Traumatic Brain Injury and Post Concussion Syndrome For traumatic brain injury (TBI) and post concussion syndrome (PCS).

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Old 03-10-2013, 10:20 PM #1
Lui Lui is offline
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Default please help an really desperate exchange student!!

Hi!

So, I hope someone will be patient enough to read all of this please.
So I was just having a panic attack again and here I am sitting now and thinking how things will work in Germany?
School is hard I will be in my junior year and have to get really, really good grades because I have big dreams about my future. I am having three months left in the US. I HAVE to get better in this three months. I will be able to rest one whole month in Germany but school in Germany does not care if you have problems with health. Show good grades or you're out.

This is my concussion story in short form:
On the 10th september, exactly 6 months ago, I headed a soccer ball really wrong. I got a headache after heading this ball. The next day I felt not like myself, like in a dream, I had slurred speech, light, sound sensivity , lightheadedness, was really emotional. I went to my atheltic doctor right on the next day. I did the baseline test that was showing a mild concussion.
He send me to the consussion clinic and said all the usual stuff what to do and how to do.
It was my first month in the states and I was staying with the worst host family on the planet. They are messies. I hope you call it like that. They really are. Instead of putting me in a quiet, dark room, I was put in the sun room with my three hyperactive host siblings. I wasn't taking medication how I was supposed to do and did all the wrong things. I wasn't having three meals per day either and had to walk the dog/babysit with concussion. Anyway, I felt great after one week and returned. But 10 days after my concussion I felt like crap.
They took me out of school for 2 more weeks and I spend this two weeks in a depressive horrible environment with a depressive host mum, violent host dad and the three kids jumping on me. I had the most horrible two weeks of my life. After this thee weeks I went to the emergency room and was diagnosed with pcs. Two weeks later I pretended to be alright so I could escape from my host fam trough starting basektball.( I have some stupid post in this forum about my decision, if you want to check it out.)
I had really mild symptoms when I started playing. I stopped playing after three weeks because I saw what a stupid decision I made.
Slowly I added more and more new symptoms like flashes, tingeling, ice pick headaches.
I also decided to change hosts(best decision I ever made) and had to move to my rep for two weeks. I organized the new family by myself because my organisation wouldn't help me and wanted to send me home. I was having a lot of stress+had to integrate in the new family, put on a smile and be fun for them. My brain was never, ever so much tortured and I felt like **** all the time. I developed a lot of empotional problems.
I went to a neurologist after I stopped playing basektball. He was really positive about me getting better. One month later I still did not improve. He was thinking about seizures. He ordered an MRI and an EEG for me. Both negative.
Now, two months later, I still did not improve a bit. I started vistibular theraphy four weeks ago and every doctor thought that would be the cure! The only thing that got better was my balance but no other thing.
I am eating healthy, wearing ear plugs everywhere, even while class, I don't even talk to people anymore and isolate myself, because it extremly increasing my symptoms when I am talking to people. People, even teachers, in high school avoid me and started hating me. I actucally give a *****, it's just making me so mad, that nobody understands. And I am not doing/can't do homework because of that either(my symptoms).
I went to the concussion clinic last friday and had an emotional break down. I was crying so hard. They referrred me to an neuro pschologist. Beside that they told me I should be fine. Since one month I am seeing a counsellor. I am diagnosed with depression and PTSD and stong anxiety. That's my situation so far.
My situation right now:
All the concussion baseline tests, I took, were above average, showing that I am not having cognitive damage, and I feel like that too, but as soon as I want to concentrate I get horrible ice pick headaches+normal headaches. Like if someone would stab you in the head with a real sharp knife, I get a white fog in front of my eyes, I get tingeling everywhere and extremely lightheaded and dizzy.
I am always lightheaded and I feel like in dream. I am sensivitive to light and sound. My feet and left hand are like always tingeling and I am having ear ringing. My worst symptom is visual snow and dream feeling and falshes of light, floater+being fatigue.
Next to the concussion I am having hormone problems. I don't like talking about that but screw it: I have too much testorone in my body(yes I am a girl) and never had my period. I was taking the pill in my first month in the US but stopped after I had horrible, bloody period(won't go in much detail). I will see a gynocologist this week.
I don't know what to do anymore. Sometimes I am so depressed I just wanna die and think about killing myself. How will I ever heal in three months with such a psychological health, how will I ever accomplish my dreams with such bad symptoms? How will I ever heal with hormone problems? How will I'll be ever able to heal in gerneral?! How will I be able to integrate in a new class in Germany with that kind of health ?
I am writing all that stuff down because I have never been so desperate. I can't break up the exchange year because would have to go school and school is hard( I just took fun classes here), you guys have better concussion knowledge than the Germans.
So, I need any advise on how to get healthy or on how to get hope. I would take medications, or anti depressiva, but my parents are strictly against that! Please, I would try out any kind theraphy. Was lately thinking about vision theraphy because I am having problems focusing with my eyes and I never see the "whole image" of the world. People say, that you could heal with a positive attuide, I am far from that.
My parents would pay for any kind of treatment! I know, resting is the most important thing and I am doing nothing else, I don't have a life.
What do you guys thing, I can't do that anymore. I would be willing to try out anything!
I hope someone will read all of this! If yes, thank you! Sorry for bad english
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Old 03-10-2013, 10:53 PM #2
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Lui I'm so sorry you are going through all this when you should be having an exciting adventure away from home! Don't ever apologise about your English! Its good and far better then my German!

