening in your brain is to have a neuro-psychological exam. The neuro-psych is also an excellent tool for targetting cognitive therapy and for gaining you access to any services you may require. If your symptoms persist, I highly recommend you have one done by a qualified clinician.

Like you, my TBI causes me to suffer depression, anxiety, panic attacks, etc... Worst of all are the outbursts of temper. These are all signs of damage to your frontal lobe. I would advice you to find a psychologist experienced with brain injury patients to help with the depression, anger management techniques and general coping skills that might reduce your frustration level.

I would, however, caution you to be careful about talking about any mental health issues in your family history. Many doctors are all too happy to dismiss PCS as "psychological" - don't encourage them. Your "emotional" problems didn't manifest until right after your injury. I think you can be pretty sure that's your battered frontal lobe.

I guess you've learned the hard way that it's very important for you to rest. You may have to consider pulling out of school at the moment. I know that sounds devastating. However, a semester or two is nothing in the grand scheme of things if it helps you make a faster, fuller recovery.

On the recovery front, don't panic if you aren't feeling fabulous by April. Brain injury can be very idiocyncratic - it's ridiculous for your neuro to give you a recovery date.

On the plus side for you, you're young, you're responding to meds and your writing shows a wit and flexibility that requires use of your higher cognitive function.

As you and your Mom have discovered, PCS patients often have to advocate for themselves to get care. On that score, I would urge you to learn as much about head injury as you can. Some excellent sources for further reading include: the Brain Injury Association of America (BIAA)www.biausa.org; www.tbiguide.com and our own TBI forum here on NT http://neurotalk.psychcentral.com/forum92.html If that's too much reading, there are a number of excellent Traumatic Brain Injury (TBI) videos on You Tube. (Who knew it wasn’t just idiots surfing on cars?)

Cheers

welcome kat

pcs seems to have a more profound effect on people that like to live and think fast,from your post I bet you could talk for your country , and from your activities that you are a lively fun loving kid

I understand how you cannot talk to people around you about all the emotions that go with this condition

and perhaps apart from close family and friends it is wise not too, other teens can sometimes be unhelpful with things they don't understand

there are moms here with daughters in the same situation as you . So you are not alone , and this anonymous space is a safe place to vent

also all the folks at NT I have found to be caring and helpful . this board has folks with many different degrees of injury and prognoses , so don't think that you will not recover fully

YOU are young bright and have every chance of making a full recovery, it takes time and above all REST both mental and physical Not easy at your age, theirs to much going on around you, I,m not saying stop doing stuff , but know your limits

controlling emotions ? the breath is the key ,holding your abbs tight is a no no

the best way is to slow down your breathing, and the emotions will follow, this is known as breath work

1, breath in slowly through your nose ,allow your tummy to expand ( baby's and puppy's breath this way ) in fact try to extenuate this

2 breath out slowly through your mouth, allowing your tummy to deflate slowly

3 practice this when you are not anxious so, you are ready for when you need it

4 practice makes perfect

keep hydrated drink the recommended amount of water each day, not too cold

take omega 3 /6 supplements, be kind too and look after yourself

and keep us posted , remember we are here for the same reasons as you and to help you get well and cope

Hi Kat
First I am going to tell you why you didn't realize there was a concussion.
It was there, but it was mostly that it happened on that Monday. The signs of the concussion. So you started right in with the PCS symptoms more.

I hope you really take your time to work through this. You might try a massage therapist.

Donna

Kaitlyn: First and foremost: you are not alone. My 15 year old daughter, and many others, have experienced many of the same things you are. The people on this forum are so supportive and knowledgable.

We made lots of the same "mistakes" as you before we realized the extent of my daughter's concussion. She was playing still playing volleyball (shudder), staying up late playing hide and seek with kids in the neighborhood, etc. Somewhere around 7-10 days she just couldn't deal anymore and we learned all the stubborness and competitiveness in the world can't make this go away.

Our doctors are all a 4 hour drive away, so we can sympathize with driving, 30 minute appointments, driving home, you missing more school, parents missing work, etc.

However....the best thing you can do is find an understanding medical team. As I said in my introductory post, the best person we found was a psychologist who treats college athletes who sustain concussions. She helped us understand the emotional and cognitive aspects of concussion. She told us to think of concussion as soft tissue injury (which unfortunately you know a lot about right now). The more you strain it the longer it takes to heal. Be kind to your brain, try not to stress about school or friends or activities you might be missing. If you had a badly sprained ankle you wouldn't keep walking on it without support, right?

You shouldn't be so concerned about grades that you subject yourself to a 5-hour test. That's torture for someone with PCS. Talk with your counselors and get some accommodations. Wish we would have done that way sooner. Your transcripts for this year might just have to have a little asterisks next to them that say *healing from diffuse concussion junior year. There are lots of options for credit redemption these days if you need it.

Allow yourself to do things you were too busy to do before (watch "Gone With the Wind," learn to bake bread, etc.) I know the friend part is hard. They don't understand what's happening to you. I'm starting to see a couple of new, beautiful friendships blossoming for my daughter that she never would have experienced pre-concussion.

Try to relax and let your body do its work of healing. It will take time, but be patient and celebrate every little improvement. Give your mom a hug from me, ok?

Thanks everyone so much for the responses with reassurance, information, and support they are all very helpful and encouraging . After rereading my post with a fresh head I see how long it actually is [sorry about that :O] and I realize that I have a few issues wording things/ reading people/ and in General bahaha!...

