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

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Old 11-29-2011, 05:42 PM   #21
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Default Take brain injury very seriously and be patient

Someone with postconcussion symptoms needs to be very careful with their condition and take resting and getting better seriously. They have to be patient and not risk making things worse by returning to normal activities too quickly.

The brain is a delicate and mysterious organ that recovers slowly. If your brain has been hurt and you feel exhausted, then you just have to rest and that's an end to it. You might not notice an improvement every day, but you still have to go on resting and trying to recover.

The trouble is that people do not realize how serious a blow to the head can be. It could alter the rest of your life dramatically for the worse, or you could recover. So, the most important thing is to give yourself every chance of recovery, whatever that takes.

I didn't realize what a serious injury I had. I didn't even go to hospital at first. Now it is four years to the day since my injury and I am still trying to recover. I am taking the injury seriously now.

That is the first thing that I would have done differently. I would have gone directly to the emergency department. It is doubtful whether I would have gotten any treatment that would have made a difference, but it might have, and that possibility would have been worth the effort. I think that giving oxygen in those early stages might help. It is certainly worth a try.

It is really worth making every effort to try to influence the outcome in a positive way. Any small difference that can be made will last a lifetime.

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Old 11-29-2011, 05:48 PM   #22
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omg 4 years...what are your current symptoms? How much are you able to do?? What percent would you say you are at in relation to be completely healed?
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Old 11-29-2011, 06:21 PM   #23
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Thanks for the concern, but I won't reply at length in order to keep the thread mainly for advice for newer members from those of us who have had the condition longer. Briefly, I mainly have headaches, malaise and fatigue, but very much milder than previously, and I can now do part-time work. (I would be happy to give further information but email might be better.)
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Old 11-29-2011, 11:39 PM   #24
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This is a great topic, and an easy question for me.

I wish 35 years ago someone had told me that a brain injury could change my personality. I could have started addressing extreme anger issues. Now it is too late and I have legal problems.

Last edited by Kenjhee; 11-30-2011 at 01:07 AM.
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Old 11-30-2011, 12:40 AM   #25
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I was blessed in that I was evaluated at Mary Free Bed in Michigan within the first few months and my neuropsych is one of the top pcs drs.

My family hired (paid for by insurance) an evening caregiver/coach for me. I would spend about 4-6 hours a day at Mary Free Bed in PT/OT/Speech/Psych with another two hours of driving. They hired a driver who would stay at the hospital with me (also paid for by insurance) who was a cheerleader for me.

My evening caregiver/coach would help me organize and prioritize my evening activities. She was good at evaluating my functioning level and making suggestions. MFB had me doing several hours of homework a night, everything from neck stretches (my favorite) and dizziness exercises (my worst) to speech practice where she would hold up flashcards with animals or objects and I would have to say what it was.

(I remember elephant was very hard for me. I would always call it a gray, big, round, ears, circus, elephant ears, elephant. I went through that list everytime for several months to say elephant.)

Getting a key person who can effectively evaluate a functual level and coach activities is important.

Another problem for me was, and still is, memory and putting things in time context. I would say things like "no one has even called me for a week" (actually it never came out that clear with my speech problems) and my coach would remind me that I had two visitors and one phone friend call already that day. Taking a blank calandar and documenting all visits and phone calls by just marking the person's name and a V or C for visit or call is a helpful way to remember contacts with people.
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Old 12-16-2011, 07:12 PM   #26
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Default Terminated due to PCS?

I am newly diagnosed with Post-Concussive Syndrome stemming from a MVA on 9/27/11. For a couple of months it seemed my main symptom was having an extremely hard time getting out of bed at my usual time in the morning. As time went one, I had infrequent (since 9/27 about once every 2-3 weeks lasting 15-30 minutes) periods of impaired conscious or a brief loss of consciousness. It never affected my work performance except during those 15-30 minutes once or twice a month. I was put on forced medical leave my my employer where I gathered all necessary documentation regarding my diagnosis and the symptoms surrounding it and what to expect. Before and after receiving doctor documentation, they have regarded my brief losses of consciousness as a "Behavioral Workplace Issue" citing I was "sleeping at my desk." This last episode on 12/14/2011 I was terminated for "lack of alertness" during work hours. They would not allow me to make a rebuttal on my memos or "write-ups" nor did they change their tune after getting multiple doctors sending in documentation citing specific diagnosis' and what my employer could expect from these syndromes. It almost seems equivalent of firing a patient with documented epilepsy who has a seizure at work and was unable to fulfill their job requirements during the periods of the seizures, which was the only time I was unable to fulfill my job requirements. The rest of the time, I was an overachieving employee going over ever goal they set for me and receiving a specific certification that same day I was terminated which I studied for while on forced medical leave and under extreme stress due to them having me run around town getting multiple doctor's documentations because each one I got wasn't good enough even though it was exactly what they asked for. Is this legal? It doesn't seen like it would be.
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Old 12-17-2011, 11:49 AM   #27
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Make sure to take precautions about keeping your immune system in check.
My body has expended so much energy into helping my brain recover that in just a couple of months I've had four nasty colds, stomach flu, and just general malaise.

Sick as I type this...again. So, I'm drinking more juice for the vitamin c, eating better (healthier) foods, limiting my exposure to people who are ill-which I have been doing anyway. I have a bro-in-law with multiple myeloma who is getting ready for a stem cell transplant. Re-evaluating my supplements and vitamins and trying my very very best to get sleep at night, which is difficult at best.
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Old 12-23-2011, 05:09 PM   #28
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Default A little help regarding getting sick

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.

Tina Sullivan
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Old 01-04-2012, 12:09 AM   #29
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Originally Posted by Concussed Scientist View Post
Please use this thread to post advice for new members along the lines of "if only I'd known that when I first got post-concussion syndrome".

Most of us are probably struggling with our symptoms trying to cope with our situation and find the best treatment. It is a learning process that unfortunately takes a while, but we do learn things along the way, things that would have helped us had we known them at the beginning.

Here is your chance to pass on what you have learned to any new people to this forum, who will doubtless be hoping that someone has some guidance for them in dealing with this horrible condition.

Perhaps this thread might help others not to waste time and energy before finding something that helps them.

Everyone is different and in different situations but, if enough people share their experiences of what they have learned, perhaps new readers will be able to pick out something that will work for them.

1. Don't waste time with a regular doctor who doesn't understand concussions or pcs

2. Never push through the pain. When you are feeling the heaches. Fatigue etc. The best thing I should have done is not try to push through school and work and take time off to just recoop. In the end the overstimulation sets your brain recovery back farther.
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Old 01-05-2012, 05:55 PM   #30
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The Dr.'s kept telling me I'd be all better within a few hours or a couple of days, then it turned into a week or two, then three to four weeks after that. It's been more than 18 months now. I am still improving, but it can take a LOOOOOOONG time to heal and the Dr.'s have no way of knowing whatsoever how long it's going to take, or whether you'll ever recover to a point that's acceptable to you.

But I believed them! I really thought I was going to be all better and I spent all my savings while I was on vacation and then I couldn't work for a year! I wish I had not gone on vacation (even though it had been planned for months) and just stayed home and saved my money.

Try not to go shopping at all... for some reason, especially for the first year or so, I wanted to purchase everything that attracted my eye, it didn't matter whether it was practical or not. If I was in charge of groceries one week I'd buy twice as many things as we needed which was a really bad idea for many reasons.
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