I'm hoping Mark or someone will point you in the right direction for getting your hormones checked. If your parents will pay for anything and you want to get it all done before you get home then getting them checked couldn't hurt. Getting your eyes checked is a great idea and may bring you some relief of symptoms or relief knowing there's nothing permanently wrong with your eyes.

I think the biggest (and hardest to do!) advice I can give you is to try to calm down. Don't worry about three or four months from now because worrying is obviously making you worse and is not accomplishing anything. You should get appointments with the neuropsychologist not just for testing but to help you through this and counsel you. They can maybe explain what's going on and help calm you down.

You say you can not take medications but have you tried meditating or other relaxation techniques? You need to find a way to stop the negative thoughts in your head. Sometimes if I find myself dwelling on something that's upsetting me by repeating it over and over in my head I say STOP either in my head or out loud and I make myself think of something else or take deep breaths.

Please do not worry that your life or career is over! The odds are more in your favour that you will be just fine! I know how scary it must be. You've had a very stressful time over here in a strange country!

hope tomorrow is a better day for you. <hugs>

CC
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I'm a 39 year old, female, accountant. On July 2, 2012 I crashed my bike at the end of a 65KM road ride. I was fine that day but woke up the next morning to my current world.

Ongoing symptoms include: dizziness, blurred vision, light and noise sensitivities, cognitive problems, uncontrollable emotions/depression/anxiety, headaches (but they're getting better), mental and physical fatigue, difficulty communicating and sleep disturbances.

Currently seeing a fabulous Neuro Psychologist and vestibular physiotherapist and hoping to soon see a neuro ophthalmologist. I am currently doing 20 minute stationary bike rides daily, 20 minutes of meditating, 15 minutes of Lumosity and lots of resting. I have not been able to work or drive since the accident.

The things that have helped me the most since the accident are vestibular therapy, gel eye drops (for blurred vision, sensitivity and dryness), amitriptyline (10mg), and meditating. I am finally starting to see some slight improvements and am hopeful!

My brain WANTS to heal itself... I just have to let it and stop trying to get better!
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Lui (03-11-2013)
Old 03-10-2013, 11:17 PM #3
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Default Hormones

Go to your OBGYN and tell them your situation and tell them you need to get EVERYTHING TESTED from vitamins,hormones,thyroid,Pre menopause and they will send you to lab to get that blood taken and follow up with them about results.I stopped taking BC when I was trying to figure out what was wrong with me because I thought it was the birth control.

I understand your parents are strict about meds but you might need to get a advocate to speak to them about your life or death situation....I am not trying to push meds on you but this anxiety could turn to a lot of other things and if you are thinking suicide I think your parents need to know.

Of course you do not want them to know but you do want to stay alive and they want you to stay alive.

My parents had to meet with my neurologist about me because our parents generations swept a lot of these things under the rug and were told they would get better....reality you might need a crutch to help you because your central nervous system has changed because of accident.I know it is hard but it is really hard to keep these negative feelings inside without help.

I hope you can find some inner peace and find this as help
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What Happened: In 2011 I was in a MVA
.


Symptoms: Physical: I am always cold in any season!!I cannot tolerate anything pressure on my head(sun glasses,hats)longer then a hour,Lock jaw/Displaced TMJ, Dropsey, Hands go numb, Arms go numb, back of head numb (when asleep),Muscle spasms in face & upper body,migraines, concentration headaches, dizziness, nausea, neck and back trauma (from accident), tinnitus, extreme light sensitivity, noise sensitivity, EXTREME fatigue, impaired vestibular system, balance off, Pupils NEVER equal, disrupted sleep cycles,speech problems.

Cognitive: Cognitive Behavior, Brain fog, impulsivity, speech problems, word finding problems, slowed processing speeds, impaired visual memory, impaired complex attention

Emotional: Unable to handle stress or overstimulation without getting extremely irritable or angry, easily overstimulated, MAJOR depression, major anxiety, Panic attacks

Treatment so far: Treatment for PCS,PTSD,Depression & panic,Vestibular therapy, Physical therapy, Vitamin Schedule,Walking,No Dairy, No eggs, No caffeine, No artificial coloring, Sleep with 2 pillows, Very little sugars consumed, Eat healthy,No alcohol, Medications, limit stress and overstimulation.

