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


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Old 03-15-2013, 10:18 PM #1
MUMZY MUMZY is offline
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Default want to talk to ppl who have pcs!!

This is my first post. I am desperate to talk to people who have the same problems as I do.

I slipped on ice and fell backward hitting my head on concrete in November 2011. MRI and CT scan both came back fine. I was told at the hospital I have a concussion. You'll be fine in a week. Two weeks later no improvement... back to hospital and was told I have pcs and will be fine in a couple of weeks.

Year and a half later.... still headaches exhaustion memory problems, intolerance to light and noise. Can't go to the store or anywhere really because flourescent lights too bright... I get head pain confusion, can't think properly, word finding problems.

I went for an EEG because the neurologist thinks I might be having absence seizures. LIGHT TORTURE!!!! Anyway I'm waiting for the results. That was yesterday morning. I have felt like heavy and limp exhausted since the EEG. Almost like being drunk or doped up. I don't drink. I'm not doped up. Anybody else feel this way after an EEG?

I take effexor and clonazepam for anxiety and depression but have been taking them both since before the concussion. I'm scared I will never be like I was. I feel "stupid" a lot. I can't clean the house, cook, and be energetic and busy like pre-concussion. I feel like people don't understand. There are no support groups here.

Thank you for ALL responses.....
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Old 03-16-2013, 01:17 AM #2
Mark in Idaho Mark in Idaho is offline
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MUMZY,

Welcome to NeuroTalk.

Clonazepam and concussion will leave you fatigued 24/7. The Effexor should take care of the anxiety issues. Maybe you don't need the clonazepam. I was on it and know how it makes the day miserable.

There are many other things you can do to help recovery. Check the threads "Vitamins" and "NeuroEndocrinologist"

What other things have you done to help with recovery ?

What symptoms do you have besides fatigue ?

My best to you.
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Old 03-16-2013, 03:44 AM #3
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I have PCS and would give you this advise:

Listen to your body if you need to rest, so get plenty of quiet rest.
Avoid too much TV and computer.
Avoid exercise until ready.
Wear earplugs.
Fatigue and headaches are a sign you are doing too much.
Wear sunglasses or hat in the supermarket.
Do things when you feel best e.g mornings.
Keep a diary to discover what triggers symptoms.
Try to avoid triggers.
Concentrate on the things you can do and avoid the things you cant.
Gradually increase your activity.
Do not worry about symptoms - this only increases them.
If you need it get a suitable anxiety/painkilling medication.

Last edited by mouse1; 03-16-2013 at 04:26 AM.
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Old 03-16-2013, 09:14 AM #4
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Default Similar situation

I also slipped in fell but in oct of 2012. Workers comp case, so the first four months they kept on telling me I would get better and I didn't. I didn't start to get help til month five.

I worked way to much the first five months. Not full time but almost. Before injury I worked two jobs. About 50 hours a weeks, one as a fitness instructor.

Now I have started a concussion rehab program with vestibular rehab. I only go once a week. But they did a lot of testing to find out what is wrong, where I am at and what I need, RATHER than just guessing and sending me home.

I have learned to ACCEPT that this is a serious injury that isn't going away next week. I need to change my daily schedule. My therapist came up with the bright idea of trying two days of work and then one day off. Part of my problem is that I love my job and I want to be there every day. I am a high school art teacher. I will sacrifice my personal life for my career.

I am also trying lots of work around s. I think that's what mark calls them. I ordered lots of cool sunglasses, wear earplugs, turn off most of the lights, quit doing things that don't need to be done...

I also eat incredibly healthy, take supplements and don,t drink alcohol.

This last week what has helped most is just trying to let go. Let go of the anger. Let go of the past... I signed up for oprahs 21 day free meditation challenge and they send you a thought of the day. It just helps me to stay positive. My students at school are absolutely amazing! But it is also so sad that SO many of them have also had concussions!

Symptoms: I usually feel like I have a really bad hangover. Funny thing is, I hardly ever drank because I never wanted to waste a day on a hangover. I am having a peaceful morning, I usually can't type this much because I also have lots of visual symptoms too.
Hang in there
Su
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Old 03-16-2013, 10:56 AM #5
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Default I feel your pain

I have been dealing with concussions since October 2010 and I've had three since the first one. By some miracle, I have gotten a lot better recently, so recovery is possible. My pcs symptoms got much worse after concussion #2 in December 2011, but I didn't really understand what was wrong with me and didn't rest or seek help. When my pcs symptoms helped to cause my August 2012 car accident, my husband confronted me about my symptoms. I sought help and took disability leave from work. I have been off work for 6 months, and I am doing MUCH better. My only remaining symptoms are related to vision problems due to the multiple concussions, and I am now doing vision therapy for that. I still have Light sensitivity and dizziness when I make any quick movements. It has improved since I first had the dizziness. Originally i felt like the whole world was falling upward! So though i still can't dance, ride a bike, or swing on a swing with my daughter, I can function pretty well. I even vacuumed last week, which was a big deal to me!

Rest is the best thing you can do. I know there are financial issues involved, and you can only do the best you can do. Don't push through the symptoms. Slowly up your activity levels. Take care of yourself. Here is the post I made recently on the hope and healing thread: http://neurotalk.psychcentral.com/thread78902-6.html

Good luck!
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Old 03-16-2013, 02:45 PM #6
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Default Mark

Since we all have changes in our central nervous systems from our concussion or concussions we all respond to different medications differently. Example I was on xanax before my concussion and only concussion and after the xanax made me hyper now on valium I am no longer experiencing anxiety/panic.Before my concussion a valium would make me depressed.

