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