NeuroTalk Support Groups - Things you wish you'd known when you first got post-concussion syndrome.

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- Traumatic Brain Injury and Post Concussion Syndrome (https://www.neurotalk.org/traumatic-brain-injury-and-post-concussion-syndrome/)

- - Things you wish you'd known when you first got post-concussion syndrome. (https://www.neurotalk.org/traumatic-brain-injury-and-post-concussion-syndrome/140214-wish-youd-post-concussion-syndrome.html)

I wish I didn't...

1) Not listen to my doctor and think I could go back to work earlier
2) Lifting weights at the gym after a few days from being released at the hospital!

I was injured at work at the end of November, 2011. I have found this thread very useful – especially the points on getting the right kind of doctors to begin with. I would have never thought of that on my own.

I want to add two points.

1. A friend had me start a daily journal right from the beginning. I write down what symptoms are notable for the day, especially with glitches in memory and with speech. I write down the highlights of each doctor’s visit including what medication I am taking at what dosage and what they say is next.

I have a treating physician and a neurologist and they both get copies at each visit. They both genuinely appreciate it because hey have something they can point to concretely to show what progress there is and what progress there is to be made. In the absence of a positive CT or MRI, a journal helps them explain why I still need to be under their care and why am not yet cleared to drive or go to work. They have in writing and in front of them during the visit what the other doctor is doing. I thank my friend for getting me started this way.

2. I take a friend with me to every doctor’s visit. (Not necessarily the same friend each time)

I may think I am fine when I am with the doctor. By the time I have gotten to the car, I have forgotten the important facts from the visit. I find that my judgment of what is important isn’t necessarily the same as the judgment of a friend without a brain injury. My friend also can help express to the doctor some of the challenges I face, especially when I am not communicating clearly in the visit.

* I really wish that I would have discovered something like this forum from the beginning, but then again, I didn't have the short term memory for it.

* That my parents had somehow known to take away my phone and computer to an extent, or at least monitor what I was doing better. I had short-term memory loss for months. I had a phone scam occur, and did a lot that I do not remember at all.

* That I had had the right doctor from the beginning, but that's not always the easiest thing to figure out.

* To know that it could possibly take years to recover and that it could be permanent. The many false promises of "only 3 more months" killed me, and I feel like I wasted time. I could have been coping instead of being in waiting all the time for it to just disappear.

* Talk to your loved ones or people you are close with about how you're really feeling. Get it out. If not verbally, than email them or something.

I felt like I was talking about it all these years, but recently my father said something on the phone that hit a nerve with me. I emailed him a very long email about everything I was feeling and going through and it has helped. He thanked me for really explaining, and it took me over 3 years to do that.

I wish that I had worn a marshmallow helmet every day and had realized that when I was starting to feel better was not the time to start doing stuff again.:(

I wish that I had known that it was OK for me to feel awful.;)

Quote:

Originally Posted by Margarite (Post 725756)

This is an awesome idea!!!!!

1) Realize that your doc probably doesn't know anything about concussions.

2) There really is not much to do for your problems

3) DO NOT GET A 2ND CONCUSSION

4) Treat your symptoms
If you are dizzy walk slowly and wear good shoes
If you have trouble with light wear sun-glasses
If you have trouble with noise try having some white noise to help

5) Have a daily journal of your symptoms throughout the day

6) Realize that people don't know how you feel, even when you tell them

7) You may be lucky and heal quickly, but it may take years

8) Research online there is a plethora of info

9) Realize that it you can learn to live with this...You are OK

10) You may have to stop doing sports (dancing), go to the gym instead

11) Pray, pray, pray!

12) Stress kills! Keep your neck loose not tight--best advice I got from a doc!

Finally just realize that you will be fine!
Don't hit your head again or it will get worse for a lot longer, but even then it will go away or you will learn to cope and live with it.
It can make you either a better or a worse person...your choice.
Sure it stinks, but as long as you have had a CT and MRI to prove that there is no bleeding or breakage then you won't die and you can become stronger from it.
Offer your time to others. This condition can cause you to become very self-absorbed, giving your time to others or even better giving your time to others worse off than you helps with the selfishness.

Good luck....I know it is a daily struggle. I am on month 23...It is still constant headaches, light and sound sensitivity, dizziness sometimes, nausea daily, trouble with concentration, worsening with activity, and constant fatigue. I got this from falling off a horse my freshman year of college, got 6 minor concussions afterwards from silly things within a year of the first. But I am in my junior year of college and plan to go to graduate school.

This has helped me to realize others' pain when they are suffering, it has made me want to go into nursing, it has helped me to learn how to manage my time better, and how to rely more on myself.

It is your choice.

Good Luck,
Margarite

This is all still true a year latter when I now have 10 concussions and am about to graduate if I can make it through the next 3 weeks.

If you wear glasses , ask your optometrist about Velvatint (please correct me if I am wrong in the exact name, memory issues as we know!) Basically they are a lightly rosy tinted lens which actually reduces the glare of flourescent lights! Granted, this does nothing for the sun, nor for those who do not need spectacles, but they have helped me immensely andi no longer have to wear my sunglasses indoors! (and the tint itself is not obvious at all to those looking at you)

What does a neuropsychologist do? I'm being sent to see one if the workman's comp will pay for it.

QUOTE=NourishYourNoggin;834992]HI:
I'm the mom of a 14yr old teenage boy who has been recovering from PCS for 1 1/2 yrs. As a MTBI Literate Integrative Health & Nutrition Coach as well - I can share with you that what you choose to eat can profoundly impact your brain and body's ability to heal.

We are fortunate to have Dr. Diane Stoler as our Neuropsychologist (she wrote the great book "Coping with Mild Traumatic Brain Injury") and she puts all of her TBI clients on a particular diet.

Yes, the body uses an amazing amount of energy keeping it together as you are trying to heal. Good quality protein is very important for your brain and - you might not want to hear it - but eating sugar can reduce your immune system's ability to fight infection by up to 75%. Vitamin C and glucose are chemically constructed the same and will compete to get into a cell in your body. (google sugar and the immune system and you may be very surprised)
The sugar in the juice that you are taking could be counteracting the good that you are trying to achieve. Better to take a vitamin C supplement.
Also, my son takes 3mg of Melatonin and magnesium to help naturally with sleep at night.
Hope this info helps.

Warmly,
Tina S
Nourish Your Noggin[/QUOTE]

Villagecrest,

A Neuro Psychologist will often conduct a Neuro Psychological Assessment (NPA). An NPA is a battery of tests used to measure cognitive, memory, motor and processing skills. They can be very good if done by a good NP. Some NP's are biased against prolonged concussion symptoms.

You should talk with a WC attorney who understands concussion/mTBI to get some help with the issues of an NPA. I hope you have acces to a good WC attorney.

My best to you.

It is very scary- your not alone. Your not a hypochondriac.

Quote:

Originally Posted by Margarite (Post 872429)

This is all still true a year latter when I now have 10 concussions and am about to graduate if I can make it through the next 3 weeks.

I fell face first and hit my forehead on the concrete last Friday at the local gas station! 12 stiches, bruises, scrapes, lots of swelling per my forehead, eyes, cheeks!! Black eyes for three days! However I was really thinking I would heal up and life would be fine. CT SCAN was clear. However I went back to the Dr of Friday let her know how dizzy I am. I am not sure but maybe mild confussion, heavy head, then light head. Noise is awful! Can bring myself to do my morning walk in the heat... just seems like I can barely walk around the house! She diagnosed me with Post Concussion Syndrome! UGH! What the heck is that?

Your post has given me some good insight! It may not go away in a couple weeks! Be positive! Thank YOU!