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.

CS

Hi CS,

what a terrific idea you have here. I'm happy to add some thoughts.

1. get to a neurologist if you haven't already. you might need PT or other treatments, don't be afraid to ask questions and if you are able bring someone with you who can push back on the doctor if you feel like you're not getting answers.

2. if you suffer from over stimulation wear sunglasses and ear plugs. This tip was shared with me here and made a world of difference.

Also, I've been struggling a lot with noise sensitivity and over stim even at home. Noises like lawnmowers, weed whackers (have no idea why a lawn in seattle needs to be mowed in Dec), big trucks, esp. garbage trucks (Ugh - the worst) all cause me a lot of trouble.

Yesterday my husband came home with a set of noise canceling headphones for me. Wow is all i can say. I think there are some really pricey ones made by bose but i didn't get those. I'm not sure how much he spent, all i can say is so far its worth it. I feel protected the same way i do with sunglasses on and it takes the ear plugs to a whole new level. I wore them all day today.

hope these are helpful to anyone out there.

I'll add be very cautious in everyday movement.

I've racked up a string of very painful injuries over the past four months to my knee, eye, forarm, pinkie, thumb, back, and now- neck.

Some have healed completely (thank God), nd other have a residue of stiffness. Plenty of rest, low stress, etc.

I've had little contact w/doctors due to insurance/financial situation, but hope you can do it.

I take exception to Marilee's recommendation of getting to a neurologist. While this may sound like the logical thing to do, Marilee was very fortunate to find a neurologist who has some level of understanding of Post Concussion Syndrome.

I have been seen by many neurologists. Only 2 out of at least 12 or 15 had a decent understanding of concussion. The wrong neurologist can start a medical record that can follow your quest for help and get in the way of future help. The riskiest neurologist in my opinion, is the one who works in a large multi-specialty group practice or HMO.

I am talking of the clinics of group that share access to medical records. If the family practice and ob/gyn and neurologist, etc. all have access to your complete records, the wrong label or diagnosis can block you access to further care.

In my case, one doctor diagnosed my as somatoform disorder. This can mean three different things. His symptoms are unexplainable, his symptoms are likely made up (psycho-somatic or hypochondriac) or we recognize his symptoms but can not reach a definitive diagnosis. The first two can leave you in limbo land or worse. The last can hopefully leave a chance at further diagnostic work.

After one doctor in my HMO diagnosed me as somatoform, my access to further help shut down. I spent my own money to get further diagnostic work but even then, my health care company (HMO) refused to even consider my private doctor's diagnosis.

So, if your are going to see a neurologist, get a referral to a neuro who has a true understanding of concussion. This will be a difficult but important task. If litigation is involved, do not do this wiithout the advice of your attorney.

My recommendation for early on is to learn to recognize your symptoms. The TBI Guide is a good startat helping you understand them. Telling a doctor that you don't feel right or feel dizzy or confused is too subjective. If you can better define the specific symptoms (but not in medical terms), the doctors can put a better picture together. Using medical terms creates a risk of being rejected by doctors who do not like patients doing self-diagnosis. The modern term for this is cyber-chondriac.

Instead, say:

I get stuck trying to find a simple word. I might know what I want to say but can't get the word to my lips. This has never happened to me before as often as it happens now.

The bright lights overwhelm me.

The voice of multiple people talking at the same time causes me to become disoriented.

If I try to watch TV, I can not pick out the dialogue from the common noises in the house like the heater fan, etc.

Try to define any specific situations where your symptoms get worse. Morning, at the mall, after trying to read, etc.

It also helps if you can bring a family member with you to explain what they observe. They can also take notes for later reference.

And, DO NOT SOUND LIKE YOU ARE WHINING or grumbling. A journal can help take the whine out of your presentation of symptoms to the doctor.

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.

yep, Mark you are completely correct. I was very fortunate, much more so than most, to be referred to a neurologist on the first try who at least knows what i'm dealing with. I also take for granted being in a good sized city where there are several choices. I'm glad that you edited my suggestion there.

There are so many helpful sections in the TBI guide, one in particular was about how to prepare for dr. visits. This has helped me to get what i need out of the appointments.

Wow- informative post by PCSLearner. Thanks for that.

1. It is natural to fear the unknown if you don't know what exactly is happening. Trust your body to be able to heal itself over time, however long that might be.

2. One time I sat outside in the grass for 1-2 hours and just spaced out. My brain felt less stressed afterwards. For me it helped to have these "spacing out" sessions. Too bad it's wintertime and too cold outside.




Mark - great post. I think it is important that the wrong diagnosis by the neurologist doesn't obstruct opportunities to receive new help. I just wish I read that earlier, like 2 weeks ago.

I would first say welcome to the forum. Read some of the posts in the hope that they help with your particular situation as each injury is distinct but you may have some similarities. You are not crazy and you are not alone.

For me, I spent the first few months in denial and trying to push through the injury. Pushing though is not an option: I found that out the hard way. It took me over six months to come to the conclusion that I had a severe injury.

For me, getting associated with a good medical team (neurologist, TBI specialist, and TBI rehab team) has helped. Beware of all docs as they are all not the same and you may need help finding someone with experience in TBI/PCS. I live near a major city and am lucky to have one of the nation's best hopsital systems available to me. Searching out the specialists and working with the insurance companies is very exhausting. Unfortunately it is something that must be done. Hopefully, you have a partner to help you with this process. Ask for help in this process.

The insurance process ..... wow what do I say besides roadblocks that can create overload. I still experience overload from talking to my insurance companies (IC). You must remember that IC are businesses seeking profits. Your medical expenses hurt their profits so IC will do things to protect their profits. IC make the process difficult so you will give up. Never take a denial of benefits without asking for an explanation.

The emotions are hard to handle. Read the TBI Guide as emotion is part of the process. I have done my share of crying and expect more to come in the future. Now, every day, I thank God I am alive and try to cope with this new life. Humour helps. Familiy and friends help. This forum helps.