You cannot say something will keep a person fatigue because it did yourself.
Everyones story is different some people might have 10concussions and some might had one.

Yes benzos have pros and cons just like every medication on the market
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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 03-16-2013, 05:33 PM #7
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Quote:
Originally Posted by MUMZY View Post
This is my first post. I am desperate to talk to people who have the same problems as I do.

I slipped on ice and fell backward hitting my head on concrete in November 2011. MRI and CT scan both came back fine. I was told at the hospital I have a concussion. You'll be fine in a week. Two weeks later no improvement... back to hospital and was told I have pcs and will be fine in a couple of weeks.

Year and a half later.... still headaches exhaustion memory problems, intolerance to light and noise. Can't go to the store or anywhere really because flourescent lights too bright... I get head pain confusion, can't think properly, word finding problems.
I feel like people don't understand. There are no support groups here.

Thank you for ALL responses.....
It's like reading my own story. I'm four and a half months post injury. WCB case here and it's not going well. You can get the short story in my signature line.

Depending on what part of Canada you're from some of us can help you with resources.

I'm on amitryptaline 20 mg at bedtime. (Brand name is Elavil) it is supposed to help with pain and encourage sleep. I think it's finally starting to help after about five weeks.

I go twice a week for acupuncture (pretty sure that's useless but the physiotherapy on my neck was worse, caused worse pain and brain issues)

Icing my neck and resting has helped me deal with never ending pain and cognitive deficits.

Next week I should be receiving my prism glasses since I tested positive for convergence insufficiency. (Eyes don't work as a team) I'm hopeful as many people report vision correction can ease the workload on the brain, thereby perhaps easing some symptoms.

My only "obvious" marker as an injured person is my acute stutter which is getting better. I'm both relieved and nervous that my only obvious symptom is fading since that means doctors will treat me even worse.

I've had atrocious care from doctors. Words that make my head spin and make me wonder about my safety in the care of medical people who don't care if I live or die, whatsoever, let alone my quality of life.

You're not alone. Welcome here.
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About it: October 26, 2012 I fell backward on an icy parking lot at work. I was on Workers Comp for 9 months. My PCS : everyday headaches became once in a while headaches, and neck pain became manageable. Still have occasional mild dizziness, sometimes fullness in the ears, convergence insufficiency, sequencing struggles, short term memory struggles, verbal processing delays. CT neg, MRI neg. Therapies: prism glasses, acupuncture, icing neck, resting, supplementing, Elavil 20mg at bedtime.

NEW: Completed 12 weeks of physical therapy and returned to work full time.

About me: I'm a marketing manager, a mom with a blended family and wife to a heart attack survivor. I believe my brain injury taught me more than it cost me. I'm grateful to still be me!
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Old 03-16-2013, 06:12 PM #8
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Quote:
Originally Posted by Su seb View Post
I also slipped in fell but in oct of 2012. Workers comp case, so the first four months they kept on telling me I would get better and I didn't. I didn't start to get help til month five.

I worked way to much the first five months. Not full time but almost. Before injury I worked two jobs. About 50 hours a weeks, one as a fitness instructor.

Now I have started a concussion rehab program with vestibular rehab. I only go once a week. But they did a lot of testing to find out what is wrong, where I am at and what I need, RATHER than just guessing and sending me home.

I have learned to ACCEPT that this is a serious injury that isn't going away next week. I need to change my daily schedule. My therapist came up with the bright idea of trying two days of work and then one day off. Part of my problem is that I love my job and I want to be there every day. I am a high school art teacher. I will sacrifice my personal life for my career.

I am also trying lots of work around s. I think that's what mark calls them. I ordered lots of cool sunglasses, wear earplugs, turn off most of the lights, quit doing things that don't need to be done...

I also eat incredibly healthy, take supplements and don,t drink alcohol.

This last week what has helped most is just trying to let go. Let go of the anger. Let go of the past... I signed up for oprahs 21 day free meditation challenge and they send you a thought of the day. It just helps me to stay positive. My students at school are absolutely amazing! But it is also so sad that SO many of them have also had concussions!

Symptoms: I usually feel like I have a really bad hangover. Funny thing is, I hardly ever drank because I never wanted to waste a day on a hangover. I am having a peaceful morning, I usually can't type this much because I also have lots of visual symptoms too.
Hang in there
Su
I also used to be a fitness instructor... who are you seeing in the cities for your vestibular rehab? Would love to connect.
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Old 03-16-2013, 10:47 PM #9
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My point to MUMZY about taking clonazepam was related to taking it with the Effexor. Effexor is a strong SNRI and should be able to reduce the anxiety. If it is inadequate, there are other SSRI's and SNRI's that could be tried. Taking a benzo plus the Effexor is a good excuse for fatigue. The Effexor alone can cause somnolence (sleepiness).

Benzos are often prescribed because they are faster acting and can be used as needed. Effexor takes longer to get full benefit and needs to be taken consistently. Often, doctors that prescribe these psychoactive drugs are GP's or PCP's and not psychiatrists. The goal is to settle the patient down.
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Old 03-17-2013, 12:44 PM #10
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Medications is a hard issue because there are so many and every dr has a different opinion and every person has different reactions. Each one of us has had to find what helps and what does not through trial and error.
It is good advise to see if cutting down or off of one of them is helpful with your symptoms.
I am so sorry you all are going through this as well as myself. What a trial. It is just so hard for others to understand too and that makes it all the more isolating and feelings of being judged. Lets not make anyone here feel more judged than they are already dealing with.
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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