~*~Learn to treasure yourself and your Divinity. Be willing to accept yourself completely. Be yourself, be graceful, be kind, be wild, be weird ... be true to yourself~*~
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Old 03-11-2013, 01:19 AM #4
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Lui,

Have you tried to get a referral to a women's hormone specialist who uses bio-identical hormones ? I have posted a link to a good referral system at https://www.womensinternational.com/..._referral.html

You want a targeted hormone treatment not a shotgun approach. Look in the referral for a women's health specialist who does not focus on OB/GYN. They tend to get beyond just reproductive hormones. You may also look for a neuro-endocrinologist. There is a thread that has a good article about neuro-endocrinology and brain injury.
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Old 03-11-2013, 09:35 AM #5
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Lui,
Please read my post under caregivers burnout. You are pushing yourself to the breaking point. All these symptoms you are telling me - problems with period, feeling like you are in a dream, ice pick headaches, thoughts of suicide, mental breakdown -all of these are warning signs. Your body is telling you that your doing too much. I know it is hard to put your life and dreams on hold but you must if you want a future. I had all the symptoms you are describing right before I totally broke. I ignored them, used medication to cover them, pushed myself too hard. If you read my post under caregivers burnout you will see the consequences of that bad decision.
I think you have hope for your future and your dreams if you get the rest and care you need now. In my opinion you need to get out of school for now and go home to your family. Rest until you are recovered, however long that may take. Then resume your life a little at a time so you know what you can and cannot handle. Trust me there are many people in the world that give people second chances and are sympathetic to health reasons. You will be able to pick right back up where you left off to take time out for your health.
I feel for you. I have been there (different situation) but still the same. Please listen to what I am saying to you. You can take time out to recover, you must.
Brain
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Brain patch.
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Had MVA in 2006 resulting in post concussive syndrome manifested by cognitive impairment, chronic pain/ fatigue. Chronic pain of head, neck, back, left leg.
Other problems include REM sleep behavior disorder, nocturnal frontal lobe epilepsy, chronic migraines associated with nausea/vertigo, episodes of passing out, hypoglycemia, liver dysfunction (had accidental overdose of acetaminophen in 2009) had liver and kidney failure, hernia, degenerative disc disease with compression of nerve root, PTSD, and other problems associated with functioning problems from traumatic brain injury (light, sound sensitive, easily overloaded, easily distracted, cannot focus, anxiety problems etc.)
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Old 03-11-2013, 09:56 AM #6
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It gets better!!!! I am now 18 months past my accident and my life is SO different than it was at 6 months.

It gets better!!!! At the six month stage I had to live hour by hour, which seems to be the case with you. It will not always be that way. But for now, have a strategy to cope with each hour, and see that as a success.

You will get better for sure. Six months is still very early, especially when the care giving and medical assessments are not yet all in place. It took me over six months to really understand what happened to my brain. Some things are still undiagnosed. So hang in there.

See success in your baby steps. In surviving each hour so that at the end of each day you can know you are one day closer to healing and enjoying life again.

Thinking of you!!!!
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What happened: Legs pulled forward by a parent's hockey stick while resting at the side of the rink at a family skate....sent me straight back. I hit the back of my head (with helmet) on the ice, bounced a few times, unconscious for a few minutes. September 11, 2011. Off work since then…I work part-time at home when I can. It has been hell but slowly feeling better (when I am alone☺).

Current symptoms: Vision problems (but 20/20 in each eye alone!) – convergence insufficiency – horizontal and vertical (heterophoria), problems with tracking and saccades, peripheral vision problems, eyes see different colour tints; tinnitus 24/7 both ears; hyperacusis (noise filter gone!), labyrinthian (inner ear) concussion, vestibular dysfunction (dizzy, bedspins, need to look down when walking); partial loss of sense of smell; electric shocks through head when doing too much; headaches; emotional lability; memory blanks; difficulty concentrating. I still can’t go into busy, noisy places. Fatigue. Executive functioning was affected – multi-tasking, planning, motivation. Slight aphasia. Shooting pain up neck and limited mobility at neck. Otherwise lucky!

Current treatments: Vestibular therapy, Vision therapy, amantadine (100 mg a day), acupuncture and physiotherapy for neck, slow return to exercise, magnesium, resveratrol, omega 3 fish oils, vitamins D, B and multi. Optimism and perserverance.
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Old 03-11-2013, 03:35 PM #7
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Thaks guys! You're posts are really ecouraging! I know it's gonna be better at soe point. I was wearing sun glasses in school today and had less falshes and floaters than usual. That shows me that it can get better, even if really slowly.

If I break up my mum would force me to school. She is that kinf of person. She thinks I am weak and all symptoms arer caused by anxiety. Maybe that's true, I don't know. It's better when I stay here.
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Old 03-11-2013, 05:56 PM #8
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i have the visual flashes too. ive had them for 13 months now sometimes its worse than other times but it shows know signs of going away. i cant believe i just type 13 months wtf its depressing but ive learned to just deal with them. they are the tell tale sign im still concussed i think

anyway im 99% sure the flashes are because of migraines. my nuerologist said im stuck in a migraine state. ive tried meds but no luck so now im basically just living day to day hoping it goes away when i wake up one day

all my other symptoms are gone except for my visual ones
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