Alright.. so this past Thursday, I had a meeting with my principal about my second semester and just what was going to happen with that. apparently I'm going to attempt to attend my second semester but it will be modified as such-- I will only take either 2or 3 classes or I will take the simplest classes available like career work *Ughh* not really my cup of tea. He gave me the weekend to think it over and I'm thinking that I want to take a schedule that goes Math B30 in a Sp.Ed classroom for the entire morning so I could also catch up on A30 and my physics than my other classes once those are done.. than in the afternoon I'd do Chemistry 20 and History 20. I love History (atleast what I remember of it from last year and apparently I was "stellar" at it so hopefully that could be an advantage) and I prefer Science and Math classes to english and arts. He had thought I should do spare, law 20, Visual Arts, Career, Career for credits which I didn't like the idea of at all.. I want to actually learn something from my classes... not to offend anyone, that's just my current school situation I'll have to talk to him again tomorrow and see how this works out. also my English test worked out to an 88! I think my english teacher may have seen me crying during my exam and pitied me haha. But he has recommended to the principal to get a specialist to come and give me a cognitive test in a few weeks (she's the only one for 49 schools so it'll take a while for her to get here) But it'll be the first test I'll actually be getting for my head so I'm pretty happy for it.

Does anyone think this could be a problem or anything? We have a week or 2 to change our schedule but I think for me they can make an exception anyway haha.

I had gone to a massage therapist a few times and it'd be amazing during and for a few hours after but then, about 3-5 hours after the session my back and neck would sieze up or I'd throw up and have horrible headaches/vertigo. I'd try Icing it, Yoga, running, stretches, sleeping, sitting/relaxing, and chugging *litres* of water but we finally just gave up on it and are now switching to accupuncture/ spine adjustments to see if that's any different. the first time I felt dizzy/lightheaded and had a massive headache but I was told that was normal for everyone so we'll see how that goes. Do you have any other suggestions for the massage therapy or should I just leave that one be?

How should I really go about "shopping around" should I just mention it to my family doctor that I'm not satisfied with my neurologist? and how would I go about getting a Neuro-psych? because nobody really wants to *do* anything about my *conditon*...

So apparently I have no idea what people actually think is wrong with me. and that just bugs me. Just thought I'd let you know that since there's nothing I can really do about that. My own mother doesn't even really know what's wrong with me. I'm freaking out on her, having a horrible temper tantrum, and she just freaks out on me- blaming the medication and doctors for everything and just calling me a grouch (in a not so nice term) and when I try to explain to her that I have a, y'know, *HEAD INJURY* a whole knew can of worms just rips open. She starts insinuating that I'm either on the verge of faking, It can't possibly be as bad as I make it out to be, I'm just such a horrible person ( like I can help it I'm SO SO SORRY MOM), and just freaking out on me which causes me to freak out on her which just made a horrible mess and I seriously felt like hurting her D:!! IT WAS THE WORST! I screamed at her and asked her if she even knew anything about what was wrong with me. she said she "had'nt had the time to do research" It's been months. I figured if she really cared, if she really truly cared she would actually *try* to find out what was wrong with me. I know what my mom does with her time and I know that she's had time to atleast look up how this is affecting me. she hasn't even done that and I've just been so angry with her this entire ordeal and I'm pretty sure this is the root cause of it. finally she's decided to order some books off of amazon about coping with PCS but seriously I just want her to read online about it. and it'll still take atleast a week for the books to come. oh well atleast it's a step.

and that's just my mom. I can't even imagine what people who don't live in my own house think. I'm getting really tired of telling people "well I fell and hit my head on a bench in September." "well I rolled my truck 3 weeks ago and ripped my pants and you don't see me drooling in the back of class" "well... you can just shut up" Oh man. It's just so hard explaining what's wrong with you to someone, who only truly half cares, when no one has actually explained what's wrong with you to yourself...


I'm thinking that I'm taking the whole "This is a safe place to vent" a little to seriously ha ha :P Oh well.. now I'm all flustered and can't remember questions or anything again... Oh well Thanks again guys for all the help It is much appreciated

It breaks my heart for me to hear that you don't feel supported by your mother. She's the one that knows you best and should be at your side through this injury.

As a mother, this has been the MOST difficult thing I have had to deal with all my years raising my kids. My youngest has had her fair share of difficult behavioral struggles and a number of surgery due to her cleft lip. All of that seem so easy now compared to dealing with a head injury. My oldest is very driven, motivated and an outstanding student. She has desires become an orthopedic surgeon. She's also an outstanding equestrian and rides jumpers. It breaks my heart that she can't do the things she loves. I get frustrated often when she won't/can't get out of bed in the AM or when she has trouble falling asleep. I worry when I don't see her memory problem improving. I am thankful that my daughter is not severely injured but I do miss my "old" daughter.

So, I guess the point of my ramblings is that your Mom could be also be having a really hard time with this as well. Her way of dealing with it could be avoidance. (Ok – I’ve gone the other extreme and have researched this topic endlessly. There is probably a better middle ground.) Maybe it would be helpful for you both to work with a therapist to work through some of this together.

hi kat

fluid about 6 or 7 average glasses that induces coffee juice ect but know need to over do it

the grouchy snappiness ,well it probably akin to someone having tooth ache ,it can make you that way

the thing with nuro psyche test is they only tell you the problem not the fix, this maybe of use to you to gain more time ect with your school work , and perhaps help your folks understand whats going on with you


NEUROPLASTICTY

will sort you out in the long run. it will just take longer than you or others may want , study hard if you are able but do not over do anything ,it really can do more harm than good in the early stages

trust me I know from my own experience