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)

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Originally Posted by PCSLearner (Post 723794)

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.

all I can say is THANK YOU......all the dr/hospital told me was it will just take a little while to get over this....now 6 weeks later the MAJORITY of the effects are gone but I am JUST now becoming able to think,and have stopped being dizzy 24/7
again THANK all of y'all for sharing your information

Well, I'll take the question back a little further, and say what I wished I'd known from the time of my accident:

1.) Even if you go to the ER, they may have no protocol to test for TBI or to tell you/your caregiver to be watchful for signs or symptoms. I got handouts about my whiplash and shoulder pain, but nothing about possible concussion.

2.) Doctors -- no, the entire medical community -- have very different levels of knowledge regarding TBI. I understand that they all can't keep up with every study and journal article out there, but it's angering to realize that many of them keep repeating the same old statements (like the "It will be better in 3 months/6 months/a year" "The majority of people with head injuries go back to normal in a few weeks" etc) LONG after evidence-based studies have shown that there isn't really a definitive basis for these statements.

3.) Research on TBI is very sadly lacking. And if you consider that the main drivers in the last couple of years have been the massive numbers of vets with TBIs and NFL players 'coming out' regarding their own injuries, it's clear we wouldn't even know this much.

4.) "Powering through" and "life as usual" are not good plans immediately following the discovery of a concussion. Rest, cutting back (at least) on job tasks or school work, evaluation of diet, hormones, inflammation, and getting positive support from friends and family are invaluable.

5.) Having said that, you will find out who your true friends and loved ones really are. And sadly, that may not be who you thought.

6.) You have to advocate for your own care, even with your doctor.

7.) You might be finding new things that you can't do months after the concussion, especially if you were also dealing with physical injuries that kept you from activities for a while.

8.) You may react to medications very differently after a concussion, including things like anesthesia. Tell every doctor that you've had a concussion, even the dentist and the eye doctor.

9.) You may react to a LOT of things very differently after a concussion. You may react to slight stresses by bursting into tears or getting angry (surprising yourself and people around you :p ). You may react to weather changes, or heat and cold differently. You might not be able to deal with places with a lot of sensory stimulation, like clubs, or shopping malls, or even museums.

10.) You may have health affects that you wouldn't have connected to a head injury at first, such as endocrine/hormone issues. Everything is connected, and part of the endocrine system is in the brain, after all.

11.) A neuropsych eval may not pick up your types of PCS symptoms, especially if they are executive function issues. I knew I was having difficulties, but when I finally had the eval, the psychologist told me that I was mainly depressed. My IQ had gone from "very superior" to just "superior," so my problems weren't that bad. :rolleyes: Luckily, though, after I told him that I could tell that the test wasn't picking up my problems, he sent me to a SLP, who gave me different tests that more clearly showed where my problems were. I also find that my SLP understands and has more insight into TBI/PCS symptoms and recovery than anyone else I've been to.

12.) It will change the way you look at everything.

Thank you for sharing that list. It will benefit a lot of newcomers for sure.

What is a SLP?

I think I figured out SLP, Speech-language pathologist. They are helpful for some but not everybody. Some need the help of a behavioral optometrist or similar specialist.

Lessons learned post MTBI PCS.

I wish I knew the following post-accident, post MTBI.
1. Doctors will tend to ignore invisible disabilities and try to tell you nothing is wrong. Fight for yourself. Go to Patient Relations if necessary. It took me one year with Kaiser before I got help with a Neuropharmacologist, physiatrist, etc.

2. Get a lawyer who handles disabilities. He/she can help you. I struggled for years losing jobs, getting fired, etc. and finally got on Disability. I was no longer able to focus, my short-term memory was bad, and my emotions were not well controlled. All caused big problems at work.

3. Learn all you can and hook up with a community such as this. Get into a support group. Don't let people tell you "you are fine".

4. DO NOT PLAN TOO MUCH OR PUT TOO MUCH ON YOUR SCHEDULE. GIVE YOURSELF PLENTY OF QUIET TIME. Being overwhelmed cognitively by driving, noises, demands, etc. aka "Flooding" is something I am currently dealing with.

5. Have more than one calendar.

6. See a Neuropsychologist and get a full battery of tests. Costs about $800 but well worth it. It pretty much assured me my Disability award.

7. Seek people who are supportive.

You can do this.
Grace F:D

A full battery of NeuroPsychological Assessment tests can cost up to the $4000 range. Insurance may leave you paying $800 as your share.

But, a good NeuroPsychological Assessment by a NeuroPsych who is not biased against mTBI will be worth it.

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Originally Posted by DannyT (Post 1178064)

Thank you for sharing that list. It will benefit a lot of newcomers for sure.

What is a SLP?

Quote:

Originally Posted by Mark in Idaho (Post 1178149)

I think I figured out SLP, Speech-language pathologist. They are helpful for some but not everybody. Some need the help of a behavioral optometrist or similar specialist.

Sorry for my delayed reply -- yes, Speech-Language Pathologist. I don't know if mine is unusual or not, but she does work with a lot of clients who have Acquired Brain Injury (not just traumatic, but also from chemo, surgery, tumors, celiac, hypoxia, etc.). She has helped me a lot with working with my executive function issues, actually, since issues I had in the very beginning with word-finding and things like that seemed to have resolved themselves. For example, we've developed some blank work forms that are tailored to my life, the things I need to do most days, my schedule, etc. She is also very interested in new studies and research concerning diet, supplements, inflammation, etc. She's also the first health-care provider to clue me in that some of the issues I've had with body temperature regulation are likely related to my mTBI.
I feel very lucky to have her. :)

Quote:

Originally Posted by Mark in Idaho (Post 1179441)

Yes, I also looked into NeuroPsych and was quoted $5600 by a provider in NYC. Who has that kind of money lying around for tests? :( Not even treatment. The results would be something I'd be bringing to my PCP if I were to participate with this provider. Madness.

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Originally Posted by lilyNYC (Post 1181758)

I forgot if you mentioned this, but have you sought legal help? If so, you might be able to get the other person's insurance to pay for neuropsych testing. That's how I was able to get mine paid for. You might have to push for it, though. And the neuropsychologist here would not even schedule the testing until they had the money in hand. They said they had been stiffed too many times by insurance companies who pre-authorized the testing, but then never paid.

If you have hired someone to work for you, make them earn that money! ;) Seriously, though, I'm not someone who goes to lawyers (the only other time was for my divorce), but I know I wouldn't have been able to deal with two insurance companies myself, while recovering from a head injury. Your lawyer can ask for a copy of the other driver's policy and see exactly what is covered -- that might help pay for missed work time for you, plus medications, doctor visits and tests, physical therapy, etc.

Shoot, no no no. I keep meaning to find help on this. Thank you for reminding me. I'm actually applying for FMLA so hopefully this will help with any lost wages if I am approved.