Hi, I am new here. I'm going on 6 months of concussion recovery. Where can I get a copy of the TBI Handbook?

gingercat,

Welcome to NeuroTalk.

The link to the TBISurvival Guide is posted at the bottom of the Vitamins sticky first post. www.tbiguide.com

Please ask your questions in the main forum. Not many people monitor these stickies and you question can be overlooked. You can start your own thread with the button at the top left of the TBI/PCS index page.

Today marks 3 years since the concussion that turned my life upside down. While this injury has taken much away from me, at the same time I've had many gains and grown in ways that would not have been possible were it not for my journey with post-concussion syndrome. I'm grateful for the progress that has been made thus far, but acknowledge I have a ways to go before I'm back to my pre-concussion health and activity levels.

Its crazy to think I'm not even certain I've passed the half way point in the recovery process. I'd like to think I have, but it wouldn't be the first time I had that notion. I am, however, fairly certain that the worst is over. There are now more moments in a day where I am headache free, the fatigue is not as severe and I can handle more activities. While I have yet to go a full day completely symptom free; it is encouraging to see an overall improvement in symptoms.

The anniversary date of my injury naturally becomes a time of reflection. Looking back there are things I wish I knew when first starting out with PCS.

-First, the understanding that things really do get better. It can be hard to believe it at the start, when day to day, week to week seems to be a relentless barrage of unchanging headaches, fatigue and extreme sensitivity to sounds, lights or anything that moves. But things do improve, although often nowhere near the timeline we would like.

-Which leads to the next point that PCS is an ultimate lesson in patience. No one can say how long it can take, you just have to wait. And wait. And then wait some more.

-So thirdly, be skeptical of anyone who claims they can hasten the process; there is no intervention proven to do so. As my specialist advised me, there is nothing you can do to speed up recovery, only things to slow it down. Rest and listening to your body's limits are your best tools for recovery.

-And lastly, although concussion and PCS can be very isolating conditions at times, you are not alone. While it may seem like the rest of the world is "recovering" from concussion in 7-10 days and carrying on their merry way, there are plenty of unfortunate souls out there whose brains take significantly longer to heal.

I wish I had known:

Acupuncture helps a lot, but getting treated for the headaches directly can make them worse.

Turmeric can help with chronic inflammation.

Pouring cold water over one's head can provide temporary relief.

Get checked for a neck injury.

There is no point that the brain will be healed nor when no more healing will occur.

A lot of doctors no nothing about pcs.

Sometimes one's emotions are completely unrelated to reality. This doesn't mean that one is crazy.

Even if the pcs does not improve, one's ability to cope and techniques will, including the ability to circumvent using the injured part of the brain.

Headaches and anxiety are closely related. Alleviating one often times alleviates the other.

Everyone is strong enough to accept pcs.

I wish that I had known that I and my life was inalterably changed for the rest of my life, not just for a period of recovery time. I might have adjusted to that hard fact of life better when I was younger, not yet the senior citizen that I must somehow now impossibly navigate through this senseless maze called life.

Thanks for offering some hope, PCS Learner and for helping me as the caregiver to a once brilliant 16 year old who is going on almost a year now with very little recovery to date. Your post was the first that gave me some hope. Thank you so much.

Thanks so much for this post. I have been reading these threads for months now and have got a lot of solace from other commenters. I am now in my 7th month after a concussion and getting a PCS diagnosis.

There are two things that I feel would really benefit anyone who has recently had a "Mild Brain Injury" or been diagnosed with PCS. The first is that these two terms are very misleading and probably in the end not that helpful. The problem with a "Mild Brain Injury" is that once you get it, you don't really know how serious it is. It may last for just a few days or years, so the best you can do is take it very seriously and get as much rest initially that you can--even if you need to take three weeks off before you feel better. Doctors have been taught to be very reassuring about a quick and full recovery, but the truth is that nobody knows.

As for the PCS label, I think this is even worse. PCS is just putting a label on the 20% of patients that the medical field does not know what to do with. It gives us hope that our symptoms are only transient. This is excellent for those lucky enough to have their symptoms resolve in a few months. I think long term PCS will probably be found to be a set of those with some degree of more serious, as yet unresolved, brain stem injury along with whatever other brain areas may be involved. Every concussion is different, and while its great to be in the same boat, its also true that the experience is a bit different for everyone because we have different unresolved brain injuries. The PCS label is good for those in the medical field and those offering alternative treatments, but not very always good for patients who almost always battle unfair accusations of psychologically being weak or even worse malingering.

Try any treatment or therapy, but know that unless you are pretty confident that it is working, you should probably try something else. A lot of treatments can not only be ineffective but counterproductive. But never stop trying and never give up hope. I think the think for me that has been most helpful are prism lenses for vertical heterophoria and eye convergence problems. I also liked using Alpha Stim microcurrent therapy and purchased a device. These helped me, but probably only because of my particular injury.
You will find something that will help, but you must be patient and smart and most important NEVER GIVE UP!!!

This is a great thread, thank you so much everyone for sharing. I am over 9 months post concussion and still struggling. I came across this forum after the accident, but have only lurked until now. It is very nice to find a group that understands what I am dealing with and how much my life has changed because of one stupid hit to my head.

I had to learn the hard way that just b/c i felt good one day didn't mean i could go from 1 hr of activity (and by activity i mean visiting with friends, running errands, walking, computer, etc) to 6hrs of activity. after several setbacks i finally made myself stick to a schedule of 2-3hrs of activity a day, then have sorta reverse tapered it as i feel stronger. it means i have fewer "mountain" days where i think "i'm healed!" but also fewer utterly despairing days during setbacks.

Hi Mark,
Do you know about the use of cell salts as a supplement in treatment for pcs?
New here.
Thank you,
Julia