Excellent idea Concussed Scientist! I can give some perspectives from a caregiver's point of view.

1) Treat a brain injury at least as gently as you would a torn ACL. It's scary watching someone you love struggle to do simple things and as a caregiver you want it to get better immediately. You wouldn't be surprised if a knee with a torn ACL buckled if walked on too soon, so give your person a break and give them time and space to heal.

2) Rest in the dark and quiet. Restrict your person's exposure to noise and light and things that require concentration (TV, texting, crowds, excited conversation, etc.). Entertainment should be limited to low stress, chatty, mostly one-sided conversations. For example, I would shut all the curtains, turn off radios and TVs, and talk with my daughter about something as trivial as our dog's activities for the day. This of course required some serious creativity on my part but it was soothing and undemanding for her.

3) Learn something about reflexology and/or accupressure. Gail Denton's "Brainlash" is a fantastic resource for this. These activities not only give your person some non-prescription relief from symptoms, but they make you feel like you're DOING something to help. There is nothing worse than standing there helpless as someone you love endures agonizing pain.

4) Keep a journal for your loved one. Resist the temptation to ask "how are you" 50 times a day. Just keep track of simple things like whether or not they are still cringing when someone empties the dishwasher, or how quickly or slowly they go up stairs, or the status of their sense of humor, or whether or not they show memory from yesterday or last week. These little indicators can really help you start finding patterns that exacerbate or alleviate symptoms.

5) No offense to anyone here, but one big rule of thumb is not to completely trust the brain injured person for information about themselves. Sometimes my daughter would say, "I had a great day, I feel good." Then the next day she would say, "Oh yeah, I went to the nurse's office with a headache twice yesterday it was awful." Or when she told the neuro, "I'm having two or three headaches a day," only to say at the next appointment, "I'm down to having two or three headaches a day, before I had a constant headache most days." She was seeing double for most of the year but didn't really realize it.
It takes a lot of energy for the injured person to describe how they are feeling in a way that the caregiver can understand. They simply don’t have the energy, or feel so bad, that they don’t provide the information you might need to help them make decisions. You must learn to observe. Those scary, glassy-eyed stares should be read as neon signs saying, “closed for business…temporarily shut down”. It’s tempting to try to get the person to re-engage, talk, whatever when that happens but that’s when they really need to rest.


6) You MUST advocate for your person. Research any symptoms that might respond to some kind of treatment (i.e. ambient vision, hormone/adrenal/thyroid issues, vestibular problems). It's up to you to research and find the right docs to help. You must also help them navigate through school or work or household responsibilities and especially help with personal relationships to reduce stress. Help them make decisions so that they don’t hurt themselves again (i.e. sledding is a bad idea right now, wear shoes with traction, eat your protein, etc.).

I'm sure there are about a million other things for caregivers to know. These are the biggest things I wish someone could have told me when we first started this journey.

One final note, it does get better. It sometimes takes a very long time, and your loved one may always have a lower threshold for headaches or other symptoms, but there is reason to hope. Doctors start saying: "It can take 3 months," then, "it will take at least 6 months," then they start talking in terms of a year or more, it is very scary and very frustrating.

I was obsessed with timeframes at the beginning. Here’s a little synopsis from what I've experienced and heard from other moms:

First 3 months are, frankly, terrifying as the cascade of cell death evens out and you start realizing that this is serious and it isn't going to go away in three weeks. We are used to people experiencing improvements from one day to the next following a serious injury. Brain injuries do not follow this pattern. There may be several good days followed by several bad. It’s unpredictable. Steep learning curve for caregivers and loved ones.
3-6 months: Things sort of maintain in a fairly terrible state. Lots of symptoms but you aren't as alarmed by them now and you're learning coping techniques. Hopefully by now you’ve seen a good doctor who can explain when you should go to the emergency room and when you should just be patient and what else you need to do.

6 months: Lots of people notice huge improvements in pain and cognitive symptoms around this point. Fatigue and feeling easily overwhelmed seem to be main culprits.

By one year most people seem to have chased down therapies for any treatable injuries and seem to have pinpointed triggers and "work arounds". At one year my daughter had very subtle issues. Now, at 15 months, she answered someone that she was a 9 out of a 10 when compared to before. That's a beautiful thing, isn't it?

This is an appropriate time for me to sign off the boards. I will probably be back to check in, but it's healthier for ME to move on to other things. I hope I have offered even one person a little help over the months. Thank you all for your support and suggestions. All the best to each and every one of you.

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

That every concussion is different, where some people get better at 6 months, some people never get better. I thought all concussions were the same and all treatments work on everyone, but I am an example that they aren't. Now I know it, and though I am still in denial (and always will be), I am living with it.

I am looking for help for my son. He has such an array of symptoms. Is there any assistance for him. He is 19. He had 5 concussions in 14 months. 2 bad ones. The first an accident at school and the last one was a car accident.
He was diagnosed a variety of different mental disorders. Please, is there anything to help him?

I am taking sevral herbs althogh some might be suspicious about it. I heard large dose of fish oil can help, just started. But I would recomend Brahmi (Bacopa Monnieri) for mental problems, it is unexpnsive and widely used in Ayurveda for mental problems and improving memory. Many years ago my EEG became normal for first time in my life after taking it... previously I was diagonesd with epilepsy, although never had an epileptic fit, doctors ar sometimes amazing. There is also one other product, Divya Medha Vati, just google it.... first it helped me a lot, I mean Brahmi,but I had another small concussion which added to previous, anyway, these herb, from my experinece, and what I heard, can make big difference.

Try to contact good homeopath. Try aslo acupuncture.... Important is avoid further injuries... and try to find natural way to treat his mental problems.... with minimum allopatic medicines.

Goods luck to you and your son.

A double blind randomized study was done in Australia about Brahmi. The NIH has the results.

" The results show a significant effect of the Brahmi on a test for the retention of new information. Follow-up tests showed that the rate of learning was unaffected, suggesting that Brahmi decreases the rate of forgetting of newly acquired information. Tasks assessing attention, verbal and visual short-term memory and the retrieval of pre-experimental knowledge were unaffected. Questionnaire measures of everyday memory function and anxiety levels were also unaffected."

What this basically says is that if the subject can learn the new information, the later forgetting of this information is lessened by the use of Brahmi.

It sounds like its value is on long term memory functions but not immediate or short term memory functions. Most with PCS struggle with short term and immediate memory functions.

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

Hi. I really hope you are doing well now!! Any change I your condition?

honestly this made me cry, thank you so much on behalf of everyone who read this and everyone who will read this!

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!!!